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Bill’s blessing in disguise: ‘Cancer saved my life’

William Blue did not wish for cancer but is now thankful he had it. Bill’s diagnosis, at age 56, was his reckoning – a life-changing experience that may have saved his life. In June 2020, nagging back pain sent Bill to his local doctor in Perry, Florida.

“Kidney stones,” he thought. Probably no big deal. Go to the doctor, take some medication, and it will likely pass in weeks.

Instead, Bill’s doctor told him he had a tumor in his kidney – cancer.

A month later, Padraic O'Malley, MD, a urology surgeon at UF Health, recommended removing Bill’s right kidney to get the entire tumor. The cancer was in stage 3. The fourth and last stage is when cancer metastasizes and becomes terminal.

“I woke up from surgery without any pain. I can’t imagine how it could have gone any better,” Bill said. “I don’t believe anyone has ever been treated more professionally and kindly than how Drs. O’Malley and [Jonathan] Chatzkel and their entire staff treated me. They made a naturally stressful experience much more pleasant and stress-free. I recovered more quickly than most patients do.”

To complement surgery, O’Malley suggested that Bill participate in an innovative immunotherapy clinical trial offered at UF Health. The trial sought to improve Bill’s long-term recovery and destroy any potentially remaining cancer cells.

Immunotherapy is a relatively new treatment that activates a person’s natural immune system to fight cancer cells. The body’s immune system is in a daily battle to protect us from viruses and diseases and to keep us healthy. Immunotherapy drugs supercharge the body’s innate immune response to cancer cells, identifying them as invaders and setting out to destroy them. The therapy is often personalized for the individual based on his/her specific tumor and its precise location.

Bill received one immunotherapy treatment prior to surgery and three afterward. Most people who receive this treatment regimen return to their normal activities within 4-6 weeks of their surgery, but Bill was back to work in about three weeks.

In some cases, immunotherapy can have fewer side effects than other cancer treatments such as chemotherapy or radiation, because it only targets the immune system. Common side effects such as hair loss are avoided and patients experience far less impact on their day-to-day lives, meaning their quality of life is relatively unaffected.

“At the same time, immunotherapy works better than chemotherapy against certain tumors,” O’Malley said.

Bill continued to recover from his bout with cancer when a second round of life-altering news hit. His remaining kidney was in trouble. It had kidney disease.

Concerned that he may lose that kidney as well, Bill made drastic changes to his diet and lifestyle.

The recommended kidney-healthy diet stresses fruits, vegetables and limited red meat. Bill took that to heart and became vegan, eliminating meat, cheese and all animal products from his diet. In one year, he has lost 70 pounds – dropping from 310 to 240 pounds.

“I have never felt better in my life,” Bill said. “I tell people cancer saved my life.”

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Christina’s Liver Transplant Journey

The first things Christina Hall noticed were her yellow eyes. Christina Hall and her husband, John

Typically, Christina’s eyes are a deep brown. But one morning in late August 2020, she awoke to find the whites of her eyes a distinct, sticky-note yellow.

At first, she tried to shrug it off, attributing it to not sleeping well the past couple of days. (“My sleep apnea can keep me up for 24 hours easy,” Christina said.)

But over the next few days, her eyes became yellower and yellower. Then, so did her hands — all the way down to tips of her fingernails.

Toward the end of the week, Christina video chatted her sister. A conversation about their day-to-day was almost immediately cut short.

“Oh, God,” her sister said. “What is wrong with your eyes?”

“I don’t know,” Christina admitted. “I look like a werewolf.”

In terms of bad things that can happen to you, acute liver failure is fairly rare. Approximately 2,000 cases occur each year in the United States; about 1,970 more than shark bites and thousands less than heart attacks. Notoriously easy to misdiagnose, the disease often occurs in younger people, commonly linked to an overdose of medicine or poisoning.

But when she’d had enough of the yellow and went to the ER in her hometown of Jacksonville, Christina’s bloodwork showed no overdose and no poisoning. In fact, physicians initially wrote it off as a GI problem, scheduling her for a colonoscopy days later.

“I didn’t feel great,” Christina said. “But I also didn’t feel terrible. So after I was discharged, I assumed things would get back to normal.”

The suddenness of acute failure in someone young, healthy, with no prior existing conditions can make it difficult for health care teams to identify the signs. Other than slight discomfort in her stomach, Christina had no pain, side cramps, fevers or headaches.

“When it comes to liver failure, time is crucial – 24 hours can make all difference between life and death,” said Thiago Beduschi, MD, chief of the division of transplantation and hepatobiliary surgery and director of UF Health’s abdominal transplant program. “It all happens very fast, and you need to act quickly.”

Just days after her ER visit, Christina’s condition nosedived — seemingly out of nowhere.

“She came home, and things were mostly OK,” said John Hall, Christina’s husband. “She was still having trouble sleeping. But we didn’t know how much things had progressed until she dropped our daughter off at school.” Christina Hall and her family around the Christmas tree

After Christina dropped Gabby off, she was feeling weary. “I hadn’t had a good night’s sleep in ages at this point,” she recalled. She came home and sat down on the couch to take a nap.

After that, her memory is blank.

John characterized his wife as joyful and the heart of his family. She was as funny as she was punctual. So, when 3:00 p.m. rolled around and Christina never showed up to pick up her daughter, John knew something was very, very wrong.

“I came home and she was asleep on the couch,” he said. “And she couldn’t stay awake.”

Christina slept restlessly, sitting up when he spoke her name only to slump back down. Despite the cool temperature inside their home, she complained of being hot.

John called 911.

This time, their local hospital conducted a different series of tests, including one that indicated her bilirubin levels were 30 times what a normal range should be. The rapidly spreading yellow effects of jaundice were indicative of sky-high levels of bilirubin — and pointed to the liver as the critical culprit.

Christina was quickly transferred to UF Health Shands Hospital, where John watched nurses administer a COVID-19 test and different medications.

“At this point, I still kind of had hope,” John recalled. “I had hope she’d get a pill, or something, and we’d be able to walk out of there and drive back home.”

Then, Beduschi walked in and said four words that changed John’s idea of the next few months.

“She needs a liver.”

After that, the information came fast and furious. John scribbled as quickly as he could, trying to keep up. She was placed on a transplant list in case nothing else worked. But nothing was working. His wife had been perfectly healthy. Why was this happening?

“It’s hard to tell what triggers an immune reaction; this can happen for a number of reasons,” said Ali Zarrinpar, MD, PhD, an associate professor in the division of transplantation and hepatobiliary surgery at the University of Florida. “But it’s this very process that leads to liver injury and liver inflammation. For autoimmune cases, the triggers can be unpredictable.”

Every transplant patient takes immunosuppressants after their procedure to prevent organ rejection. For a case like Christina’s, where the acute liver failure was likely due to an autoimmune response, physicians needed to contend with a higher risk of inflammation and immunological response post-op. Autoimmune diseases are also more prevalent in women.

“It’s counterintuitive, because acute liver failure generally happens to previously healthy people,” Zarrinpar said. “These are situations where the family is really taken aback. Most of the time it comes as a big surprise.”

It can even take physicians by surprise.

“If they're at another hospital that doesn't see processes like this very frequently, it may take them some time to really figure out what's going on,” said Beduschi, Christina’s liver transplant surgeon. “Having a high-volume liver transplant center is essential, because the diagnosis needs to be made rapidly. The transplant needs to be done rapidly. If not, there are consequences.”

Under Beduschi’s guidance, the abdominal transplant program has become one of the busiest transplant programs in Florida. The majority of patients on the waitlist receive a liver transplant within 30 days, almost 80% faster than the national average. And, despite seeing some of the most acute cases, the mortality rate for individuals waiting on a liver transplant is among the lowest of all transplant centers in the nation.

Acute liver failure patients in particular rely on the rapidity of effective transplant for their survival.

“When done quickly and correctly, the turnaround can be amazing,” Beduschi said. “We transplant our patients quickly because, in cases like this, speed is of the essence. Then, oftentimes, the recovery for these patients is quick, too, because they do not have chronic problems and were healthy before.”

Physicians located a liver on Saturday, two days after Christina was transferred to UF Health. Less than 24 hours later, Christina underwent her liver transplant with the first organ available, such critical was her condition. Afterward, she took longer than expected to wake up.

John sat by her side, worried, while the nurse adjusted her medications.

“Have you tried talking to her?” Latonya asked.

“She’s not waking up,” John said, looking at his Christina, asleep under a web of wires and electrodes.

“But I mean, have you tried talking to her — really talking to her? She’s right here! Just talk to her,” she said.

So John did. And when he felt Christina squeeze his hand, he pulled out his phone and played a song: “You Know My Name” by Tasha Cobbs.

“You know my name,” John sang. “You know my name.”

He was in tears. But for the first time in days, they were happy ones.

As Christina’s time in the hospital wound down, John didn’t leave her side. Not through her many tests, nor through her multiple rounds of physical therapy. Now that they’re back home, not much has changed. His support, Christina said, is what’s helping translate her operative success into a long-term recovery.

“I couldn’t have done it without him,” she said. “Thinking of my children, family, friends and having John here with me, are what made me feel like I was going to get better after all.”

As time passes, the incident is almost like a distant memory — save for the scar on Christina’s abdomen, shaped like an “Mercedes logo” and a reminder of a specific incision used for when a liver is especially large.

“The liver they had available was big, so I guess that's good,” Christina laughed. “But I'm assuming a big liver does twice as good of a job!”

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Understanding your risk for pancreatic cancer

In 2021 alone, an estimated 60,430 Americans will be diagnosed with pancreatic cancer in the U.S., and nearly all will die from the disease. A pancreatic cancer diagnosis can bring a heightened level of anxiety as typically patients do not present with overt symptoms until the disease has progressed. With that said, it may be helpful for people to understand the risk factors for this disease.

Sherise Rogers, M.D., is an assistant professor in the UF College of Medicine and an oncologist who specializes in treating pancreatic cancer.

“Knowing your family history will help you understand your individual risk for not only pancreatic cancer, but many types of cancer as it may be due to a hereditary cancer syndrome,” Rogers said.

Hereditary cancer syndromes are caused by specific gene mutations that can be passed down from our parents. These gene mutations may be associated with not only pancreatic cancer but many other cancers. A doctor or genetic counselor can order blood testing to look for these gene mutations.

Examples of some hereditary cancer syndromes that are associated with pancreas cancer are as follows:

  • Hereditary Breast and Ovarian Cancer Syndrome, caused by mutations in the BRCA1 or BRCA2 genes
  • Hereditary breast cancer, caused by mutations in the PALB2 gene
  • Familial atypical multiple mole melanoma (FAMMM) syndrome, caused by mutations in the p16/CDKN2A gene and associated with skin and eye melanomas
  • Familial pancreatitis, caused by mutations in the PRSS1 gene
  • Lynch syndrome, also known as hereditary non-polyposis colorectal cancer (HNPCC), most often caused by a defect in the MLH1 or MSH2 genes Peutz-Jeghers syndrome 

Only 15% of patients with pancreatic cancer actually have a hereditary cancer syndrome. This means that the majority of pancreatic cancer cases are not associated with a known gene that researchers have found thus far. If you have two or more members of your family who are first-degree relatives with pancreatic cancer, you may be at risk for familial pancreatic cancer, which accounts for another 10% of new cases. 

The rate of pancreatic cancer increases with age, with 70% of cases in people older than 65. However, it can be diagnosed at any adult age. Men have higher rates of pancreatic cancer than women. Black patients are diagnosed at higher rates than white patients. Chronic pancreatitis, pancreatic cysts, H. pylori infection, hepatitis viruses, cystic fibrosis and some individuals with newly diagnosed diabetes are at higher risk for pancreatic cancer.

Cigarette smoking is strongly linked to many cancers, including pancreatic cancer. Chemical and heavy metal exposure is also associated with this diagnosis. Gum disease also increases one’s risk. There are steps you can take to reduce the likelihood of developing pancreatic cancer: avoid foods high in saturated fats, stop smoking, maintain a healthy weight, increase physical activity, avoid heavy alcohol use and get regular dental check-ups and cleanings.

One of the most common difficulties associated with pancreatic cancer is that many patients do not notice symptoms early on. It is imperative that patients stay alert for signs to receive an earlier diagnosis and treatment. The most common symptoms of pancreatic cancer are:

If you believe you are of higher risk or have concerning symptoms, please speak to your primary care physician about whether you should have screening for pancreatic cancer and/or testing for genetic hereditary syndromes. Learn more about our pancreatic cancer program at UF Health on our website.

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A Devastating Diagnosis with a Miraculous Recovery

The following events occurred between March 2017 and June 2018.

Growing up, Kathy Karam, of Ocala, never intended to become a nurse. But when her husband, Rich, developed a sudden illness, she became his caregiver without hesitation.

On March 3, 2017, Rich played a game of softball, ate lunch and, abruptly, experienced stomach pain. Moments later, Kathy found him lying on the floor and rushed him to a nearby emergency room. After a series of tests, doctors believed that Rich suffered from gastritis, better known as inflammation of the stomach lining, or peptic ulcer disease, better known as stomach ulcers. And while both gastritis and peptic ulcer disease are not lethal and are easy to treat, something more ominous was looming.

Their recommendation?  Bed rest and a call to his gastroenterologist the following week.

Upon examining him, Rich’s gastroenterologist ordered a battery of tests for completion by the end of the day. Before Rich and Kathy could call the following day for the results, Rich’s physician called them. Rich Karam holding his grandchild.

“He said, ‘Get him to the hospital immediately. They’re waiting for him. He has dissection of the superior mesentery artery,’” Kathy said.

Dissection of the superior mesentery artery, or SMA, prevents blood from traveling to the bowels, which can result in dead and dysfunctional bowels. The results can be catastrophic.

When Rich arrived at the hospital, doctors placed a stent in the SMA to restore blood flow to his bowels and gave him heparin, a blood thinner, to prevent blood clots.

Despite the procedure, Rich’s stomach pain persisted. Five days later, upon a second examination, physicians told Rich and Kathy the stent had failed.  It had occluded, meaning that it clotted and flow was once again limited to the small bowel.

Hopes fading, and at their wits’ end, Rich and Kathy were referred to UF Health Shands Hospital in Gainesville.

Kathy and Rich had only heard of UF Health in passing, but they were familiar with the concept of an academic health center. Originally from Massachusetts, Kathy and Rich both knew that academic health centers meant access to research, technology and advanced expertise.

At UF Health, doctors reviewed Rich’s medical record and spoke frankly with Kathy.

“They said, ‘We’re going to have to get the team together because we don’t know if we’re going to be able to save his life,’” Kathy said.

Thomas Huber, M.D., Ph.D., the chief of vascular surgery and endovascular therapy at the UF College of Medicine, performed Rich’s first bypass surgery to restore flow to his small bowel from the aorta to the SMA. Once again, Rich was prescribed heparin, only for doctors to learn that he was allergic to the drug. Instead of thinning Rich’s blood, the drug did the opposite and contributed to blood clotting — a very rare allergic reaction known as heparin-Induced thrombocytopenia. Rich’s bowels continued to be deprived of oxygen-rich blood flow, resulting in dead intestine.

Then, another hurdle emerged: sepsis.  

“My son was here, we called the girls and we said, ‘You gotta come down, we’ve got to decide what we’re going to do because they don’t know if dad’s going to make it or not,’” Kathy recalled. “They came down and we thought about letting him go, but the doctor took us in an office and said, ‘This is a treatable disease, but it’s going to be a long road.’”

A second bypass was performed by UF Health acute care surgeons Frederick Moore, M.D., FACS, MCCM, and Martin Rosenthal, M.D., FACS, director of the UF Health Abdominal Wall Reconstruction and Intestinal Rehab Program, along with a team of clinicians. After an arduous and complex procedure, Rich’s incision was kept open because closing the abdominal wall was fraught with danger.

Kathy said, “They (the physicians) explained everything to us. The bowels were like a hard ball and they couldn’t separate them (referred to viscera en bloc). Every time they tried to, the bowels would shred, so they had to leave him open.”

Unable to eat or go to the restroom, Rich was connected to a number of tubes for medication and bile collection to refeed downstream in his distal GI tract. Rich recovered in the intensive care unit for just over seven weeks.

As Rich healed, doctors performed a skin graft to cover his open wound by taking skin from Rich’s upper thigh and stretching it to cover the opening after meshing it to minimize tissue loss from his leg. Doctors also placed Rich on total parenteral nutrition, or TPN, which feeds nutrients to the body intravenously.

Later, Rich was sent to rehabilitation closer to home in The Villages® for five weeks.

Rich Karam holding his grandchild.Like many people who have survived a serious medical condition, Rich required at-home care — which can be daunting, and comes with its own learning curve. Kathy learned how to take care of her husband’s wounds and administer his many medications.

On top of many caregiver tasks, Kathy learned how to change Rich’s fistula bag, a pouch used to collect bile.

Over the course of many months in recovery, Rich experienced infection and inflammation of his heart, known as endocarditis, which required two type of antibiotics.

Rich and Kathy made another trip to Gainesville when doctors discovered that Rich had a perforated gallbladder. He was readmitted to the hospital, and his care team discovered he had low blood pressure.Then, another roadblock appeared.

“The hardest part was not knowing from one day to the next was what it was going to be like,” Kathy said. “I never knew what I was going to deal with.”While Rosenthal and his team worked to regulate Rich’s blood pressure, Kathy allowed herself to cry in the hallway. The recurrent health problems and uncertainty were taking their toll.

Once Rich recovered after the previous series of surgeries and infections, Rosenthal discussed the next integral step in Rich’s long-term health: abdominal reconstruction.

On Feb. 15, 2018, they celebrated two special occasions: Kathy’s birthday and Rich’s abdominal wall reconstruction. Rosenthal and his team were able to take Rich’s fistulas down and break up the extensive scar tissue in his abdomen. Then, in a second operation, doctors reconstructed Rich’s large loss of large hernia through a complex surgery. In addition, Rosenthal removed Rich’s gallbladder. It was a day to rejoice as Rich had all of his skin graft and tubes removed. Then, in June 2018, Rich was taken off TPN, becoming free of pumps and lines, and was able to begin eating solid foods.

Although they’re glad to no longer be in an out of doctor’s offices — Kathy and Rich were able to spend only a few weeks at a time at home during Rich’s medical journey — they’re grateful for the support they received from their health care team.

“The teams up here at UF Health Shands not only treat the patient, they treat the whole family,” Kathy said.

In 2019, Kathy and Rich celebrated their 50th wedding anniversary — hospital-free.

“I just went along for the ride,” Rich said, reflecting on everything they had been through. “She was my rock.”

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Recurrent Breast Cancer Leads to Breast Reconstruction

Performing a simple task like putting a box on a shelf shouldn’t be a life-changing event. But when the box fell and hit Diane on her right breast, trouble began. Diane, who had breast cancer 24 years before, noticed a large bruise forming on her previously reconstructed breast.

A few weeks later, Diane scheduled a mammogram. She followed the advice of the radiology technician to have the bruise examined further. An ultrasound revealed the bruise was a hematoma with a mass located behind it. Doctors drained 16 cubic centimeters of blood out of the hematoma to biopsy the mass, and discovered a pea-sized malignant tumor on the same breast she had cancer in two decades prior.

Diane went to Noah Prince, M.D., a plastic surgeon at UF Health Plastic Surgery and Aesthetics at Halifax Health, for breast reconstruction. She chose to see Prince because she was told he was the best in the Daytona Beach area.

“Dr. Prince is absolutely great,” Diane said. “He sets you at ease and is very down to earth. He wants to make sure everything is fine. I can’t tell you how pleased I am with him.” She especially appreciates his sense of humor, which she said is comforting for her during her appointments.

After meeting with Diane, Prince determined the best first step toward reconstruction would include placing an expander in her right breast, since her skin had been affected by radiation years ago. Without an expander, Diane’s skin would not have enough stretch and blood flow to be able to accommodate an implant in the future.

On Jan. 28, Diane underwent a mastectomy, as well as the first stage of her reconstruction with Prince, in the same surgery. Prince continues to expand her skin on a weekly basis in order to protect her skin, and perfect her breast’s volume and shape. In addition, Diane now gets chemotherapy every three weeks. Prince will continue the reconstruction four weeks after she finishes chemotherapy, to make sure her body has the ability to heal from a second surgery. Chemotherapy can block cells from reproducing to heal surgical wounds.

“Breast reconstruction is a journey,” said Prince. “It often takes time to rebuild women to the point where they feel they are whole again, and every time they look in the mirror they do not notice what they are missing, but instead what they have overcome.” He offers multiple forms of reconstruction and revision, each tailored to the individual needs of his patients, and continues to expand the capabilities of reconstructive plastic surgery in the Volusia County area.

But Diane is an internal optimist. When preparing for her mastectomy, she had a feeling that everything would be fine. Since she has been through this process before, she was able to grasp everything. She knew what to expect.

“It’s been a long journey for 24 years,” Diane explained. “I thought everything was fine, but now I start the journey over again.”

Diane still gets emotional about the diagnosis, but she credits Prince for making her feel comfortable and at ease throughout her time with UF Health.

When her treatments come to an end and her reconstruction is completed, Diane said she is most excited to put her energy back into volunteering in her community, starting with the charity where she serves as president.

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Sickle Cell Loses and Sydnee Wins

“I’m active, a little bit crazy, but I’m mostly fun,” Sydnee Murphy, 8, said when asked to describe herself.

Sydnee is a second grader at Westside Elementary School and her favorite activities are practicing basketball, football and gymnastics. She also loves to read, especially “The Boxcar Children” children’s book series. 

“I also have 115 AR [Accelerated Reading] points and the goal for the entire year was 100 so I am already ahead,” Sydnee said.

A seemingly normal life from the outside, Sydnee is an 8-year-old living with sickle cell anemia, a disease that causes her red blood cells to contort into a sickle shape, leaving her body with a shortage of healthy red blood cells.

Sydnee specifically suffers from hemoglobin SS disease, the most common and severe type of sickle cell disease. Hemoglobin SS disease occurs when a child inherits copies of the hemoglobin S gene mutation from both parents, and Sydnee has been living with it since she was three months old.

However, Sydnee is doing more than battling this disease — She is using her voice to spread awareness.

In September 2020, during National Sickle Cell Awareness Month, Sydnee thought of a creative way to share her health journey and express gratitude.

“I decided to make videos and share what sickle cell had meant to me and to thank the nurses and doctors,” Sydnee said.

Sydnee’s mom, Dasaisha Murphy, recorded a video of Sydnee every day for 30 days. Her goal was to bring awareness to her mom’s Facebook friends about the sickle cell signs and symptoms, and provide a look into her everyday life.

At 6 months old, Sydnee started having “crises,” or painful episodes that block small blood vessels that carry blood to different parts of the body.

Crises come at random times. One year, Sydnee was admitted three times in four months. Before 2020, the crises came every couple of years.

“Every year is unexpected,” Dasaisha said. “Sometimes she has gone an entire year without any hospitalization.”

Sydnee says while she is in the hospital for periods of time, she tries to act like she is at home to feel comfort.

Sydnee goes to UF Health Shands Children’s Hospital every three months. Physicians and nurses test her blood, check her temperature and, on rare occasions when she is not feeling her best, send her to the infusion room to receive IV treatments.

“In some of the videos I talked about blood crises, medicines I take and things like that,” Sydnee said. “People were curious and would post questions in the comments for me to answer.”

In a matter of days, the videos had received over 100 likes and countless comments. The Murphy family took a picture wearing red sickle cell ribbon pins and posted it online.

“After I got out of work, I had a lot of co-workers wanting to buy our pins,” Dasaisha said.

The Murphys created a model of the metal pin to sell for donations: a maroon ribbon representing the sickle cell awareness emblem. The ribbons sold from $1 to $2 and the family created a GoFundMe page for anyone who wanted to donate directly to the cause. 

The family ended up selling 100 ribbons and raising over $1,000.

Sydnee chose to donate all the funds she raised to the Child Life Program at UF Health Shands Children’s Hospital. She asked for a wish list from Tramekiah Coleman-Spradley, a volunteer services coordinator for the Child Life Program, and spoke with Amy J. Wegner, director of the Child Life Program, to facilitate all of their donations.

“I wanted to give back to all of the nurses and doctors for all that they have given me,” Sydnee said.

The Murphy family purchased markers, games, tie dye kits, coloring books and other various toys.

Dasaisha described a time a few years ago when Sydnee was released from the hospital after one of her crises. One of her doctors made a replica of how sickle cell works in the blood stream with macaroni as the sickle cells and buttons as regular cells in a glass jar.

These kid-friendly explanations are an example of why the Murphy family holds many UF Health staff close to their hearts. Anne Dove, R.N., sickle cell and hemophilia nurse coordinator, has been Sydnee’s nurse since she was 3 months old. Dove joined this division in October of 2010, but has worked as a floor nurse at UF Health Shands Children’s Hospital since 1993.

During January of this year, Sydnee had sickle cell in her bone and could not walk for two weeks. She would hop around the house, trying to fight the pain away.

“Watching her go through this and how she doesn’t let herself get down is so amazing,” said William Murphy, Sydnee’s father. “We can look at her and say nothing in our lives compares to what she goes through.”

The Murphys have a “one team” mindset, according to Dasaisha. Sydnee’s older sister, Da’shani, even takes care Sydnee when she is not feeling well.

“Spreading awareness is important so people know how hard sickle cell patients fight,” Sydnee said. “This is so they know how strong we are. We need to be brave.”

Sydnee is a firm believer that when you put your mind to something, you can achieve anything.

“Even [if] you don’t feel so strong, you have to feel strong in your heart,” Sydnee said. “When sickle cell loses, Sydnee wins."

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Un paciente recupera el movimiento del brazo gracias a una cirugía plástica de UF Health

Lee esta historia en Ingles. 

Durante seis años y sin ton ni son, Baltazar Carrillo (de 64 años de edad) sufrió un dolor agonizante en los brazos y las piernas.

“No existía pastilla que aliviase el dolor” dijo Carrillo.

Carrillo, que vive en Sanford, disfrutaba cortando el césped, viajando, y ayudando a sus cinco hijos ya mayores, hasta que el dolor llegó a ser insoportable las 24 horas al día.

En abril de 2019, se sometió a una cirugía de la espina dorsal a la altura del cuello, con el intento de aliviar el dolor de los brazos. Pero cuando despertó de la cirugía, ya no podía mover el brazo izquierdo.

Carrillo rompió a llorar delante de su hija.

“Cuando vi cómo estaba mi brazo, me pregunté ¿qué voy a hacer yo ahora?”  dijo Carrillo “ya no me quedaban esperanzas”.

Carrillo estuvo 15 días recuperándose en el hospital, con la esperanza de volver a sentir el brazo.  Después de someterse a una segunda cirugía, con el intento de descomprimir los nervios del cuello, no volvió a recuperar el movimiento del brazo. Su neurocirujano le dijo a Carrillo, que le referiría al mejor cirujano plástico de UF Health, el Cirujano Harvey Chim, M.D., FACS (Miembro del Colegio de Cirujanos Norteamericano), especialista en cirugías de manos y de nervios periféricos.

En octubre de 2019, Carrillo viajó a Gainesville para su primera consulta con el Dr. Chim.

“Mi primera impresión (del Dr. Chim) fue que parecía saber lo que hacía. Me pidió que moviese la mano, y yo la sentía, pero era incapaz de moverla” dijo Carrillo.

Carrillo había sufrido una lesión del plexo braquial, que son un grupo de nervios que se extienden desde la médula espinal en el cuello y bajan por el brazo. Estos mismos nervios controlan el movimiento y la sensación de los hombros, los codos, las muñecas y las manos. En el caso de Carrillo, había una parálisis del hombro y el codo.

El Dr. Chim evaluó la estimulación del brazo de Carrillo realizándole una electromiografía, que es un procedimiento que examina la función de los nervios y la manera que alcanzan los distintos músculos, para detectar si existen daños en los nervios.

El. Dr. Chim decidió que el procedimiento con más probabilidad de devolverle el movimiento al brazo sería una neurotización (cirugía de transferencia de nervios). La cirugía transferiría nervios sanos y prescindibles y los desviaría para restaurar el funcionamiento de los nervios dañados. En el caso de Carrillo, el Dr. Chim transferiría una rama de nervios a los tríceps izquierdos hasta el nervio axilar, para devolverle la función al hombro.  También transferiría arte del nervio ulnar, responsable de la función de las manos, hasta los bíceps para devolverle la flexión al codo. La cirugía se realizó en diciembre de 2019.

Al pasar tres meses de la fecha de la cirugía, Carrillo empezó a recuperar el movimiento del hombro y al pasar un poco más de un año, recuperó el funcionamiento total del hombro, con una flexión fuerte del codo. Ya puede volver a mover la mano y flexionar la muñeca para poder llevar cosas en la mano.

“Estoy tan contento con la cirugía que realizó el Dr. Chim” dijo Carrillo.  “Muchísimas gracias a Dios y al Dr. Chim”

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Patient Regains Arm Movement with the Help of UF Health Plastic Surgery

Read this story in Spanish. 

For six years, Baltazar Carrillo, 64, suffered from agonizing pain in his arms and legs without rhyme or reason. 

“[There was] no pill that could make my pain go away,” Carrillo said.

Carrillo, of Sanford, enjoyed cutting his grass, traveling and helping his five grown children until the pain became insurmountable, 24 hours a day.

In April of 2019, Carrillo had spine surgery in his neck to try to correct the pain in his arms. But when he awoke from his surgery, Carrillo couldn’t move his left arm.

Carrillo broke down in tears in front of his daughter.

“When I saw my arm, I was like, what am I going to do now?” Carrillo said. “I didn’t have any hope.”

For 15 days, Carrillo recovered in the hospital in hopes of regaining sensation. However, even after a second surgery and attempt to decompress the nerves in his neck, he did not regain movement.  His neurosurgeon explained that he would send Carrillo to the best – UF Health board-certified plastic surgeon Harvey Chim, M.D., FACS, who specializes in hand surgery and peripheral nerve surgery.  

In October of 2019, Carrillo made the trip to Gainesville for his initial visit with Chim.

“My first impression [of Dr. Chim] was that he knew what he was doing. He asked me to move my hand, and I was able to feel it but it wasn’t moving,” Carrillo said.

Carrillo suffered from a brachial plexus injury, brachial plexus being the group of nerves that branch out from the spinal cord in the neck and travel down the arm. These nerves also control movement and sensation in the shoulder, elbow, wrist and hand. For Carrillo, he experienced paralysis of the shoulder and elbow.

Chim assessed Carrillo’s arm stimulation by performing an electromyogram, a procedure that examines the function of nerves supplying different muscles, to detect nerve damage. 

Chim decided that nerve transfer surgery would give Carrillo the best chance at regaining movement in the arm.  The surgery would take healthy, functioning expendable nerves and redirect them to restore function to injured nerves. In Carrillo’s case, Chim would transfer a nerve branch to his left triceps to the axillary nerve in order to restore shoulder function. Chim would also transfer part of the ulnar nerve, which supplies hand function, to the nerve to the biceps in order to restore flexing of the elbow. Carrillo’s surgery took place in December of 2019.

Three months after the surgery, Carrillo started to regain movement in his shoulder and, a little more than one year later, has recovered full function in his shoulder and strong flexing of his elbow. He can move his hand, bend his wrist and carry items.

“I’m just so happy with Dr. Chim’s surgery,” Carrillo said. “Thank you so much to God and Dr. Chim.”

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Little Fighter: Julianna Driggers’ Battle with Neuroblastoma

“Make sure you fight." 

Jennifer Driggers uttered those four words to her daughter the day after Julianna was diagnosed with neuroblastoma, an aggressive form of cancer. 

It was March 2017 and Julianna, known to her family as Jules, was only 5 years old. She was full of life — a true spitfire as her family would say. After she started having chest pain, Julianna was sent to UF Health Shands Children’s Hospital for tests. At the beginning of March, an X-ray showed a concerning spot on her chest. By the end of March, CT scans revealed a large tumor in the back of her chest cavity. Her parents, John and Jennifer, were introduced to Joanne Lagmay, M.D., director of the pediatric solid tumor program at the children’s hospital, as well as pediatric oncologist Brian Stover, M.D., and pediatric oncology nurse practitioner Lauren Staley, APRN. 

“We knew there was a solid tumor, but we still did not have definitive answers on how serious it was,” Jennifer said. “The concerning part was that it seemed to be so close to Julianna’s spine, and it appeared to be trying to grow back into her spinal cord.”

Because of the tumor’s location, there was a chance that Julianna could end up paralyzed, but an MRI revealed that the tumor was not compressing her spinal cord. That was a good sign.  

Saleem Islam, M.D., UF Health’s chief of pediatric surgery, did a biopsy on the tumor. Because of the tumor’s location in Julianna’s thoracic cavity, Islam was one of a few pediatric surgeons in Florida able to do an intrathoracic procedure with scopes, which is what she needed for the biopsy.

“Even though we had to go through this, the timing was working out by giving us the best experts. We were very thankful to be given the best of the best,” Jennifer said. 

A few days after the biopsy and after a deeper look into Julianna’s scans, the doctors confirmed that she had stage 3 neuroblastoma. The tumor was in the chest cavity behind her heart. It was large and wrapped around her aorta. It went through her diaphragm and extended into her abdominal cavity. It was on top of her left kidney.

“It was so overwhelming as parents,” Jennifer said. “That was our baby. And at that point, we didn’t know what to expect. There were lots of emotions running through us.”

Julianna was admitted to an isolation room on the pediatric hematology/oncology floor of UF Health Shands Children’s Hospital.

“I remember Dr. Lagmay reaching out to put her hand on my shoulder,” Jennifer said. “I started crying, and I remember her telling me that we’re going to walk through this together. She assured me that she and her team would come up with a plan to give Jules the best possible chance to survive.” 

Julianna did not know exactly what was happening.

“She saw her family continuously crying, and she just kept apologizing to us for her diagnosis,” said Jennifer. “I told her that, ‘If you have to go through this, make sure you fight.’” 

Those words presented other challenges because Julianna actually started to “fight.” Everyone who came into her room to provide care was greeted with punches, kicks and screams to get out. With the help of child life specialists, Julianna was able to learn more about the medical equipment that was connected to her and what the nurses and doctors would be doing during her treatment, which helped ease her nerves.

Julianna began an 18-month treatment plan, which included four rounds of chemotherapy with different types of medications. After her second round of chemotherapy, she went through apheresis, a procedure used to collect stem cells from her blood, with the goal of harvesting the stem cells for a future transplant. In July 2017, Julianna’s tumor had shrunk by 23% and was no longer going through her abdominal cavity. Islam removed almost all of the tumor during surgery, leaving only the parts that could not be taken out safely. A few weeks later, Julianna returned to the children’s hospital for one more round of chemotherapy. In September, she went in for a bone marrow transplant in which her own stem cells were infused back into her body.

Post-transplant, Julianna’s road to recovery would require another 28 days in the Children’s Hospital. 

“The first eight days after the bone marrow transplant were the toughest,” John said. “She had very high fevers that wouldn’t break with medication, her liver was enlarged, and she needed multiple blood and platelet transfusions. She hardly responded to us, which was nerve-wracking.”

On the eighth day, there were signs of the first cells. While nominal, it meant that the bone marrow was working again — a symbol of new life. 

Julianna continued making more progress, and on the 28th day, she was discharged. 

“It was exciting,” John said. “Jules had gotten better every day, and her liver went back to its normal size. She was starting to feel good.”

Julianna made it home by her 6th birthday and enjoyed a mermaid party with friends and family. One week after, she started 20 days of radiation under sedation and then went through six rounds of inpatient immunotherapy.

On the day that Julianna rang the chemotherapy bell to signify the end of treatment, there was another setback — a new scan revealed a lesion on her shinbone.

A week later, the family received news that there were no living cells in that tumor. They breathed a sigh of relief and couldn’t wait to tell everyone that Jules had beaten cancer.  

Now 9 years old, Julianna is back to being Miss Independent. Her spirit has been restored and she’s full of energy, passion and lots of sass — characteristics that helped her fight when she was diagnosed with cancer. 

The family could not be more thankful for the care Julianna received at UF Health Shands Children’s Hospital and her incredible outcome.

“All of the people involved in Jules’ treatment were more than just care providers,” John said. “After spending more than a year with them, we created a bond that we will never forget. We consider them to be part of our family and cannot thank them enough for saving Jules.” 

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Sarah’s Superman Inspires Career Battling Cancer

Before opening the door, Sarah Wheeler prepares for the unknowable monster taking hold on the other side. She’s aware that cancer can yank her patients’ lives off their desired paths and reroute them through a dark, uncertain one.

That’s because it’s taken Sarah down the same road.

“If you’ve walked through those trenches, if you’ve walked through the valley of the shadow of death yourself,” said Dr. James Lynch, a professor of hematology and oncology at UF Health, “you are a much more sensitive and caring person because you can relate on a level that other people simply can’t.”

Sarah, a clinical pharmacy specialist at UF Health Shands Cancer Hospital, has an enormous challenge every time she approaches her patients’ bedside. The 33-year-old from Plant City, Florida must arm her patients with the knowledge they need to battle the fear that comes with a cancer diagnosis, while coordinating their treatment.

Each trip Sarah takes to her patients’ rooms can be traced back to her own life-altering experiences with cancer. Her father, Wayne Wheeler, was diagnosed with Stage 4 colon cancer when she was 15 years old. Wayne was given 18 months to live, but her “Superman” survived nearly four years.

“Daddy’s illness totally was the precipice for why and how I became a pharmacist,” Sarah said. “His fighting spirit through the whole thing really gave me a lot of things to aspire to as I grew up and ways to kind of handle hard situations.

“With some of the chemotherapy he had, he’d get nauseous and vomit. What was interesting sometimes was to see him throw up and then go right back to what he was doing. He was really determined in not letting cancer dictate his life. Throughout his cancer treatment, he was a walking miracle.”

Five years after Wayne died, her mother Charlene, aka Charlie, was also diagnosed with cancer on her 50th birthday — coincidentally, the same cancer her father had.

While Wayne’s diagnosis would launch Sarah on her career path, her mother’s diagnosis would teach Sarah how to be a primary caregiver, which she still is for her mother today.

“I don’t know if I can really call myself a momma bear about my momma, but I really am,” Sarah said. “So anytime she’s in the hospital, I’m like, ‘What medicine is that? Why are you giving that to her? What is this?’ Which sometimes I think drives her crazy, but I think all in all, she appreciates it.”

Although Wayne and Charlie’s diagnoses shaped their only child in different ways, both serve as Sarah’s daily driving force to help others who are getting ready for the same struggle. They link Sarah to all her patients and allow her to empathize with them and their loved ones.

“If my experience gives me a special set of skills that other people don’t have and there’s an avenue for me to use them, then I should,” said Sarah, whose grandfather had surgery for prostate cancer in 2001. “Cancer, fear, those things don’t always get to win. We get to fight back. And so I like being able to be the one that walks in and says, ‘OK, this is what we’re going to do, how we’re going to do it, and we’re going to help you be you all the way through.’”

The Human Dimension of Medicine

The importance of Sarah’s job can’t be overstated. In the world of oncology, the drugs, the delivery of those drugs and mapping out chemotherapy treatment plans is all very complicated.

“Years ago, it became the practice to hire a pharmacy doctor who specializes in oncology to oversee the administration of chemotherapy, particularly in complicated inpatient services,” Lynch said. “And so that’s what Sarah’s job is, and she is masterful at it.”

Lynch, who’s been at the University of Florida for 30-plus years, remembers when clinical pharmacists weren’t there to help. Now it’s hard for him to imagine how health systems ever functioned without them.

Due to the increased complexity of cancer treatment, having a single person who oversees the process of administering chemotherapy is now essential in every medical center. Some health systems have more than one depending on the volume of patients they’re treating.

Although Sarah is well-recognized for how gifted she is in the technical aspects of the role, where she specializes in hematology and oncology, her unique ability to connect on a personal level sets her apart even further. Sarah doesn’t view her patients through the prism of her position. The truth is, when Sarah looks at her patients, she sees so much of herself.

“Not all practitioners, not all nurses, not all pharmacists are as attuned to the human dimension of medicine as others,” Lynch said. “That human dimension of medicine is a key component of what I think it is to be a physician, and to greater or lesser levels of success, I have strived to nurture that part of my own clinical practice. And I saw that that was important to Sarah from the first time that we met.”

Sarah’s patients feel that genuine relationship right away.

Jay Davis was 18 years old when he was diagnosed with non-Hodgkin’s lymphoma after he experienced a growth on his neck that swelled to the size of a tennis ball. The third-year UF psychology major from Tampa, Florida, recalled how sincere Sarah was throughout his treatment, from the empathy she showed when they met to her regular visitations when he was an outpatient.

“I knew I was going to be in good hands,” said Davis, who says he is healthy and doing amazing now. “She was very receptive of anything that I needed or how I was feeling. She took my emotions and my side effects into account at all times. I definitely felt like I was in safe hands. There was never a moment where I was iffy.”

Opening Up Her Veins

Charlie believes that “every cancer patient needs a Sarah.” Her daughter wholeheartedly believes the same, which is why Sarah’s connection with cancer patients goes beyond the ones she sees at the UF Health Shands Cancer Hospital.

Sarah donates blood platelets at LifeSouth every other week. Platelets are tiny cells in blood that form clots and prevent bleeding. Every 15 seconds, someone with cancer, a chronic disease or a traumatic injury requires platelets. They must be used within five days, so donors are constantly in demand.

Already being a regular blood donor, something she did routinely with her grandfather starting at age 17, Sarah was told her Type O+ blood was good for donating platelets.

After learning that, Sarah began spending an hour and a half of her time each visit to donate blood platelets, which are vital for many, especially those who are fighting leukemia and lymphoma. Sarah has seen the need as the hospital has gone through several shortages since she’s been at UF Health.

“Help comes in a lot of different ways, and I think it’s important for us to keep our eyes open to the different ways that we can help and realize that all of us have some skill that we can do to help people,” Sarah said. “And for me, if that means that I sit there with my arm like this and literally open up my veins for people, I will do it. And if I need to open up my heart to tell my story, I’ll do that, too.”

Donating blood platelets is important for several reasons. For one, a major side effect to cancer treatment is low platelet count, which can result in life-threatening bleeding. They also help those who need to replace platelets that are lost after major surgery or serious injury. In addition, platelets help those with blood disorders or those who’ve had a transplant.

If you’re interested in donating, please visit the LifeSouth Donors page.

Talking to Her Star

Sarah was the introverted daughter of an extroverted father. She remembers being “completely encapsulated” by the giant bear hugs that 6-foot-4 Wayne, nicknamed “Spider” because of his lanky figure, would give her.

In many ways, Sarah’s legacy is passing that feeling on to her patients, erasing their fear and replacing it with comfort.

Her father is still a point of comfort for her now in the form of a star on her ankle. Sarah, a country girl who has always loved stargazing, got the tattoo in memory of her father after having a discussion with a friend who shares the same grief.

“It’s green, because his favorite color is green,” Sarah said. “It’s kind of a two-fold purpose. One, if I ever need to talk to my dad and I can’t, I can look at my ankle. The other thing is, whenever I need to have a way to center myself back to me, and if it’s 2 p.m. on a Tuesday and there are no stars, I can also take a moment, look at my ankle, take a breath and find my way back.”

Sarah’s found her way back from the uncertain route that cancer once took her through. Now her life’s work as a clinical pharmacy specialist is opening that door and helping those on the other side do the same. All the while, she reminds them that “everyone’s walks are different.”

And while her father serves as her North Star, Sarah knows he’d be over the moon to see just how many paths Sarah has positively impacted already. He was undoubtedly her biggest fan, although Wayne — a lifelong Alabama fan — wouldn’t be the biggest fan of her being in Gator Country.

“I could pretty much do no wrong in his eyes, so if he were here today, I know he’d be really proud of me. He’d give me a huge bear hug,” Sarah said. “And he would also really be proud of the fact that something came out of what he had to go through, and that I made something out of it.”


What Makes Sarah Special

Rob Rushin, a T-cell lymphoma patient, talks about the meaningful bond he developed with Sarah.

Helen Welsh, a nurse manager, illustrates Sarah’s unique connection to patients and shares a story.

Solmaz Karimi, an orthopharmacy student at UF, explains the difference Sarah has made on her career.

Rhonda Matheny, a non-Hodgkin’s lymphoma patient, speaks from the heart about Sarah’s lasting impact on her.

Videography by Kyle Walker, UF Health Creative Services. 

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Don’t Let it Start, Don’t Let it Spread

As summer approaches, we need to do our best to keep our skin healthy. That means protecting it from harmful ultraviolet, or UV, radiation. If your skin gets too much sun, it begins to be damaged, sometimes leading to unwanted spots on the skin. In some cases, these spots can be cancerous.

There are two main groups of skin cancer: nonmelanoma cancer, like basal cell carcinoma and squamous cell carcinoma, and melanoma cancers. Generally, nonmelanoma cancers are more common and less dangers, whereas melanoma cancers are less common and more serious. According to Mark Leyngold, M.D., a plastic surgeon at the UF Health Plastic Surgery and Aesthetics Center, the most common skin cancer he sees is basal cell carcinoma, which is commonly found on the face, head and neck. The reason is because the face is always exposed to the sun, while the rest of our body typically has clothing to protect us from UV damage.

“It is unrealistic to avoid the sun,” Leyngold said. “But if you are going to be out in the sun, make sure you apply sunblock with an SPF of at least 30. That will give you protection against UV and it will block over 90% of those rays.”

When in the sun, experts strongly recommend applying facial and body sunblock to exposed areas every two hours, especially if you are doing something active. According to Leyngold, skin cancer takes years for it to develop, so it doesn’t happen overnight. 

There are other factors to think about when protecting yourself from the sun, like your skin type and your environment. People with a lighter skin tone have less melanin in their skin; therefore they have less protection against UV rays. People also need to be aware of the sunlight reflecting off surfaces. For example, at the beach the sun can reflect off the sand or water, causing you to burn even if you are under a shade.

Maria Longo, M.D., Ph.D., a dermatologist at UF Health Dermatology, suggests avoiding excessive sun exposure during the peak hours of the sun, around noon to 4 p.m. If you can feel the heat from the sun beating down on you, she said, you are at risk of getting a sunburn. It is much better to avoid that or wear clothing that will protect your skin. 

“Being outdoors is great and getting the sun is a healthy activity, but avoid sunburns,” Longo said. Repeated sunburns are the ones that trigger the development of melanoma.

Sun protection is important to prevent skin cancer, but there are some types of melanoma that people with darker skin need to be aware of as they can develop on unusual sites such as the bottom of feet or the nails.

It is always important to check your body for any lesions or moles that are new or appear different. Check and detect skin cancer by doing the ABCDE check: 

  • The first step is to look at the asymmetry of the lesion, meaning that one half of it does not match the other.
  • Then, Longo looks at the borders; they can look irregular and uneven.
  • Next, be aware of the color. Skin cancer could appear in different shades like brown, tan or black.
  • Then, be aware of the diameter. Normally, if a spot is larger than 6 millimeters, it is a sign that something can be wrong.
  • The last and most important one to be aware of is evolution, which is a change in the mole or lesion. 

All of these are signs of potential skin cancer. If you notice the lesion becoming itchy, painful or raised or it is spreading, then it is important to get it looked at by a dermatologist. 

At UF Health, we offer nonsurgical and surgical treatments for skin cancer. Certain creams can be used to treat earlier, less aggressive or precancerous lesions. However, they only have a limited efficacy, as more aggressive types of cancers should be treated with surgery, which sometimes requires reconstruction.

According to Leyngold, the typical surgical approach to skin cancer is complete excision. On rare occasions, some patients may not be surgical candidates and require topical chemotherapy or radiation. Surgical options at UF Health include Mohs micrographic surgery, a skin-sparing technique usually used in cosmetic areas such as the eyelid, nose or cheek, where every millimeter counts.

For people who have already had skin cancer, take extra caution when outdoors in the sun. Previously having skin cancer puts people at a high risk of getting it again. Be extra vigilant about staying out of the sun, use sunscreen and seek care when noticing a specific lesion and scheduling annual exams with a dermatologist.  

For more information on our dermatology services, visit our website or make an appointment with one of our dermatologists at 352.594.1500.

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Answering Your Immunization Questions

Over the past year, the importance, availability and effects of vaccination have been at the forefront of global conversation. As your trusted health care providers, we’re answering your questions about vaccines as part of a healthy lifestyle.

 

Why do we need vaccines?

When we’re born, we have some immunity to viruses and bacteria from our mothers. After a few weeks, this natural immunity disappears. Infant immunizations help protect children against disease after this period.

Vaccines have made some life-threatening diseases, like polio and measles, extremely rare in many parts of the world. Vaccines help rare diseases stay rare.

 

How do vaccines work?

Vaccines “teach” your body to make proteins that help you fight viruses and bacteria that can harm you. When your body comes across the virus or bacteria later, it will know how to protect you from it.

They can do this in many different ways:

  • Live virus vaccines contain a small, safe amount of weakened virus. For example: chickenpox
  • Killed vaccines contain a protein or small piece of the virus. For example: whooping cough
  • Toxoid vaccines contain a safe amount of the toxin a virus or bacterium produces. For example: diphtheria
  • Biosynthetic vaccines contain a man-made substance that is similar to the virus or bacteria. For example: hepatitis B

If a vaccine is given in a series of doses, such as the HPV vaccine, make sure to receive all doses of the vaccine. Talk to your health care provider about conditions that may prevent you from receiving certain live vaccines.

 

How do COVID-19 vaccines work?

mRNA vaccines teach our cells how to make a protein that triggers an immune response. For example, the mRNA from a COVID-19 vaccine never enters the nucleus of the cell, which is where our DNA is kept. This means the mRNA cannot affect or interact with our DNA in any way. Instead, COVID-19 mRNA vaccines work with the body’s natural defenses to safely develop immunity to disease. You can learn more about how mRNA vaccines work in this video.

Johnson & Johnson’s Janssen vaccine is another solution to fighting COVID-19. Viral vector vaccines use a modified version of a different, harmless virus (the vector) to deliver important instructions to our cells to start building protection. The instructions are delivered in the form of genetic material. This material does not integrate into a person’s DNA. These instructions tell the cell to produce a harmless piece of virus that causes COVID-19. This is a spike protein and is only found on the surface of the virus that causes COVID-19. This triggers our immune system to recognize the virus that causes COVID-19 and to begin producing antibodies and activating other immune cells to fight off what it thinks is an infection.

 

What is “herd immunity”?

Herd immunity happens when most members of a community are protected from a disease. This usually occurs through vaccination. This includes people who are unable to be vaccinated against the disease due to weakened immune systems. If one person in the community becomes infected, there are not enough viable hosts to spread the disease to. Getting vaccinated helps to protect you, your family and vulnerable members of your community against illnesses.

 

Why do we need a new flu vaccine every year?

Viruses have the ability to adapt and change over time. In the case of the flu vaccine, this is every year. Scientists study these changes and use them to create a flu vaccine that protects you from three to four strains they believe will be most common in the next year.

 

Are vaccines safe? What should I do in addition to getting vaccinated to keep myself safe?

The benefits of vaccines outweigh the risks. Physicians strongly recommend that you receive vaccines according to schedule as part of a healthy lifestyle.

In addition to getting vaccines to stop the spread of disease, use other healthy habits to reduce your risk of illness. Some healthy habits are proper handwashing technique, practicing safe sex, attending regular health screenings and talking to your health care provider when you have questions about your health.

Accessible vaccinations are a necessity for individuals and their families in every community, everywhere in the world. When you and your loved ones are able to receive immunizations against illness, we recommend that you do so under the supervision of your health care provider. Learn more at UFHealth.org.

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Eyes on the Prize: Progress in Cystic Fibrosis Research Amidst a Pandemic

Just over one year ago, COVID-19 exploded on news headlines — putting the world in a tizzy about what this new virus was, who was at risk and how to prevent its spread. Those with underlying respiratory conditions such as cystic fibrosis were cautioned to stay indoors and away from others. Top health officials feared that if these populations contracted the virus, they would have a greater chance of hospitalization or death. But as the world sheltered in place, UF Health physicians remained steadfast and focused on medical research advancements unrelated to the pandemic.

Jorge Lascano, M.D., director of UF Health’s adult cystic fibrosis program, and a team of clinicians have been at the forefront of identifying novel treatments for cystic fibrosis, or CF. CF, a genetic disease, affects a person’s organs, primarily the lungs, and creates a thick, sticky mucus in the airway and other ducts of different organs, leading to blockages, damage to and infections of these organs. Symptoms vary but often include persistent coughing and frequent lung infections that can require aggressive treatment.

At UF Health, Lascano has joined forces with Giuseppe “Joe” Morelli, M.D., and Julio Leey, M.D., to evaluate CF patients and how they respond to a medication that restores cystic fibrosis transmembrane conductance regulator, or CFTR, function — the main protein affected by this disease.

CFTR modifiers are a new group of medications that have been evolving for the past years. While they have proved to bring a great deal of improvement for CF patients ages 6-plus, they have also raised questions about their role with patients who have CF-related liver disease.

“We know the medication produces an increase in liver enzymes in some patients,” Lascano said. “The question becomes whether these patients had underlying CF-related liver disease prior to being placed on the medication.’’

Now, Lascano, Morelli and Leey are working with other CF-related programs across Florida to create a database of patients with CF in an effort to identify patterns that reveal who may be more susceptible to liver damage from the medication.

The goal is for all patients to benefit from the medication with no injury to the liver, Lascano explained. Patients who do not tolerate the medication at the regular dose may be advised by their physician to decrease the amount taken to half a dose or even a quarter of a dose. 

And while CF patients may be hesitant about taking the medication, the potential benefits could outweigh the possible risks.

“The medication is changing the layout of CF,” Lascano said.

With this medication, Lascano has seen some CF patients with restored double-lung function, others removed from the lung transplant waitlist and hospitalization admission rates down by 80%.  Currently, a national study is being conducted for children ages 2 to 6 years old, and Lascano is hopeful that the medication will eventually be approved for patients as young as newborns.    

Another possible solution for CF? Gene therapy.

If inhaled gene therapy, a treatment that corrects a gene in a patient’s airway, proves successful, it could be a partial cure to fix the lung component of CF, thus removing the need for medication.

Until then, UF Health’s multidisciplinary team of pulmonologists, hepatologists, endocrinologists and other specialists continue to investigate novel therapies to help patients with CF breathe easier.

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COVID-19 Timeline at UF Health

March 2020 marked the beginning of Florida’s battle against COVID-19, and with it came a flood of fundamental changes to our everyday lives. “The new normal” was becoming the reality everywhere, and this dark time in history certainly cast its shadow on The Sunshine State in a variety of ways. 

COVID-19 has taken us through a range of feelings, with many of us experiencing loneliness, pain, anger or sorrow, just to name a few. Still, we’ve learned we are resilient. For some, grief has led to gratitude. Isolations have led to innovative connections. Roadblocks to our favorite pastimes and hobbies have opened avenues to new ones.

We’ve come a long way as a campus, as a community and as a state. Here, we take the opportunity to reflect on the path we’ve taken since the start of the pandemic, highlighting the many milestones we’ve reached.

 

March 1, 2020

The first cases of COVID-19 in Florida are reported in Hillsborough and Manatee counties.

 

March 6, 2020

A UF study published in Science shows the limits of travel bans in controlling the spread of COVID-19.

 

March 11, 2020 

UF Health Shands Hospital admits its first patient with COVID-19.

 

March 14, 2020

Juggling classes, research, UF students join the fight against COVID-19.

 

March 15, 2020

The UF Health Screen, Test & Protect team forms, aiming to conduct contact tracing on local COVID-19 cases and assist with disease investigation.

 

Mid-March, 2020

A group of researchers, students and lab technicians across UF came together and built a high-throughput testing lab in the Emerging Pathogens Institute in just 10 days.

 

March 17, 2020

UF moves all classes completely online.

 

March 23, 2020

UF Health works with The Villages and state officials to rapidly ramp up coronavirus testing.

 

March 25, 2020

UF researchers lead the way in rapidly designing, building low-cost, open-source ventilator.

 

April 1, 2020

UF Health researchers donate gloves, masks and other PPE to support front-line colleagues.

 

April 5, 2020

UF Health Central Florida’s clinical laboratory team, working with UF Health Shands Hospital, develops a rapid, in-house COVID-19 test for patients under investigation.

 

April 7, 2020

UF Health begins offering COVID-19 testing to first responders and emergency room employees in Gainesville.

 

April 17, 2020

Mary Frietag, of Leesburg, is the first COVID-19 patient to be discharged from UF Health Leesburg Hospital after “graduating” from a weeklong COVID-19 treatment.

 

May 5, 2020

UF Health Screen, Test & Protect launches an initiative to test and contact trace faculty, staff and students.

 

June 1, 2020

UF Health students tackle community needs through COVID-19 Student Service Corps.

 

June 30, 2020

UF approves a policy requiring face coverings and physical distancing inside all UF and UF Health buildings.

 

July 10, 2020

UF launches its reopening plan for the fall semester.

 

Aug. 26, 2020

Ira Longini, PhD, and World Health Organization colleagues publish recommendations for COVID-19 vaccine trials in The Lancet.

 

Aug. 31, 2020

Fall semester begins at UF, with more than 900 class sections in-person.

 

Sept. 1, 2020

UF researchers find viable viruses in aerosols that cause COVID-19.

UF/IFAS educates more than 800 farmworkers about COVID-19.

Members of the UF College of Public Health and Health Professions department of environmental and global health begin wastewater surveillance of UF’s campus, Gainesville and Cedar Key.

 

Oct. 3, 2020 

The first physically distanced Gators home football game is held with an estimated 15,000 fans in the stadium — far fewer than the normal 90,000-plus crowd. (The Gators beat South Carolina, 38-24).

 

Nov. 18, 2020

UF reports a record number of applications for fall 2021: 48,066, up 3.6% over the previous year.

 

Dec. 14, 2020

UF Health Jacksonville is the first in Florida to administer COVID-19 vaccine.

 

Dec. 15, 2020

UF Health is among the first in the world to use novel diaphragmatic pacer to help COVID-19 patients breathe.

 

Dec. 16, 2020

UF Health in Gainesville begins vaccinating high-risk health care employees against COVID-19.

 

Dec. 17, 2020

UF Health Central Florida begins COVID-19 vaccinations for front-line health care workers and medical staff.

 

Dec. 23, 2020

Moderna vaccinations begin for health care employees at UF Health in Gainesville.

 

Jan. 11, 2021

Spring semester begins at UF with more than 4,200 in-person class sections — nearly as many as spring 2020.

 

Jan. 19, 2021

UF Health Jacksonville discharges the 1,000th patient recovered from COVID-19.

 

Feb. 1, 2021

UF releases official enrollment numbers for 2020: 57,841 — a new record.

 

Feb. 5, 2021

UF Health partners with the Florida Department of Health in Alachua County and the UF Athletic Association to hold a mass vaccination event at Ben Hill Griffin Stadium.

More than 1,100 Alachua County residents ages 65 and older are immunized.

 

March 1, 2021 

April 5, 2021

The University of Florida sees its first students vaccinated through a collaboration between the Florida Department of Health and UF Health Screen, Test & Protect. Thousands of UF students, faculty and staff 16 years and older were vaccinated at Ben Hill Griffin Stadium

And these are just a few of the milestones. For the full breakdown, visit our COVID-19 Reflections website.

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Role Reversal: From Nurse to Patient

Donna Pinckney worked as an oncology nurse in Daytona Beach for nearly two years when her role as a clinician was quickly reversed. On Dec. 28, 2020, Pinckney was diagnosed with ductal carcinoma in situ, or DCIS. Commonly known as one of the earliest forms of breast cancer, abnormal cells were found inside her breast ducts. A pathology exam revealed that a portion of the cancer had spread to nearby tissue. 

Nearly 20 years prior, Pinckney found out she had atypical ductal hyperplasia in her breast tissue, a precursor to DCIS. With this diagnosis, she knew that she had a 1-in-3 chance of being diagnosed with breast cancer during her lifetime. 

As a nurse who works with cancer patients, Pinckney was initially concerned that she knew too much to worry herself sick about her diagnosis. The day after learning her results, Pinckney spoke with a breast cancer navigator at an oncology center. Pinckney shared that navigators explain to patients what their next steps should be and guide them through the entire process. She was very thankful for having such a strong support system. Donna Pinckney

Patients with DCIS can have a lumpectomy or a double mastectomy with or without reconstruction, Pinckney explained. But she did not have a lump and, therefore, a lumpectomy was out of the question. Instead, the cancer was found in a cluster of tiny deposits in her tissues. She knew she wanted to do a double mastectomy, or removal of both breasts, with a reconstruction.

“I have ducts in both breasts,” Pinckney said. “I don’t want to repeat this process five or 10 years down the road.”

After her mastectomy, Pinckney was sent for reconstruction to Noah Prince, M.D., a board-certified plastic surgeon at UF Health Plastic Surgery and Aesthetics at Halifax Health. Pinckney’s decision to see Prince was immediate because of her connection to the University of Florida.

“I’m a Gator alumni, my brother and sister are Gator alumni, and my youngest daughter just got accepted into UF,” Pinckney said. “We are a Gator family.”

At her first appointment with Prince, he asked her about her biggest fear with reconstruction. Her response: post-operation pain. Pinckney felt at peace after Prince explained the pain process and suggested medications.

“Right before I saw him, and didn’t know what the plan was, I was anxious about everything,” she said. “I walked out feeling very relieved and calm after talking to him. In that moment, I knew that I could do this.”

Not only would Pinckney receive reconstruction, but she would also become the first breast reconstruction patient at UF Health | Halifax Health. 

“It was a first for both of us, but I wasn’t worried about any of it,” Pinckney shared.

On Jan. 26, Pinckney had her first surgery where Prince placed tissue expanders between her pectoral muscles and chest wall. Because the skin has a tenuous blood supply after a mastectomy, it needs time to heal before it is stretched to configure a new shape. It also needs time to drain any excess fluids, and form a pocket that will eventually hold her implant.  Now, at each weekly follow-up appointment, the area is filled with saline little by little, as her reconstructed breasts begin to take shape.

But even though the reconstruction was off to a promising start, Pinckney’s fight was not over. After her hormone tests came back HER2-positive, she also required 12 weeks of chemotherapy. Pinckney is currently undergoing chemo and will not be able to have her reconstruction completed until she is finished with her treatment. Pinckney is hopeful to undergo surgery by the end of July. 

Pinckney expressed that Prince has exuded empathy and expertise throughout the process.

“He is a credit to The Gator Nation most definitely,” Pinckney said.

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Infertility Awareness Week

April 18-24 is National Infertility Awareness Week, a movement to raise awareness and educate the public about the challenges infertility presents when trying to build a family. R. Stan Williams, M.D., the Harry Prystowsky Professor of Reproductive Medicine, shares his thoughts:

When should someone talk to a doctor about infertility testing?

If a woman is younger than 35 years old and has not gotten pregnant after one year of intercourse without contraception, she should talk to her doctor about infertility testing. If she is 35 or older, she should consult her doctor if she has not gotten pregnant after six months of unprotected intercourse. 

What are the common causes for infertility?

  1. The male factor is responsible for about 40% of infertility. It could be caused by low sperm counts, poor sperm mobility or abnormal morphology of the sperm.
  2. About 20%-30% of infertility is due to a woman not ovulating regularly.
  3. Tubal infertility causes another 20%-30% of infertility and occurs when something is wrong with a woman’s fallopian tubes; typically they are blocked.
  4. Endometriosis, even mild cases, can lead to infertility. Endometriosis is a painful disorder in which tissue that normally lines the uterus grows on the outside of the uterus.
  5. The incidence of advanced reproductive age of the woman is increasing these days. That can sometimes lead to infertility. Women start losing some of their fertility after age 30 and it accelerates after age 35. So, for women in their mid- to late 30s and certainly early 40s, their age could be the main cause.

How is infertility diagnosed?

Common testing for infertility is a sperm count for men or evidence of ovulation issues in women, which could be as simple as a history of having irregular periods. Women who are having regular periods can use an at-home ovulation predictor kit or get a progesterone blood test in the last week of their menstrual cycle. Progesterone is a hormone made by a woman’s ovaries after ovulation that helps make the uterus ready to support a fertilized egg. Detecting a blocked tube typically requires an X-ray called a hysterosalpingogram or a special ultrasound that passes bubbles through the tubes. The quality and quantity of the eggs can be measured in older women with specially timed hormone tests and an ultrasound on Day 2, 3 or 4 of the menstrual cycle. 

What happens in a fertility evaluation?

We have both partners come to the first visit to answer a few questions so we can get an accurate history from them for risk factors that might be leading to one of the causes of infertility.

Does birth control have any effects on a woman’s body that would lead her to have trouble getting pregnant after she stops taking it?

There is no evidence that any type of birth control will lead to infertility. A common misconception is that when people are on oral contraceptives for a long time, it can cause disruptions in ovulation after stopping the pill. What actually is happening is the pill makes women have artificial periods every month, masking any irregular cycles that would be naturally occurring. When women stop taking the birth control, irregular periods become evident. It’s not that the pill caused the irregular periods. The pill was just masking them all along.

After having a baby, can a woman have trouble conceiving in the future?

Yes, but it is more common to have primary infertility where there are problems with the first pregnancy. Women can certainly have secondary infertility, which is when there is trouble conceiving again after a successful pregnancy.  

What does UF Health Reproductive Medicine offer for infertility?

We do everything from determining risk factors, which includes a complete evaluation and testing of the patient and her partner, to providing treatment. What differentiates us from the average OB-GYN practice is that our expert physicians have had two to three years of extra training specifically in infertility. We are called reproductive endocrinologists. We can provide simple treatments, from ovulation induction with oral medications to help the woman ovulate better, to more advanced treatments such as intrauterine inseminations. That involves washing a sperm sample and placing it into the uterus. We can also do embryo biopsies for genetic defects and can use donor eggs and sperm. We also offer the most advanced infertility techniques, including in vitro fertilization, or IVF, and all of its variations. One variation of IVF is called intracytoplasmic sperm injection, or ICSI, where we inject sperm into the eggs. Essentially, we provide every infertility treatment that anyone could possibly need. 

Do women need a physician referral to be seen at UF Health Reproductive Medicine or can they call to make a consultation appointment?

No referral is needed. They can call us directly.


Call UF Health Reproductive Medicine at 352.265.2229 or visit us at our website for more information or to schedule an appointment.

 

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UF Health Pediatric Emergency Room Brings Expertise to Children 17 and Younger

Q/A with Medical Director Carolyn Holland, M.D.

About the author:

Carolyn Holland, M.D., is board-certified in pediatric emergency medicine and is the division chief for pediatric emergency medicine at the University of Florida College of Medicine and the medical director of the UF Health Pediatric E.R. Holland grew up in Florida and completed her bachelor’s and master’s degrees at UF. She then worked in secondary and higher education before attending Eastern Virginia Medical School in Norfolk, Virginia. After earning her medical degree, she completed a residency in emergency medicine at the University of Cincinnati and a fellowship in pediatric emergency medicine at Cincinnati Children's Hospital. After her training, she remained on the faculty at the University of Cincinnati for a few years before returning to UF to join the faculty here.

 

Q: What makes a pediatric E.R. different from an adult E.R.?

A: Pediatric emergency rooms are built for children and their families. With colorful rooms and murals, along with toys and games to keep children occupied, the atmosphere in pediatric emergency rooms is designed to be kid-friendly. In addition, ours has stretchers with narrow slats to help keep kids from falling out of the beds, cribs for infants, age appropriate snacks, formula and diapers. Waiting rooms are for pediatric patients and their families ONLY, so the space is not shared with adult patients with serious medical problems like heart attacks and strokes. 

 

Q: When should a child go to the E.R. versus going to their pediatrician?

A: While we are open 24/7 and happy to care for all patients who come in the door, the first call in a non-emergency situation should be to the pediatrician’s office. There is generally someone on-call 24 hours a day to provide advice and help parents/guardians decide if an emergent trip to see a doctor is necessary. The pediatrician can often arrange to see a child first thing the following morning in the office and avoid the wait in an E.R.

That being said, there are some “must go to E.R.” conditions:

  • Any child less than 2 months old with a fever greater than 100.4 degrees Fahrenheit
  • Suspected broken bones — especially if there is any concern that the bones are not lined up and need to be put back in place
  • Head injuries associated with passing out, seizing or recurrent vomiting
  • Seizures in children who normally don’t have seizures
  • Signs of dehydration, such as lack of urine for more than 12 hours, very dry lips and mouth, and sunken eyes
  • Fast, heavy, gasping breathing and/or speaking only two to three words between taking breaths or turning blue
  • Gaping cuts (especially on the face) that need repair; young children may need sedation or the help of child life specialists to offer support during procedures
  • Concern that a button battery was ingested
  • Concern for a neck or spine injury
  • Uncontrolled bleeding

 

Q: What makes the UF Health Pediatric E.R. unique?

A: We are the ONLY pediatric emergency department in North Central Florida that is fully staffed by board-certified, fellowship-trained pediatric emergency medicine physicians. We are also the only hospital in North Central Florida that has all pediatric surgical subspecialties should your child need surgery, including pediatric anesthesia, surgery, orthopaedics, ENT, urology and neurosurgery. We also have 20+ pediatric medical subspecialties available 24/7, including but not limited to neurology, gastroenterology, cardiology, endocrinology, rheumatology, nephrology, hematology/oncology, pulmonology and infectious diseases. Finally, we are the only hospital in North Central Florida that has a pediatric intensive care unit and a neonatal intensive care unit. All of these services make it extremely unlikely that your child would ever have to be transferred out to another location to get definitive care.  

 

Q: Has the COVID-19 pandemic changed the way the UF Health Pediatric E.R. cares for patients?

A: The biggest changes are related to the wearing of personal protective equipment with every patient encounter and the requirement that parents and older children also wear protective equipment. You will see the nurses and doctors in N95 masks and eye protection at all times, and sometimes even in protective gowns and gloves. We have also enhanced our room cleaning procedures in between each patient. Our visitor policy has been limited to one adult at the bedside while the patient is in the emergency room. 

 

Q: How are pediatric E.R.s staffed?

A: They are staffed by physicians and nurses who have chosen to specialize in the care of children and their families. When it comes to emergencies, children are not just “little adults.” Doctors, nurses and the support staff in a pediatric emergency department are knowledgeable about illnesses and injuries that are specific to children. They are also experts at communicating with children and their families. At UF Health, all patients in our pediatric E.R. are cared for by board-certified, fellowship-trained pediatric emergency physicians and pediatric-trained emergency medicine registered nurses and support staff.

 

Q: What should parents/guardians know in advance before bringing a child to the E.R.?

  1. Don’t be afraid to give your child some pain medication and/or fever medication at home before coming to the E.R. It is the first thing we are going to do when the child arrives, and if it is already starting to work before you get here, it will make our examination much easier.
  2. Stay calm and let your child know what to expect. Children are little barometers for the stress going on around them. If you are freaking out, it is likely that your child will do the same. They are looking to you for reassurance, so let them know that everyone is there to help and be as honest as you can based on the child’s age.
  3. Bring a list of your child’s medications and medical history. While we have an electronic health record that keeps track of many items, it does not connect with all other health systems and can sometimes be outdated. We also recommend bringing a comfort object for your child (favorite blanket or stuffed animal) and something to distract him/her (book, phone, tablet, etc). 
  4. If possible, please do not bring other children with you. This way you can concentrate on supporting your ill/injured child and not have your time and attention divided. The E.R. is unable to provide child care and some of our rooms are small, so additional people can make it feel crowded and uncomfortable.
  5. Don’t stop for food on the way to the E.R. If your child is ill and/or injured and requires a procedure with sedation or anesthesia, your child’s care may be delayed or be riskier on a full stomach. We will let the patient eat and drink as soon as possible after being evaluated by a doctor.   

 

Q: Are there any common myths associated with the E.R.?

A: Some parents are afraid that we won’t believe a fever is real unless we actually measure it in the E.R. This is not true! If a parent/guardian tells us there was a measured fever, or even a fever that was felt by hand, we will believe the parent/guardian, which is why giving the child pain and/or fever-reducing medication prior to arrival is not a problem and is preferred.

 

Q: How long will an E.R. visit take?

A: There is no way to predict how long your visit will take in the emergency department. Severe medical problems are seen first, so if your child is there for a minor condition, you may have to wait a little longer. If your pediatrician calls the hospital prior to your arrival, it can help the emergency staff speed up the process, but labs, imaging and specialty care take time. Please be patient and know that we are going as fast as we can to provide the safest and highest-quality care possible.

 

Q: If a child is seen at the Pediatric E.R., will his/her pediatrician be notified?

A: If the primary pediatrician is listed in our electronic health record, he/she will get information about your child’s emergency department visit and any hospital admissions automatically. Additionally, many of the pediatricians in the local area and surrounding counties have access to our electronic health record. However, it is always good practice to call your pediatrician after an E.R. visit to arrange a follow-up appointment in his/her office.

 

Q: What if a child needs to be admitted to the hospital after being seen in the Pediatric E.R.?

A: We are really lucky that our Pediatric E.R. is part of UF Health Shands Children’s Hospital. Our pediatric emergency medicine staff and the inpatient physicians have a very close and collegial working relationship. There is always direct communication between the emergency room team and the admitting team so that all are on the same page when it comes to the care plan. If your child needs to be admitted, the transition will be seamless.

 

Q: Do you have any additional advice for families?

A: Yes, advocate for your child and ask questions. You are the person who knows your child the best. If you don’t feel comfortable with your child being discharged, let the medical team know. Ask questions so you understand what the plan is at home, when to return to the emergency room and when to follow up with a doctor. While you’re here, you may see multiple health care providers — from nurses and paramedics to resident physicians to surgeons to the attending emergency physician. They may all ask you the same questions, and it can sometimes feel redundant. But each set of people have different tasks and pieces of information they need in order to provide the best care, so repeat questions are sometimes essential.

 

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Eating right and staying balanced in 2021

The weather is warming and outdoor fun is just around the corner — springtime is here. With spring always comes cleaning, and we at UF Health want to empower and invite individuals and families to spring clean their lifestyle choices and make informed, nutritious choices for themselves and their families. We’re sharing tips on how to eat a balanced diet and why moderation is a great start toward a healthier lifestyle. 

Balance 

A balanced diet provides all necessary nutrients from a variety of foods while staying within a healthy range. Our bodies need healthy amounts of protein, carbohydrates, fats and vitamins to perform everyday functions and protect against illness. Three nutrients (protein, fat and carbohydrates) provide calories, or energy, to the body. Your daily needs for each nutrient vary based on your unique caloric needs. 

  • Protein helps your body repair cells and make new ones. It also promotes healthy growth and development in children, teens and pregnant women. Some recommended protein sources are lean cuts of meat, fish and shellfish, beans, tofu or tempeh and low-fat dairy products. You do not need to source any or all of your protein from animal products. Substituting plant-based protein for animal protein can contribute to a healthy lifestyle when combined with exercise and other lifestyle choices. 
  • Fat provides essential fatty acids linoleic and linolenic acid, which are not made by the body and must be obtained from food. Fat also serves as important energy storage for your body, insulates your body to keep you warm and helps you absorb fat-soluble vitamins. Avoid trans fats and saturated fats and instead choose unsaturated fats such as olive or sunflower oil. Doing so can lower blood cholesterol and reduce your risk of heart disease. 
  • Carbohydrates (sometimes referred to as “carbs”) include starches, sugars and fiber. All three are essential for your body’s functioning. Starch and sugars are digested by the body and used as fuel. Fiber is not broken down by the body and helps you feel full, adds bulk to your stools and can help you stay at a healthy weight. Whole grains, dairy, fruits and vegetables are more nutritious sources of carbohydrates than refined grains such as white bread and white rice because whole grains also provide important vitamins, minerals and fiber. 
  • Vitamins are 13 essential nutrients that perform important functions in your body. A vitamin deficiency occurs when you do not get enough of a certain vitamin. Vitamin deficiency can increase your risk of health problems, including heart disease, cancer and poor bone health. Fruits, vegetables, beans, lentils, whole grains and fortified dairy foods are sources of daily vitamins. If fresh fruits and vegetables are unavailable, look for canned or frozen options with no added sugars. 

Moderation 

A diet with moderation maintains healthy amounts of different foods and nutrients. It’s possible to have too much of a good thing — eating an excess of any nutrient can have negative effects on your health. 

Many people enjoy comfort foods or favorite foods that are high in added sugars or trans fats. It’s perfectly OK to treat yourself to these foods once in a while, but not every day. Try enjoying these foods in smaller quantities or preparing versions of them with fewer trans fats and added sugars. Making healthy dietary decisions isn't about cutting out favorite foods completely; your diet should make you both healthy and happy. 

Here are some ways to practice moderation:

  • Take food to go when ordering meals from restaurants. Some restaurants serve entrée portions with enough food for multiple people. Instead of consuming the entire portion at once, share the meal with someone else or eat part of the meal now and the rest later. 
  • When eating at home, focus on the food you eat. Instead of eating meals or snacks from the bag, use the serving size on the package to divide the food into smaller portions. Try not to snack while watching television or surfing the internet. The distraction can cause you to eat more without realizing it. 
  • Listen to your body for fullness cues. When you feel full, do not continue to eat even if there is food remaining on your plate. Instead, save the leftover food for later.

Read nutrition labels on foods to understand the amount of nutrients you are consuming. Learning about the foods you eat is the first step to building healthy habits of balance and moderation in your diet. Contact your physician or a registered dietitian about dietary changes and how to implement them. 

UF Health provides programs and resources to individuals on a journey to a healthier lifestyle. Learn more at Managing Your Weight with Healthy Eating and Healthy Eating and Portion Sizes (cdc.gov).

 

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UF Health Pediatric Specialties is making a difference in Tallahassee

Pediatric neurosurgeon provides incredible care in child’s hometown

One day in early January, Nicole Whitaker noticed her daughter Sophia’s eyes were turning in. By the end of the day, Sophia, who was three days shy of turning 3 years old, was seeing double.

Nicole made an appointment to see an eye doctor right away. The examination revealed Sophia had alternating esotropia, a condition that causes someone to alternate their fixation on objects between each eye instead of using both eyes to focus. Sophia Whitaker smiles on the beach at sunset

Nicole wanted more answers and requested an MRI just to be sure there were no other underlying issues causing Sophia’s vision problems. The MRI revealed Sophia had a type 1 Chiari malformation.

The diagnosis led the Whitaker family to UF Health, where they met the chief of pediatric neurosurgery, Lance Governale, M.D. Based in Gainesville, UF Health has a pediatric specialties satellite office in Tallahassee, which was key for Sophia. Instead of having to travel more than two hours to see an expert pediatric neurosurgeon, the family had access to world-class care just around the corner. Pediatric neurosurgery also sees patients in Ocala, Lake City and Daytona.

“The first time we met Dr. Governale was here in Tallahassee,” Nicole said. “I think our appointment was scheduled for 30 minutes, but Dr. Governale sat with us for more than an hour. He told us that one of his main jobs was helping calm parents’ fears. He was so calm, sweet and knowledgeable during one of the most stressful times in my life.”

Nicole says that with a type 1 Chiari malformation, the bottom part of Sophia’s brain, called the cerebellum, is too big for her skull.

“During Sophia’s first appointment, Dr. Governale shared that the way the bones formed in Sophia’s skull made it too small for her brain,” Nicole said.

Although Chiari malformation can cause symptoms, the majority of cases are asymptomatic and require no treatment. In consultation with pediatric ophthalmology, Sophia’s care team determined that her condition did not appear to be causing her alternating esotropia. She would have eye surgery to correct her eye misalignment.  

“Dr. Governale knew we were going to be speaking with an ophthalmologist. The day after our appointment, he personally called me to see how the appointment went,” Nicole said. “He called again to check on Sophia after her surgery. It’s amazing to have a doctor, especially a surgeon, who genuinely cares.”

Because some patients with Chiari malformation develop symptoms that lead to surgery, Governale is monitoring Sophia’s progression, and she is scheduled to have another MRI in three months. If symptoms do develop, he will likely need to remove part of the bottom of her skull in the back to make room for her brain. At that point, Governale and the Whitaker family will weigh the risks of the symptoms versus the risks of brain surgery.

Having UF Health Pediatric Specialties in Tallahassee has been very helpful to Nicole, but what has made the true difference is the care provided by Governale.

“We are just so blown away by him,” Nicole said. “I can’t think of many other doctors, especially neurosurgeons, who call to check on their patients personally. That has meant the world to us.” 

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National Athletic Training Month Q&A

March is National Athletic Training Month, and we caught up with Jason Vereb, M.S., A.T.C., L.A.T., who joined the University of Florida in 2019 and works as an athletic trainer at the UF Health Orthopaedics and Sports Medicine Institute as well as the supervising athletic trainer at Santa Fe College. Read his thoughts on all things athletic training below:

What does being an athletic trainer mean to you?
Being an athletic trainer means that you speak for the athlete. You are there to protect them and to provide them guidance in orthopaedic and other various medical issues. An athletic trainer acts as a gatekeeper because they have to figure out where to send the athlete, whether it’s orthopaedics, general practitioners, even nutritionists at certain levels. An athletic trainer wears a lot of different hats, but they are also there as someone the athletes can talk to. I let them know that they are more than an injury, they are a person. If they need to talk, I’m willing to talk to them and help them out the best I can.

Walk me through a typical day.
Since I work in outreach, there will be several days a week that I will be in the clinic, helping the physicians. I perform an initial exam on a patient and prep the doctor for what they will be walking into. When my clinic responsibilities are over in the morning, I head to Santa Fe College five days a week. There I supervise a doctoral athletic training student. Together we manage game and practice coverage, as well as injury rehabilitations. With the climate we are in right now, COVID-19 presents its challenges. I’ve taken on a big role with managing COVID-19 issues at Santa Fe. We implemented a testing program this semester involving rigid protocols, including setting up physician visits and facilitating EKGs, if necessary. COVID-19 adds a lot more than what I expected when I first took the job in December 2019. It has changed what I thought I would be doing quite a bit.

What is the most frequent injury you see at UF Health?
With the doctors that I work with, I see mostly arthritis, knee osteoarthritis and shoulder arthritis, but there are also ACL and ligament injuries. Other injuries like ankle sprains, knee sprains, shoulder tendinitis and other overuse injuries are common. Once in a while you get the uncommon things, but for the most part it is typical athletic injuries.

How do you motivate athletes who are in recovery from an injury?
In the college setting for the most part, the athletes are usually self-motivated because they are here to play sports and they want to get back to doing so. Other than that, on a day-to-day basis to motivate them, I show them the progress they have made. It’s little things like that. If you just take the time to get to know them a little bit more personally, they trust you and then you don’t have to outwardly motivate them. They understand you are coming from a supportive place.

The UF College of Medicine’s department of orthopaedics and rehabilitation offers an adolescent and high school sports athletic training outreach program in the local area. Can you tell us more about the program?
The athletic training outreach program covers any school in Alachua County, Levy County, Gilchrist County and Columbia County. The schools are staffed by either an athletic training graduate assistant or a doctoral student. Each supervisor has three schools and goes to the schools at least once a week to work with the head athletic trainer at that school and ask them what they need. Then we facilitate that, like getting an athlete to see an orthopaedic doctor and sharing ideas for certain rehabilitations. We are growing the next generation of athletic trainers as we are preparing them for their first job. As far as the department goes, the support from the orthopaedic physicians is amazing. The physicians are accessible and available at almost all points in time. We have direct contact with them so we can facilitate scheduling athletes’ visits. The program provides first level care. This access to physicians and resources doesn’t happen everywhere.

 

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Steve’s Journey: From Stroke to Recovery

Alachua County sheriffs are highly trained in firearms and diligent about safety precautions, but mixing in a medical emergency during shooting practice took everyone by surprise. Dozens of first responders suddenly were called on to save one of their own, who suffered a stroke during shooting practice. Follow Steve through his journey, from his life threatening moments to an outpouring of support and finally a journey back that would change his life forever.

Video Transcript

Steve Maynard:

When I woke up, it was devastation.

My name is Steve Maynard. I'm a law enforcement officer here in Alachua County.

Well it was really a normal day, what I thought was a normal day. It was April 10th of 2017.

I was getting ready for work; I was working specifically in the training bureau, and I was going to actually shoot that day.

As a law enforcement officer we train routinely; obviously firearms is one portion of the training, and things took a drastic turn.

Literally, I was on the firing range and I got a sensation, immediately, that I was getting weak, and I felt like that I was losing my strength, and my strength specifically on the left side of my body. And when that happened, I recognized pretty quick that something was was very serious.

I was able to re-holster my firearm. I turned away to the trainers and mentioned to them that something serious had just happened to me.

At that point, I lost the ability to talk.

My other first responders, which I had 30 to 40 first responders with me at that time, they kind of knew what to expect, and they knew that it was likely a stroke.

I was what I thought was in perfect health. I would run half-marathons, you know, I was on the S.W.A.T. team at the Alachua County Sheriff's Office. So having a stroke was was quite a shock.

Brandon R. Allen, MD:

Captain Maynard's case was unique. There's only a handful of cases that you usually remember your entire career, and his is going to be one of them for me. When he came in he immediately went into one of our resuscitation bays. You could tell that he could understand what we were asking him, but he could not form any type of logical response. This part was really concerning to me, along with his agitation and how he really was refusing care, which I don't think was his norm.

And he was fighting IVs and fighting the group and we had to take control of that situation, and the best way to do that and get that CAT scan, which is really the best way to identify a stroke syndrome, was to sedate him and give him a breathing tube and put him on the ventilator.

Brenda Maynard, Steve's wife:

As soon as I arrived at the emergency room I was escorted directly to the stroke units. One of the first decisions that I needed to make when I arrived at the ER was to sign off to put my husband in a medically induced coma. It was a very scary situation, but reflecting back on that time, I'm so very grateful for their professionalism and the way they communicated with me, and they took quite a bit of time to show me and talk to me about the, the results of the CT scans and and what it looked to be as far as his next step for care.

Anna Khanna, MD:

Steve had an unknown and newly diagnosed clotting condition called Antiphospholipid Antibody Syndrome, which causes clots to form really anywhere in the body, and he had a clot that formed in an artery inside the brain and caused his stroke. Overall, he looked in a pretty poor neurological condition.

Steve Maynard:

When I woke up, I wanted to communicate with my wife. I wanted to communicate with the doctors, I wanted to answer questions and I couldn't, I couldn't communicate. It was, it was gibberish that came out of my mouth, and I tried to communicate and write, and I couldn't, I couldn't write.

The only thing that went on the piece of paper was, literally, just like a line; basically it's all that came out. My ability to communicate in speech was at a level of maybe a kindergartner.

Anna Khanna:

Steve had what we call is an Expressive Aphasia. He was able to comprehend, he was able to follow commands, but he was unable to express himself and allow people to understand what he was thinking and what he needed.

Steve Maynard:

Well, emotionally, it was devastation for me, I mean it really was.

Every stroke patient is going to have some varying degree of depression. The onset could be really quick, you know, "Oh my gosh, you can't read, write or talk." It's pretty depressing. And then over a period of time you recognize that, this is not going to be like, you know, breaking a bone.

If you don't have some sort of support system in place, that's where the depression comes in. For a period of time, I didn't, didn't necessarily want to be there. That's what happens, I think, with a stroke patient is: You're not sure whether or not you really want to be here, and if you want to, you know ,continue on.

My identity is as a law enforcement officer; I've done this for almost 25 years. I lost my identity.

"I don't understand."

Nicole Ferrier, MA, CCC-SLP, CBIS:

Now read the word,

Steve Maynard:

"I" - "I stone..."

Nicole Ferrier:

Rehab plays such an important role, especially in the beginning recovery stage.

When Steve came to rehab and when he first saw me for speech therapy, he had a pretty severe aphasia. He was unable to read, he was unable to write. So we would practice naming pictures, we would practice describing photos.

Steve Maynard:

"Shaller- her ta-ta-tailer - taaler."

Nicole Ferrier:

These patients are needing intensive therapy daily, seven days a week, in order to recover from their stroke.

Steve Maynard:

Daily, the doctor at UF Health, or doctors at UF Health, would show up and they would show me an object. And one of the objects that they showed me was a paper clip.

And i didn't know what it was. I could see it, I understood what it was used for, I just couldn't communicate it to you.

Extreme frustration. Extreme frustration on my part.

After probably a week, maybe two weeks; when they showed me that paper clip and I was able to say:

"Pa-per clip. Paper clip. Paper clip."

It clicked, and it clicked and I knew then that I could come back. And after a week of frustration and not being able to communicate, I knew I had the ability to bring it back.

At that point, I knew my timeline, you know, I knew that within a six-month period that you're going to get most of your gains. The doctors had communicated that to me.

Okay, so I've lost a week; lets rock and roll, i'm ready.

Nicole Ferrier:

Steve was very fortunate to have Brenda as such an incredible support system.

She had past experience of being an educator and being a teacher. And so now she was using these,
you know, simplified books and activities that she was doing with her students; now she's doing it with her husband.

Brenda Maynard:

I spent a lot of years teaching students with autism and teaching them how to speak and how to communicate, and so thankfully I was able to use some of those previous skills that I had to work with my husband.

Steve Maynard:

She was an instrument and of me coming back and I'm here.

The rehab folks at UF Health and my wife literally taught me my colors, the names of my family and my kids, how to speak again, how to interact and communicate with the rest of the world. They helped me get my identity back.

If it weren't for that support system, I don't know that I could have made it. And I hope and I pray for every other stroke patient that's out there has that support system.

Nicole Ferrier:

He had incredible support, not only from his family but from his work family as well.

Brandon R. Allen, MD:

The first responders that were around Captain Maynard had a big impact on his prognosis and their recognition that something was wrong and getting him to our UF Health and a comprehensive stroke center impacted his potential disability.

Steve Maynard:

There was a stroke team that was was ready. There was a an army of individuals, people that are professionals in how to take care of someone that is a stroke patient. It's not just the doctors on the stroke team, I can tell you that the compassion that I was given with the nurses, with the speech therapist who sat down hours and hours  and hours to teach me to say a single word.

The compassion that they gave to me, not just me, to my wife and my family was instrumental in me being here today.

To date, I still have that paper clip. That paper clip symbolizes hope, and I had the ability to communicate back to the rest of the world.

I'm communicating with you today. I'm talking with you today.

I'm here and I was able to make it, and beat it.

My name's Steve Maynard. I'm a survivor of a stroke, and I'm here because of UF Health.

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Why Patients with Diabetes are More Prone to Amputations and How Plastic Surgery Intervenes

Approximately 34.2 million Americans have diabetes and approximately 88 million Americans have prediabetes, according to the Centers for Disease Control and Prevention’s National Diabetes Statistics Report 2020. On March 23, we recognize American Diabetes Alert Day to inform the public about the seriousness of diabetes and the importance of understanding the risks.   

Harvey Chim, M.D., FACS, an associate professor in the division of plastic and reconstructive surgery at the University of Florida College of Medicine who works with patients who have diabetes, said people with diabetes are more susceptible to having amputations because they are prone to infection, such as gangrene, and often experience a loss of blood supply. They also have an increased chance of not healing well after minor injuries, which can result in complications that often lead to an amputation.

Chim explained that some people with diabetes have peripheral neuropathy, which is damage to the peripheral nerves in hands and feet. This increases the possibility of wounding themselves since they have numbness from nerve damage.

“Any small scratch or wound can become infected and this could lead to further complications,” Chim said. But if these wounds are treated promptly, amputation can be prevented.

“Sometimes patients with diabetes develop a disease that involves the small arteries in the feet or somewhere in the leg that causes ischemia, which is when the blood supply is cut off at the feet,” he added. This is what can lead to gangrene or other complications resulting in amputation.

Chim performs skin and nerve procedures on patients with diabetes, including skin grafts, local flaps or free flap procedures to cover wounds and prevent amputations. Free flaps, a procedure used for more severe wounds, involves taking tissue from somewhere else on the patient’s body and moving it to the wound site.

When needed, if the patient has neuropathy or a pinched nerve, Chim operates to remove pressure from the nerves. He can also redirect the cut nerves from an amputation to reduce the risk of formation of painful neuromas.

Before plastic surgery, patients with diabetes have to take a hemoglobin A1C test, which measures the amount of blood sugar attached to hemoglobin, so surgeons know if their diabetes is under control before the procedure. If the Hemoglobin A1C test results in an elevated number, it could lead to a high risk of complications from surgery.  

“Patients have to keep their wounds clean and get their diabetes under control before surgery,” Chim said.

At UF Health Plastic Surgery and Aesthetics Center, we are fortunate to offer a range of surgical procedures for our patients with diabetes to give them the highest quality of life possible.

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In recognition of World Kidney Day, UF Health physician answers questions about kidney disease

Chronic kidney disease doesn’t always come with warning signs or symptoms. To one University of Florida Health physician, it is a silent killer.

March 11 is World Kidney Day, a designation that aims to raise awareness of the importance of kidney health, preventive care, risk factors and how to live with kidney disease. The theme for World Kidney Day this year is “Living well with kidney disease”. This year, the focus is on supporting those who are currently affected by the disease. The theme represents increasing the awareness and education about effective symptom management and patient empowerment.

Chronic kidney disease, or CKD, is a progressive loss of kidney function over a period of months or years. CKD is incurable and patients require lifelong care. UF Health is dedicated to raising awareness of the importance of kidney health, reducing the frequency and impact of kidney disease and its associated problems.

Chintan Shah, M.D., an assistant professor of medicine in the UF College of Medicine’s division of nephrology, hypertension and renal transplantation, answers questions about chronic kidney disease, prevention and the effects cancer and cancer treatment have on the kidneys.

His area of interest is in onco-nephrology, which is a specialized area of nephrology that works with patients with cancer and kidney problems. 

Q&A

Q: Tell me more about onco-nephrology and the kind of patients you treat.

A: Onco-nephrology is a subspecialty of nephrology that focuses on caring for patients who have a history of cancer and kidney problems. Patients with cancer are surviving longer with newer treatments and kidney disease is a frequent complication for those cancer patients. The understanding of different chemotherapy treatments is important because it has to be approached differently in patients with kidney disease. It could require adjusting the doses or patients may experience different side effects relating to the kidney damage.

Q: What effects does cancer or cancer treatment have on the kidneys?

A: There are certain conditions where cancer itself can spread to the kidneys, like multiple myeloma, leukemia and lymphoma. During the course of treatment, cancer patients can have horrible side effects that cause damage to the kidneys, like having an electrolyte imbalance. Whether the kidney disease is already present or develops after treatment has started, therapies need to be developed with kidney function in mind or it can cause further damage.

Q: What are some of the leading causes of kidney disease?

A: In general, the most common causes of kidney disease are diabetes and hypertension. There are also some medications that can damage the kidneys like NSAIDs, a type of anti-inflammatory medication. If taken in large amounts for long periods of time, they can have negative effects on your blood pressure and restrict the kidneys from working well. Sometimes being sick in general, like having a severe infection, can ultimately damage the kidneys. If left untreated, these infections can result in chronic kidney disease in the future.

Q: What are some things that patients can do to prevent kidney disease?

A: Something patients can do to prevent kidney disease is to stay in good health. The sicker you are, the sicker your kidneys will be. So, follow up with your doctor, be sure to complete regular blood work and avoid medications that can hurt your kidneys. If you have diabetes or high blood pressure, it’s important to work with your physician to manage those conditions.

Q: Who is most at risk for developing kidney disease?

A: Approximately 14% of people in general populations have some form of kidney disease. CKD becomes more common as age increases; it occurs in about 40% of people ages 65 and older, and is more common in women. These people are most at risk, along with people who do not follow up at the doctor regularly, or who have uncontrolled diabetes and uncontrolled blood pressure.

Q: What can people do to reduce their risk?

A: The best way to reduce your risk is to learn more about your medical conditions and not live in denial if there is an issue. It’s important to follow up with your doctor regularly, complete routine lab work, maintain overall good health through a balanced diet and exercise, and control conditions such as diabetes and high blood pressure. 

Q: What are some signs or symptoms that someone could be developing kidney disease?

A: Kidney disease is a silent killer, meaning that it does not have any signs or symptoms when patients first begin to develop it. Some patients can have a major loss of kidney function before experiencing any symptoms. It is very important to follow up with your doctor and ask them if you’re at risk of CKD.

Q: Can you describe the different stages of kidney disease?

A: There are five stages when describing chronic kidney disease. Kidney function is measured by the glomerular filtration rate, or GFR, which is how much of your blood is being cleaned by your kidneys every minute. Healthy kidneys clean 120 mL of blood every minute. When that number goes down, we classify it into stages. Stage 1 is kidney damage with normal or high GFR of 90mL/min or more. Stage 2 is 60 mL/min to 89 mL/min; stage 3 is 30 mL/min to 59 mL/min; stage 4 is 15 mL/min to 29 mL/min; and less than 15 mL/min or on dialysis is stage 5. Stage 5 is also known as end-stage renal disease, when patients ultimately end up on dialysis.

Q: Are there any routine tests a patient can request from their primary care provider?

A: For kidney disease, we can use the results of creatinine from blood work to estimate overall kidney function. Additional tests your doctor could run is urinalysis to check for excess protein or blood in the urine, and they can also do an ultrasound of the kidneys, depending on your initial results. 

Q: What do people living with chronic kidney disease go through, and how do you help those patients manage it?

A: Patients with CKD have a kidney that is not cleaning the toxins from their blood in appropriate amounts. As the kidney disease worsens, there can be certain restrictions like reducing salt and potassium or fluid in a diet. Patients may be limited in the amount of protein they can eat based on the stage of their CKD. In certain situations, we may have to adjust their medications and avoid others to prevent further damage.

Q: Is kidney disease something that you can manage until it goes away or once you have it does it continue for a lifetime?

A: There is no cure for chronic kidney disease. Once formed, it is lifelong, but our job is to make sure it doesn’t get worse. Treatment can slow or even stop the progression of the disease. We don’t want to see the disease worsen to the extent where the kidneys are not able to effectively clean the blood.  At this stage, there are two options – dialysis or a kidney transplant. Approximately 750,000 patients are on dialysis and 75,000 patients are waiting on the transplant list to receive a kidney in the United States. Sadly, it is not feasible for every patient to receive a transplant and many will need to rely on dialysis. We aim to detect CKD before it progresses to that point. 

Q: How can we make living with kidney disease easier for patients?

A: To make living with kidney disease easier for patients, we need to increase awareness that the disease does exist and that it is a silent killer. Once that is understood, patients should know that it is important to follow up with their doctor regarding this condition. Early detection is vital to preventing the progression of CKD. Patients living with CKD should be empowered to participate in their health care decisions and learn more about managing conditions, like medication and nutrition that can affect the kidneys.

Q: Is there anything else you would like to add in reference to World Kidney Day?

A: I advise everyone to talk to your doctor about your creatinine results and ask about your kidney function. Do your best to stay in good health, which ultimately results in healthier kidneys.

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Utah nurse with COVID-19 discharged from UF Health after double-lung transplant

Jill Holker spent her days on the front line as an ICU nurse in Utah, caring for some of the sickest people in the state. Prior to contracting COVID-19 in the fall of 2020, Holker was active, with no underlying health concerns. 

Yet, as the COVID-19 pandemic has proven, the coronavirus affects everyone differently. In Jill’s case, the disease would cause a role reversal by making her an ICU patient. She needed a double-lung transplant, which led to Jill’s 2,000-mile journey to UF Health Shands Hospital.

Despite the distance, Jill said she felt right at home in the hands of UF Health’s distinguished hospitality and care teams.

“This hospital is great, very knowledgeable, the staff are great, the doctors are great,” Jill said. “There’s a handful of people that I feel like were really fighting for me, like sincerely fighting for me, and it’s staff and it’s people who never knew me. 

“I think that’s one of my biggest takeaways is that this place has got a lot of caring people,” she said.

Watch the video above to see how Jill found a new family at UF Health who helped her battle her condition and receive new lungs before being discharged to continue her heroic work in Utah.

Jill’s story comes during a moment of great pride for the UF Health Shands Hospital’s lung transplant program, which earned national recognition a month ago.

The Scientific Registry of Transplant Recipients, or SRTR, is the most comprehensive national database of organ transplant outcomes and provides quality oversight for hospitals who conduct solid organ transplantation. Data in the SRTR database are largely collected directly by the Organ Procurement and Transplantation Network, or OPTN, and are used by patients and health professionals alike to decide where to go — or refer someone — for a transplant.

In SRTR’s January 2021 year report, UF Health Shands Hospital’s lung transplant program’s outcomes exceeded its previous years in each category, making it the top-tier program across the Southeast. Nationally, the UF Health Shands Hospital lung transplant program ranked as the best in the United States for one-year, risk-adjusted survival rates.

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UF Physicians Address the Value of COVID-19 Vaccines

Despite so many waiting anxiously for the arrival of COVID-19 vaccines, many others are hesitant to get inoculated, even as more vaccines gain approval from the FDA and with increasing availability to the general public. 

This “vaccine hesitancy” stems from several concerns, but a few of them are more widespread among those who are on the fence about getting vaccinated.

Several UF Health physicians and researchers have weighed in on many of these important issues, offering unbiased information based upon the science involved.

Folakemi Odedina, Ph.D., tackles some of the common myths regarding the vaccines:

Michael Lauzardo, M.D., M.Sc., shines light on why the vaccine development process should be trusted:

Folakemi Odedina, Ph.D., expands on the clinical trials and why all populations should trust the vaccines:

Natalie Dean, Ph.D., describes what the vaccines are meant to prevent:

Jessica Heft, M.D., explains why being pregnant didn’t deter her from getting vaccinated:

John Smulian, M.D., M.P.H., elaborates on why the vaccines are safe for pregnant women:

Ira Longini, Ph.D., discussed the importance of being community-conscious and practicing safe behavior, even after being vaccinated:

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There’s nothing sweet about the relationship between heart disease and cancer

When the calendar changes to February, red and pink heart-shaped candy fills store shelves in preparation for Valentine’s Day. Let those hearts also serve as a reminder of another February event: American Heart Month.

Health conditions, lifestyle choices and family history can all increase your risk of heart disease. But did you know that cancer and heart disease have been linked? 

There’s nothing sweet about their relationship — studies have shown heart disease may increase your risk of developing cancer, and cancer treatments may increase your risk of heart disease.

A 2019 National Health Institute-funded study found heart attack survivors were more likely to develop cancer than those without cardiovascular disease. Even just being high-risk for cardiovascular disease puts individuals at a higher risk of developing cancer. Cancer and cardiovascular disease share many of the same risk factors, such as tobacco use and poor nutrition, but researchers are still working to identify if there is a biological link between the two.

Conversely, a study published in the European Heart Journal found more than one in 10 cancer patients die not from their cancer but from heart problems. Cancer patients dying from cardiovascular disease was highest in those who had bladder (19% of patients), larynx (17%), prostate (17%), womb (16%), bowel (14%) or breast (12%) cancers.

“We now know that there are strong links between cancer and cardiovascular disease, or CVD, as cancer patients have two to six times higher risk of death due to CVD than the general population,” said Carl J. Pepine, M.D., a professor of medicine in the UF College of Medicine’s division of cardiovascular medicine and a UF Health Cancer Center member. “This is particularly true for breast, uterine, thyroid and prostate cancers.”

The study also found cancer patients are at higher risk of dying from heart disease and stroke than the general population. This could be due to other illnesses and problems being detected when they entered the hospital or because of aggressive treatment, such as chemotherapy, radiation therapy and targeted therapy, that often comes after a cancer diagnosis.

“The reasons are not always clear; some of it relates to shared risk factors between CVD and cancer, like older age, smoking, obesity and chronic inflammation, but some of it relates to cancer therapy,” Pepine said. “I hope that this will increase awareness and lead to a more proactive dialog between patients and their providers about choices for therapy.” 

According to Cancer.Net, heart conditions that can develop after cancer treatment are:

  • Cardiomyopathy and congestive heart failure
  • Coronary artery disease
  • Damage to heart valves
  • Myocarditis
  • Problems with the pericardium

The American Cancer Society recommends protecting your heart health during and after treatment by:

  • Creating a survivorship care plan
  • Eating a healthy diet
  • Getting recommended cancer screenings
  • Getting regular exercise
  • Getting to and staying at a healthy weight
  • Keeping your follow-up appointments
  • Taking care of your emotional health
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Mother of Three’s Mission to Eliminate Her Migraines

For Kimbirli “Kim” Feezell, of Starke, trauma struck twice.

About 10 years ago, the mother of three was bucked off her horse after the animal’s bit, which helps the rider control a horse’s actions, pinched its lip — sending the horse into a frenzy.

“My head bounced like a basketball on concrete,” Kim said.

Then, on a foggy morning nearly five years ago, while she was driving her daughter to kindergarten, a truck collided head-on with Kim’s vehicle, clipping her left-front bumper, sending her car spiraling and leaving her with a herniated disk, pinched nerves and whiplash.

Kim’s two instances of fate likely left her with a debilitating neurologic condition that affects many people — migraines.

According to the Migraine Research Foundation, nearly one in four households in the United States includes someone with migraines. It is estimated that 39 million men, women and children in the U.S. suffer from this neurological disease. 

Although Kim physically recovered from both accidents, she experienced migraines that left her in so much agony she could barely walk.

“I’d rather birth 10 kids than have a migraine,” she said. Kim smiling at the camera with her daughter and grandchildren standing against a wooden door that features a Christmas wreath.

Kim’s pain radiated from the back of her neck to her temples. Oftentimes, she experienced vomiting and other discomfort for three to four days in a row.

“(The headaches) felt like a sharp pain — like someone was stabbing you,” she recalled.

During this dark period, Kim sought the help of a neurologist and was prescribed medication, but to no avail. 

For over a year, Kim, a surgical coordinator at UF Health, explored other options. In September of 2020, she learned about migraine surgery performed at UF Health Plastic Surgery and Aesthetics Center at Springhill – coincidentally, situated one floor above where she worked.

“I finally found something that could possibly fix the issue,” Kim said.

Migraine surgery is an alternative for patients with chronic migraines who have found no relief from nonsurgical treatments. Surgery focuses on decompressing or removing small nerves near specific areas of the head where a migraine starts before it spreads.   

Kim scheduled a consultation with Harvey Chim, M.D., FACS, a UF Health plastic surgeon who specializes in peripheral nerve surgery. On the basis of Kim’s history and as a result of her physical exam, Chim, an associate professor in the UF College of Medicine, surgery was recommended to relieve pressure on the greater occipital nerves at the back of her neck.

On Oct. 21, 2020, Kim underwent outpatient surgery, where Chim discovered that both greater occipital nerves at the back of her neck were severely compressed and damaged, likely caused by the trauma inflicted from both accidents and the culprit of her migraines. 

Since her surgery, Kim’s quality of life has improved. She’s suffered only occasional headaches that she said are tolerable and fade away with oral medication. 

If you or a loved one are experiencing chronic migraines and have tried nonsurgical treatments that have not been effective, schedule a consultation with the UF Health Plastic Surgery and Aesthetics Center – Springhill. 

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30 years of strength

Jacquelyn Hall describes her patient of 30 years, Vivian Holloman, as hilarious, sarcastic and “sweet as can be.”

Hall, a vascular access coordinator and dialysis technician, has known Holloman as a dialysis patient since she started working at UF Health in 1998.

Holloman began her dialysis treatments in 1990, and this year she reached the outstanding milestone of 30 years on dialysis. 

End Stage Renal Disease (ESRD), which causes a person’s kidneys to cease functioning permanently on their own, requires Holloman to come in three times per week.

Hall worked with Holloman for about four months before the connection was made that Holloman knew Hall’s sister because they were both residents of Chiefland, Florida.

“My sister told me her nickname, which is ‘Penny,’ and everyone from Chiefland knows her as this,” Hall said.

This familiarity sparked an instant connection. Hall would sing “happy birthday” to her every year, and always comforted Holloman and provided clarity before procedures.

Hall’s main job responsibilities include maintaining the water quality testing of dialysis machines, coordinating with patients who do not have permanent dialysis access and getting patients on the road to permanent dialysis. She also trains nurses on how to cannulate patients, which is inserting a tube into the body, usually for the delivery or removal of fluids.

Of those nurses, Ronald Komorowski, R.N., on the dialysis unit, has worked with Vivian since 1995. Komorowski and Hall would describe Vivian as outgoing, outspoken and caring.

Komorowski says the most inspiring thing about Holloman is her tenacity.

For Holloman’s milestone, Hall knew that a celebration must take place.

“Vivian was, of course, so humble about it,” Hall said. “No one knew about her 30 years until one of her dieticians came in and told us.”

With the help of other staff that knew Holloman, the celebration planning kicked into full gear.

“I called a friend of mine and she helped decorate the lobby all the way to her room,” Hall said. “We made a big array of balloons over her door.” The staff decorated Holloman’s room and the lobby in purple and gold, which are Holloman’s favorite colors.

Since purple is Holloman’s favorite color, every balloon and decoration was purple and gold. The food consisted of small fruit cups, chicken wings, Christmas butter cookies and coffee.

To make Holloman feel even more loved, Hall contacted two previous dialysis technicians that Holloman was close with before Hall started working at UF Health. Holloman got to speak with them on the phone and said it made her entire day.

Coming in 12 times a month for treatment is not always easy, but Komorowski says Holloman always embodies an uplifting spirit.

“She has survived 30 years of dialysis and endured numerous procedures and medical treatments,” Komorowski said. “This in and of itself may be more than most people could tolerate or survive.”

Holloman says this 30-year milestone keeps her hopeful.

“I just keep living, moving and going,” Holloman said.

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Gainesville Native Travels Back Home for Unique Migraine Surgery

Over the past year, people across the globe have longed for togetherness — separated from loved ones near and far for an indefinite amount of time because of the ongoing COVID-19 pandemic. But for Kimberly “Kim” Walliser, of Wimauma, Florida, her longing to embrace those around her had become an unfortunate fact of her life.

Kim, who was diagnosed with chronic migraines, often missed family and friend gatherings — like her grandson’s fourth birthday party in October. Instead, she would cocoon herself in a dark room in her home, absent of noise or light.

In 1996, Kim, a nurse, developed monthly migraines that lasted one to two days. The onset of her headaches was sudden and, regrettably, she was no stranger to the neurologic disease, as it affected her grandmother and mother.

Kim recalled her first migraine episode that ended with her in the hospital.

“My husband (Karl) came home, and I couldn’t speak,” Kim said.

Kim and her husband, Karl, celebrating their 35th anniversary.

Karl, a farmer, rushed Kim to the hospital where doctors performed a series of tests, including a lumbar puncture and a CT scan. The end diagnosis: a complicated migraine.

For nearly two decades, she persevered without the need of medical intervention until her migraines intensified unexpectedly in 2015. Rather than having her migraines last for a day or two, her migraines began to last for weeks.

Kim started seeing a neurologist in Tampa who placed her on a daily migraine medication. She also tried Botox®, trigger injections and medical massages, and was referred to a pain clinic and a pain management program. But she saw no improvements.

Kim’s job caring for others became increasingly difficult as her head continued to throb and pulsate.

“My neurologist was at the end of her rope,” she recalled.  

She was also at the end of hers — if she continued to suffer from chronic migraines, then she would need to quit her job as a nurse.  

Kim then turned to the internet.

Born and raised in Gainesville, Kim wanted to seek a second opinion from experts at UF Health. She learned about migraine surgery, an alternative for patients with chronic migraines who have found no relief from nonsurgical treatments. Surgery focuses on decompressing or removing small nerves near specific areas of the head where a migraine starts before it spreads.  

Kim scheduled an appointment to meet with UF Health plastic surgeon Harvey Chim, M.D., FACS, who specializes in peripheral nerve surgery.

During her consultation, Kim was able to point out the areas of pain on her forehead, temples and behind her eyes. After additional testing, it was discovered that Kim had a deviated septum and a bone spur in her nose that could have been causing the pain behind her eyes.

Chim, an associate professor in the division of plastic and reconstructive surgery at the UF College of Medicine, recommended moving forward with surgery that involved decompression of nerves in the forehead and temples and removal of the bone spur in her nasal septum.

“Dr. Chim was very knowledgeable and was able to answer all my questions,” Kim recalled.

Since her surgery, the number of Kim’s migraines have drastically reduced. Although she still has occasional run-of-the-mill headaches, she explained the transformation as “tremendously different.” She can manage her headaches with over-the-counter medications.
Kim Walliser is smiling at the camera with a mountain landscape in the background.
Now, Kim enjoys the little things that she took for granted, like grocery shopping and going to the movies.

“I have missed out on so many family and friend functions because of migraines,” Kim wrote in an email. “I look forward to not missing out on those functions anymore.”

If you or a loved one are experiencing chronic migraines and have tried nonsurgical treatments that have not been effective, schedule a consultation with the UF Health Plastic Surgery and Aesthetics Center – Springhill. 

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From Tragedy to Hope: The Story of Moe Ricks’ Optimism in the Face of Tragedy

In July 2019, UF Health staff wheeled Maurice (Moe) Ricks into surgery to prep him to receive a new heart and kidney, which were in transport on a plane to Gainesville, Florida. Fate would intervene as the transport team comes face-to-face with a potential life-or-death situation. In an unlikely twist, talented artists would  provide Moe a unique perspective on what it means to hope and persevere in the face of tragedy.

Listen to Waiting (.MP3)

Download Waiting, a song by Moe Ricks and the Arts in Medicine team. Contributors: Moe Ricks; Ricky Kendall and Michael Claytor, Musicians in Residence; Andrew Hix, Writer in Residence; Dr. Edward Staples; and Diana Andersen-Davis, RN.

When Tragedy Strikes: Video Transcript

Maurice Ricks
I'm Maurice Ricks. I'm a recording engineer. I own a company called One Moe Productions in Jacksonville, Florida. I've always loved music since I was a child, and I used to bounce at a club that had a lot of bands that would come through. When they'd bring in the audio gear, I would help load in, load out and got interested in it, and then somebody told me about Full Sail. I went to school down there, studied recording engineering, and I've been doing it ever since.

What I love most about it is the creative freedom. I get to get emotions out through music when I make my own music or even working with other people. I just love spending my time being creative and making things.

I was born with kidney issues, which led to high blood pressure, which led to a congestive heart failure. It just progressed to the point where we are now. So now they need to do the heart transplant and a kidney to support the heart transplant. The day they came in to tell me “we found organs” was just - I don't know. I was scared. I was happy. I was sad that somebody died, you know what I'm saying, for me to live. Then around 5:00 in the morning, they took me down for surgery.

Mandy King, CTBS
Once a heart is procured, you are in fast mode again against a time clock. It's a time constraint from that point on, and you're rushing in the ambulance getting transported to the local FBO, which is your airport.

Mark Bleiweis, MD
We time the donor procedure and the donor timing with our recipient timing, so that we minimize the time that the heart is not getting blood or is ischemic.

Jennifer Frederick, RN, BS, CCTC
Mandy sent me a text when they were leaving the hospital. She sent me a text when they were at the airport getting on the plane, and as I do every single time, I texted back "Have a safe flight."

Narrator - Text
It was supposed to be a routine flight.

Edward Staples, MD
Pilots cranked up the engines and started rolling down the runway. As we were taking off, the plane lifted off normally, and all of a sudden it sounded like a very solid door slamming very fast, and the plane shook a little bit.

Mandy King, CTBS
And the pilot turned around and said, "We're okay. It was a bird. We're okay.”

David Young
A bird strike can occur really at any phase of flight. More often than not, it's either the takeoff and landing phase and can hit any part of the aircraft. They also can do more damage to an aircraft than people maybe think. You can have a bird ingested by the engine and cause damage to the engine. In this particular instance, shortly after we took off, we hit a bird or birds. We assessed some of the systems immediately and things appeared normal, and so it's a situation where you just carry on and you finish your mission. It wasn't until several minutes into the flight where things started changing.

Edward Staples, MD
We climbed up through the clouds and nothing was happening, but at 9,000 feet, the engine made this groan. It reverberated throughout the plane.

Mohammad Al-Ani, MD
We started hearing very strange mechanical noises back in the rear part of the plane.

Mandy King, CTBS
I actually laid down for a minute, and then woke up to Dr. Staples waking me. There's a roaring in the left engine, and it sounds like somebody threw a brick in a blender.

Mohammad Al-Ani, MD
A few seconds later, there was a smoke coming out of the ventilation, and we learned later that basically that smoke was the burning oil that was leaking from the engine.

Edward Staples, MD
It was then the pilot turned around and said, "We don't have any oil pressure. I'm shutting the engines down."

David Young
The oil pressure in the left engine began to decrease, and so at that point you go into securing the engine.

Mohammad Al-Ani, MD
There were red lights, red emergency lights, and we had obviously limited communications with the pilots, because they're trying to focus on getting us somewhere.

Edward Staples, MD
Right after that, I think we all just dealt with it ourselves. There was no group hug. We're all going down together. I started texting. Everybody started texting. This is to Nancy. I texted her first. I said, "plane hit a bird. engine on fire. plane going down." I just texted her again, it said, "plane on fire. going down. love you lots. Hope this plane lands somewhere," because I didn't know if I was going to make it.

Mandy King, CTBS
Things are getting real raw. “Am I going to make it home, for one. Am I going to get this heart home?” I knew that my recipient was open and on the table, because I sent that message at 5:12 that morning, and then my next text message was to my husband. "I don't know if we're going to get this heart home. I don't know if I'm going to make it off this plane, but I love you."

Edward Staples, MD
It wasn't until you could hear the other engine powering up that I thought we'd be alright.

Zachary Espenship
Most of pilot training, once you know how to fly the airplane, most of it is what to do when stuff goes wrong.

David Young
What this really is is a single-engine approach in landing, and we do multiple of these each time we go back for recurrent training, which we do that every six months.

Mohammad Al-Ani, MD
We were very lucky to have very experienced people to use one engine to maneuver that, limited visibility, emergency landing in a small airport in time.

David Young
We did our job. We stayed focused on the task at hand, which was to secure the engine and make a safe, single-engine approach and landing to get everybody back on the ground safely.

Video Text
The plane landed at a small airport near Atlanta.

Mandy King, CTBS
Pretty terrifying, but also, you have an organ on board, and now I'm thinking about the recipient.

Mark Bleiweis, MD
We got word that the plane was making an emergency landing, that something bad had happened with the plane, and so we were all frightened for our team. I mean we first and foremost, we're frightened for our team. Once we knew everybody was safe, then we refocused our attention to what was going to happen with our potential recipient. We know he needed, he needs this heart, and he was also going to receive a kidney. Mr. Ricks was open, but we hadn't gone on the heart-lung machine or anything like that, but we had started to prepare things.

Edward Staples, MD
It was at that point that, we turned off the engines, we got out of the airplane, I immediately turned my focus to the heart.

Mohammad Al-Ani, MD
The first reaction really that comes to your mind is, "How am I going to accomplish my mission? How am I going to get this heart to this patient?" We literally had 45 minutes to find a jet. A helicopter would have been too slow. Ground transport would have been definitely very slow.

Edward Staples, MD
I was knocking on plane doors and talking to pilots.

David Young
Every operator on the field, we called probably eight operators, and no one could get there fast enough.

Edward Staples, MD
We could never identify a plane and a pilot, either because of time constraints or liability concerns or the pilot's destination was the opposite end of the country instead of Florida. So it didn't work out.

Mandy King, CTBS
Felt defeated. At the time we landed, we would have had 30 minutes to get back off the ground. Just seven hours prior, maybe even five hours prior, we all had this huddle and talked about our recipient and how excited everyone was on the team that he was getting this combo organ set, and to know that he was going to have to wake up not having that completion.

Mark Bleiweis, MD
And so, we knew that we just, for Mr. Ricks' safety, we just had to call it, and not take a risk of putting in a heart that had been just out way too long.

David Young
The heart ultimately ended up going to research there in Atlanta. Kind of heartbreaking for us because we knew who was waiting for it here.

Maurice Ricks
They woke me up, and I was looking around and things just didn't seem right. You know, I asked them, "What happened?"

Mohammad Al-Ani, MD
At that time, he was awake out of anesthesia. First thing I said, "How are you doing?" And he said, "Well I'm having some chest pain for after the surgery, but tell me what's your understanding of what happened." And I was trying to be gentle and sensitive because I didn't know how he would react. All I can imagine is that this patient went under anesthesia expecting to have a new heart that he has been awaiting for a long time. Just trying to put ourself in his shoes, and it's a tremendous burden.

Jennifer Frederick, RN, BS, CCTC
I've been doing this 14 years or so, and in all of that time, I've only ever had, I think, two other patients that were in the operating room thinking that they were going to get an organ, and then something happened along the way.

Mohammad Al-Ani, MD
The first thing he said was, "Don't worry about it. Thank you so much for your help. You have done more than I have asked you to do. You're my hero. We'll get the heart later. It's going to be okay."

Mark Bleiweis, MD
Later that day, I went to see Moe and his family, and there was, there was no remorse. There was no sadness. They were only concerned about our team and not, you know, what he missed out on.

Maurice Ricks
It just wasn't meant to be. That was the only way I could handle it and kind of keep my sanity, you know I mean, and not break down. It was like, “Okay, well it wasn't my time. Those organs weren't for me, and now I got to heal.”

Video Text
Art springs from tragedy.

Maurice Ricks
The typical healing process in the hospital is, you know, so clinical. It's about medicines and machines. So the Arts and Medicine guys, the type of healing that they offered was basically for my soul.

Ricky Kendall
Working at the hospital, we meet a lot of different people, and a lot of them come to us via referral process. So we were referred to Moe's room. When we met him, he was just super engaging. He told us he loved music just as much as we did, and so we hit it off pretty quickly.

Maurice Ricks
They asked me what I wanted them to play, each one of them individually, and both times I was like, "Play originals. Play something you wrote." And they did, and I was just like, "Wow, these guys got talent." Now, I can tell them, I'm a recording engineer.

Michael Claytor
It was something we'd never experienced before. Moe had this technical ability of recording, so he saw us as maybe a vehicle for him to be able to record music in his room like he does in his regular life.

Maurice Ricks
I can get some gear, you know, I'll buy some new gear and have a little mobile studio set up right in the hospital room, and then they found my organs and the tragedy happened. And then we got to talking about writing a song about that.

Ricky Kendall
He came out of that situation wanting to immediately express how he is feeling. And so we kind of consisted of us listening to his story; talked to him about what parts he wanted to highlight, you know; what did he want it to feel like; what was the mood. He wanted to know about everyone else's perspective. He wanted to know about the doctors who were on the plane. He said, "I can't imagine what that must have been like." And we're thinking, you just had this horrible thing happen and you're wondering about how someone else's feeling. That's really empathetic, and it's really beautiful, and so we knew it was pretty ripe for a good song.

Maurice Ricks
Then they went for a couple days, wrote the song and came back, and it just floored me. This is so beautiful.

Ricky Kendall, singing
Something happened. Someone. I don't know. Here I am. Just let it go. Waiting so patiently for the heart that I need.

Maurice Ricks
It gave me an escape from the day-to-day, needles and tubes and blood tests and, you know, all that stuff. I had something to look forward to in getting out of the hospital. It kind of gave me hope that I would get out.

Kathleen Giery
Right now, there are more than 113,000 patients across the country who are on waiting lists at different transplant centers who are in need of a life-saving organ transplant. Their only hope for survival is getting that transplant. It's not like you can just get a medication or have a procedure done or have an operation done and get better. So without organ donors, none of these 113,000 patients are going to get that new chance at life.

Maurice Ricks
Just knowing that you passing can help another life is, you know, it's a special feeling. And now that I'm on this end of it, I really realize how special that is to be an organ donor.

Kathleen Giery
It is so easy to become an organ donor and make a decision that could ultimately save not just the life of one person or two or three. So many other individuals can be helped from one decision: "Yes, I want to be an organ and tissue donor."

Ed Jimenez
Inside of everybody at UF Health, all of our doctors and nurses, lives and breathes this idea that we've been entrusted with a great responsibility. And the responsibility is to give every single patient hope where sometimes hope doesn't exist.

Mark Bleiweis, MD
But to see a patient's optimism in the face of such a difficult situation, it reaffirms why all of us do what we do here at UF Health, and why our transplant team does what it does.

Jennifer Frederick, RN, BS, CCTC
Everyone here that I have ever worked with at UF Health, they're 100% bought in. We don't do transplant because it's just a job. We do transplant because it's our life, and we love what we do.

Edward Staples, MD
I feel like I'm just doing my job, and it's a job that I want to do. I don't want to go down any more than anybody else, but I gladly accept the risk.

Mark Bleiweis, MD
It was really incredible to think about sending messages to their family members from the plane and worried about their life, and then to immediately go right into "we've got a heart here. We got to get it back to the recipient." I know that my teammates are our heroes every time they get in a plane and bring us a heart. But that, that just put it in a whole different realm.

Maurice Ricks
I just went back on the transplant list in November. I have this guy with me everywhere I go every day, which is the left ventricular assist device, which is doing the work of the left side of my heart. My philosophy behind life is life is what you make it. I mean we go through life creating memories, and I'm trying to create some good memories, you know. Even if you have your dark days, there's always a silver lining. I just know that it's going to be over. Trouble doesn't last forever. I just kind of keep my, you know, try to keep my faith and stay strong.

Ricky Kendall, singing
Waiting so patiently for the heart that I need.

Narrator - Video Text
The bird strike happened in July 2019. As of February 2020, Moe Ricks is still waiting for a heart and kidney transplant. To learn more about organ donation, visit www.donatelifeflorida.org.

This is who we are. We are UF Health.


Other UF Health Inspire Stories

  • Eternally Intertwined
    A tragic death of a donor saved Jeff's life; when that kidney fails years later, an unexpected second donor seals his bond to an incredible family.
  • Nikia’s Second Chance
    Following an early morning car crash on an isolated country road, Nikia waited for hours with a fence post penetrating her chest.
  • Moving Mountains
    In need of a new heart and out of options, 12-year-old Andy is airlifted from the Caribbean to UF Health, taking with him a nation's well-wishes.
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Molly Brennan's picture

Finding the time to say thank you

Eastside High School sophomore Akash Verma may be one of the busiest 16-year-olds in Alachua County.

Akash is a member of his school’s Key Club, Health Occupations Students of America (HOSA) chapter, science bowl, science fair, student government and Future Educators of America (FEA) chapter, just to name a few of his extracurriculars.

In 2020, Akash was selected to be a VolunTEEN, a volunteering program at UF Health Shands Hospital for students 14-17 years old. However, due to the COVID-19 pandemic, the program was put on hold and Verma was unable to volunteer as originally planned. Now, instead of balancing his club meetings with volunteering and school, Akash was at home learning remotely.

“The process of adapting to the pandemic has been hard,” Akash said. “Staying home for so long has been pretty tough to say the least.”

Discouraged and stuck at home, Akash decided to do what he does best: get busy.

Akash wanted to create a project that would involve his fellow Eastside High School students, many of whom he had not seen in person in months. He also wanted UF Health Shands to be on the receiving end of the gesture.

“Frontline workers have done so much for all of us this year,” Akash said. “I just wanted to do something that could have potential to positively impact them in some way.”

The idea for a thank you video came first. Then came the idea to create handwritten thank you cards for frontline workers.

Akash began emailing every contact he had at UF Health Shands to ask for permission to execute the project. Once he had approval, Akash recruited members of his school’s Key Club and HOSA chapter to send in videos and write cards.

Akash and a few of his friends posted in club Facebook groups with instructions of how to take the video, how to send it in and how to create the cards.

The entire video was created remotely, with 21 students recording horizontal videos of themselves at home, then sending the clips back to Akash. From there, the video was edited together and posted to YouTube.

Cards were dropped off at various locations in Gainesville and picked up by Akash. On Tuesday, Nov. 24, Akash and his mother brought the 70 handmade cards to the UF Health Garden of Hope to distribute among frontline staff.

Irene Alexaitis, D.N.P., R.N., NEA-BC, chief nursing officer and Nursing and Patient Services vice president, was at the card distribution event and witnessed how deeply it touched the frontline staff.

“The cards inspired us,” Alexaitis said. “It was so kind for the students to recognize the nurses and staff. One of the nurses had tears in her eyes because it meant so much to her.”

Akash said that he will never forget how it felt to hand-deliver the cards to UF Health Shands employees.

“All of them were saying thank you and nice things about the project which was really gratifying,” Akash said. “They made me feel like I did something of big importance which was really nice. I will always remember that experience.”

Blog Social Image: 

Eternally Intertwined

A tragic death of a donor saved Jeff's life; when that kidney fails years later, an unexpected second donor seals his bond to an incredible family.

Doug Bennett's picture

Nikia’s Second Chance

Following an early morning car crash on an isolated country road, Nikia waited for hours with a fence post penetrating her chest.

Bill Levesque's picture

Moving Mountains

In need of a new heart and out of options, 12-year-old Andy is airlifted from the Caribbean to UF Health, taking with him a nation's well-wishes.

UF Health's picture

From Bird Strike to Hope

While Moe waits in the operating room, the medical team delivering his organs for transplant faces an in-air disaster.

Lauren Gajda's picture

The art of pediatric patient care

Anthony Macchio was already familiar with UF Health Shands Children’s Hospital. After his second daughter, Isabel, was born with a heart defect in February 2019, he and his wife, Amy Hecht Macchio, became accustomed to traveling to Gainesville from Tallahassee for expert pediatric cardiology care. But three months after Isabel arrived, their 4-year-old daughter Josephine, known as Josie, started having fevers, which led them down a path they were not expecting.
 
Josie’s fevers were not responding to children’s fever medications, so blood tests were done but did not reveal anything definitive. One Sunday morning in May, Josie awoke crying and complaining of leg pain. Additional blood work now showed bone marrow suppression, and the family was sent to UF Health Shands Children’s Hospital for more tests. 
Josie Macchio, right, plays with her sister Isabel Macchio, left
Initially, some of Josie’s bone marrow was tested, but the results still did not lead to a diagnosis. After a couple of days at the children’s hospital, her bone marrow was checked again. On May 22, the family finally had an answer but not one they were prepared for. Josie was diagnosed with B-cell acute lymphoblastic leukemia, or ALL.  
 
Children between 1 and 9 years of age respond best to treatment, so Josie’s age put her in a standard risk category. One week after diagnosis, everyone learned that Josie’s leukemia cells have three copies of chromosomes 4 and 10, mutations that make a cure very likely, making Josie a best-risk patient. 
 
“Josie was considered best-risk, and we felt fortunate because we caught it early,” Anthony said.
 
Josie started treatment immediately. After one month, a bone marrow biopsy revealed that they were unable to detect leukemia cells in that sample, another sign that she was likely to be cured.  
 
“We lived in Gainesville the whole first month of her treatment,” Anthony said. “She went through one blood infusion early on, and then cycles of other treatments. We did at-home medicine and chemotherapy through an IV in addition to spinal taps to check for and prevent cancer from developing in her brain.”
 
The logistics of traveling to Gainesville became challenging for Josie and her family. After that first month, the family traveled back and forth from Tallahassee as often as treatment was needed.
 
“Amy and I were looking forward to 2020 because in February, Josie was done with her first five cycles of treatment, which meant she would just have the maintenance cycles for another year and five months after that,” Anthony said. “With the maintenance cycles, Josie receives low-dose medication for a long period of time, so she could have found some normalcy, including returning to school.”
 
Josie’s hair had started growing back, and she was excited to return to school on March 7 after her blood work results came back within normal range. That same night, the family received a call from William Slayton, M.D., the chief of pediatric hematology/oncology at UF Health, who led Josie’s treatment plan. An unexpected turn of events crushed Josie’s hope for normalcy. 
“It’s been our long tradition to send our kids back to school during maintenance,” Slayton said. “I wish we could have done this for Josie. However, several children with this form of leukemia have gotten really sick from COVID-19 during maintenance. Until we do a better job controlling COVID-19 in our communities, kids like Josie will not be able to safely attend in-person school until after they complete their treatment. I felt terrible that I didn’t have better news.”  
 
Anthony and Amy knew that explaining this to Josie would be difficult.
 
“No one prepares you for the disappointments children who are battling illnesses experience on a regular basis, and now the pandemic added a whole new layer,” Anthony said.
As Josie and her family started spending even more time at home due to COVID-19, they tried to find ways to keep occupied and have fun. They soon realized that Josie really loved painting.

“We bought her real painting materials, including easels, palettes, canvases and more,” Anthony said. “We set it outside on the patio, and Josie started painting each night.”
 
Josie’s family began talking to her about giving back to UF Health Shands Children’s Hospital. Even at just 5 years old, Josie wanted to make a difference, so her parents helped her create an Etsy store to sell her paintings. Half of the money she earns goes directly to UF Health Shands Children’s Hospital to help fund pediatric cancer research.

Josie’s parents are grateful for the care she has received so far, and they look forward to the day when things truly go back to normal. Josie Macchio poses with a painting

“There are so many people we could thank,” Anthony said. “From her doctors, to the nurses, to her physical and occupational therapists, to her child life specialists and social workers … everyone did such an amazing job with helping make Josie’s diagnosis a somewhat livable experience. My wife and I asked so many questions, and everyone took the time to listen and respond, which eased our anxiety.” 

Josie will continue her maintenance treatment cycles through July 31, 2021, the day when she hopes to be able to say that she is officially cancer-free.    

Josie’s artwork is on sale at https://www.etsy.com/shop/cupofsillyjuice. The paintings start at $22 to remember May 22 as the day Josie’s life changed with her ALL diagnosis.
 
The homepage of Josie’s website tells her story and reasoning for opening the store: “To say thank you to my doctors and hopefully help other kids in the future, I’m making paintings so I can donate to UF Health Shands while having fun with art.

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Kacey Finch's picture

Social Media: A cancer patient’s backstage pass to cancer information, research and support

Social media is like an all-access pass — people can tap into an almost unlimited amount of information. For cancer patients, social media offers access to cancer information, research and communities.

Merry-Jennifer Markham, M.D., FACP, FASCO, associate director for medical affairs at the UF Health Cancer Center and social media editor for the American Society of Clinical Oncology’s Journal of Clinical Oncology, sees social media as a resource for patients and physicians.
 
“Social media has accelerated information to patients and to clinicians in a way that is probably mind-boggling to both,” Markham said.

A physician looks at his phone While it’s true that you can’t believe everything you read online, Markham thinks social media is a great way to spark important conversations with her patients.
 
“I love when patients bring to me things they've read on social media,” Markham said. “It’s a great way to start a conversation and can be a good segue into a conversation that you didn’t know you needed to have. It’s also a great opportunity to correct incorrect or misleading information that can be found on social media as well.”
 
Markham steers her patients toward resources that she has personally vetted and can trust. Her recommendations are:

“My No. 1 recommendation for patients is to actually talk to their physician about the information they want to be able to find or how they would like to use social media,” Markham said. “Their physician or someone within the clinic, perhaps a social worker, might be able to point them to some good online resources for both information and for support.”
 
Social media offers patients supportive communities to feel less alone. Markham said social media networking is especially important in areas where in-person support groups may be limited. Cancer patients can find support groups searching their type of cancer on Facebook or through hashtags on Twitter, such as #BCSM (breast cancer social media), #gyncsm (gynecologic cancers), #LCSM (lung cancer) and more.
 
Other online support resources Markham recommends are:

“Social media has really opened up a world of potential for support for cancer patients,” Markham said. “They can find support within very focused groups centered around one type of cancer, a type of cancer with a mutation or just general cancer support. I think it’s a great thing for patients to have.”

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Kyndal Rock's picture

Soaring like an Eagle

“Mom, when can I be a Boy Scout?”

Inspired by her older brother’s commitment to his troop, Olivia Foli, 16, knew that she wanted to follow in his footsteps and join the Boy Scouts of America, or BSA.

However, Olivia did not want to be just any Boy Scout — She wanted to be an Eagle Scout, the highest rank attainable in the Scouts BSA program.Olivia Foli, 16, places a stone painted with the word “thrifty” in the UF Health Children’s Healing Garden. The rock is part of a scavenger hunt for pediatric patients.

Just two short years ago, this was an impossibility. It was not until 2018 that the BSA announced that girls would be allowed into the scouting program.

For the first time in history, Olivia and many other girls would have the opportunity to earn the honor of being an Eagle Scout.

Olivia is a part of Gainesville’s Scouts BSA Troop 21, an all-girls troop that she helped start in February of 2019.

In order to receive her Eagle Scout ranking, Olivia would need to plan and lead an extensive service project. She decided on one that would benefit patients at the UF Health Shands Children’s Hospital, as she was once a patient herself.

Olivia was born with brachial plexus, a nerve injury, which left her right arm paralyzed. After surgery at 7 years old, she attended occupational therapy at UF Health Shands until she was 14.

“I feel like the meaning behind my project is bringing joy to these patients in such a difficult time because I personally know what it is like to be in the hospital as a child,” Olivia said.

Olivia placed 12 large, painted rocks in the UF Health Children’s Healing Garden for patients to find on a scavenger hunt. Each 20-inch stone symbolizes the 12 points of the Scout Law: trustworthiness, loyalty, helpfulness, friendliness, courtesy, kindness, obedience, cheerfulness, thriftiness, bravery, cleanliness and reverence.

Upon completion of the scavenger hunt, patients will get to keep one smaller, painted rock that speaks to them. Olivia calls them “healing stones.” Each stone contains an encouraging message or trait that Olivia hopes will connect with young patients.

Olivia donated 676 healing stones that came from roughly 100 people spread over 11 troops, three organizations and seven states including Florida, Georgia, Texas, Oregon, California, Virginia and Pennsylvania.

The stones were hand-painted and sent directly to Olivia for her project.

Upon completion of the scavenger hunt, patients will be able to select one healing stone to keep.The idea came about when Olivia’s mother, Kim Foli, bumped into Amy Wegner, director of the Child Life Program, in the hallway at UF Health Shands Hospital.“Being able to take these small, natural rocks, paint them and help them to bring joy to the patients is really what my project is about,” Olivia said.

Kim expressed Olivia’s interest in volunteering at the hospital as a scout. At that time, UF Health had just started breaking ground on the UF Health Children’s Healing Garden.

According to Wegner, the Eagle Scouts have a similar mission of promoting being outdoors and in nature, just as the garden promotes relaxation and physical activity for patients and families.

“She has had such a good understanding of the purpose of the garden and she has an understanding of what children in the hospital may go through while they’re here,” Wegner said.

Wegner had the opportunity to attend a Troop 21 meeting to discuss future projects for the garden. She says Olivia’s extensive scouting background helps her better understand the therapeutic benefits of nature, especially for children.

Upon completion of her project, Olivia will receive her Eagle Scout ranking, making her part of the inaugural class of female Eagle Scouts.

“To me, Eagle Scout isn’t really the badge, but more of the skills that you learn to get to that point,” Olivia said.

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1,219 Days of Beating Cancer

Ann Collett used to dread 7:30 p.m.

At a time when many mothers across Gainesville were putting their young children to bed, Ann was preparing her son’s nightly chemo treatment.

William, an eighth-grader at Queen of Peace Catholic Academy, had been fighting acute lymphoblastic leukemia since he was just 10 years old. Forty months of treatment later, William officially beat pediatric cancer on Sept. 14. Tom, Ann, William and Magen Collett

In May of 2017, William was an “avid sports enthusiast,” playing basketball, running cross country and participating in track and field for his school. He was finishing fourth grade and was, by all accounts, a healthy kid.

“Everything just sort of came out of nowhere,” Ann recounts. “We went to our family pediatrician, Mary Grooms, M.D., FAAN, [Monday morning]. By late Monday afternoon, we were at Shands.”

William had been slowing down and getting headaches and bruises in recent weeks. The Colletts would come to find that these were signs associated with leukemia.

When William was diagnosed with acute lymphoblastic leukemia at UF Health Shands Children’s Hospital, Ann and husband Tom were shocked. Although they had known William was under the weather, cancer had been the last thing on their minds.

“He had been running a 5k just a couple of weeks before,” Ann said. “It was all kind of surprising.”

Ann and Tom are both active in the Gainesville community through various charities, such as Climb for Cancer and Stop Children’s Cancer. They had attended numerous local events supporting families battling pediatric cancer, with Tom even emceeing some of them as a Gator IMG Sports Network commentator.

Now, they were that family.

Following his diagnosis, William stayed at UF Health for almost two weeks. The first 30 days of his treatment — known as the “induction” phase — were focused on getting him into remission. With leukemia, remission can be achieved relatively quickly.

The next phases of William’s treatment focused on ridding the body of stray leukemia cells. Consolidation, interim maintenance and delayed intensification lasted 10-11 months and involved several hospitalizations.

While neutropenic fever is not uncommon with chemotherapy, every fever resulted in a trip to the UF Health Shands Pediatric E.R. for William. Because of his immunocompromised state, each fever was to be treated as if it were an infection.

Ann recalls that one of these fever-related E.R. trips turned into a 12-day hospital stay. For William, these stays were especially hard without his beloved Shih-Tzu-Yorkshire-terrier mix, Heartley. Upon returning home from his hospital trips, William would immediately find Heartley in his lap.

Being in one of the more intense phases of his treatment, William stayed out of school for most of his fifth-grade year, keeping up with classes and homework at home. This setback, however, did not stop William from maintaining his placement in advanced math classes.

“They would send his work home, teachers would record classes for him and offer one-on-one tutoring,” Ann said. “We would go to school so he could have lunch with his friends, or if there was a special event, we would go so he could participate.”

Around a year after his diagnosis, William entered the maintenance phase of his treatment, where he was able to “semi-resume” his life and return to school. By now, William was 11 and finishing elementary school.

For the next 28-29 months, William would receive monthly infusions, almost-monthly spinal taps and daily chemotherapy at home.

Ann recalls her son’s insistence that he resume playing on his school’s sports teams. One day, William was receiving a lumbar puncture, and a few days later he was running cross country, she said.

When COVID-19 hit the U.S. in March, the Colletts were already ahead of most Americans when it came to sanitizing protocols.

“COVID did not bring anything new into our world,” Ann said. “We’ve long been using antibacterial wipes and gel and just being very cautious about doors [and] being near people who are sick.”

William Collett runningIn fact, 2020 has been “joyful” for the Collett family, despite its faults.

Sept. 14, 2020, had been marked on Ann’s calendar for years. This would be the day that William would be done with his treatments and officially be cancer-free. Not even a pandemic could tarnish this milestone for the Colletts.

When that day was only 100 days away, Ann said the reality of it finally began to sink in. When that day came, the Colletts could not control their excitement.

On Sept. 14, in the UF Health Children’s Healing Garden, Ann, Tom, William, sister Magen, William’s grandparents, family friends and William’s care team all gathered for a socially distanced bell-ringing ceremony. William Slayton, M.D., professor and chief of the division of pediatric hematology/oncology, gave a short speech and led songs and chants with his colleagues.

“It’s for the parents and for the child,” Slayton said of the ceremony. “The bell-ringing signifies the end of the treatment, but also the beginning of the rest of the person’s life.

Ann remembers how excited she was as she stood with her family in the garden, smiling and clapping for William and his care team. One of her friends commented after the event that Ann’s legs “would not stop going” and that it looked like she was going to jump for joy.

“The nurses on Unit 41 — most all of them were there when we started,” Ann said. “The PAs and ARNPs who are up in that department, they have just been amazing to work with.”

William’s team of pediatric hematology/oncology specialists included Slayton; John Fort, M.D., clinical associate professor; Stephanie Bryan, PAConstance Stichweh, ARNP; and William Higgins, PA. This care team, plus Deborah Ringdahl, clinical case manager, made 40 months of treatment “as fun and as uplifting as possible,” according to Ann.

As William rang the bell signifying the end of his leukemia treatments, the garden erupted into cheers and applause. Ann, Tom, Magen and William embraced, holding each other tightly, before Slayton awarded William with a certificate, trophy and — to William’s delight — a brand new basketball.

“William faced his leukemia with a really great attitude,” Slayton said. “It never really seemed like the leukemia was holding him down.”

Slayton said he will remember William for the “really colorful and interesting” shoes and socks his patient would wear to appointments. “Swag” was a good word for it, Slayton remarked.

Following the ceremony, the Colletts were met at home with an elaborate drive-by parade. Cars were lined down the block, decorated with balloons and homemade signs, some shooting confetti out of their windows.

“More than one person said to me, ‘We needed this… not just for William, but in the midst of what we’re going through in 2020, we needed a celebration,’” Ann said.

William is building his immune system back up at home, the invisible burden of 7:30 p.m. chemo treatments now lifted. He is hoping to be back at school before March of 2021.

With most of the family at home now, the Colletts have been occupying their time with a furry new family member: 1-year-old mini goldendoodle Auggie.

Auggie entered the Colletts’ lives in early March, full of personality. He is now in training to be a therapy dog.

“We have felt that Heartley made such a difference in William and his treatment,” Ann said. “We didn’t have access to our dog when we would be getting treatment… Once we can return to visiting people in the hospital, Auggie and I will be ready to roll.”

Ann said that living through her son’s “life-changing” diagnosis forced her family to “sift and shift” their lives: Sift through tasks, hobbies and relationships that were unfulfilling or draining, and shift whatever was left and prioritize that.

William’s 40-month battle with leukemia reaffirmed what mattered most to the Colletts: family, friends and faith, Ann said. It also encouraged them to take things day by day.

“You cannot look at the end at the very beginning. You could know what the end will be, but for me to imagine what that was like — 1,219 days from diagnosis to ringing the bell — that’s too much for a person to comprehend,” Ann said. “Just know that you’ll get there and focus on today.”

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Music is Powerful Medicine

Jane playing piano and smiling
Jane Mason, an acclaimed pianist and composer, has filled the lives of people around the world with her music, performing in concert halls from Sydney, Australia to Venice, Italy and throughout the U.S. She is also an accomplished painter, having created more than 500 original works.

For a short while, the music stopped and the paintbrush lay dormant after Jane, 77, suffered her second stroke in April 2020.

The stroke occurred while Jane was relaxing in the yard after a productive afternoon of gardening. She phoned her daughter, Jill, to check in. Just minutes into the call, the telltale signs started, and Jane knew she was having another stroke.

Her daughter’s frantic cries went unanswered: “Mom! Mom! What’s happening? Are you OK?” Jane could not speak and could not move.

Jill called 911, staying on the phone with her mom while also guiding paramedics around Jane’s expansive, rural property near Palatka as they searched for her.

A helicopter arrived to fly Jane to the nearest hospital. But a developing thunderstorm altered their course and first responders redirected the chopper to UF Health Gainesville, heading toward clearer skies.

“That decision saved my wife’s life,” said Jane’s husband, Marty.

“We didn’t know it at the time, but UF Health Gainesville was the only place Jane needed to be.”

The hospital is home to the UF Health Comprehensive Stroke Center, which has been certified by The Joint Commission, the recognized leader in health care certification. This advanced level of certifications indicates that a hospital provides more extensive treatment options as well as essential therapies for recovering after a stroke.

By the time the helicopter arrived at UF Health, doctors and nurses were fully informed of Jane’s condition. Brian Hoh, a renowned neurosurgeon, and his stroke team were prepared to perform a life-saving thrombectomy, an innovative endovascular procedure used to remove blood clots from brain arteries.

Dr. Hoh said: “Seconds matter. From the moment a patient enters our emergency department, (s)he is on a well-orchestrated course to receive rapid and highly advanced treatment. Everyone in the ED is onboard. Nothing gets in our way. We must work fast to stop further damage to the brain. That can mean the difference between returning to a normal life and enjoying the things you love or being permanently disabled.”

Before Marty got to the hospital, Jane was out of the procedure and out of imminent danger.

But the stroke paralyzed Jane’s hands, which had so skillfully executed her music and art.

Jane transferred to UF Health Rehab Hospital for an intensive, personalized recovery plan, including physical, speech and swallowing therapy.

Today, six months after her stroke, the music has returned. Jane is back at the piano playing her favorite pieces — “He Touched Me” and “Amazing Grace.”

Each day brings improvement as Jane strives to match her pre-stroke performance. She has returned to near-normal in most aspects of her life.

Anna Khanna, medical director of the Comprehensive Stroke Center at UF Health, said: “Patients who suffer this type of stroke, a large artery occlusion, frequently have significant and permanent damage. Often, they cannot use one entire side of their body. Jane’s recovery is quite remarkable.”

The secret may be found, at least in part, in music and art.

Dr. Khanna said, “Some patients — artist, educators and others — who have trained their brains in a certain way recover more quickly and gain back more abilities, as long as they receive rapid and effective medical treatment following the stroke.”

Jane may have developed a high level of brain function through art and music that helped her not only regain these talents but other abilities as well.

Jane and Marty thank the Comprehensive Stroke Team at UF Health for giving Jane her life back.

“Everyone responded incredibly skillfully and quickly. They cared. They knew what we needed but they also listened to us. We found friends and confidants in our long-term therapists and nurses.”

Marty said, “They kept me going.”

Jane’s hope is to once again play piano well enough to return to the concert hall and to paint again. Marty believes she will achieve it through sheer will and tenacity.

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The dark side of social media: e-cigarettes targeting young adults

A curly-haried, dark-skinned young woman looks out a window while holding an e-cigarette to her lips.

These days, electronic cigarettes, or e-cigarettes, are everywhere — even in the hands of young adults.

But because e-cigarettes are such a new product, their long-term effects, including their cancer risk, are still unknown. The potential implications that vaping could have on younger people has also been the subject of much discussion, and several restrictions, such as flavor bans, have been helpful in curbing e-cigarette use. However, one area of the e-cigarette industry remains underregulated: social media.

“There really is no regulation about what can be done in the social media environment, and this group of 18- to 24-year-olds pretty much lives online,” said Jordan Alpert, Ph.D., an assistant professor in the UF College of Journalism and Communications’ department of advertising. “They’re being exposed to messages that are glamorizing and glorifying e-cigarettes every day.”

Alpert set out to discover what impact the social media marketing of e-cigarettes is having on young adults. He researched different brands and used documents from Phillip Morris International Inc., a cigarette and tobacco company, to study whether e-cigarette brands are using similar marketing strategies to target young adult consumers.

Alpert’s study found that e-cigarette brands often tried to target their younger audience by making their products look “cool” with flavors and pop culture references.

“The big finding was that this kind of exposure to e-cigarettes really normalized them. They just became a typical, everyday thing that young adults see,” Alpert said. “It didn’t seem taboo or like anything was wrong with that. This constant exposure really normalized the activity for this age group.”

Brands often focused on an appeal of an overall lifestyle without even mentioning their products. For example, Alpert said, one advertisement showed a person lounging by a luxurious swimming pool and holding an e-cigarette pen — never directly mentioning the product but instilling in consumers’ minds that this would be a “cool” lifestyle they could live.

“The goal of this study was to bring more attention to the kind of marketing tactics that are going on and to try to have some discussion about any kind of regulations that could occur in the social media environment,” Alpert said.

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A surprising ally in the fight against cancer: “mommy bloggers”

A young Black mother works on a laptop on her couch. Two children lay across her back, looking at their phones.

It can be hard to find trustworthy online sources, especially when it comes to health information. A UF Health Cancer Center researcher has found a way to relay scientifically based breast cancer information to mothers through sources that women reportedly trust and relate to — “mommy bloggers.”

Carla L. Fisher, Ph.D., a cancer behavior scientist, set out to find a way to disseminate evidence-informed breast cancer messages that would resonate with mothers and daughters, motivating them to talk about environmental breast cancer risk and lifestyle changes they could make together to reduce their risk.

Fisher and her colleague Kevin Wright, Ph.D., of George Mason University, are scientists in the National Institute of Environmental Health Sciences’ Breast Cancer and the Environment Research Program, or BCERP —a program of scientists and community partners created more than two decades ago to identify environmental breast cancer risk factors. Through a study funded by the National Institute of Environmental Health Sciences, Fisher and Wright teamed to develop a social media intervention to communicate environmental breast cancer risk information to mothers and daughters.

Fisher’s research shows that mothers and daughters are concerned about their risk but find talking about the topic challenging. Research demonstrates that online, third-party sources can help them navigate these conversations. Women who use the internet for health information and mothers often turn to “mommy bloggers,” women who make a living by blogging — online journaling — about motherhood and various aspects of life, as a trusted source.

“What we see in the research is that mothers often identify with mommy bloggers,” Fisher said. “They even, in a way, develop a sense of a relationship and a community within that social media group.”

The community of mommy bloggers presented Fisher and Wright an opportunity to distribute evidence-based information.

“With social media, you can cast a wide net, reaching more people,” Fisher said. “The dissemination can keep going on and on and on, because of the various connected platforms people use.”

Fisher and Wright developed collaborations with 75 mommy bloggers to spread evidence-based information from BCERP’s free online toolkit that was created for mothers. With their research team members, they created a shareable, uneditable infographic to incorporate into a blog post that provided mothers and daughters four action steps to take to reduce their risk. The researchers also provided the bloggers with an uneditable introduction paragraph to include to assure readers that the information was coming from a trusted source.

Keeping with the theme of their blogs, the mommy bloggers were encouraged to write the blog in a way that would resonate with their readers. With blogs being shareable, the message made it onto several platforms, such as Facebook, Pinterest and Instagram.

“We did see that there was an impact,” Fisher said. “It shows that this is an angle that we want to utilize more and a partnership that can bridge the social media community of mothers out there in society with the science community.”

The blog posts reached more than 400 mothers, and the impact didn’t stop at getting the message to a wider net of people. The researchers also found mothers exposed to the blogs were more satisfied with the breast cancer risk information, more motivated to engage in risk-reducing behavior, and more likely to share the breast cancer risk reduction tips with their daughters.

“Mothers said that when the information is presented on something like social media, it’s much easier to talk to their kids because it’s less personalized,” Fisher said. “The information on social media can facilitate a less emotionally charged conversation about cancer, particularly in a way where you’re not scaring and frightening your kids.”

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One step at a time: Kathy’s journey to wellness at UF Health Integrative Medicine

When Kathy Nobel started experiencing pain from an inherited neurological disorders, Charcot-Marie-Tooth disease, or CMT, she knew she did not want to be on strong opioids. While there is no cure for CMT, Kathy found relief through the practice of acupuncture at UF Health Integrative Medicine.

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BE HOPE

A young girl wearing a pink and white dress stands next to a garden of red, pink and yellow flowers.

Cole Dooley, M.D., is no stranger to pediatric cancer. As both a pediatric anesthesiologist and the father of a child with incurable cancer, the realities of childhood cancer have forever changed his life.

On July 14, 2012, Cole and Sarah Dooley welcomed Phoebe Louise into the world.

They chose the name “Phoebe” for its meaning: “radiant light.” The name perfectly embodied every bit of hope, beauty and inspiration they wished for her.

Phoebe was born prematurely at 34 weeks. When she arrived, she was quickly diagnosed with Tetralogy of Fallot, a form of congenital heart disease.

Phoebe Louise Dooley was born July 14, 2012.Phoebe underwent heart surgery at the UF Health Congenital Heart Center when she was roughly 8 weeks old. The surgery was successful and, soon, Phoebe was on the road to recovery and healing.

For the next couple of years, Phoebe lived a normal, healthy life. She jumped, ran and played with other children, her previous health problems unrecognizable on the playground.

However, Phoebe’s parents became concerned when they noticed Phoebe’s eyes would cross while watching television. She was taken to an eye doctor who recommended Phoebe have an MRI.

This MRI would later reveal a tumor in Phoebe’s brainstem.

On March 22, 2016, at just three years old, Phoebe was diagnosed with diffuse intrinsic pontine glioma (DIPG), an aggressive, incurable tumor.

The tumor was located on the part of the brainstem that controlled all of Phoebe’s vital functions, including her heartbeat and breathing.

Phoebe’s doctors told her parents that the tumor was not treatable by surgery. The only available treatment was radiation therapy.

“[Surgery would be like] pouring pink sand into regular sand and then trying to pick out the pink sand,” Cole said. “You would never really get it all out.”

While many of the children who undergo radiation therapy have their tumors shrink and symptoms decrease, over time, these symptoms reappear and grow more severe.

Though the radiation came with its own side effects such as increased appetite, fatigue and changes in her emotional state, the majority of Phoebe’s brain tumor symptoms resolved and she began to get better.

Phoebe started treatment in April of 2016, and by the beginning of August of 2016, she was largely back to her bubbly self.

This time of reduced symptoms and progress, known as the “honeymoon period,” generally lasts a number of months before the tumor resumes its growth.

Cole still remembers the family trip he took with Phoebe to the Jacksonville Zoo the day before they found out her life-changing diagnosis.

“She was running around with the other kids and playing on the playground equipment,” Cole said. “The next day someone told me that she might die in six months.”

A smiling young girl pushes a toy plastic cart.

As a physician, Cole knew what the disease statistics meant. As a parent, Cole was grasping for hope that doctors could do something.

“I wanted so badly to believe she could have a different story than anyone else,” Cole said. “Unfortunately, it’s not the case with this disease.”

Phoebe’s condition did not start to decline until early March of 2018. By May, Phoebe had entered hospice care.

A young girl stands next to a painted wooden tiger.

On Sunday, Aug. 5, 2018, Phoebe passed away at home surrounded by loved ones.

Phoebe had fought and continued to shine her light for 29 months after being diagnosed with a cancer that usually only allots 6 to 9 more months of life post-diagnosis.

In 2017, the Phoebe Louise Dooley Foundation was created to help raise money for families fighting similar battles and to fund research for pediatric cancer, specifically DIPG.

Cole believes that the foundation will bring awareness to pediatric cancer and encourage support of pediatric cancer research, ultimately changing the face of the disease.

“My goal is for people to recognize the gold ribbon the same way that they do the pink ribbon,” Cole said.

In addition to the foundation, Cole serves as an advisor on the board of the Phoebe Louise Dooley Student Organization at UF (PLDSO).

PLDSO is a student-run organization that allows students interested in health care to get involved with the community through volunteer opportunities with children and their health care.

Throughout Phoebe’s DIPG journey, one thing that kept Cole optimistic was his daughter’s vibrant and lively spirit. Someone even pointed out to him that rearranging the letters of Phoebe’s name spelled “Be Hope.”

This powerful message embodied Phoebe’s illuminating spirit that continues to shine and radiate hope to all her friends and family.

“She served as the inspiration, and somebody showed me that in words when they rearranged the letters in her name,” Cole said.

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Staying Upbeat Through Every Diagnosis

Kendall Lewis stands next to a volleyball net on a sunny day. She is wearing a face mask and is carrying an orange and blue Florida Gators volleyball. How 9-year-old Kendall Lewis navigates life with VACTERL association.

If you ask 9-year-old Kendall “Miss K” Lewis how many surgeries she’s had in her life, she will laugh and say, “Too many!”

Within hours of her birth on June 2, 2011, Kendall was transported to UF Health Shands Children’s Hospital for multiple abnormalities. That day, Kendall was diagnosed with VACTERL association, a disorder that affects numerous body systems.

Upon learning of their newborn child’s diagnosis, the Lewis family was overwhelmed with emotion.

“We had never heard of it,” said Mindy Lewis, Kendall’s mother. “It seemed like every time we saw someone the first few days, we found out something else was wrong.”


VACTERL

VACTERL is an acronym that represents a multitude of birth abnormalities:

  • V stands for vertebral defects – Kendall’s L4 vertebrae is a hemivertebrae, or wedge-shaped. She has deformities of the sacrum and coccyx, a tethered spinal cord and scoliosis, which has progressed over the last year.
  • A stands for anal atresia – Kendall had a low imperforate anus, meaning she was born without the anal opening where it should have been.
  • C stands for cardiac defects – Kendall has Tetralogy of Fallot with pulmonary atresia (TOF/PA). The vein and valve responsible for bringing blood to the lungs from the heart was essentially non-existent. She has a number of other heart issues as well.
  • T/E stands for tracheoesophageal fistula – Kendall had a tracheoesophageal fistula with esophageal atresia – an abnormal connection between her trachea and her esophagus – and her esophagus was not attached to her stomach.
  • R stands for renal anomalies – Kendall has a duplicated collection system on her right kidney.
  • L stands for limb abnormalities – Some people diagnosed with VACTERL association have limb defects for abnormalities. This is the only component of the disorder that Kendall does not have.

Mindy says her daughter’s diagnosis has changed her family’s life.

“As the parent to a complex medical child – and one who also happens to be immunocompromised – we have had to adjust our world a little,” Mindy said.

At just five days old, Kendall underwent her first set of surgeries including her fist bowel reconstructive surgery and a procedure to repair and reconnect her esophagus to her stomach.

Kendall has endured a total of three open-heart surgeries: her first at 26 days old, her second at three years old and her third at five years old.

“It was nerve-wracking, knowing that you were essentially helpless and trusting a medical team and some equipment to keep your baby alive while they stop her heart to work on it,” Mindy said.

In the spring of 2015, Kendall underwent a cardiac catherization to help the narrowing in her conduit due to her immune system disagreeing with donor tissue. As her body struggled with rejecting her new heart conduit, Kendall had a second bowel reconstructive surgery.

In 2018, the Lewis family found out that Kendall had likely suffered from a small stroke after her second open-heart surgery in 2014. During an MRI scan, it was revealed that she also has hemiplegic cerebral palsy, in which one side of the body is affected.

For the Lewis family, it feels like every year brings a new battle for Kendall.

“Some things resolve over time or become a dormant issue,” Mindy said. “Every year since she was born, we have been given a new diagnosis to go with her other ones.”

Regardless of the medical curveballs she is thrown, Kendall continues to adapt to her ever-changing condition with a positive, upbeat attitude.

As a rising fourth grade student, Kendall participates in numerous activities in and out of the classroom – one of the most recent activities being volleyball.

According to Mindy, volleyball has given Kendall something she can strive for and helps strengthen her body, which was mildly affected by the stroke and hemiplegic cerebral palsy. When Kendall plays volleyball, she gets to be a “normal” kid.

“Her coordination is better, her spirits are better [and] she is actually pretty darn good,” Mindy said.

Kendall has significantly improved her pulmonary function test over the past year, and her enhanced lung capacity is believed to be the result of playing a sport.

UF Health Shands Children’s Hospital has been a home away from home for the Lewis family since the day Kendall was born nine years ago. Kendall has faith and trust in the facility, according to Mindy.

Kendall is followed by ten specialty teams at UF Health including cardiology; pulmonology; ear, nose and throat; immunology; pediatric surgery; neurology; orthopedic surgery; nephrology; gastroenterology and plastic surgery.

When Kendall visits UF Health Shands Children’s Hospital for her appointments, she is more excited than she is nervous.

Kendall has become friends with many student volunteers during her time on UF Health campus, and many of them will visit her during her stays, painting their nails and playing with makeup.

“UF Health is a family,” Mindy said. “That’s why they are a part of our family.”

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‘Another bump in the road:’ COVID-19 from the perspective of UF Health cancer patients

Harvey and Ilene BuddBefore COVID-19, cancer patients were united by their fight against the disease, no matter the difference in type, location or stage. Today, they’re united by another battle; one outside of their diagnosis — the fight to stay alive while immunosuppressed during a global pandemic.

Anita Barrow, 47, an ovarian cancer patient at UF Health, knows what it’s like to battle the two deadly diseases at once. In May, Barrow contracted the coronavirus.

“It felt like fire in my sinus cavity, and I lost all sense of smell and taste,” she said.

She immediately contacted her UF Health Cancer Center oncologist, Karen Daily, D.O., who instructed Barrow to stop taking her oral chemotherapy immediately. Her immune system was already weakened and needed to focus on fighting one disease at a time.

According to the American Cancer Society, patients who are currently fighting cancer and some cancer survivors are at higher risk for COVID-19 due to weakened immune systems caused by cancer and chemotherapy. Being higher risk means a greater chance of catching the infection and a higher chance of developing severe pneumonia or multi-organ system failure.

“I wish I could tell the person who exposed me that I had to stop taking my cancer medication, which prolongs my healing process and puts me at risk of my cancer coming back,” Barrow said.

For Barrow, the worst part of contracting COVID-19 hasn’t been the symptoms or the delay of her cancer treatment — it’s been the quarantine.

“I haven't seen my oldest daughter and my granddaughter since Mother's Day,” she said. “It’s just heartbreaking.”

Harvey Budd, 72, agreed that living with cancer during a pandemic has been depressing at times, but he and his wife, Ilene, are thankful for the care they have received.

“Life has been a series of ups and downs — this is just another bump in the road,” he said. “We’re so lucky as a community to have UF Health around the corner.”

When Budd, a former Gainesville city commissioner and president of Budd Broadcasting Co. Inc., first started his cancer treatment at University of Florida Health in January, his visits were accompanied by smiling faces, busy parking lots, hot coffee machines, free snacks and an unguarded door.

Two months later, all of that changed when COVID-19 hit the United States. Now, the friendly faces are covered by masks, the parking lot is barren, coffee and snacks have disappeared, and patients and visitors are met at the door by a staffer waiting with a thermometer.

“I was doing social distancing before it was cool,” said Budd, who was diagnosed with the blood cancer, diffused large B-cell lymphoma. “Cancer and COVID-19 together makes you much more aware of the precautions you need to take.”

COVID-19 didn’t stop Budd and his health care team, including oncologist Nam Dang, M.D., Ph.D., from continuing his treatment plan. Every 21 days for five months, Budd and Ilene made the short trip from their Gainesville home to UF Health for a day of chemotherapy and lumbar puncture therapy, a procedure that puts chemo into the spine to create a barrier between the cancer and the brain.

By the end of his chemotherapy, Budd was officially cancer free. His positive experience at UF Health made him want to stay within the institution for his next form of treatment — radiation. He’ll be traveling from Gainesville to the UF Health Proton Therapy Institute in Jacksonville.

“We cannot say enough about Dr. Dang,” Budd said. “If we could have hugged him at the end of six chemo treatments, we would have — if COVID-19 wasn’t in the way.”

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With You Every Step of the Way: Continuity of Care for Cleft and Craniofacial Patients

Each year, one in 700 children is born with cleft and craniofacial differences. These can result from abnormal growth patterns of the face or skull, which involves soft tissue and bones, and can include malformations stemming from genetics, disease, or environmental factors.

At UF Health, each patient is backed by a team of interdisciplinary practitioners who lend a holistic perspective to the care that accompanies the patient and their families every step of the way.

“Many people think that care for craniofacial differences and cleft begins and ends with a surgery,” said Jessica Ching, M.D., assistant professor in the division of plastic and reconstructive surgery in the UF College of Medicine. “In reality, we’re with these patients every step of the way.”

While care often includes surgical procedures, Ching and her team provide a wide spectrum of treatments and support for their patients even into adulthood. These needs change over time. In the early stages, one of the most vital things Ching looks for is adequate nutrition.

“Ensuring the babies are able to get the nutrition they need helps ensure they can avoid missing major developmental milestones,” Ching said.

Ching’s team creates a unique treatment plan for each patient tailored to their needs--incorporating those of the parents and guardians, too.

“When we think about what the child needs, we think of the parents, too,” said Holly Shenk, R.N., coordinator of the UF Health Craniofacial Clinic. “This can be a learning process for both child and parent, and one that can be alienating without the right support.”

One means of support for patients and families is the annual Craniofacial Camp. Free to UF patients, the camp gives kids the opportunity to spend four days developing coping skills and building self-confidence. This year, the camp will stay closed due to the coronavirus pandemic.

But families still have other ways to connect.

Shenk links patients with Facebook support groups made for families, by families. Although a social worker helps run the social media group, the space is filled with families offering resources and shared experiences on how to overcome challenges like bullying or anxiety.

“Our online support groups are a significant source of encouragement and advocacy,” she said.

The UF Health Craniofacial Center is also heavily involved with the Florida Cleft and Craniofacial Network, or FCCN. The cooperative group is composed of members from the University of Florida, Children’s Medical Services of the Florida Department of Health, regional and local family networks, and Florida health care providers.

“Like our center, it helps educate and empower both families and professionals with current knowledge and understanding of this population’s needs,” Ching said.

July is National Cleft and Craniofacial Awareness and Prevention Month.

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Staying Hydrated and Fit This Summer: Plank, Drank and Thank Us Later

Staying hydrated is essential in Florida's summer months, when the heat index can often reach triple digits. Dehydration can cause heat illnesses, and chronic dehydration can lead to other complications such as kindey stones. Roughly 60% of our bodies are made up of water—no wonder we need to replenish it daily!

Each summer, UF and UF Health employees take part in the Plank and Drank challenge to promote proper hydration and physical health. This year's challenge wraps up on August 2.

Each day, employees are encouraged to hold a plank position for a certain amount of time and document their water intake. The goal is for employees to strengthen their core muscles, while at the same time developing healthy habits for proper water consumption. Supplying the body with enough water can increase an individual’s cognitive and physical functions, and improve their overall health conditions.

While our challenge is ending - yours has just begun! Invite your friends and family to take part in your own home version this August.

UF Health Shands CEO Ed Jimenez displays proper planking technique.

Above: UF Health Shands CEO Ed Jimenez displays proper planking technique. “Hydration is the core of overall wellness." he said. "Medical professionals all believe that properly hydrating the body is important whether you are an athlete or someone working up on their feet all day long."

Drinking enough water

The National Academies of Sciences, Engineering, and Medicine determined that an adequate daily fluid intake is: 3.7 liters for men, and 2.7 liters for women. The Centers for Disease Control (CDC) recommend drinking one 1 cup (8 ounces) of water every 15–20 minutes while working in extreme heat, which would equal 24–32 ounces per hour.

Keeping a proper hydration level has many beneficial effects:

  • It maintains one’s body’s fluid balance, which regulates normal functioning like digestion and body temperature
  • It fuels muscles, lubricates the joints and boosts energy
  • It improves focus and promotes clearer thinking
  • It can create a feeling of “fullness,” which can contribute to weight loss

Why Planking?

In addition to taking in enough water daily, it is important to incorporate static core exercises, like planking. Planking has many benefits on the body including building strength, stability and frame of mind.

  • Planking strengthens one’s core muscles, which leads to better stability and performance of daily activities
  • Planking helps alleviate back pain by strengthening back muscles
  • Planking can enhance a person's mood by releasing “feel good” endorphins
  • Planking improves posture and balance

When doing these type of static core exercises, it is important for one to make sure they are using the proper form:

  • Plank from your hands or forearms
  • Maintain hands or elbows directly underneath the shoulders
  • Never clasp your hands when performing a plank
  • Keep your spine straight and head neutral (eyes forward, not looking up or down)

Keep a Record

Keep a log of your water intake and record the time you plank each day. Keeping a record helps for you to develop a routine and to see how you improve over time. You can use GatorCare's July 2020 Plank & Drank calendars as a start for creating your own!

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A Look Into Our UF Health Youth Gender Program

The University of Florida Health Youth Gender Program provides social, medical and mental health support to gender-expansive youth and young adults and their families. Our mission is to provide a safe space for youth while educating families and community members on gender-expansive and transition-related issues. We help empower our patients to make informed decisions with accurate information and take an active role in their care. The UF Health Youth Gender Program collaborates with Equality Florida and shares anecdotes of negative school and community youth experiences with Equality Florida’s TRANSaction project to target injustices, bullying and harassment in school districts across the state. We also connect patients and their families to legal services as needed, from name change assistance to filing complaints against a school district.

The program began in 2016 and was established by UF Health pediatric endocrinologist Janet Silverstein, M.D., who was determined to bridge the gap in care for gender-expansive people. We see more than 200 patients in addition to their families each year. Many of our patients are from rural areas across Florida, where gender-expansive resources are limited.

As a patient advocate, it is my job to share my experiences as a trans person with patients and provide resources, research studies and articles to demonstrate how we use evidence-based practices in our program. I advocate for gender-expansive youths’ needs in the practice and with their families. Often, we see youth who are invalidated and alienated by their families and their communities. Our program is often the only place in which patients can be themselves. As the patient advocate, I am usually the first trans person they’ve met, as many are used to being the “token trans kid” in their communities.

During Pride Month in June, it is important to recognize our history. In 1969, Marsha P. Johnson, a Black trans woman, and Sylvia Rivera, a Latinx trans woman, started a riot to combat LGBTQ oppression, and they are the main reason we have a Pride Month to celebrate today.

Learn more about the UF Health Youth Gender Program.

- Lucas Cole DeMonte, M.Ed., Ed.S., UF Health Youth Gender Program Patient Advocate

Other resources for Parents and Families:

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Peyton Thomas's picture

When your headache could be something more

A woman holds her head in pain.

Nearly everyone has an occasional headache, but when it becomes a regular occurrence, you may be suffering from a headache disorder. Migraine headaches are one of the most common causes of headaches and disproportionately affect women, according to Harvey Chim, M.D., F.A.C.S., a UF Health plastic surgeon who specializes in migraine surgery.

“Migraine headaches have certain characteristics that distinguish them from an ordinary headache such as originating from a certain area of the head,” Chim said. “They can sometimes cause light flashes and can be worse with certain triggers such as temperature, noise or menstrual periods.”

Migraine headaches affect 12% of the population worldwide and women make up 85% of those sufferers. Common symptoms include throbbing pain, nausea, vomiting, dizziness and sensitivity to sound, light, touch and smell. Medical treatment is the first line of defense to help ease the symptoms of migraine headaches.

While women make up a large majority of sufferers, migraine is common in people between the ages of 18 and 44. While the causes aren’t completely understood, the disorder is often hereditary. Diagnosis is normally made through a neurologist.

Luckily, people with severe, chronic migraines have surgical options to reduce their symptoms or pain. The surgery aims to decompress the sensory nerves around the skull that contribute to pain from migraine headaches. Chim says the procedure can immensely improve a patient’s quality of life and ease the pain caused by the disorder. There is more than 20 years of published evidence supporting surgery for treatment of migraine headaches.

June is Migraine and Headache Awareness Month and aims to raise awareness and recognition of migraine and other headache disorders. In recognition of this month, learn more about how UF Health can help treat your migraine headache.

Devin Nori's picture

Best-Case Scenario

When a brainstem tumor almost took Mycah’s life, her UF Health pediatric neurosurgeon prepared a plan to save her.

Just weeks before her eighth birthday in late November 2018, Mycah Moody began feeling fatigued. When she started losing weight, could barely eat without choking and was coughing constantly, her parents took her to the nearest emergency room, where she was told she had a virus that would pass with time.

The symptoms persisted and, at her birthday party, her lips turned blue. She was rushed back to the local emergency room, only to be given the same diagnosis. She was instructed to stay hydrated and get more rest while the virus ran its course.

A week later, on the morning of Christmas Eve, the family received news that a relative had passed away. When Susie, Mycah’s mother, went to wake up her daughter, Mycah was lethargic and her eyes were shaking. Susie immediately rushed Mycah to UF Health.

Mycah MoodyWithin an hour and a half of being at UF Health Shands Children’s Hospital, Mycah was diagnosed with a large tumor in her brainstem. The brainstem is the most critical and sensitive region of the brain, which controls basic life functions such as breathing, heartbeat and swallowing.

Mycah was quickly admitted to the UF Health Pediatric Intensive Care Unit, where she was hooked up to IV fluids and given steroids. Teams of health care workers came into her room all throughout the night to run tests and confirm her diagnosis. After reviewing her MRI scan, UF Health pediatric neurosurgeon Jason Blatt, M.D., prepared a treatment plan.

“Mycah was in the process of dying from her tumor when we met her,” said Blatt, an assistant professor in the UF College of Medicine’s Lillian S. Wells Department of Neurosurgery. “She was listless, could hardly talk, and was eating poorly because the tumor was affecting the nerves that controlled her speech and swallowing.”

Blatt decided a craniotomy was needed to access the tumor. This procedure would involve removing the back lower portion of Mycah’s skull, then separating the two halves of the cerebellum to expose the delicate brainstem and the tumor within. Before the surgery, Blatt briefed Mycah and her family on the implications of the procedure — Mycah might rely on feeding and breathing tubes for the rest of her life and need extensive, lengthy treatment for the tumor.

“Parents often think that goal No. 1 of surgery is to get the tumor out. That’s actually goal No. 2,” Blatt said. “Goal No. 1 is to keep the patient, in this case Mycah, safe.”

Mycah Moody plays pianoDuring the seven-hour surgery, Blatt was able to remove 98% of the tumor, leaving the last tiny bit stuck to a critical blood vessel to prevent giving Mycah a devastating stroke. He determined that the tumor was a Grade 1 pilocytic astrocytoma, a benign tumor seen mostly in children, and Mycah would not need any chemotherapy, radiation or further procedures.  

“We were expecting the worst-case scenario and came out with the best-case scenario,” Susie said. “Dr. Blatt is amazing. I can’t stress that enough. He could not have been more incredible with my daughter and my family.”

Now, a little over a year later, Mycah is at the top of her class. She loves playing piano, reading and watching YouTube, and she only returns to UF Health for check-ups every six months. Her singing voice has returned, a pastime she loves, and she is back to normal activities. This one procedure changed the entire course of her life, and she has returned to her happy, healthy self.

Get the answers to cancer-related COVID-19 questions

Brenda Sheptock, RN, Beverly Fitzhugh, RN and Criscina Collins, LPN, at the UF Health Medical Oncology – Davis Cancer Pavilion

Stay-at-home restrictions are beginning to lift in several areas across the United States, but immunosuppressed cancer patients are still at high risk of falling seriously ill from the novel coronavirus COVID-19.

In a recent University of Florida Health Cancer Center webinar, “COVID-19: What People with Cancer Need to Know,” Merry-Jennifer Markham, M.D., FACP, FASCO, associate director for medical affairs for the UF Health Cancer Center, discussed how to navigate cancer during the COVID-19 pandemic.

Here, Dr. Markham answers some cancer-related COVID-19 questions:

Is it safe to delay my cancer screening test or risk-reducing surgery if I have a hereditary cancer syndrome? How long is it safe to delay?

For patients with an increased risk of cancer due to a hereditary syndrome, the safety of delaying a cancer screening or a risk-reducing surgery depends on the individual patient and their medical history. Patients and their doctors must weigh the risks associated with not delaying — the risk of becoming very ill with COVID-19 if exposed during a health care visit versus the risk of cancer being diagnosed through a screening test.

It is unknown how long it is safe to delay preventive cancer surgery. However, it is important to note that your doctor will only suggest delaying screening or surgery if it is safe for you to do so.

Does my cancer treatment cause immunosuppression?

According to the American Cancer Society, cancer patients fall in the high-risk category due to weakened immune systems caused by cancer and its treatments. Being high risk means cancer patients are more likely to become seriously ill from COVID-19, which could include requiring hospitalization, developing pneumonia or developing multi-organ system failure.

The type of treatment a patient receives factors into their immunosuppression.

So, what treatments cause immunosuppression?

  • Chemotherapy does. Immunosuppression can be measured by the white blood cell count. However, sometimes the immune system is weakened even if the white blood cell count isn’t lowered. There is no definite answer on how long immunosuppression from chemotherapy can last. It often depends on the type of chemotherapy and the type of cancer.
  • Immunotherapy doesn’t. In some cases, this treatment option can actually strengthen the immune system. However, doctors are not sure what impact it has on COVID-19 infections or symptoms.
  • Biologic agents may or may not. Many times, they don’t affect the immune system, but this may vary by medication. It is important to discuss your personal risk with your doctor.
  • Radiation does. Radiation is known to cause immunosuppression for some period of time.
  • Surgery does. Immunosuppression from surgery may last for about a month, but it also depends on the type of surgery. For example, a splenectomy (surgery to remove the spleen) may result in chronic immunosuppression to some degree since the spleen plays a large part in the body’s normal immune function.

Are some cancers associated with higher risk for COVID-19 infections or complications?

Since there are still many unknowns about COVID-19’s effect on cancer, the best answer available right now is probably. Cancers associated with the immune system, such as blood cancers, and cancer affecting the lungs likely put patients at higher risk of more severe COVID-19 infections and/or complications.

How do I find a cancer clinical trial during COVID-19?

It is recommended that you ask your cancer care team for help finding a clinical trial. You can also:

When stay-at-home restrictions lift, what should I do?

Coronavirus is still circulating in our communities — some more than others. Just because the stay-at-home restrictions will begin to lift soon does not mean that the risk of contracting COVID-19 has gone away. It is likely that we will see another wave of COVID-19 cases and deaths when nonessential businesses reopen.

Continue to stay at home and avoid public places as much as possible, especially if you are high risk and/or immunosuppressed.

To get the answers to other COVID-19-related questions about cancer, watch Dr. Markham’s webinar. For more information of UF Health's response to COVID-19, visit coronavirus.ufhealth.org.

Kacey Finch's picture

Giving patients back the hope of having a family

A man and woman hold hands in the sunshine. Intertwined in their hands are tiny baby shoes.

Some cancer treatments can harm a patient’s fertility. The University of Florida Health’s Helping Oncofertility Patients become Educated, or HOPE, Network is on a mission to help preserve it.

“The goal of HOPE Network is to try to help young, reproductive age or prepuberty oncology patients understand what their options would be to preserve their fertility,” said Alice Rhoton-Vlasak, M.D., director of the HOPE Network.

The program works toward that goal by offering novel fertility preservation options to UF Health patients. Currently, the HOPE Network is the only fertility program in Florida that is trained in and offering ovarian tissue freezing, which became a standard procedure with published guidelines in January.

“Certain cancer treatments and surgeries can damage or destroy the ovaries and eggs, which leads to early menopause and infertility,” said Rhoton-Vlasak, a professor in the UF College of Medicine’s department of obstetrics and gynecology. “Ovarian tissue freezing is the newest option to preserve fertility.”

The treatment involves removing a piece of or the whole ovary, freezing the extracted ovary in tiny strips containing the follicles with eggs, and transplanting the strips back into the area of the ovary post-cancer. The ovarian tissue can be frozen indefinitely, allowing women to choose to implant the tissue when they want to start a family. When the tissue is transplanted, hormones and menstrual cycles can come back, restoring fertility and allowing natural pregnancy to occur.

“Those transplants don't usually work forever,” Rhoton-Vlasak said. “They have a lifespan of about three to six years. You could potentially transplant back another piece of the woman’s own tissue so that she gets longer benefit from the hormones. Even if they don't want more babies, those hormones are important for your bones and heart until the natural age of menopause.”

When fertility preservation treatments need to happen quickly as a result of a patient’s cancer treatment, the HOPE Network team is available, working around the clock to see patients in their times of need.

“It's important that we can see people rapidly so that we don't delay their cancer treatments,” she said.

One way the program is able to see patients in a timely manner is with the help of the HOPE Network’s inpatient oncology patient navigator, Lauren Staley.

“I would say the biggest difference between what we do at UF Health and what other fertility programs do is that we have an inpatient nurse navigator, so services are available in multiple settings,” Rhoton-Vlasak said.

Staley saves patients a trip out of their hospital rooms by traveling to them, offering consultations and specimen collections in patients’ hospital rooms.

Operated through the division of reproductive endocrinology and infertility in the UF College of Medicine’s department of obstetrics and gynecology, the HOPE Network consists of a diverse team of health care providers including physicians, nurse coordinators, nurse navigators, psychologists, financial counselors, radiologists, surgeons and embryologists.

Some fertility treatments are not covered by insurance, but patients have the opportunity to receive grant funding that is generously donated to the HOPE Network by the Climb for Cancer Foundation, Rhoton-Vlasak said. Over the past seven years, Diane and Ron Farb, founders of Climb for Cancer, have donated thousands of dollars in grants to help build the program, covering resources such as patient education brochures, provider meetings and patient consultations.

The HOPE Network offers a variety of fertility treatment options for men and women. Men have the option of sperm banking, while women may freeze eggs, freeze embryos or use a medicine that may protect the ovaries from chemotherapy.

“Almost 100% of postpubertal male patients will bank sperm; it's less expensive and causes no therapy delays,” Rhoton-Vlasak said. “For female patients, fertility preservation options are more complex and take more time, visits and money so less women do it, but probably an equal number of men and women get counseling at UF Health.”

The HOPE Network lives up to its name — giving patients back the hope of having a family.

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Devin Nori's picture

Like A Water Balloon in a River

Kayden LeeWhen Madeline Lee went to her 28-week prenatal checkup, she was not able to see her son’s head in the sonograms. Her doctor later determined that the fetus had abnormal fluid in his brain and referred Madeline to UF Health in Gainesville.

“Needless to say, the results tore me apart,” Madeline said. “They were not at all what I was hoping to hear.”

When she got to UF Health Shands Children’s Hospital, she and the baby’s father, Markieth, met a team of specialists who quickly provided a diagnosis. Their baby boy, Kayden, had an arachnoid cyst, the most common type of brain cyst. This fluid pocket is lined by the arachnoid mater of the brain, which resembles a spider web when analyzed under a microscope. Oftentimes, those with arachnoid cysts do not exhibit any symptoms and, if stable, the cysts do not require treatment.

David Burchfield, M.D., chief of neonatology, decided that when Kayden was born, he would be immediately sent for imaging, be seen by pediatric neurosurgery, and would be admitted to the neonatal ICU at UF Health Shands Children’s Hospital for monitoring. Sure enough, a few weeks later, Kayden was born and the plan went into effect.

Lance Governale, M.D., chief of pediatric neurosurgery, saw Kayden shortly after birth and did not find signs of increased pressure in the head. Kayden also had an MRI, which showed that the cyst was still there, but it had not expanded. Therefore, there was no reason to rush the baby into surgery, and Madeline and her son eventually went home. In order to keep a close watch on the cyst, another doctor’s visit and an MRI were scheduled for a month later. This time, Governale discovered that the cyst had enlarged and knew he needed to take action.

“I describe an arachnoid cyst like a water balloon in a river, with the river being the naturally flowing cerebrospinal fluid that bathes the brain and spinal cord,” Governale said. “To treat the cyst, you don’t need to remove it. Instead, you make holes in the cyst wall so that its fluid flows with the surrounding normal fluid.”

This procedure is called a minimally invasive endoscopic arachnoid cyst fenestration. Although placing a shunt tube is also an option, these can malfunction over a lifetime. Governale recommended the minimally invasive endoscopic option, and the family agreed. It was scheduled for the following week.

“We arrived to the appointment hoping and praying that the first surgery would go great so there wouldn’t have to be a second or third one,” Madeline said. “He (Governale) was able to perform a successful surgery so the fluid would drain on its own without needing a shunt.”

The procedure went very well, and the cyst significantly decreased in size. Since then, Kayden has experienced no health issues and the cyst has remained small. Now 20 months old, he returns for checkups with Governale every three months.

“When I say that Dr. Governale performed a miracle surgery on Kayden, he really did! The baby that was born with fluid in his brain is now a very healthy 1-year-old little boy,” Madeline said. “I will always be thankful for Dr. Governale.”

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Alisha Katz, APR's picture

Heather’s Lifelong Battle

Caption forthcoming

Heather Lowery’s parents were told that she would likely not live to be 3 months old. At 36, Heather has proved them wrong and has set an example for adults living with congenital heart disease.

At 8 months pregnant, Heather’s mother learned from physicians that Heather’s heart was not developing correctly. When she was born at UF Health Shands Hospital on July 9, 1983, her heart rate, which should have been between 150 and 160, measured at 60 beats per minute. Doctors discovered that the baby from Starke was born with congenitally corrected transposition of the great arteries, a complex defect where the heart’s two ventricles along with the two great arteries are reversed.

She was observed and recovered in the neonatal intensive care unit for her first two weeks of life and, at 3 months old, underwent her first of 20 pacemaker-related procedures.

At around age 4 or 5, Heather started to see Jay Fricker, M.D., pediatric cardiologist at the UF Health Congenital Heart Center.

“We’re like family, we’ve been part of each other’s lives for so long,” Heather recalled. “He’s like another dad to me.”

At 9 years old, Heather underwent her first open-heart surgery to try and establish a normal blood flow pattern through her heart.

But despite the number of doctor visits, multiple surgeries and inpatient stays, Heather fondly remembers having a relatively normal life growing up. And while she was looked out for by those around her, including a school bus driver who would always urge her to sit at the front of the bus, Heather was determined to not let her disease define or stop her. As a student at Bradford High School, she even served on her color guard team and on her cheer squad.

Just as Heather entered adulthood at 18, doctors recommended that she have a second open-heart surgery to replace a heart valve. Heather was given the option of a pig valve, which would allow her to get through her child bearing years with the possibility of conceiving, but would likely require replacement in 10 to 15 years, or to have a mechanical valve which would complicate her having children because of the need for blood thinning medication. But when surgeons went to operate, they noticed that Heather’s valve could potentially be repaired without the need for a valve replacement.

Over the next 15 years, Heather married her husband, Ryan, a firefighter, and together they adopted a daughter, Emma.

But in 2018, Heather noticed a decline in her health. Fricker discussed with her and Ryan the option of a heart transplant.

“It scared me to death,” Heather said. “It went from scary to really scary.”

Heather underwent a transplant evaluation over several months, and was also transitioned from pediatric to adult cardiology care during that time.

In early 2019, Heather experienced outward signs of heart failure with her body retaining too much fluid and her feeling constantly short of breath. She was admitted to UF Health Heart & Vascular Hospital on multiple occasions.

Heather was seen by Philip Chang, M.D., director of the pediatric and congenital heart electrophysiology program at the UF Health Congenital Heart Center. Chang monitored her heart’s electrical wiring, including her pacemaker.

On May 31, 2019, Heather underwent a complex procedure with Chang to change her existing pacemaker to a combined implantable cardioverter-defibrillator and cardiac resynchronization pacemaker device to protect her in the event of life-threatening arrhythmias, which heart failure patients can be at risk for, and to try to improve her heart failure.

During her hospital stay after the device was implanted, Diego Moguillansky, M.D., M.S., co-director for the adult congenital cardiology program at the UF Health Congenital Heart Center, cared for Heather and gained a deeper understanding of her medical history.

Despite the change in her cardiac device and very close attention to her medication doses, Heather continued to retain fluid. Gaining even three pounds over one night triggered discomfort, and resulted in swelling in her face, neck and chest. Moguillansky strongly recommended a third open-heart surgery to replace a leaky valve that was likely contributing significantly to her heart failure and could not be adequately addressed with medications alone.

“My husband and I talked about it, prayed about it, and, just before the holidays last year, decided to go through with the surgery,” Heather said.

On Feb. 6, 2020, Mark Bleiweis, M.D., director of the UF Health Congenital Heart Center and chief of congenital cardiothoracic surgery, performed a complex 12-hour valve replacement surgery and implanted an On-X™ mechanical valve.

“We love him. He’s one of the best, stand up guys I’ve ever seen,” Heather said. “He doesn’t make you feel rushed or make you feel like he’s not listening. He is a phenomenal guy.”

Heather stayed in the pediatric cardiac intensive care unit for nine days and was attended to by multiple nurses; intensive care unit physicians; Jana Reid, APRN, a member of the adult congenital cardiology team; Moguillansky and Bleiweis. Together, they monitored Heather’s vitals and encouraged her throughout recovery.

“My hope and prayer is that I won’t have any fluid buildup, and I’ll be able to not be short of breath,” Heather said.

Only time will tell if Heather will need a heart transplant, the next step that would need to be taken if she continues to experience symptoms of heart failure.

But in the meantime, Heather looks forward to doing a little more than before. She looks forward to not having daily weigh-in rituals and has always wanted to ride a bike.

As a volunteer at her daughter’s school, Heather enjoys watching her daughter attempt to ride a tricycle every Thursday. One day, she hopes to ride alongside her.

“I live each day like it’s my last and one day at a time,” Heather said.

Peyton Thomas's picture

Changing the Narrative of Cystic Fibrosis

There was once a time where cystic fibrosis, or CF, was considered a terminal disease. While this may have been the case years ago, patients diagnosed with CF now can work with their medical team to create a treatment plan tailored to the individual characteristics of their disease so that they can live a fulfilling and sustainable life.

“We are in an era of medications that are revolutionizing CF,” said Jorge Lascano, M.D., the director of UF Health’s adult cystic fibrosis program. “CF is no longer a death sentence, and the research we are doing will continue to help our patients live longer and better lives.”

CF, a genetic disease, affects a person’s organs, primarily the lungs, and creates a thick, sticky mucus in the body that can lead to blockages, damage or infections to the affected organs. Symptoms vary depending on the patient but often include persistent coughing and frequent lung infections — such as pneumonia or bronchitis — that can require aggressive treatment, as well as issues with bowel function.

The disease is most commonly diagnosed at birth thanks to CF gene screening. Physicians can now also diagnose people later in life who may have a mild form of the disease not detectable at birth. This is done by looking for specific genetic mutations.

“The disease does not occur more in male or female patients, but it is typically more common in Caucasian patients,” said Lascano, an associate professor of medicine in the UF College of Medicine. “As we take care of a very diverse population here at UF Health, we continue to help patients with CF from different races and backgrounds.”

Once diagnosed, patients can require three to four hours of treatment each day and must work with their provider to create a personalized treatment plan to improve their overall quality of life. Physicians must work to help support the patient’s goals and lifestyle to ensure consistency and effectiveness, according to Lascano. UF Health’s CF program prioritizes the importance of comprehensive care for its patients to develop their plan, supporting adults and children as they reach the critical transition from pediatric to adult practices. UF Health’s CF program has created transition practices both locally and remotely to assure patients are ready to move on with their lives once they transfer services.

“Our team is complete with a multidisciplinary staff so when patients visit our clinic, they can see every specialist in one trip, including our endocrinologist, gastroenterologist and ENT,” Lascano said. “This is important specifically for the large number of patients who travel from out of town to receive our care.”

This month, the UF Health’s CF program will host its second North Central Florida CF conference, bringing together professionals from multiple disciplines to learn and discuss the changes in CF care. UF Health joins the Cystic Fibrosis Foundation in celebrating CF Awareness Month to help others learn about how the disease impacts the lives of those affected.

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Leah Harms's picture

Al Benefits From UF Health Urology, Cardiology Tag Team

Al Johnson and his wife

Al Johnson has lived in Georgia for most of his life. After owning a successful auto repair shop in the area for 20 years, he had to retire his business right next door due to his unexpected health issues. This was crushing to him after building a business he truly loved.

“I’d probably still be working if it weren’t for all my medical issues,” Al said.

Al’s health changed significantly in 2010, when he got diagnosed with prostate cancer at 58. After months of misdiagnosis, discussions of having his prostate removed, cancer spreading into his lymph nodes and radiation, he didn’t know what his future looked like. As a man of faith, he trusted God to help him through and get him to the right physicians.

In 2014, he finally was able to come to UF Health and get the help he needed. Dr. Larry Yeung, in the UF Department of Urology, evaluated him and after some testing and maintenance, installed a suprapubic catheter for Al. Two years later, Dr. Yeung coordinated a colostomy operation with Dr. Sanda Tan.

After some initial success, his bladder was removed, and he was also given a urostomy bag. While it was a painful process, Al knew he found a hospital and physicians he could trust.

That discovery would soon pay off again.

In 2018, Al unexpectedly had a heart attack. Since he still lives in Georgia, he saw local doctors who performed angioplasty and placed a stent in the right coronary artery. They told him that he has a chronic total occlusion (CTO) of left anterior descending artery (LAD), and angioplasty or coronary artery bypass grafting (CABG) were not possible due to complexity of the lesion. He continued to experience angina and was eventually referred back to UF Health.

Al met Dr. Calvin Choi, an interventional cardiologist who leads the UF Health Chronic Total Occlusion clinic. After a lengthy discussion, Al remembers Dr. Choi guaranteeing that he would do his best.

Al said that reminded him of himself, so he trusted him. Al underwent a successful angioplasty of LAD CTO and is now doing well. He only has to return for once-a-year cardiac checkups.

“Dr. Choi called me and talked to me one night for 45 minutes,” Al said. “I’ve never had a doctor do that. It was like he was a family member.”

Al and his wife now come down here for his urologic and cardiac care. It’s a drive, but it’s worth it to them.

“That hospital has more caring people than any place I’ve been in my life.”

Peyton Thomas's picture

Testicular Cancer Awareness Month

A middle-aged dad plays basketball with his son.

This April, UF Health celebrates Testicular Cancer Awareness Month to inform and spread awareness about the importance of understanding this disease. Testicular cancer occurs when cancer cells form in one or both testicles and about 9,600 new cases are expected to be diagnosed this year in the U.S., primarily affecting young men in their late teens through early thirties.

The cancer usually presents itself as a mass, which may be accompanied by pain or swelling in the testicle(s). However, one of the biggest issues surrounding testicular cancer is patients waiting too long to be seen by a physician. According to Dr. Padraic O’Malley, MSc, MD, FRCSC, the time between when a patient identifies an unusual mass and when they seek medical attention is critical.

“The sooner we can identify the cancer, the more we can limit the amount of treatment the patient will need,” Dr. O’Malley said.

Since early detection is vital, monthly self-examinations are recommended to stay aware of any potential abnormalities. Once diagnosed, testicular tumors are removed in an outpatient surgical procedure, and the patient then goes through blood work and a CT scan. UF Health provides testicular cancer patients with a multidisciplinary group approach to evaluate these results and help the patient make any additional treatment decisions necessary based on the advancement of their disease. Survival outcomes are excellent for most men with testicular cancer and self-examination may not decrease this, but it may decrease the need for additional therapies, including chemotherapy, radiation or more invasive surgery.

“We work closely with the infertility group to encourage patients to bank their sperm,” Dr. O’Malley said. “Chemotherapy, surgery and radiation can affect fertility in some cases, but we work to encourage them to consider their future fertility desires.”

While these might not always be the easiest conversations, Dr. O’Malley walks patients through the process and common misconceptions through initial counseling. One of the most common concerns is the cancer’s effect on libido, masculinity and erectile function, which still remain healthy following surgery and treatment.

The best way to handle testicular cancer is being proactive. When a patient notices any unusual mass, Dr. O’Malley advises not waiting and expecting it to just go away. Early detection is crucial in tackling testicular cancer, and UF Health provides these guidelines for monthly self-examinations.

A Cancer Patient’s Guide to COVID-19

Two women health care providers talk while wearing masks.

Cancer doesn’t stop — not even for the novel coronavirus disease, COVID-19. The unknowns related to the virus are leaving people concerned, especially cancer patients who may have weakened immune systems as a result of cancer treatment and/or may be older.

The Florida Cancer Control and Research Advisory Council (CCRAB), North Central Florida Cancer Control Collaborative (NCFCCC) and the UF Health Cancer Center recently hosted the webinar “Cancer in the time of Coronavirus,” with Christopher Cogle, M.D., an oncologist and UF professor of medicine, and Amar Kelkar, M.D., a UF hematology and oncology fellow. They provided information for cancer patients, survivors, caregivers and providers on how to best navigate cancer treatment and survivorship during the coronavirus pandemic.

Here are their answers to some COVID-19-related questions that cancer patients may have:

What is COVID-19? How can I contract it? How can I prevent it?

Coronaviruses are a family of viruses that typically cause respiratory illness. COVID-19 is caused by a novel coronavirus originating from an outbreak in Wuhan, China.

COVID-19 causes respiratory illness and spreads from person to person through droplets released into the air by infected individuals. These droplets can also live on surfaces for several hours to days. Other people contract the disease by breathing in the droplets or touching surfaces they land on and then touching their eyes, nose or mouth. The most common symptoms of this coronavirus include cough, fever or shortness of breath.

Although there are no vaccines yet for COVID-19, prevention right now includes washing hands frequently, social distancing and wearing a mask to prevent touching your face.

To learn more about COVID-19, check out the Centers for Disease Control and Prevention’s fact sheet.

Am I at higher risk of becoming critically ill from COVID-19 because I have cancer?

According to the American Cancer Society, patients who are currently fighting cancer and some cancer survivors are at higher risk for COVID-19 due to weakened immune systems caused by cancer and chemotherapy. Another risk for many patients with cancer is older age. Being higher risk means a greater chance of catching the infection and a higher chance of developing severe pneumonia or multi-organ system failure.

When should I…?

Call my doctor?

You should call your oncologist as soon as you show symptoms, including fever, cough, shortness of breath, tiredness, diarrhea, dehydration, worsening cancer or cancer treatment symptoms, or if someone in your home tests positive for COVID-19.

Get tested?

Seek a COVID-19 test if you have a fever or cough. Call your primary care provider to discuss your symptoms. All community exposures will be referred to the Department of Health in your respective county; however, in order to streamline the process, please contact your doctor first. If you do not have a primary care physician, please contact the health department in your area. Residents of Alachua, Duval, Lake County, Marion and Sumter counties can find more information here.

Go to the hospital?

Try to avoid the hospital unless you have shortness of breath, low neutrophil count (also called neutropenia) and fever, or history of transplant and fever.

What precautions are my oncologists taking to protect me?

Your oncologist may reduce the dosage of your medication or radiation, delay surgery, delay the start of medication or radiation, use telehealth visits or home health care rather than clinic or hospital visits, or switch from medication injections to oral drugs. Your oncologist may also start using growth factors such as erythropoietin or G-CSF to boost your blood counts.

Doctors make these adjustments based on a balance between your risks for cancer progression or relapse and your risks for COVID-19.

Why isn’t my doctor delaying my cancer treatment during this time?

If your doctor is not delaying your treatment, it’s because of a high need to treat the cancer now. For example,

  • You have a disease with high-risk of progression or relapse.
  • Your surgery is time-sensitive.
  • There may be no alternative treatments available.
  • Without therapy, you may die in the next two to four weeks.
  • Your symptoms may not be controlled by oral medications.
  • You may have life-threatening complications from the disease.

Where can I look for accurate, up-to-date information about COVID-19?

Check out these resources for COVID-19 information and updates:

Provided by By Christopher Cogle, M.D. and Amar Kelkar, M.D..

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Putting Practice into Action

Dave poses with a fish he has caught.

For 18 years, Sandra “Sandy” Demasters-Reynolds, M.S.N, R.N., CCTC, has served as the living donor program manager at the UF Health Shands Transplant Center. But Sandy never really thought of becoming a living organ donor herself until organ failure affected a loved one of her own.

Sandy’s brother-in-law, Dave, was diagnosed with polycystic kidney disease, an inherited disorder that causes cysts to develop within the kidneys and disrupt kidney function. The 66-year-old knew his mother had kidney failure and was on dialysis, but he did not know what caused her kidneys to fail. Dave was diagnosed after his daughter was diagnosed with the disease in her early teens.

Dave, who lives on a farm in Tennessee, always kept himself busy. Whether it was tending to their horses or working multiple trades, he monitored himself routinely and continued to live an active lifestyle.

In the summer of 2018, Dave started to feel the effects of his disease. As his condition worsened, he had to initiate renal replacement therapy in the form of home kidney hemodialysis with the help of his wife, Billie, also a nurse.

Several days each week, Dave spent two to four hours on dialysis, with an additional hour and a half to set up and prime equipment.
“They were doing home dialysis and Billie sent a picture of him sitting on the dialysis machine smiling,” Sandy recalled. “I‘m like, ‘That’s not Dave, he’s much more active than that. He deserves a chance to get off of dialysis through transplant.’”

Sandy, who also previously interacted with many liver, kidney and kidney-pancreas transplant patients in the UF Health surgical intensive care unit, explained that patients who need dialysis often have to visit dialysis centers three days a week for hemodialysis. They cannot perform home hemodialysis for a variety of reasons, such as not having a support person to assist, having a difficult time performing dialysis at home and not living in an environment suitable for the dialysis to occur.

Dave was evaluated and placed on the kidney transplant list. He had four potential donors apply to donate a kidney but each living donor fell through, primarily because of preexisting conditions.

Sandy knew she couldn’t sit idle while Dave’s condition continued to deteriorate. She knew the average life of a patient on dialysis is five years. She wanted Dave and Billie to be able to enjoy the retirement they had worked so hard to prepare.

Sandra Demasters-Reynolds

So, Sandy started the process to become a living kidney donor. She completed an online application, submitted her medical history and physical labs and waited to be contacted. Since her brother-in-law lived out of state and was receiving care elsewhere, Sandy intended to travel to his home for care — if she was approved as a donor.

After passing the initial application and medical history component, Sandy traveled for a two-day evaluation that included ensuring her kidneys were functioning properly and that she could function without the need for both kidneys.

Doctors approved Sandy for the procedure, but there was a caveat: She was not the correct blood match for her brother and, therefore, could not donate her organ to him.

Instead of being Dave’s living donor, Sandy and Dave were registered on the paired kidney donation list. Part of the living kidney donor program, paired kidney donations are situations when a recipient and donor who do not match blood types find another recipient and donor in the same situation, and swap organs.

Sandy explained that there are many misconceptions surrounding living donor programs, one myth being that a person cannot be a living donor if they are not blood-related. Other misconceptions include believing that their religion won’t support organ donation when, in fact, all major religions in the U.S. support living and deceased organ donation — even those that are against blood transfusions. Other common misconceptions include that a person cannot live with one kidney and that they’ll need another later in life, as well as the belief that out-of-pocket costs for the donor will be too high.

In general, living donors need to be between the ages of 18 and 70. Donors must be willing to donate, have a blood type that is compatible with the recipients, or agree to paired donation, as well as not have diabetes, or high blood pressure that requires being on multiple blood pressure medications.

“I knew paired donation was our only option. I knew with the paired donation, we’re not only helping my brother-in-law and the other paired recipient get a kidney, but two others can receive a deceased donor kidney,” Sandy said. “Four people in need of a kidney transplant were helped. Two receiving a living donor kidney, which removed them from the deceased donor list and allowed two deceased donor kidneys to go to other candidates in need of a transplant.”

Dave and Sandy together in the hospital.

On Dec. 2, 2019, Sandy received a call that there was a potential pair and, if everything worked out, the surgery would take place on Jan. 2, 2020 — one day before her 60th birthday.

Prior to the procedure, Sandy reached out to longtime colleague Kenneth Andreoni, M.D., a transplant surgeon and the chief of transplantation surgery at the UF Health Shands Transplant Center, to connect with her surgeon.

The transplant program at UF Health has been part of three-way and two-way swaps. This involves staff at both transplant centers coordinating operating room times for donors, kidney travel from one center to the other and the recipient surgery to transplant the donated kidney.

After the surgery, Sandy spent two days in the hospital and four to five weeks recovering before returning to work. She will have routine six-month, one-year and two-year follow up appointments in Gainesville. Dave is recovering well and adjusting to life as a transplant recipient.

This experience has expanded Sandy’s role at the UF Health Shands Transplant Center far beyond a program manager. She’s not only a donor herself, she’s become an advocate for other living donors and a community speaker about living donation.

“I feel I have a new purpose in life, to share about living donation and paired donation. I want to share my story to encourage other potential living donors,” she said.

Sandy makes it her mission to visit all of the living donors from UF Health to answer any questions they might have about the recovery and to say thank you.

“I feel it is important to visit our UF Health living donors,” Sandy said. “I am another face to say thank you because I feel they cannot hear it enough. A living donor has agreed to have a surgery they do not need in order to help another person. What a selfless gift! And the donor may not realize they have helped more than one person.”

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Facts and Benefits of Organ Donation

Graphic that says April in National Donate Life Month

Today, there are over 110,000 people nationwide on the organ transplant waiting list hoping for a life-extending donation. Unfortunately, 8,000 people on this list die each year waiting for an organ. Despite 40,000 lifesaving transplants last year, there is still a significant shortage of donors. To help bridge this gap in supply and demand, Donate Life America has designated April as National Donate Life Month.

The month is devoted to raising awareness about organ donation and encouraging people to register.

Kenneth Andreoni, M.D., chief of the UF College of Medicine’s division of transplantation surgery, has witnessed an increase in the age and comorbidities of donors, as well as the complexity of comorbidities of the recipient patients the program treats.

Misconception plays a major role in people’s choice to register for organ donation, and National Donate Life Month helps to clear up these myths. Right now, despite 95% of adults in the United States supporting organ donation, only 58% are registered donors. There needs to be a drastic shift in perception of organ donation to fix this problem, and that starts with education.

“It’s important for people not to assume that they can’t be a donor for a variety of reasons,” Andreoni said. “Most people can donate something, whether it’s an organ or tissue, which can save dozens and dozens of lives down the road.”

Luckily, registering as an organ donor has never been easier. Many states allow people to register upon getting their driver’s license, making the information easily accessible moving forward. In addition to helping the lives of strangers in need, this decision can also aid loved ones in the event of an accident.

“It’s wonderful that with the current laws around the country, and especially in Florida, that you can simply show your willingness to donate on your driver’s license,” Andreoni said. “That’s an active step made by the person, which is extremely simple and kind to family members because you’re not burdening them with that decision. It’s a lot smoother for the family to know that their loved one wanted to donate.”

After this impactful decision is made, it goes a long way. One donor alone can save or drastically improve the lives of eight or more people, and donations don’t always have to occur postmortem. Living donation serves as a viable option, especially in cases of kidney and liver transplantation, and saves the life of both the recipient and the next person on the waiting list.

“A large number of transplant patients do extremely well, improving the quality and timespan of their life,” Andreoni said. “It also drastically increases the productivity of their life, meaning they can be employed again and be involved with their family’s lives again, which is of value hard to measure.”

National Donate Life Month helps tie all the facts and benefits of organ donation together, and serves as an important stepping stone to solving the issue of donor shortages. Learn more about how to register to be an organ donor and about the UF College of Medicine division of transplantation surgery.

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Helping Kids Keep From Spreading COVID-19

During the COVID-19 crisis, it is important to create a sense of safety for children. These are uncertain times, and our kiddos might be feeling anxious — or maybe even sad or scared. There are a lot of unknowns, which can lead to a sense of losing control.

Our UF Health Shands Child Life specialists say it is important to give children specific examples of what they can do to stay safe. A list of who is helping them stay safe often provides comfort, too.

One of the most important things kids can do to help prevent the spread of COVID-19 is wash their hands in addition to practicing social distancing.

Here are some fun ideas and resources to help youngsters with hand-washing:

Kids should sing a song while washing their hands to make sure they wash for at least 20 seconds. They can sing the Happy Birthday song or the Alphabet song. Another idea is to have them sing the kid-favorite Baby Shark song. There is even a new hand-washing version.

Let your children know there are many people out there who are monitoring the COVID-19 situation and taking care of the details in order to prevent the spread of the virus, as well. Our helpers include:

  • Parents/caretakers
  • Teachers
  • Legislators
  • People working in health care
  • People working at stores to keep your kitchen stocked

There are many more helpers out there. Ask your kids if they can think of others. And remember — always wash your hands!

Peyton Thomas's picture

Protect the Skin You’re In

Woman running on a sunny day.

Soaking up the sun can feel harmless, especially when you’re lying by the beach or spending time with friends and family outdoors. But when they’re caught up in the fun, many people forget to consider the negative effects the sun can have on their skin. Unprotected exposure to the sun’s ultraviolet, or UV, rays is one of the leading causes of skin cancer, the most common cancer in the U.S.

The two main groups of skin cancer are nonmelanoma cancers, basal and squamous cell carcinoma; and melanoma cancers, which are less common but more aggressive. Each year, between 2 and 3 million people are affected by nonmelanoma cancers, and about 132,000 people are affected by melanoma cancers. According to Mark Leyngold, M.D., a plastic surgeon at UF Health Plastic Surgery and Aesthetics Center, each type of cancer can look very different.

“The most common signs of skin cancer are any abnormal bumps, moles or discolored spots that linger,” said Kathryn Hitchcock, M.D., Ph.D., a radiation oncologist at UF Health Radiation Oncology.

Other warning signs include rapid skin lesion growth, irregular borders, bleeding or pain, according to Leyngold. It’s important to stay alert of these warning signs because treating early detected skin cancers is much easier than the treatment process for cancers that have progressed over time.

Skin cancer is often identified by a primary care provider or dermatologist, where a sample is taken of the suspicious area and sent for lab testing. If the sample tests positive, surgical removal is used to initially treat the cancer.

“After surgery, a multidisciplinary team reviews the pathology to discuss the next steps for the patient,” Hitchcock said, “In some cases, we identify perineural invasion, which is when cancer cells use the nerves as a highway to attack other parts of the body.”

If the team sees perineural invasion or a similar spread of cancer cells, the patient will need more treatment, typically radiation therapy to attack the cancer. Even if the initial surgery removes all signs of the cancer cells, some patients will need additional reconstructive surgery using skin grafts or flaps to completely repair the affected area.

At UF Health, our specialists work together to ensure every patient is provided with the best method of care. While skin cancer can create a difficult journey for those affected, there are many steps you can take to reduce your risk.

“Everyone should be protecting their skin with at least SPF 30 or greater when spending time in the sun,” Leyngold said. “But sun exposure should be limited. It’s especially important to avoid tanning beds at all costs.”

In addition to limiting exposure to UV rays, visiting your dermatologist at least once a year is recommended to help detect any possible signs or symptoms of skin cancer. UF Health Dermatology identifies and treats a full spectrum of skin conditions for general adult and pediatric patients, and serves as one of the most comprehensive dermatology practices in North Florida.

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The Ride of Her Life

During her monthlong stay at UF Health, Davis-Quinney had the support of her husband and sister.”

Sandra Davis-Quinney has met bumps, curves and stops on her cancer journey. Even with the rough roads she’s traveled, Sandra tries to remain hopeful, resiliently staying on the ride.

Her determination brought her to UF Health Cancer Center’s Jack Hsu, M.D. After multiple rounds of chemotherapy from 2017 to 2019 were unsuccessful against her non-Hodgkin’s lymphoma, Sandra’s next option was a stem cell transplant. However, when her physicians were unable to collect enough stem cells for a transplant, that option was taken off the table. Heading home to Jacksonville to get back on medication and let her body “get itself together,” Sandra met with her UF Health Jacksonville oncologist, Joseph Mignone, M.D., and began looking into other available options.

When she learned at UF Health about the novel chimeric antigen receptor (CAR) T-cell therapy, a genetic therapy that modifies the patient’s own cells to attack their cancer, she knew her ride was just finally gaining momentum. Sandra was a candidate for the treatment, but she wasn’t just any candidate — she was the first CAR T-cell patient at UF Health.

Hsu and his UF Health Bone Marrow Transplant Unit team spent two years preparing to become certified as a CAR T-cell therapy site — developing policies and procedures, building relationships with those in other subspecialties and earning an accreditation for a stem cell lab. In October 2018, UF Health became a designated site for administering the therapy.

“This is the first genetic therapy that was approved for the treatment of adult hematologic malignancies,” said Hsu, a clinical associate professor of medicine in the UF College of Medicine. “It provides another option for patients who have very-high-risk lymphoma.”

Dr. Jack Hsu was on-call 24/7 during Davis-Quinney’s treatment.

The reality of being the first CAR T-cell patient at UF Health didn’t sink in for Sandra until the process was set in motion, she said. She had heard about different clinical trials and new treatments, but now she was the star of the show in one of them.

“Being the first patient is a big deal,” she said. “If it affords other people the opportunity and the availability is here for them, then that’s great.”

The initial extraction of her cells wasn’t what she expected. She imagined it would be invasive and painful, but the procedure ended up being more like drawing blood.

“You feel different in your body because they extract the blood, extract what they need from the blood, and put it back into your body,” Sandra said. “I was freezing cold, but it wasn't painful.”

Going through the actual CAR T-cell therapy was a different story. Because she had been through multiple rounds of chemo, Sandra said the therapy itself was bearable.

“It was not pleasant at times, but it wasn't really bad until I went through the process of where I had to go to the intensive care unit,” she said.

There are two possible major side effects to the treatment — cytokine release syndrome, which causes patients to develop swelling and their blood pressures to drop; and neurotoxicity, which causes changes to patients’ mental status, Hsu said. Sandra developed both.

“Getting her through that, since we didn’t have practical experience before this, was very exciting because although we knew what to expect, actually seeing it was a different experience,” Hsu said.

Because she developed neurotoxicity, Sandra doesn’t remember the week she spent in the intensive care unit. For days, she was coherent and talking, but there’s a gap where the memories of those days should be.

Although her body is still adjusting to life after CAR T-cell therapy, an evaluation three months after her therapy revealed the news Hsu, Sandra and her family longed to hear — her lymphoma is in complete remission.

“No pain, no gain,” Sandra said. “I just do what I need to do and live life as a happy day every day.”

Hsu said treating the first CAR T-cell patient at UF Health was scary yet exciting. He was confident in the policies and procedures he and his team spent years perfecting.

“I'm happy to say that because we spent some time ironing out the details and trying to figure out potential points of failure, we didn't really have much of a problem,” he said.

The CAR T-cell therapy program at UF Health opens doors to new opportunities for patients, physicians and researchers. Now, UF Health can participate in CAR T-cell-specific trials and work with pharmaceutical companies to target other diseases.

“Developing this program gives us the ability to participate in trials of this class of therapy because not all facilities are going to be able to do this,” Hsu said.

CAR T-cell therapy is in active investigation, not only for other blood cancers like multiple myeloma but also solid tumors like colon cancer. These treatments will become an important therapeutic option for patients like Sandra, especially as similar therapies are further designed and explored.

The accessibility to novel treatments like CAR T-cell therapy is why Sandra says she chose UF Health. While her cancer journey hasn’t always been smooth, her determination to stay on the ride has led her to the finish line.

“There are challenges. There's days that I’m disappointed with what my counts are, but I don't let it discourage me,” she said. “I keep praying, driving, putting fuel in my tank and propelling forward.”

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5 Ways to Reduce Your Risk of Kidney Disease

graphic text reads world kidney day 12 march 2020
Today is World Kidney Day, a global campaign aimed at raising awareness about the importance of our kidney health. Kidney disease is a noncommunicable disease that damages your kidney function and affects more than 1 in 7 adults. This year’s theme is focused on how to prevent the onset and progression of the disease, so we’ve listed five ways to reduce your risks and protect your kidneys.

1. Get a screening from your doctor
Nine in 10 adults don’t know they have kidney disease. You can lose more than half your kidney function without realizing until it’s too late. Next time you’re getting an annual checkup, talk to your provider about getting screened. They’ll use a blood test and a urine test to identify if your kidneys are working as they should.

2. Manage your blood sugar
Diabetes is one of the most common causes of chronic kidney disease because it’s a condition where your blood sugar levels are too high. When your blood has too much sugar, the kidney filters that remove waste and fluid become damaged and are unable to perform their necessary functions. Improving your diet and exercise habits are key ways to maintain a healthy blood sugar.

3. Monitor your blood pressure
High blood pressure is the second-leading cause of kidney disease. This condition can damage blood vessels in the kidneys, which weakens their ability to work properly. Similar to kidney disease, people with blood pressure are often unaware because there are often no symptoms. In addition to getting checked at your annual physical, you can monitor your blood pressure for free at many pharmacies or by using an at-home, digital blood pressure monitor.

4. Eat a kidney-friendly diet
A healthy diet is beneficial for preventing diabetes and reducing the risk of high blood pressure, which lowers your chance of kidney disease. The National Kidney Foundation recommends cutting sodium, reducing red meat intake and limiting processed foods for a kidney-friendly diet.

5. Get active
Staying physically active also helps prevent the issues related to increasing the risk of kidney disease. Walking, biking, swimming and other aerobic exercises are all recommended to improve your overall health. Regular exercise helps maintain a healthy weight, control blood pressure and lower blood sugar, which helps make sure your kidneys are functioning properly.

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Some Things Can Wait. Colorectal Cancer Doesn’t.

Colorectal cancer is the third most common cancer in the U.S., and second-leading cause of death, taking 50,000 lives each year. However, thanks to years of raising awareness and education, there are currently over 1 million colorectal cancer survivors alive in the U.S. With the goal of keeping this number rising, March is National Colorectal Cancer Awareness Month.

Throughout the month, fundraisers and walks are held nationwide to bring survivors and advocates together for the cause. March 6 is Dress in Blue Day as a part of the ongoing social media campaign #TomorrowCantWait, urging individuals to get screenings and listen to their bodies when something is wrong.

Symptoms of colorectal cancer include changes in bowel habits, abdominal discomfort, rectal bleeding and fatigue. However, these symptoms are similar to those of other conditions, making people look past them initially. Oftentimes, by the time they go in for evaluation, the cancer has advanced. This is why colorectal cancer is often referred to as “the silent killer.”

This makes regular screenings an absolute necessity to anybody who is over 50 years old, or has a family history of colorectal cancer or lives with pre-existing conditions like genetic disorders, cancers or inflammatory bowel disease.

Luckily, when detected early, colorectal cancer is highly treatable. Most commonly, treatment includes some form of surgery. Early-stage colorectal cancer typically only requires a minimally invasive approach. But as the cancer advances, so does the complexity of the treatment. For serious cases, chemotherapy and radiation may be necessary.

Sanda Tan, M.D., Ph.D., a UF Health colorectal surgeon, has watched UF Health’s Gastrointestinal Oncology Center develop with a strong team of fellowship-trained specialists.

“We are a group of physicians who work together as a team,” said Tan, an associate professor of surgery in the UF College of Medicine. “We meet every Thursday at tumor board, where every rectal cancer gets presented, so each case has a whole team of physicians sitting in one room to come up with the optimum treatment plan.”

In addition to collaborative care, the program also has several clinical trials in progress to research new treatment techniques and methods. The team is currently evaluating how radiation time can be altered for certain cases and how surgery can be paired with chemotherapy to improve outcomes.

“The bottom line is that you have dedicated physicians working together and resources that are just a phone call away to help patients navigate each step of their care,” Tan said.

To learn more about how you can participate in National Colorectal Cancer Awareness Month, visit Colorectal Cancer Alliance for events near you and UF Health Gastrointestinal Oncology Center for consultation.

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The Food that Fuels You

woman in athletic clothing standing at a kitchen counter cutting up fresh fruit for a smoothie
Many people use the start of the new year as a reminder to get back into their diet and exercise routine, but it’s important that we maintain these healthy habits throughout the entire year. In this spirit, the Academy of Nutrition and Dietetics deemed March as National Nutrition Month, devoted to the education and implementation of healthy living.

“I think it’s great to have a month dedicated to bringing awareness to the way we are eating, to what we are feeding our bodies and the kind of lifestyles we have that will contribute to our overall health. It’s good to take time to realize that food is fuel, nourishes our body and can greatly impact the way our body works if we feed it in a healthy way,” said Alba Osorio, M.S., R.D., L.D./N., a UF Health dietitian. “Unfortunately, we sometimes use food as comfort and for the wrong reasons.”

Food has many important roles in our bodies, such as being a modulator of inflammation and of gene expression, providing raw materials for structural support and membranes; it is also a controller of gut flora — good food and fiber feeds the good bacteria. Our gut bacteria has a huge influence on our health and studies have shown their role in vitamin synthesis, they are involved in bile acid metabolism and the production of neurotransmitters.

A key component to being healthy is listening to your body and understanding how much fuel it actually needs and what foods to eat. We can find ourselves turning to food when we’re stressed, bored or when we’re celebrating. This can create an association that has the potential to develop into an unhealthy dependency or emotional eating. One way to combat this is by monitoring what we eat through an app or a journal. This helps us visualize what we’re putting into our bodies each day and to find different and healthier ways to cope with those feelings, such as physical activity.

“Because of the type of busy lifestyles that we have there’s not a schedule for meals, so some people skip meals and choose to snack throughout the day instead,” Osorio said. “Of course, the kind of foods that they choose to snack on are fast foods and packaged foods rather than lean, nutrient-dense foods or fresh fruits and vegetables.”

By making small adjustments, like replacing cream and sugar from our morning coffee with fat free milk, we can make a long-term impact on our health. Another easy daily change is to read food labels before making purchases at the grocery store to further understand what makes up the meal.

As much as nutrition is viewed as an adult issue, our eating habits develop far earlier than we realize. As we grow up, so do our eating habits. However, it’s important to understand where these habits come from.

“Parents are the first models for kids to learn from, so they set an example by what they eat and also what they feed their kids,” Osorio said. “If they’re not being consistent by what they eat themselves and what they feed them, the kids are going to learn conflicting messages.”

Luckily, nobody is alone in their journey to a healthy lifestyle. UF Health provides a handful of programs and resources to help get patients on track and keep them there. Every third Thursday of the month, UF Health’s Metabolic and Bariatric Surgery team holds support groups for current and prospective bariatric surgery patients, promoting physical activity and healthy eating. To learn more about these resources, visit UF Health’s Bariatric Surgery Center.

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Keeping Your Kidneys in Tip-Top Condition

blue and purple image of kidneys
More than 30 million adults in the U.S. are diagnosed with kidney disease, and UF Health is committed to raising awareness about prevention. While only about the size of your fist, your kidneys perform vital functions for the body. Most people know they make urine, which extracts extra water and waste from your system. However, the kidneys also control your body’s chemical balance, blood pressure and red blood cell production. About 14% of the U.S. population experiences chronic kidney disease, which is a condition that impairs kidney function and affects around 850 million people worldwide.

Kidney disease is known as a “silent killer” because people often do not experience any signs or symptoms until the disease has advanced. According to Mark Segal, M.D., Ph.D., chief of UF Health’s division of nephrology, hypertension and renal transplantation, patients can lose 50% or more of their kidney function without even knowing it.

Diabetes, hypertension and family history relating to kidney failure are the most common risk factors of kidney disease. Racial disparities in the disease have shown Hispanics and Native Americans are at a higher risk for kidney disease due to increased frequency of diabetes and high blood pressure. African Americans are at higher risk due to increased frequency of diabetes, high blood pressure and genetic risk factors.

“Once you develop kidney insufficiency, you are much more susceptible to cardiovascular disease,” said Segal, an associate professor in the UF College of Medicine. “It’s important for everyone to take preventive measures and modifications to maintain health.”

At UF Health, our team offers access to subspecialty nephrology practices to ensure patients are treated by doctors with expertise in their specific condition. Physicians in these specialty areas diagnose the underlying cause of hypertension and provide specific treatment for acute kidney injury, which is the rapid loss of kidney function.

“Acute kidney injury can occur during hospitalization due to other conditions the patient may have experienced,” Segal said. “Having suffered from acute kidney injury, you are at higher risk of further kidney damage and cardiovascular disease. The physicians in this practice can stratify your risk and treat to minimize the possibility of further consequences.”

These practices help address all risk factors for the patient and determine treatment based on specific symptoms. UF Health is ranked by U.S. News & World Report as one of the nation’s top hospitals for nephrology. While kidney disease can be intimidating, there are many ways to help prevent it. Maintaining a balanced lifestyle through regular physical activity and healthy food choices is one of the best ways to keep your kidneys healthy. Foods that are high in antioxidants, vitamins or nutrients, such as apples, blueberries or salmon, are beneficial for kidney health.

Getting tested is essential to check on your kidney health. One of the easiest tests is measuring your blood pressure, which can be done quickly at your local drugstore. Other blood and urine tests can be handled by your primary care provider. This month, make it your priority to stay on top of your kidney health by getting tested and improving your lifestyle.

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A perfect match

If the best gift of all is life, then the second-best must be love.

Jessica Scoggins and Daniel Sullivan, both transplant recipients, met through their involvement in LifeQuest Organ Recovery Services support groups. They joined after their transplants and their hearts were shaped in a way they could have never expected.

In the spring of 2018, Daniel received a lung transplant at UF Health Shands. In the fall of 2018, Jessica received a liver transplant at UF Health Shands. Both found a sense of community in their support groups that motivated them to give back.

One day when Daniel and Jessica were volunteering at a LifeQuest event, people began to notice their compatible hearts for living life to the fullest and for promoting the importance of organ donation.

“The people we were volunteering with kept sending us on little adventures and errands together because they were trying to set us up,” Jessica said.

Support group members had a hand in getting Daniel and Jessica together.

Daniel, however, had a different take on their first meeting. “She was giving me the eye,” he said chuckling.

Jessica said she wasn’t expecting anything more than a friend, especially since Daniel would soon be moving to Spain. However, after growing closer, they realized it was worth it.

“With us both being transplant recipients, we know that whatever life we have in this second chance is precious, and we view life in the same way,” Daniel said. “Our time may be limited … you just never know. We try to enjoy the time we have together and make it the best possible.”

Understanding the importance of helping people through the transplant process, Daniel and Jessica use their time together to go to support groups or visit people who are beginning their transplant journey.

“As much as we care for each other, we really find joy in helping other people because what we’ve experienced is not the norm,” Jessica said.

LifeQuest provides an outlet for people to experiencing healing through joy-filled volunteering. Coral Denton, LifeQuest Organ Recovery Services public education coordinator, trains and matches volunteers to work events in groups that allow for relationship building beyond the event or organization. She seeks to build a community-like atmosphere with volunteers from all backgrounds, such as support groups, recipients, donor families and more.

Having trained both Jessica and Daniel, Coral has seen the way volunteering has allowed them to become more comfortable in sharing their stories, both publically and with each other.

“Since getting to know them both, I’ve seen them become more confident in telling their stories and caring for each other,” she said.

Daniel affirmed this truth about his relationship with Jessica.

“She’s felt the same things that I’ve felt,” Daniel said. “It’s so nice to be with someone who gets it.”

If you have a connection to organ donation and are interested in volunteering, please contact Coral Denton at dentcl@lifequest.ufl.edu or 352-733-0350.

This story was written by Emily Dunston, Strategic Communications Intern.
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The Gift That Keeps On Giving

A hand holding a red heart with the words proud to be an organ donor on it
Valentine’s Day is a time for loving, sharing and caring. We know what this means in the romantic sense, but what if there were a more meaningful way to celebrate the holiday?

Feb. 14, 2020 marks the 22nd annual National Donor Day, a day dedicated to spreading awareness about organ donation. National Donor Day focuses on more than traditional organ donation, highlighting the importance of tissue, marrow, platelets and blood donations.

Stephan Moore, UF Health Shands Transplant Center program director, has witnessed the impact of organ donation throughout his nearly seven years in the position. He has watched the program expand to new heights as the need for organ donors has continued to grow.

Right now, the demand outweighs the supply, leaving patients in dire need of organs without enough donors to contribute. As of July 2019, over 113,000 people are on the national transplant waiting list. With a list this massive and not enough organs to support it, an average of 20 people die each day waiting for a transplant.

While 85% of adults in the United States support organ donation, only 58% are registered as donors. Because many people are hesitant to become a registered organ donor based on misconceptions, the goal of National Donor Day is to close this gap through increased awareness and education. Some potential donors find the thought morbid, even though in 2018, over 6,830 transplants were from living donors who were able to contribute an organ, like a kidney, or portion of an organ, like a lobe of their liver. Others might think that one person registering can’t make much of a difference, but one donor can save eight lives or more by contributing organs such as the heart, pancreas, intestines, lungs, kidneys and liver (which in some cases can be dissected for two recipients), as well as eyes, skin, tissue and more. Organ donations aren’t just benefiting older sick people, either. Young individuals are also in need of organs for a chance to live life to the fullest.

“We’ve had patients experience strange reactions while giving birth that mess up their lungs. Lung transplants have been able to save lives of young ladies with young children, and allow people to take care of their families,” Moore said. “Transplants really allow people to get back to a normal life.”
Not only does organ donation save patients’ lives, it often helps grieving families to heal.

“Once the donor family gets past the trauma of losing their loved one, they come to the realization that someone was helped through their tragedy,” Moore said. “I get to read some of the letters that donor families receive from recipients, and many of them find comfort in knowing that somebody was helped through their loss.”

To learn more about how to register and advocate for organ donation, visit UF Health Shands Transplant Center for resources.

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Call Everyone: Bobby's Journey with CHD

Robert “Bobby” Murray, 34, was born in Hollywood, Florida on Jan. 23, 1985 – during a decade in which long-term survival into adulthood for a person with congenital heart disease was grim. He had two rare heart defects present at birth: tricuspid atresia, a heart valve defect that blocks blood flow; and transposition of the great arteries, meaning the two arteries leaving the heart are reversed.

Bobby underwent his first surgery just before turning 2 years old and another at 15 years old to palliate his complex heart condition with a Fontan operation, a complex procedure to bypass his missing right heart to provide pulmonary blood flow. But, thereafter, Bobby’s life felt seemingly normal for over a decade.

In 2007, Bobby’s left arm went numb. Bobby’s mother, a nurse practitioner, urged him to go the emergency room when doctors discovered blood clots had lodged in his left arm. Bobby underwent surgery to remove the clots, but two years later he had clots in his right arm. The clots, formed because of a dilated Fontan baffle, had Bobby and his mother traveling for care from South Florida to Orlando, from one opinion to the next. In 2010, Bobby had an additional operation to revise his Fontan to an extra-cardiac conduit.

But heart trouble found Bobby again, this time in 2012. He needed a pacemaker implant through open chest surgery to help control his heart rhythm. Bobby’s sternal precautions, which typically includes avoiding any significant weight lifting for eight weeks after surgery, were removed just in time for him to hold his first child, Skyler.
Over the next three years, Bobby experienced chest pains, constant fatigue and vomiting – he was in heart failure.

Frustrated and upset, Bobby’s mother sought another opinion. A colleague recommended Diego Moguillansky, M.D., director of the adult congenital cardiology program and an adult congenital cardiologist at University of Florida Health.

Bobby and a child in a selfie. Both are smiling at the camera.

Bobby and his mother traveled to Gainesville, Florida in December of 2015 for a series of tests, including a liver biopsy, a cardiac catheterization, bloodwork and a cardio-pulmonary stress test.

“After all the tests were done they said, ‘You need a heart transplant,’” Bobby recalled.

Overwhelmed and overcome with emotions, Bobby and his mother drove back home to celebrate Christmas, New Year’s and his birthday with his son, who was now 3 years old. On Feb. 24, 2016, Bobby was admitted to UF Health Shands Hospital to wait for his heart.

“It was a mental battle,” Bobby said.

He would spend the next 14 months at the hospital under the care of Moguillansky on two potent IV medications given to temporarily improve cardiac function while waiting for a heart. While in the hospital, he would see his family every other week and the cardiology unit nursing staff became his extended family.

Donor hearts came and went, but none were the perfect match for Bobby.

Until one night in March.

“It was 1:30 a.m., and I was asleep. Jonathan, my nurse, said ‘Diego is on the phone,’” Bobby said.

Bobby, who had become close friends with Jonathan, thought it was a prank. But Jonathan urged Bobby to take the call – this was it.

“Diego said, ‘I think we have a heart for you. We have to make sure we have everything you need so don’t tell anyone yet,” Bobby said.

About 10 minutes later, Moguillansky rang again.

“He said, ‘It’s yours. Call everyone,’” Bobby said.

Bobby, alone at the hospital, called his mother. His father. His brother. His son’s mother. Then, he made if Facebook official.

“My phone wouldn’t stop going off as I was getting ready for surgery,” Bobby said.

As vials of blood were drawn for testing and Bobby was prepped for surgery, his mother turned her four-hour commute to Gainesville into a two-and-a-half hour drive. Just in the nick of time, Bobby’s mother arrived, exiting the elevator as her son was wheeled off to surgery.

Mark Bleiweis, M.D., director of the UF Health Congenital Heart Center and chief of congenital cardiothoracic surgery, and his team performed the eight-hour surgery on March 16, 2017, now affectionately known as Bobby’s “heartiversary,” a celebration of his transplant anniversary date.

Bobby recovered in the UF Health Congenital Heart Center’s intensive care unit for nearly 10 days and was under the care of Moguillansky shortly after surgery.

“Dr. Moguillansky has great bedside manner,” Bobby said. “He’s honest, and I value honesty over everything else.”

Bobby spent nearly three weeks in Unit 54 where they observed him for rejection, a complication that can arise because of a transplant. Before being discharged to go home, Bobby would need to stay one month in temporary housing nearby for additional observation.

On April 7, 2017, Bobby packed his bags and left around 9 p.m. to surprise Skyler, who thought was coming home the following day.

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#MadisonStrong

One glance at Madison Rhodes, 14, and no one would ever imagine the struggles she has endured.

Madison was born in Central Florida on May 25, 2005 with a single ventricle heart defect, with only one functioning ventricle to pump blood. She also had transposition of the great arteries, when the two arteries leaving the heart are reversed, and multiple heart valve complications.

a teen girl posing in a hospital room wearing every day clothes

At 6 days old, Madison underwent her first heart procedure. As with most single ventricle patients, Madison underwent her first open-heart surgery, known as the Glenn procedure, at 6 months, and underwent a second corrective procedure, known as the Fontan, at 4 years old. One week later, she experienced complications, and one week later, she had a pacemaker implanted.

Madison’s childhood was filled with a pacemaker battery replacement, heart catheterizations, overnight hospital stays and regimented medication schedules.
But, through her journey, Madison led an active lifestyle. She enjoyed being a part of her school’s cheer team in addition to acting at her local playhouse and biking.
“She just seemed like a normal child, full of energy, she was nonstop all the time,” said Cynthia Rhodes, Madison’s mother. “You would completely forget she had these complications.”

In January 2018, Madison had a fainting spell. After an exam, some changes were made to her current medication and an additional medication was added. The doctors determined that everything appeared OK and she was released. In July of that same year, Madison started showing more unusual symptoms, like taking frequent naps and retaining fluids.

“She would say that she just didn’t feel good,” Cynthia said.

Madison was admitted to a children’s hospital in Orlando on July 27, 2018. Doctors there recommended that she continue her care with the team at UF Health Shands Children’s Hospital. Madison’s physicians believed she was retaining fluid because her heart wasn’t working properly.

“They said, ‘This is pretty serious. It doesn’t look good,’” Cynthia recalled.

Madison was taken by ambulance to Gainesville, where it became apparent that Madison would need to be placed on the heart transplant list.

Upon arriving at UF Health, Madison was administered IV medications to help her heart function, and for a short time she seemed to improve. Then one night in September, her heart rate spiked unexpectedly. Nurses hit the code alarm and started administrating medication. A couple nights later, her heart rate spiked again, eventually slowing back down on its own.

UF Health physicians knew Madison’s time was limited. Her care team recommended placing her on a Berlin Heart®, a mechanical device that takes over the work of the heart. Although they had initially recommended that the procedure take place later in the week, doctors, including Mark Bleiweis, M.D., director of the UF Health Congenital Heart Center and chief of congenital cardiothoracic surgery, and Jay Fricker, M.D., pediatric cardiologist, advised moving her surgery sooner.

“When Dr. Bleiweis went in (to operate), her heart stopped,” Cynthia said.

Madison’s body was running on fumes.

On Sept. 4, 2018, physicians implanted a Berlin Heart® that would serve as her bridge to transplant.

“She could only unplug her unit from the wall for 30 minutes in the morning and in the evening to walk the unit,” Cynthia said. “On a couple of emotional nights when Madison just wanted to go home I explained to her that this is the way it was going to be until she received her new heart. It took about eight weeks until she wanted friends or family to visit.”

Madison would be tethered to the device from September until January. While she waited for her new heart, her care team focused on strengthening her body for transplant. She befriended the nurses, earning nicknames such as Slime Queen for her obsession with slime and Mad Dog Maddie for her wild attitude. Madison also enjoyed talking with other transplant patients about their experience.

On the afternoon of Jan. 23, 2019, Madison and her family received word of a donor match.

“We were shocked. We never imagined a transplant would be as soon as it was,” Cynthia said. “That evening Madison danced down the hallways.”

Family and friends from back home were called as Madison prepared for her new heart.

On the morning of Jan. 24, Madison’s care team was ready to operate.

“She didn’t want to be wheeled to the OR she wanted to walk in,” Cynthia recalled. “She walked to the OR while smiling and waving to the staff, family and friends on her way.”

Family anxiously waited at the hospital all day until Madison’s surgery was complete.

“She recovered great,” Cynthia said. “She shocked her team of doctors and nurses.”

Ten days later, Madison and her family moved into transplant housing. On March 22, 2019, Madison was released to go home. Her hometown decorated the streets and proclaimed #MadisonStrong for her arrival.

madison in a burgundy cheerleading uniform

Madison continues her regular visits to UF Health and even meets with some of the nursing staff for lunch.

In August, Madison started school at a freshman. She’s a member of the high school’s bowling team.

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Keeping Thea All Smiles

two parents holding and looking at a smiling baby
Althea “Thea” Brown is all smiles. And her spunky personality along with her curiosity for the world around her will undoubtedly bring a grin to your face. But it’s hard to fathom that during her short 18 months of life, Thea has undergone more tests, surgeries and procedures than any child her age should have to endure.

Maggie and Chad Brown, of Lakeland, were expecting their second child, Thea, when their obstetrician noticed something unusual with Thea’s heart. Ultimately, their daughter was diagnosed with hypoplastic left heart syndrome, a birth defect in which the left side of the heart does not form properly, which affects normal blood flow through the heart.

As Maggie’s delivery date approached, her high-risk obstetrician recommended that they change their plans and instead of delivering in Tampa, deliver at UF Health Shands Children’s Hospital in Gainesville.

“We quickly had an appointment at UF Health to meet with Dr. (Jennifer) Co-Vu (fetal cardiologist) and with Connie (Nixon, clinical coordinator), and found out about the program,” Maggie said. “That same day we toured the hospital, and had the pleasure of meeting Dr. (Mark) Bleiweis (cardiothoracic surgeon). He assured us they would do everything to make sure that Althea was OK.”

On April 17, 2018, Althea was welcomed into the world at UF Health and admitted to the Neonatal Intensive Care Unit. Then, she was moved to the Pediatric Cardiac Intensive Care Unit.

At 9 days old, Thea had her first open-heart surgery known as a Norwood procedure. Just before her 1-month birthday, Thea was released to go home and celebrate. While waiting for Thea’s second open-heart surgery, the family was sent home with an electronic home monitoring device to track weight, medicines, feedings, diaper changes and vitals that are sent immediately to Thea’s physicians.

“Interstage (time between the first and second surgery) is a very delicate time, so it is extremely helpful in monitoring to know if there are any red flags or if anything is wrong,” Maggie explained.

At UF Health, the interstage mortality rate for single ventricle heart patients, like Thea, has been maintained at 0%.

In September 2018, Thea and her family returned her second open-heart surgery.

“The staff, doctors and nurses did a great job of preparing us for the surgery and what to expect,” Maggie said. “Everyone truly cares and loves their patients. Staff is always willing to do whatever it takes and to put the patient first.”

Thea’s third and final open-heart surgery will take place once she’s 3 and a half.

“She will never be fixed or healed, but this allows her to have a chance to thrive and have a normal life,” Maggie said.

For children with Thea’s condition, sometimes a heart transplant is a necessity, but Maggie is hopeful that will not be the case.

“We came to UF Health to give Althea the best care she could receive,” Maggie said. “The staff and doctors are wonderful here, and we will continue to come back for her care for the rest of her life.”
a dad holding a happy baby in his arms

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Ethan’s Race Against the Clock

After a devastating hurricane season in 2018, Michelle Byron and her family were looking forward to being back in their home in Panama City just in time for Thanksgiving. While shopping for last-minute preparations at Target, Michelle received an unexpected call from her husband, Chuck. Their 16-year-old son, Ethan, had an emergency during a simple outpatient procedure in Tallahassee. As Ethan was being prepped for surgery, his heart rate spiked and plummeted.

“My husband called and said, ‘He’s going to be OK, but something is wrong with his heart,’” Michelle said.
profile view of a teen boy in a hospital gown in a hospital bed
Ethan’s care team recommended he be seen by Philip Chang, M.D., director of the pediatric and congenital heart electrophysiology program at the UF Health Congenital Heart Center. As Michelle sprinted out of Target to the parking lot, Ethan was flown by helicopter to UF Health Shands Children’s Hospital in Gainesville. Chuck was already on his way to the hospital.

“He (Chuck) said, ‘Be careful and get there as soon as you can,’” Michelle recalled. “I cried and prayed, and got myself together to drive to (UF Health) Shands.”

Michelle drove the long journey from the Panhandle to Gainesville, where she had volunteered at UF Health Shands Hospital’s pediatric unit 25 years prior.

For the next 36 hours, the pediatric cardiac critical care team and Chang at the UF Health Congenital Heart Center worked to find the most suitable medications to regulate Ethan’s heart rate. Doctors determined that Ethan had an unusual combination of permanent junctional reciprocating tachycardia, a form of supraventricular tachycardia, in addition to Wolff-Parkinson-White syndrome, an extra electrical pathway in the heart. Ethan’s family was informed that he was born with these and may have unknowingly experienced arrhythmias in the past. Looking back, Ethan recalls signs that he never associated with a heart condition, such as feeling his heart rate speed up excessively fast while running down a basketball court and remaining fast when he stopped.

“When I saw him lying there, it was tough,” Michelle said. “It was surreal that my own child was now here. It felt like I came back home in a way.”

For 10 days, Ethan received medication directly through his arm and neck to better reach his heart.

Dr. Chang recommended that Ethan have a cardiac ablation, a procedure to definitively treat his condition.

“I wasn’t going to stay on medicine for life if there was any chance they can cure me,” Ethan said.

After being released from the hospital, Ethan and his family traveled to Gainesville three times for ablation procedures. While SVT is typically successfully treated with a single ablation procedure, Ethan’s case was particularly challenging. After three ablation procedures, in April of 2019, Ethan was medicine-free.

The arrhythmias were gone.

“The team was phenomenal,” Michelle said. “Dr. Chang didn’t give up on him. He put in many, many hours of studying his case.”

“Dr. Chang’s really nice and helpful,” Ethan said. “He genuinely cared for me as an individual patient.”

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Caring for Those with Congenital Heart Disease

two hands making a heart shape around two baby feet
Congenital heart defects, better known as abnormalities of the heart, remain the most prevalent type of birth defect, affecting one in every 133 people. This year, the American Heart Association will recognize Congenital Heart Defect Awareness Week from Feb. 7-14 to advocate nationwide about the impact of these conditions on newborns, children, adolescents and adults alike.

“I think that a lot of doctors don’t even realize how common it is,” said Giles Peek, M.D., FRCS, C.Th., FFICM, a professor and cardiothoracic surgeon at the UF Health Congenital Heart Center. “They often don’t think that the heart is the source of the problem because they don’t associate heart issues with a baby.”

Congenital heart defects, or CHDs, vary in severity and present with different symptoms, including shortness of breath, blue-tinted skin and swollen body tissues or organs. These conditions can arise from complications with the walls of the heart, the valves of the heart or the arteries and veins near the heart, disrupting normal blood flow. With proper treatment through medication and surgery, children born with CHDs often live well into adulthood. In the United States alone, an estimated 1.4 million adults currently live with a congenital heart defect.

The UF Health Shands Children’s Hospital’s pediatric cardiology and heart surgery program is ranked No. 11 among the Top 50 programs in the nation by U.S. News & World Report, and consistently exceeds the national operative survival rate average. In addition to treating newborns, children and adolescents, health care providers with the program also see an average annually of 1,900-plus adult congenital heart patients, making the program’s team well-versed in all levels of care.

“It is a completely integrated program,” Peek said. “Everybody works on the same team rather than the situation in many other hospitals where cardiology, surgery, anesthesia and everyone else are in separate teams.”

This multidisciplinary approach allows the team, led by Mark Bleiweis, M.D., to remain ahead of the curve as the first in Florida to perform a pediatric heart transplant, infant heart transplant and Berlin Heart® implant. The program also performed a heart-lung transplant on the youngest infant in 2013, and has successfully separated conjoined twins who were connected at the heart, liver and sternum.

Despite its accomplishments, the program is always looking to grow. Surgical suites have been renovated to remain on the leading edge of technology and patient care. Physicians continue their research through basic and clinical trials, even establishing the UF Health Congenital Heart Center Journal Club, which meets monthly to discuss relevant literature on congenital heart defects and treatment.

Learn more about how you can get involved with Congenital Heart Defect Awareness Week at American Heart Association or UF Health Congenital Heart Center.

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From Cancer Patient to Survivor: Judy’s Journey

A group of five people posing with a large Christmas ornament that says Christmas at Gaylord Palms
In the mid-1990s, Judith “Judy” Hogan felt a lump on the back of her neck. Judy’s dermatologist at the time diagnosed her with basal cell carcinoma, a common form of skin cancer that can be caused by numerous factors, including smoking and sun exposure, and had it removed. More than 20 years later, Judy’s cancer returned with a vengeance.

The Deltona woman visited her dermatologist in July 2018 when her physician noticed some abnormal skin spots. Ten biopsies were taken from across the front of her neck, left cheek and nose, and, as suspected, they were deemed cancerous. Her dermatologist recommended scheduling a full body evaluation and discussing treatment options at UF Health Dermatology – Springhill in Gainesville.

In September 2018, Judy and her husband, Mark, traveled to Gainesville for the first of many procedures. Judy had a skin growth removed on the right side of her neck, but because of her daughter’s wedding in October, Judy asked to delay more extensive surgeries until after the big day.

On Dec. 13, Judy and Mark met with Mark Leyngold, M.D., cosmetic and reconstructive surgeon at UF Health, to coordinate a number of Mohs surgeries. Unlike more widely known cancer treatments like chemotherapy and radiation, Mohs surgery is a type of outpatient surgery where surgeons carefully remove layers of skin to reach cancerous cells while also leaving healthy tissue intact. On Jan. 15, 2019, Judy had her first Mohs operation performed on her left cheek.

Leyngold, an assistant professor of surgery in the UF College of Medicine, also recommended reconstructive surgery, a type of plastic surgery that is performed to restore normalcy to people who have been affected by a change in the body’s shape or appearance. The day after Judy’s Mohs surgery, Leyngold performed a skin generation procedure using a product made from a cow, compressing it and stitching it into the face. For nearly one month, Judy recovered back at home in bandages until her initial skin graft procedure. On Feb. 15, Judy and Mark drove back to Gainesville for the second part of her reconstructive surgery, which involved taking skin from her hip and applying it to her face.

“Dr. Leyngold was very professional and, if you asked a question, he would always answer you. (He would) make sure you understood what was going to happen,” Judy said.

After her recovery, on March 7, Judy had a six-hour Mohs procedure on her nose. Judy then was sent the day after surgery to see another facial plastic and reconstructive surgeon at UF Health, Timothy Lian, M.D., M.B.A., FACS.

Lian, a professor in the otolaryngology department in the UF College of Medicine, mapped out a plan to perform a paramedian forehead flap, a two-step reconstructive procedure that pulls skin down from the forehead and wraps it around the nose. Unlike Judy’s skin graft for her cheek, this procedure involved connecting blood supply from the forehead to the nose to help with skin and tissue regeneration, serving as a type of umbilical cord. On March 12, Lian performed Judy’s forehead flap, and, on April 16, Lian performed the final part of Judy’s reconstructive surgery by dividing the flap. After a final checkup, Lian recommended that she return to Leyngold for her lower eyelid surgery.

On July 10, nearly seven months after her initial diagnosis, Judy and Mark headed to Gainesville for another follow-up appointment, as well as a preoperative appointment in preparation for left lower eyelid surgery to treat another suspicious growth.

Along with the care Leyngold provided, Judy’s medical journey also included the oversight of plastic surgery physician assistants Dawn Daigen, PA-C; Anne Marie Staples, PA-C; and Jaime Rafanan, PA-C. All three helped with Judy’s pre- and postoperative care and worked closely together to provide Judy with the answers and clarity she needed for her multiple procedures.

“If you had an appointment and saw a physician assistant, if they felt like they needed to consult with Dr. Leyngold, he would be asked during that same time,” Judy said.

Judy crouching down on the ground posing with a flamingo Christmas decoration wearing a santa hat
Judy’s lower eyelid cancer was removed followed by reconstructive surgery. Leyngold performed a Hughes flap, a procedure where part of the upper eyelid is used to rebuild the lower eyelid. Additionally a skin graft was taken from her neck to provide extra skin resurfacing for the eyelid. The surgery was a success and Judy was cancer free. She had to have her eye covered for six weeks for the graft to heal properly. Thereafter, she had her second surgery to uncover her eye and finalize her reconstruction. At last, Judy could see with a normal and functioning eyelid.

Since then, Judy has had the left side of her nose reshaped and has also had an eyebrow lift, both performed by Leyngold. Her doctors in Deltona as well as in Gainesville continue to be astounded by her minimal scarring.

“I have a lot of healing to go and it will take a couple years, but overall only a little bit of scarring,” Judy said.

Sept. 25, 2019 marked Judy’s final reconstructive procedure — a momentous step for a cancer survivor. After countless bandages, multiple hotel stays and many miles driven, Judy and Mark now take life one day at a time.

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International Integrative Health Day

Hawiian woman sitting on the couch holding a cup of coffee and looking into the distance
It’s often difficult to widen your lens and focus on the big picture. This can also prove true in health care. While specialized care is necessary to treat complex conditions, the wholeness of the patient should be a priority as well. The team at UF Health Integrative Medicine aims to treat the whole person – mind, body, and spirit.

January 23 is International Integrative Health Day and we encourage you to take a moment to consider how you can incorporate self-care and holistic healing into your daily routine.

Here are some ideas to celebrate integrative health:
Invite a friend out to a healthy lunch – Be conscious of the menu and customize your normal selection or order a healthier option such as a salad or grilled chicken with steamed vegetables.

Reconnect with nature – Spending time outdoors is a great way to improve your mood and give yourself a much needed break. Go for a walk outside, explore a new trail or plan to do some gardening on the weekend.

Practice mindfulness – Find a quiet area and practice deep breathing techniques as you clear your mind. Take the opportunity to focus on letting go of attachments, criticism and anxious thoughts as you narrow in on being in the moment.

Take time to de-stress – Constant stress can have a negative impact on your overall health. Find what helps you relax whether it’s exercise, meditation, or listening to music. Cultivate positivity by writing a gratitude list. Listing the things that you are thankful for is shown to be a useful tool for reflection and stress management.

Educate yourself – Build on your knowledge of integrative health by reading an article, tuning into a podcast or scheduling an appointment with a physician board-certified in integrative medicine.

To learn more about integrative medicine and incorporating it into your health care, visit the Integrative Medicine website.

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UF Health ahead of the curve in perinatal safety standards

pregnant woman on laying hospital bed

Beginning in July 2020, The Joint Commission will implement two new standards to improve the quality and safety of perinatal care. The new standards being implemented require processes and procedures to be established for the care of women with maternal hemorrhage, severe hypertension and preeclampsia. Even though these requirements go into effect next year for all Joint Commission-accredited hospitals, UF Health has already begun implementing these procedures to ensure safe, high-quality patient care.

Sharon Byun, M.D., an associate professor and residency program director in the UF College of Medicine’s department of obstetrics and gynecology, is committed to adhering to regulatory standards and patient safety. She has served as the physician director of quality for the department for 10 years.

“We’ve been working on improvements regarding these measures for several years through ongoing, continuous quality improvement aimed at reducing the likelihood of patient harm due to these conditions,” Byun said.

With the support of leadership and the statewide affiliation with the Florida Perinatal Quality Collaborative, UF Health has seen a decline in maternal complications due to hemorrhage and hypertensive conditions. These perinatal safety measures include early recognition and treatment of these conditions, and patient and provider educational awareness.

The UF Health obstetrics and gynecology team has implemented initiatives that directly relate to the new standards that go into effect in 2020. These practices include prioritizing patient safety and education by performing obstetric hemorrhage risk assessments on admission, and providing educational materials about preeclampsia when discharging from triage, antepartum and the postpartum units. Additionally, labor and delivery and the postpartum units are equipped with hemorrhage carts to ensure quick emergency response if necessary.

The department also prioritizes staff education and training to ensure patient safety and quality care. This training includes obstetric emergency simulation drills and educational programs on the team’s procedures for cases of hemorrhage, preeclampsia and severe hypertension.

“Implementation of any initiative requires a comprehensive multidisciplinary approach, but the overall goal is to reduce complications and make obstetric care safer for all women,” Byun said.

More public attention is being called to safe maternal care, specifically reducing racial and socioeconomic disparities in maternal outcomes. About 700 women die each year as a result of pregnancy-related deaths, and the risk of mortality is three to four times higher for black women.

Allyson Felix, the most decorated U.S. Olympic track and field athlete, recently testified before the House of Representatives to shed light on these issues and her personal experience with preeclampsia. Serena Williams, world-renowned professional tennis player, also serves as a strong advocate for pregnancy-related medical issues after experiencing them herself.

“The care of women can’t be improved if we don’t have people talking about these issues,” Byun said. “Raising public awareness, improving access to safe care and educating patients on these risks are all imperative to providing safe health care for every woman.”

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Rylan’s Recovery

UF Health pediatric neurosurgery team saves Rylan from traumatic brain injury.

It was about 8 a.m. on March 20, 2019, when Rylan Lord took his family’s ATV out for a drive. He was riding at a leisurely pace on the dirt road of their 7-acre property in Dixie County, only about 50 yards from his house, when he overcorrected a turn. The vehicle suddenly flipped and landed on top of Rylan’s head.

Still conscious, the 14-year-old knew he needed to seek help quickly. Even though he was badly injured, Rylan managed to get out from underneath the machine. He knew something was wrong with his left eye because he was seeing double, but he closed it and walked to his house.

Ryan laying in a hospital bed with a large stapled incision on his head“The door slammed open, and I just knew something was wrong,” said Rylan’s mother, Erin. “When I saw him, his head was bleeding profusely. I immediately got him to the couch and put a towel over his head to apply pressure and try to stop the bleeding. It looked like he had lost his eye.”

Erin called 911 and then continued to ask her son questions to keep him awake.

“The ambulance got there in a matter of minutes, but it felt like forever,” Erin said.

Dixie County paramedics Alison Stevens and Roy Maggard called for a helicopter to take Rylan to UF Health Shands Children’s Hospital. The family lived about an hour and a half from UF Health, and Stevens and Maggard knew that Rylan did not have much time. The paramedics put Rylan in an induced coma, and UF Health ShandsCair airlifted him from Old Town to Gainesville. Erin and Rylan’s father, Jon, drove to the hospital even though they did not want to leave their son.

“I remember Alison telling me, ‘Trust me. I’ll treat him like he’s mine. Just go,’ and so we did,” Erin said.

When Rylan arrived in Gainesville, doctors told his parents he did not have much time because of the trauma his brain had suffered. He was rushed to surgery, where pediatric neurosurgeon Jason Blatt, M.D., operated to eliminate the bleeding occurring between the tough outer membrane covering the brain and the skull. This injury is referred to as an epidural hematoma.

The surgery was successful at stopping the bleeding and alleviating the pressure on Rylan’s brain, but now it was a waiting game. Rylan’s injury had led to multiple skull and facial fractures, four other smaller bleeds and bruises all around his brain. Doctors did not know what condition he would be in when he woke up or how his brain would function.

Three days after the surgery, Rylan emerged from the coma.

“The best possible scenario happened,” Erin said. “While he suffered loss of vision in his left eye, he was going to be OK. Dr. Blatt told us that everyone from the EMS providers to the physicians to the nurses did everything perfectly to save Rylan’s life.”

Rylan spent the next week in the intensive care unit at UF Health Shands Children’s Hospital and then was transferred to a regular room for a little over a week. After three weeks in the hospital, Rylan was cleared to return home and go to a rehab center. By the time he left the hospital, he was already having conversations with his family and care team and walking short distances with his therapists. However, he had mild residual weakness on his right side from the epidural hematoma, which was cured in rehab.

Rylan is getting better and stronger every day, but he still has more surgeries to go. In March, pediatric plastic surgeon Jessica Ching, M.D., will put a plate in his eye socket to correct his double vision, and after that, physicians will assess what needs to be done next.

Rylan and his family could not be more thankful for all of the providers, nurses and support staff who they have met along the way. Whenever they visit Blatt and the pediatric neurosurgery team, they are usually toting a large cake or other homemade treat as a token of their ongoing appreciation.

“We call Dr. Blatt ‘Uncle Jason.’ He’s part of our family now,” Erin said. “During this process, he has always put things in my terms. He has been like talking to my best friend. He always made me feel comfortable and made things relatable. He was a big part in saving my son’s life, and as far as I’m concerned, if he wants my right arm, he can have it.”

Rylan, now 15, said he is getting back to normal. While there are still some complications from the injury, he believes he is going to be OK, and he can deal with what he has to do.

“I wish I could describe (to everyone involved in my care) how thankful I am,” Rylan said. “They are all awesome and amazing.”

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Traveling for Kidney Care: Baylor’s Journey

Baylor Bennett was born with a blockage in his kidneys. His parents were told that he would grow out of it, and for six years, he had no symptoms. Then, one day in October 2018, Baylor doubled over in pain. He was taken to an emergency room in Mobile, Alabama, where an imaging scan showed his left kidney was inflamed from a blockage.

Baylor was treated by a general nephrologist at the hospital because there is no pediatric urologist in Mobile. After being discharged, his family took him to Pensacola, Florida to be seen by one.
Baylor and younger sibling posing for a photo

After imaging, it was determined Baylor would need surgery, which could be performed as an open procedure or robotically. Baylor’s parents wanted the surgery performed robotically so he would miss less time at school. Robotic surgery involves smaller incisions that lead to shorter hospital stays and quicker recovery times.

“Pediatric robotic urologic surgeons are not easy to find,” Baylor’s father, Todd Bennett, explained. “After doing our research, we knew we had three choices: New Orleans, Birmingham or Gainesville. Dr. Bayne at UF Health was the only one who offered to perform Baylor’s surgery robotically.”

Christopher Bayne, M.D., a pediatric robotic urologic surgeon and an assistant professor in the UF College of Medicine’s division of pediatric urology, explained that symptoms like Baylor’s can be difficult to correctly identify.

“Older children like Baylor tend to have an obstruction that comes and goes, and we do not know the cause of this,” he said. “Cyclical episodes of abdominal pain and vomiting can go a long time and not be worked up. Sometimes symptoms like these are chalked up to constipation. In Baylor’s case, the initial imaging showed the left kidney was enlarged/swollen.”

Bayne initially communicated with the family by telephone. Baylor and his family met Bayne for the first time the day before surgery, when he walked them through the surgical plan. He scheduled them for his last appointment of the day so they would have plenty of time to ask questions.

“One of my goals is to put them at ease and walk them through the surgery. I really wanted them to feel as comfortable and as relaxed as they could,’’ he said. “I get the anxiety of it. I wanted them to breathe a sigh of relief.”

On Dec. 21, Bayne performed a robot-assisted laparoscopic pyeloplasty, a surgical procedure that involves correcting the main drainage connection of the kidney.
During the surgery, Baylor’s parents received hourly updates from Bayne’s head nurse.

“I was incredibly impressed with the whole process,’’ said Todd. “The level of anxiety was very low. I felt comfortable with Dr. Bayne and his team from the get-go.”

When Baylor woke up from surgery, he asked for Gatorade and pizza.

baylor in a hospital gown tucked into a hospital bed while smiling and holding a thumbs up

“We were worried he was going to be in pain after surgery, but it was almost like he didn’t have surgery,” said Todd. “He never cried. He never took anything more than Tylenol. I can’t imagine it could have gone any better.”

Two days later, Baylor was on his way back to Mobile, just in time for Christmas. He was running around, playing on Christmas morning — and never missed a day of school.

“We will forever be grateful for your university and teaching center because he gets the chance to be a normal kid,” said Todd.

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Saving Lives in the Air

UF Health ShandsCair performs the program’s first in-flight prehospital blood transfusion.

UF Health ShandsCair helicopter in the air

After over a year of preparation, the UF Health ShandsCair team performed its first in-flight prehospital blood transfusion. Don Irving piloted the flight, where Staccie Allen D.N.P., APRN, EMT-P, CFRN, C.C.P., and Jesse Blaire, EMT-P, C.C.P., were able to give a patient one unit of blood to help stabilize the person’s blood pressure and heart rate before landing.

“You see the benefits of providing blood quickly in tons of military literature, and much of what we do is derived from that,” Allen said. “We realized how important access to blood is before getting to the hospital, and research shows how much of a difference it makes. It makes an incredible impact on patient outcome.”

In early 2018, chief flight nurse Todd Brooks, B.S.N., R.N., EMT-P, began advocating for carrying blood inflight. This practice had been discussed within the program before, but it required the involvement of and assistance from multiple teams within UF Health before implementation. This included obtaining a grant for a blood refrigerator through the UF Health Shands Hospital Auxiliary and establishing new protocols within the blood bank. Finally, everything fell into place.

“It was a strong step forward for UF Health to allow and support the initiative to carry blood in flight,” Brooks said.

UF Health is at the forefront of the movement locally, as the practice becomes more common on medical helicopters around the country. ShandsCair’s new service will benefit many types of patients, including those with low blood pressure and a high heart rate and/or suspicion of internal or external bleeding. Carrying blood gives the team a chance to provide a new level of care and buy patients more time before even arriving at the hospital.

ShandsCair team of four people standing in front of a ShandsCair helicopter

The ShandsCair 1 team now boards every flight with blood, plasma and medication to slow bleeding. The materials are stowed in a compact cooler kept in the blood refrigerator to monitor their temperatures and are easy to grab on the go.

“We want to have all five helicopters carrying blood and hope to treat medical patients in addition to trauma patients,” Brooks said.

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More than just an ordinary headache

How a Chiari malformation diagnosis was the key to ending Delvis’ pain.

Delvis posing for the photo with his hands up in the air

Delvis Mendez Jr., known to his family as Guizmo, was a typical active 6-year-old. He loved to play with friends, did well in school and even earned his yellow belt in taekwondo. But every now and then, his fun-loving spirit would come to a halt when a headache would arise. He would complain about being in excruciating pain, and then five minutes later would be running and jumping in the backyard. His mother, Doriley Fernandez, did not think much of these headaches because of how quickly they came and went. When Delvis lost his balance and fell during taekwondo and mentioned numbness in his fingers, however, she knew something was wrong.

She immediately rushed her son to a hospital emergency room near where the family lives in Dunnellon, Florida. Upon arrival, Delvis said his headache was gone, and he felt fine. She knew this time that it was not just any ordinary headache and begged the doctor to do a CT scan. Upon analyzing the results, they determined that Delvis had Type 1 Chiari malformation, a structural anomaly at the back of the brain and skull that can cause headaches. Typically, the headaches are at the back of the head or upper neck and are brought on or made worse by coughing or straining. Chiari can also cause swallowing problems, breathing pauses at night called central sleep apnea, numbness and tingling in the upper back and upper arms, spinal curvature or scoliosis, among other symptoms.

“For us, it was the beginning of a lot of reading and a lot of researching,” Doriley said. “We went to two other doctors first, but they didn’t convince us.”

Finally, the family was sent to UF Health Shands Children’s Hospital in Gainesville. Lance S. Governale, M.D., chief of pediatric neurosurgery at UF Health, met with the family and explained all their options. Governale discussed with the family every possibility for treatment that Delvis could undergo. Ultimately, they all agreed that the best chance to help Delvis was with Chiari decompression surgery.

“Dr. Governale treated him with such care,” Doriley said. “He should be the No. 1 surgeon for kids on the planet.”

The surgery was a complete success, and after only four days in the hospital, Delvis was able to go home free from pain.

Delvis returned to see Governale for follow-up appointments. He was Governale’s first patient at UF Health Pediatric Specialties – Oakhurst in Ocala, one of many remote locations that brings care to patients beyond Gainesville.

“We have been trying to offer more and more outreach services because it is ideal to be able to provide care for patients close to their homes,” Governale said. “In addition to Gainesville, UF Health pediatric neurosurgery sees patients in Ocala, Lake City, Tallahassee and Daytona.”

After the surgery, Delvis jumped back into his normal life, but this time he was headache-free. He caught right up with his classmates, returning to school less than a month after the surgery, and he graduated the third grade without any delays. Now, eight months after the surgery, Delvis is doing better than ever.

“Guizmo is free of headaches, free of pain,” Doriley said. “He’s growing into a young man now in less than a year.”

Doriley is thankful for the quick detection and care her son received at UF Health, and she wants to spread the word about Chiari malformation so other parents know that the condition exists. She does not want any other child to live in pain for as long as her son did.

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Living With Gastroparesis

When Melanie Dickens was 10 years old, she fell off a pair of stilts and injured her left leg. The injury triggered complex regional pain syndrome and led to complications by revealing underlying issues with her autonomic nervous system from her genetic mutations — which are still poorly understood.

When she was 11, Melanie started experiencing stomach pains and was having trouble keeping food and water down. Even pretzel sticks were out of the question.

A gastric emptying test revealed that Melanie had gastroparesis, a condition where the stomach’s ability to move and function is impaired, causing severe nausea, vomiting, bloating and intense pain. This condition is linked to her dysautonomia, in which the nerves that regulate her nonvoluntary body functions — such as heart rate, blood pressure and sweating — do not function properly. For six years, she relied on nasal feeding tubes.
Melanie’s condition is rare, and UF Health Shands Children’s Hospital is the only children’s hospital in Florida able to treat the combination of conditions that affect her.

At the hospital, chief of pediatric surgery Saleem Islam, M.D., M.P.H., implanted a gastric stimulator in her abdomen. With the help of nutritionist Daniel Stewart, R.D., and chief of pediatric gastroenterology Christopher Jolley, M.D., an associate professor in the UF College of Medicine’s division of pediatric gastroenterology, hepatology and nutrition, Islam decided that a permanent tube would be much more helpful for Melanie, especially when her condition flares.

Despite seeing more than 1,000 patients a year, Islam, a professor of surgery and pediatrics in the UF College of Medicine, develops bonds with all of his patients that go beyond just their diagnoses. He and Melanie now share inside jokes, and together they give her stuffed animals fake gastronomy tubes to match her own.

She continues to travel from Melbourne, Florida to see Islam for treatment about every five months, and, on a good day, consumes 500 calories by mouth.

“We have such a good relationship,” said Islam. “The fact that she still wants to travel this distance for care says a lot about her relationship with the institution, as well.”

Even though gastroparesis is currently incurable, Melanie has been able to live a more comfortable life with her condition. She credits much of this to her treatment at UF Health and the care of Islam.

“From the start, Dr. Islam was always joking around with me,” Melanie said. “One time I was just about to fade out before a procedure, and I had Winnie the Pooh stuff with me. He asked if I knew the theme song, and I apparently sang it through the entire procedure.”

Melanie routinely has to get her devices replaced, including her gastro-jejunal tube to help absorb nutrients and her tunneled central venous line to combat another condition she faces — postural orthostatic tachycardia syndrome — again related to the autonomic nervous system. 

Now 19 years old and in her second year at Eastern Florida State College, Melanie is managing her life around her situation. Despite undergoing many procedures, the longest she has had to spend in the hospital was a week and a half. Even during the hardest parts, she was still able to keep up with her classes online and even attend half-days in person.

She found music to be a great distraction and frequently attends concerts of her favorite bands — 5 Seconds of Summer, Night Ranger and Blue October. She also loves to draw and bake for her parents. She has even found a way to combine these two passions by painting onto sugar cookies using food dye and water.

“My experiences at UF Health have been amazing,” Melanie said. “Everyone I’ve encountered when I’ve had my procedures was so awesome and friendly.”

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UF Health Cancer Physician Talks Rare Form of Pancreatic Cancer

3D illustration of a pancreasPancreatic neuroendocrine tumors accompany a rare form of pancreatic cancer that account for only 1-2% of all pancreatic tumors. I usually tell my patients that this is the type of pancreatic cancer that Steve Jobs had, unlike the more common pancreatic adenocarcinoma, which is the type of pancreatic cancer that actor Patrick Swayze had.

Some pancreatic neuroendocrine tumors can produce excess hormones that can lead to high or low blood sugar, acid reflux and indigestion or diarrhea. However most pancreatic neuroendocrine tumors do not, and are known as "non-functional". Almost half of these tumors are found "incidentally," meaning the patient had no symptoms, but was undergoing treatment for another condition or issue when it was found.

Patients diagnosed with these tumors require specialized and individualized care, because not all pancreatic neuroendocrine tumors need treatment. Some patients may require surgery, while others may require hormone treatment with specialized medications, and the rest can be closely monitored.

In rare cases, a pancreatic neuroendocrine tumor may require chemotherapy. Treatment depends on a variety of factors including the extent of the tumor, the aggressiveness and the burden on the patient’s quality of life.

At the University of Florida Health Cancer Center, we have a team of physicians, including myself, who specialize in the care of these patients. We offer Dotatate PET scans, which are specialized imaging tests for pancreatic neuroendocrine tumors, as well as treatment for all forms and stages of this disease. We are even able to offer the latest therapy in neuroendocrine tumors, known as Lutathera, which delivers short waves of radiation specifically to neuroendocrine tumor cells.

At UF Health, we take pride in providing our patients individualized, high quality and up-to-date cancer care.

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The impact of pancreatic cancer on minority groups

Latinx person looking down as if they have received bad news
Pancreatic cancer will affect more than 56,000 adults in the United States this year. Of these individuals diagnosed, incidence rates are 25% for higher for black patients compared to others. On the other end of the spectrum, according to the National Cancer Database, the Latino population tends to have better outcomes than both black and white patients in regards to this disease.

Research has been done that normalizes socioeconomic factors, and the outcomes indicate that biological differences likely affect minority groups’ susceptibility to pancreatic cancer. This remains a significant disparity in pancreatic cancer patients, and UF Health physicians are committed to research that can lead to development in treatment options to help bridge this gap.

In 2018, the National Cancer Institute awarded a five-year, $16 million grant to the University of Florida to establish a cancer health equity center committed to cancer research focused on minority patients.

Jose Trevino, M.D., is an assistant professor in the UF College of Medicine’s department of surgery and leads research within the center. Through his work, he looks at differences in outcomes, genetics, muscle physiology, tumor biology and other translatable factors that affect an individual’s pancreatic cancer treatment to reduce disparities in the efficacy.

With pancreatic cancer treatment, the personalization of care is critical. With continued commitment to research focused complexities and factors regarding racial disparities, UF Health is taking steps to develop new ways to best battle this disease.

“Hopefully one day, we will look at ancestry as a marker for possible therapeutics, and we can use this data to determine different therapies,” Trevino said.

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The Importance of Genetic Testing for Pancreatic Cancer Patients

person in a lab working with genetic materialCancer is a genetic disease, whether hereditary or not. However, a recent discovery led to a national change in genetic testing guidelines specifically for pancreatic cancer patients.

“In 2018, genetic testing guidelines were updated to recommend that all patients with pancreatic cancer be offered genetic counseling and testing,” said Lisa Brown, MS, a certified genetic counselor at UF Health. “These changes were created by the American Society of Clinical Oncology and the National Comprehensive Cancer Network in response to multiple recent studies linking diagnosed pancreatic cancer patients with an increased risk of hereditary cancer, regardless of their family history.”

headshot of Lisa BrownUF Health provides genetic counseling through the Hereditary Cancer Program to help patients determine if they are at a greater risk for cancer development. Brown is trained to detect high-risk families, help them to understand their risk and make them aware of prevention, early detection and treatment options.

“Hereditary cancer is caused by inherited changes, known as mutations, in genes that significantly increase the risk to develop various types of cancer,” Brown said. “Understanding a patient’s genetic predispositions can help doctors choose the most effective and personalized methods to treat their cancer.”
While the guidelines for pancreatic cancer patients were just recently updated, the UF Health genetic counseling team has been providing cancer genetic services, including cancer risk assessment, genetic testing and personalized recommendations for cancer screening and risk reduction, since 2001.

“Although not everyone with hereditary cancer will develop cancer, both men and woman can still pass the gene mutation to their children,” Brown said. “Fortunately, there are medical management options to reduce the risk of cancer, which is why knowing about a mutation can be helpful.”

Learn more about our hereditary cancer program at UF Health on our website.

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Surgical Hope for Pancreatic Cancer

Doctor Steven Hughes in the operating room

The diagnosis of cancer can be tough to process. But when diagnosed with pancreatic cancer, a disease commonly known to have low survival rates, patients find it hard to hold on to hope. 

Steven Hughes, M.D., chief of the division of surgical oncology at University of Florida Health, provides innovative care for patients with pancreatic diseases.

“Perhaps the greatest challenge pancreatic cancer patients face today is the misconception that there is no hope after diagnosis,” Hughes said. “National statistics show that as many as 40% of patients with early pancreatic cancer that are candidates for surgery never even see a surgeon. We must alter this perception.”

UF Health consultations can provide hope and options for patients diagnosed with pancreatic cancer. Hughes emphasized that this is an important resource to acknowledge.

Patients with early pancreatic cancer could qualify for minimally invasive surgery, including the Whipple procedure, an operation that involves removing the head of the pancreas, the beginning of the small intestine, the gallbladder and the bile duct and reattaching the remaining organs to allow for normal digestion after surgery.

“One important point of this is that, in the right hands, surgery for pancreatic cancer has become very safe,” Hughes said. “In fact, most patients can qualify as candidates for minimally invasive (laparoscopic or robotic) surgical approaches, often referred to as key-hole or Band-Aid surgery.”

Hughes and his UF Health colleagues are highly experienced in Whipple procedures, performing a high volume of about 100 a year. To have the best outcome from this operation, the American Cancer Society recommends that patients seek a hospital that does at least 15 Whipple procedures per year.

“Individual expectations may vary, but the vast majority of patients can expect to return to a normal life within a month or two after these procedures,” he said.

The National Pancreas Foundation (NPF) recently named UF Health an NPF Center for excellence in pancreatic cancer treatment. The designation acknowledges high-quality approaches toward pancreatic cancer treatment.

“UF Health has a select team of surgeons devoted to pancreatic surgery, and our rates of use of robotic and/or laparoscopic approaches, outcomes and complication rates are among the best in the country,” Hughes said.

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Have Hope: Discover Treatment Options for Pancreatic Cancer

By Kacey Finch and Peyton Thomas

Pancreatic cancer affects more than 42,000 Americans each year and is the fourth leading cause of cancer-related death in United States. By 2030, it is expected to be the second leading cause of cancer death. This Pancreatic Cancer Awareness Month, patients should know of the treatments available at UF Health.

With several different approaches available, treatment of pancreatic cancer is determined by the type and stage, which is the process used by physicians to describe location, size and spread of the cancer. Treatment of pancreatic cancer in the current era is personalized and based on the individual patient and disease characteristics.

Care provider standing next to a patient bed with their hand on the patient's hands“At UF Health, our pancreatic cancer team remains committed to delivering high quality, personalized patient care, while serving as a source of hope for patients and their families,” said Thomas George, M.D., FACP, a clinical investigator at the UF Health Cancer Center. “Pancreatic cancer is a challenging disease, but our team consists of leaders in the field who are dedicated to developing new treatment options through clinical research.”

For patients with earlier stage pancreatic cancer, surgery is often one of the first steps, with the intention of curing the cancer. Around the time of surgery (before or after), additional therapy is offered, including chemotherapy with or without radiation therapy.

Chemotherapy medicines are drugs that travel through the blood stream with the intent to damage and kill cancer cells by stopping them from growing and dividing. Several chemotherapy combinations have been approved by the Food and Drug Administration (FDA) in the last several years for the treatment of resected pancreatic cancer.

Advanced stages of pancreatic cancer, which cannot be removed with surgery or has spread to other sites of body, are described as “locally advanced” or stage 4. Treatment is often intended toward control of disease. Chemotherapy does not cure metastatic pancreatic cancer, but it can relieve symptoms, slow the spread of the cancer and prolong life. Treatment options may include targeted therapy or immunotherapy.

National guidelines strongly recommend molecular profiling of the tumor and the patient to determine best personalized treatment options. The molecular profile helps determine the tumor biology, helping enhance the success of the treatment approach.

“To best treat each individual situation, UF Health performs genetic testing and a molecular profile on every patient,” George said. “This approach, in conjunction with weekly team meetings of all physicians involved in the patient’s care, allows our physicians to best target the patient’s cancer and evaluate which treatment options could be taken.”

The FDA has approved one targeted therapy drug for pancreatic cancer and immunotherapy for a small group of pancreatic cancer patients based on molecular profile and tumor biology. Several other targeted therapies and immunotherapies for pancreatic cancer are still being studied in the clinical trials and further information can be obtained from the UF Health Cancer Center or ClinicalTrials.gov.

“The ultimate goal is to create specialized therapy that allows the patient’s own immune system to identify and attack the cancer, a method that is successfully working with other cancers,” George said. “The research being conducted allows UF Health to create innovate strategies to continue the fight against pancreatic cancer.”

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Targeting Pancreatic Cancer with Radiotherapy

By K.E. Hitchcock, MD PhD for the UF Hope and Healing Blog

doctor Katheryn Hitchcock of Radiation Oncology talking with a patient

Survival rates in cancer worldwide have been improving for the last 40 years, but some types, like pancreatic cancer, lag stubbornly behind. More than 56,000 people in the United States will be diagnosed with pancreatic cancer this year (footnote 1), and scientists and doctors are looking to the most up-to-date technologies available to try to change their statistics.

Scientific studies over many years have looked at improving rates of successful surgical removal of cancers of the pancreas. One approach is to use radiation and chemotherapy before the operation to shrink the tumor and “clean up” stray cancer cells that have moved into the normal tissue around the main tumor mass (footnote 2). This is called neoadjuvant therapy, and is especially important when the tumor can’t be removed at the time of discovery because it is too entwined with vital parts of the body (footnote 3). Sometimes surgery cannot be done at all, and in that case radiation and chemotherapy become the main treatments.

Recent developments in radiation oncology have made radiotherapy for pancreatic cancer more effective and easier on the body. An improved technique called image-guided radiotherapy uses a low-dose CT scan at the time of each daily treatment to verify that the computer model of the patient’s body is perfectly aligned to her position. This ensures that the radiation beams will be delivered accurately, protecting the normal tissues from unnecessary damage. It’s especially important in the case of internal organs like the pancreas that can move quite a bit from day to day.

Radiation oncologists are using a newer technique called stereotactic body radiotherapy (SBRT) to treat some pancreatic cancers in just a few days rather than over the 5-6 weeks that traditional treatment requires. Because it is new, this approach does not have as much data to support it as long-term treatment, and not all patients are eligible, but early results have been promising and your radiation oncologist should be willing to at least discuss it with you (footnote 4).

proton therapy treatment

Another newer technique in pancreatic cancer treatment is proton radiotherapy. Although proton treatment has been used since the 1960s to cure cancer, only in recent years has this option become widely available. Proton therapy produces the same cure rates as traditional photon radiotherapy, but can sometimes deliver less radiation dose to the surrounding normal organs (footnote 5). This may mean a lower risk of side effects. Because we are still investigating the use of proton therapy in pancreatic cancer, insurance companies handle this type of treatment differently and it’s important to be in close communication with your agent if you seek this type of care.

If you are faced with a pancreatic cancer diagnosis, keep in mind that every cancer in every patient is different. Please hear what your doctors have to say when recommending the best approach for your specific situation. Because pancreatic cancer is not a common disease like breast cancer or prostate cancer, you are encouraged to seek treatment at a large university hospital or other research-based practice where the most recent developments in cancer testing and therapy are incorporated into everyday treatment.

Good cancer care need not be an unbearable burden to your family. You should feel comfortable asking up front about treatment costs and choosing among capable facilities based on their affordability. You are not alone in your journey through cancer. The UF team is here and ready to help.

1. American Cancer Society. Cancer Facts & Figures 2019. Atlanta: American Cancer Society; 2019.
2. Paniccia A, Hosokawa P, Henderson W, et al. Characteristics of 10-year survivors of pancreatic ductal adenocarcinoma. JAMA Surgery 2015;150:701-710.
3. Versteijne E, Vogel JA, Besselink MG, Busch ORC, Wilmink JW, Daams JG, van Eijck CHJ, Groot Koerkamp B, Rasch CRN, Van Tienhoven G. Meta‐analysis comparing upfront surgery with neoadjuvant treatment in patients with resectable or borderline resectable pancreatic cancer. British Journal of Surgery 2018, 105(8): 946-58.
4. Petrelli F, Comito T, Ghidini A, Torri V, Scorsetti M, Barni S. Stereotactic Body Radiation Therapy for Locally Advanced Pancreatic Cancer: A Systematic Review and Pooled Analysis of 19 Trials. IJROBP 2017 97(2): 313-22.
5. Verma V, Lin S, Simone CB, Mehta MP. Clinical outcomes ant toxicities of proton radiotherapy for gastrointestinal neoplasms: a systemic review. J Gastro Oncol 2016, 7(4): 644

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Keeping Your Health Information Private on Social Media

hand holding up an iphone with colorful light orbs across the photo
We strive to protect the privacy of our patients at UF Health. Your personal health information is for you to keep safe and we ask that you help guard others’ privacy when in the hospital. Members of our staff are trained on how to handle this sensitive information, but unfortunately, once it enters the world of social media, it’s no longer secure.

We have put together a list of tips to consider before sharing information on a social media site:

  • When taking photos while visiting our campuses, offices, and other facilities, be mindful of others who may be in the background
  • For your safety and privacy, avoid taking/posting photos on your own page, or UF Health pages, that contain medical information (ex., patient wrist band, computer monitors, whiteboards and/or financial information)
  • Please ask hospital team members for their permission before including them in photos
  • Remember the Internet is permanent – assume that once you post information it stays visible forever
  • Do not reveal your location within the hospital (ie., do not show room numbers or other identifying information)
  • Turn-off GPS capabilities on your smartphone before posting photos
  • Contact local authorities and/or the specific social media outlet if you feel you are being bullied or harassed on social media. Each social media platform has reporting mechanisms built-in for these situations.

Additional information regarding patient privacy at UF Health can be found in the Patient Guide.

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The Perfect Balance of Employment and Deployment

This Veterans Day, we honor not only our veterans, but also those who allow their military and civilian careers to develop together. The Employer Support of the Guard and Reserve sponsors a series of awards to commemorate these allies, including the Patriot Award. This recognition honors supervisors of employees serving in the National Guard or Reserve for their ongoing support during activations and training.

Left to right: Tim Lambert, ESGR Florida vice chair, Mark Thomas, ShandsCair operations manager, and Michael Johnson, ShandsCair ground medic.

Michael Johnson, a ground medic on the UF Health ShandsCair team, serves as a flight medic in C Co (AA) 1-111th REGT GSAB out of Jacksonville, Florida. He began working at ShandsCair about a year and a half ago, and was met by strong support for his military duties. Johnson nominated his supervisor, Mark Thomas, B.S.N., R.N., EMT-P, the UF Health ShandsCair operations manager, for the Patriot Award. Johnson said it was in appreciation for Thomas’ encouragement and for his acceptance of Johnson’s commitment to both roles.

“Mark Thomas has been consistently supportive of me as I fulfill my military obligations in the Army National Guard,” Johnson said. “There’s been a couple things that have popped up over the past year unexpectedly, and he’s the first boss I’ve had who right off the bat told me to go ahead and take care of it without any pushback.”

Whether it’s taking Johnson off the schedule when he receives last-minute orders or remaining in contact with Army leadership to get documentation squared away, Thomas continues to have Johnson’s back. He had no idea he was being nominated, and was completely blindsided when he learned he had won the award.

“I was very honored,” Thomas said. “I want to stress that this should be a unit citation because it’s not just me helping out. It’s all his co-workers and the team supporting him.”

The Employer Support of the Guard Reserve sent a representative, Tim Lambert, to present the award to Thomas in the form of a certificate and accompanying lapel pin. The presentation was held on Nov. 5, just in time for Veterans Day.

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UF Health Psychiatry’s journey to Trauma-Informed Care

Official proclamation from Florida governor Ron DeSantis
Personal trauma such as violence, abuse, neglect, loss and other emotionally harmful experiences can leave lasting scars — visible and otherwise — long after the events occur. Health care providers recognize this pain and seek to assist their patients and their families through trauma-Informed care, of TIC, which promotes a culture of safety, empowerment and healing.

In recognition of the importance of TIC for our community, Gov. Ron DeSantis recently proclaimed Nov. 1 as Florida Trauma-Informed Care Day.

At UF Health, providers have been ramping up their training and awareness of TIC through a number of activities. Over the past 18 months, leaders at the UF Health Shands Psychiatric Hospital and the UF department of psychiatry had been researching available resources, especially those offered through the Substance Abuse and Mental Health Services Administration, or SAMHSA, a branch of the US. Department of Health and Human Services.

Part of this education has included identifying and visiting peer institutions that are leading the way in TIC awareness. A team from UF Health recently visited one of these sites, The Ohio State University, and returned with a greater appreciation of the potentially positive outcomes of TIC in regards to quality of care, patient and staff satisfaction, and safety. The team members said the visit strengthened their resolve to implement TIC throughout UF Health.

The UF Health site visit team included Regina Bussing, M.D., a professor and chair of the UF College of Medicine’s department of psychiatry; Richard Holbert, M.D., a UF associate professor and medical director of the UF Health Shands Psychiatric Hospital; Joseph Thornton, M.D., a UF associate professor and chief of psychiatry at UF Health Shands Hospital, and Laura Rodriguez-Roman, M.D., an assistant professor in the UF College of Medicine’s department of psychiatry. Also on the team were leaders from the UF Health Shands Psychiatric Hospital, including Mitchell Hall, the assistant administrator, Ashley McReynolds, the acting director of nursing, and Eaton Fletcher, of the Employee Assistance Program.

In October, nearly 300 UF Health physicians, nursing leaders and UF Health Shands Psychiatric Hospital staff gathered for TIC training sessions led by internationally recognized TIC experts Brian Sims, M.D., and Raul Almazar, R.N., M.A. Sims and Almazar also visited the UF Health Shands Psychiatric Hospital, where they remarked on the large number of participating physicians and staff committed to TIC.

Leading up to the training events, targeted educational messages were provided to resident physicians, teaching faculty and staff through the office of Jacqueline Hobbs, M.D., Ph.D., an associate professor and vice chair for education and residency training at the UF College of Medicine. Similar preparations were offered at the UF Health Shands Psychiatric Hospital.

As a result of the training and other steps, UF Health will continue to implement TIC training elsewhere in the system, including for emergency room and security staff.

Devin Nori's picture

Combatting COPD

doctor holding up and looking at a chest x-ray
University of Florida Health researchers are on a mission to provide prevention education and effective treatment for chronic obstructive pulmonary disease, or COPD.

COPD is an umbrella term used to describe a group of lung diseases that often make breathing difficult. These diseases include emphysema and chronic bronchitis, characterized by lingering cough, chest tightness and wheezing.

Pichapong Tunsupon, M.D., an assistant professor within the UF College of Medicine’s division of pulmonary, critical care, and sleep medicine, has clinical and research interests in COPD and pulmonary rehabilitation. Through his education and fellowship training, he has become well-versed in the causes and treatments for COPD.

About 16 million Americans are diagnosed with COPD, and smoking has proved to be the most common cause of COPD that can be symptomatically treated to improve quality of life and exercise capacity. There is no curative therapy for COPD yet. This is why UF Health is working toward a cure through research and different treatment methods.

The team at UF Health treats patients from throughout Florida using a comprehensive program that employs innovative treatment methods to counteract the effects of COPD and to help patients regain their health. Patients undergo pulmonary function testing to screen for obstructive lung disease before proceeding with appropriate treatment. The team also checks for other comorbidities such as cardiac diseases, metabolic diseases and psychiatric problems to ensure that each patient’s conditions are addressed accordingly.

UF Health offers physical therapy programs, walking saturation tests to evaluate if a patient needs oxygen supplements, vaccinations and evaluations to determine if a patient will be a candidate for lung transplant. The team creates an effective treatment program for patients that goes beyond medication and takes lifestyle adjustments into consideration.

Patients who smoke can receive counseling to help them transition out of the habit. Since smoking is the leading cause of COPD, many patients struggle with this adjustment. This program works to help patients quit smoking for good and to move forward with their treatment in the best way possible.

In addition, UF Health also provides management plan resources and support groups for patients suffering from COPD. At these group meetings, patients and their families have the opportunity to learn more about their condition and how to maintain a healthy lifestyle to help lessen its effects.

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Bringing Halloween to the Hospital

Everybody knows about the people who treat kids’ illnesses, but what about those who keep their spirits up? Some of the patients at UF Health Shands Children’s Hospital can be admitted for weeks or months, sometimes even longer. That’s why UF Health’s Child Life Program is dedicated to making their stays as comfortable, fun and familiar as possible.

The Child Life Program not only helps children cope with hospitalization and procedures, but also helps provide activities and special events while they are hospitalized. One goal of the program is to normalize the hospital for patients, which can be done through organizing special events for the different seasons and holidays.
Child life staff member decorating a pumpkin with a pediatric patient

“The patients wake up and see their doctors and nurses, and the routine can get kind of boring surrounded by blank walls and their little televisions,” UF Health Child Life specialist Amanda McLeod said. “We have a calendar of activities to encourage kids to come to the group room. When we have special events to include in the mix, it’s pretty incredible!”

This Halloween season, the team planned events for nearly every day in October. One event, Pumpkins for Munchkins, has been held annually for more than five years. Dunkin’ Donuts sponsors the event, bringing doughnuts for the staff and families and plastic pumpkins for patients to decorate. On Halloween day, the team joins with UF Health Volunteer Services for a Pet Therapy Parade, in which pet therapists and their owners dress up in costumes to parade through the units.

To make sure everyone feels the holiday spirit, the pediatric units also have reverse trick-or-treating. For patients who might not be able to leave their rooms, Child Life specialists and volunteers bring goodies to them. Walmart, one of the Children’s Miracle Network’s major supporters, got involved by donating costumes so that all of the kids could dress up even if they couldn’t leave their room.

There are plenty of ways for the community to get involved, whether it is by planning special events with an organization, donating to the program or volunteering in the hospital. Special events typically run for about an hour, up to six people from the organization are invited to help facilitate. The Child Life Program accepts donations year-round and their wish list can be found on their website. Visit the Child Life Program website to learn more about ways to help.

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Peyton Thomas's picture

Grand Adventure: Tumor treatment ensures hike happens

In September 2018, David Walther traveled from The Florida Panhandle to Arizona for another shot at adventure. The 62-year-old high school economics teacher from Jay, Florida was looking to complete a rim-to-rim hike at the Grand Canyon in just a single day.

David had conquered the 21-mile hike four times before, and he had logged numerous hours of training in preparation for this latest trek. But this time, something wasn’t right. The day before the hike, David felt severe head pain. He had been experiencing bad headaches for the past few weeks, but this time, the pain was almost unbearable. man wearing hiking clothes holding up a thumbs up and smiling

He knew he needed medical care, and with the help of three fellow teachers he traveled with, David went to an urgent care facility in Page, Arizona. An initial diagnosis suggested cancer, and David immediately booked a flight back to Florida.

At a hospital in Pensacola, David underwent an MRI that confirmed he had a glioblastoma, a type of tumor that can occur in the brain or spinal cord. Headaches are one of the most common symptoms of a glioblastoma because as the tumor grows, it increases pressure on the skull and the brain.
David was advised to seek care at UF Health, so he and his wife made the five-hour drive to Gainesville. On Sept. 11, 2018, David underwent surgery performed by UF Health neurosurgeon, Maryam Rahman, M.D., an assistant professor in the UF College of Medicine’s department of neurosurgery.

Following the surgery, David immediately began six weeks of radiation and chemotherapy treatment. He said the positivity and care from radiation oncologist Robert J. Amdur, M.D., a radiation therapy professor in the UF College of Medicine, and his medical oncologist Ashley Ghiaseddin, M.D., made a world difference.

“I had such positive experiences at UF Health,” David said. “There are always a great group of people around who look after me tremendously.”
David quickly returned to work and finished out the school year in December, just under three months following his surgery. This August, the beloved Pace High School teacher entered his 41st year of teaching.

Determined to make that fifth hike, David created his own workout routine. He did a mix of activities, including running the bleachers, bike riding and lifting weights. Periodically, he returns to Gainesville for a medical appointment and when he does, he typically heads to Ben Hill Griffin Stadium for some exercise.

“I know I’m not back at 100%,” David said, “but I’m pretty close. It’s been an emotional time for me to be surrounded by loved ones as I try to redeem myself and complete what I had hoped to do last year.” And this past September, David returned to Arizona for some unfinished business. Accompanied by his wife, two daughters, granddaughters, and former students – and with the assistance of UF Health helping his every step – David completed hike No. 5 through the Grand Canyon.

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Peyton Thomas's picture

Myths and Facts Surrounding Sepsis

Sepsis, the body’s reaction to an infection, can lead to tissue damage, organ failure and even death. In light of September being Sepsis Awareness Month, we’ve broken down the basics and cleared up some misconceptions surrounding sepsis.

microscopic view of sepsis

1. Sepsis causes more deaths than prostate cancer, breast cancer and AIDS combined.
FACT. Sepsis is more common than most people realize. Over 1.5 million Americans are diagnosed with sepsis each year and nearly 250,000 die from it. Sepsis creates a chain reaction throughout the body and, without timely treatment, can have lasting effects on the individual.

2. Sepsis only affects patients in hospitals.
MYTH. Sepsis can develop in any person with an infection, meaning many people may already be in a hospital. However, sepsis is a common reason why people seek care in an emergency room, even if they didn’t realize they had an infection. Anybody with an infection can be a victim of sepsis, regardless of whether they’re being treated for the infection already.

3. The symptoms of sepsis are very similar to those of other conditions.
FACT. Symptoms of sepsis include fever, weakness, shortness of breath, disorientation and clammy skin. These symptoms tend to go hand-in-hand with numerous other conditions as well, making it very difficult to diagnose sepsis early. Many times, patients will assume the onset of these symptoms are completely unrelated to infection. However, patients with unexplained fevers, malaise and confusion, especially in the setting of a new suspected or diagnosed infection, should seek care immediately.

4. Sepsis is rare and only affects people who already have a preexisting condition.
MYTH. While infants, the elderly, and those with weakened immune systems are most susceptible to sepsis, it can affect anyone. Anyone with an infection, from an inflamed paper cut to pneumonia, is potentially at risk. This is why it is so important to understand sepsis for all that it is, and to recognize the signs early on.

5. If detected and treated early, those who overcome it can go on to live healthy lives.
FACT. Although sepsis is a serious illness, people are often able to lead happy and healthy lives after receiving proper and timely care. Treatment may include antibiotics, IV fluids to maintain blood pressure and prevent significant organ damage, and monitoring in the intensive care unit. Some patients may require an operation or procedure to control the infection. The body and mind need time to recover as they would after any sickness, but after the initial healing period, people can maintain a healthy life.

Sepsis is known as the “silent killer,” and for a good reason. With such low awareness surrounding sepsis, it’s no wonder people don’t recognize it in their own bodies. This Sepsis Awareness Month, start the conversation about sepsis and spread the word. Learn more about sepsis from UF Health.

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Veteran Advocates ‘Take Care of Yourself’

After 20 years in the military and 18 years in the United Nations, including four peacekeeping missions, retired Army veteran Chris Maxfield faced yet another life-threatening battle, this one back home.

Upon retirement, Chris and his wife settled in Florida. As part of his annual exam with Carolyn Stalvey, M.D., associate professor of internal medicine in the UF College of Medicine, she administered a PSA test and blood workups. Due to a bad urinary tract infection years ago, the 65-year-old had compiled a 10-year history of stable PSA scores in his medical record.

patient and his wife in formal wear posing in front of a gold backdrop

Stalvey noticed his numbers were a little higher than past years. While still low, they were within range to warrant a referral to UF Health Urology. In his initial appointment, Chris was seen by Michael Dennis, M.D., a clinical assistant professor of urology in the UF College of Medicine.

“He said we could do another PSA test in three months, do a specialized urine test or a biopsy,” Chris said, “and I chose the urine test.”

When the results came back, they indicated a high probability of prostate cancer, which was confirmed by a subsequent biopsy.

“I was about to leave for a trip to New York, so I took my biopsy results with me to show my previous urologist for a second opinion,” Chris said. “He said I should look into robotic surgery and wrote to his New York colleagues to see who in Florida to recommend.”

His colleagues’ responses brought up Li-Ming Su, M.D., a UF Health Urology robotic surgeon. Upon returning to Florida, Chris met with Su, a professor in the UF College of Medicine, about having robotic surgery to remove the cancer. Su explained the options of surgery or radiation, as well as the risks and benefits.

“All cancers have to be viewed in a personalized matter and Chris’ was the type of cancer that has choices,” Su said. “It is important to treat the cancer but also give a realistic view of what life is like after treatment.”

“Everything clicked just right to get Dr. Su,” Chris said. “He knew we wanted to take care of this quickly and called me days later saying they had an opening the following week.”

Chris’ cancer was caught early on and contained within the prostate. Su performed a robotic-assisted laparoscopic prostatectomy to remove it.

“This whole experience was high-quality, highly professional and highly competent on all sides. It was like a well-oiled machine with an abundance of personal human touch,” Chris recounted. “At all times, I was informed and felt like I was part of the medical team instead of just the person who was being operated on.”

For the Army veteran, the experience taught a valuable lesson in being proactive when facing a more invisible enemy.

“My takeaway is not about me. It is about ‘taking care of yourself.’ If you feel like something is not right, follow it. Don’t leave it until it’s too late.”

The American Urological Association guidelines for prostate cancer screening suggest that patients between the ages of 55-69 undergo a PSA blood test and prostate examination every one to two years. Men with increased risk of prostate cancer, e.g., African American race and men with first-degree male relatives with a history of prostate cancer, should begin screening at an earlier age.

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Devin Nori's picture

Ahoy, Scurvy Awareness!

Multicolored citrus slices laid invitingly on a wooden cutting board

Today is Talk like a Pirate Day, which is a great opportunity to shed some light on scurvy - a disease that is often associated with those who sail the seven seas.

There is a common misconception that scurvy disappeared around the time that plundering villages became socially unacceptable. In reality, scurvy remains a global health issue.

Scurvy is caused by a vitamin C deficiency. While most people have daily access to fresh foods and produce containing vitamin C, this is not the case for everyone. People in developing countries and those living in poverty in developed countries can have a hard time finding natural sources of vitamin C.

Those at higher risk for scurvy include those with eating disorders or mental illnesses, alcoholics and the elderly, when exposed to prolonged dietary deficiencies. Smokers can also fall into this category, as smoking affects the way the body absorbs vitamin C.

The severity of scurvy isn’t the issue, it’s the lack of education surrounding the disease. Most people don’t know the symptoms to look for in themselves or loved ones.

While scurvy is easily treatable, it can be difficult to diagnose. The symptoms of scurvy – including fatigue, loss of appetite and muscle pain – are vague and can be associated with many other conditions. Many times, a doctor will go through several other diagnostics before testing the patient’s vitamin C level.

Treatment of scurvy includes vitamin C supplementation and lifestyle changes to incorporate more vitamins into the patient’s daily consumption. Some symptoms, like fatigue, can go away within the first day or so, but others can last longer.

We’re going to need all hands on deck in spreading awareness, so grab some citrus or walk the plank!
You can learn more about scurvy and other conditions like it from the UF Division of Infectious Diseases & Global Medicine.

Devin Nori's picture

A Rockstar Recovery

From a young age, Dylan Lambert felt different. He was originally from Montreal, Canada and grew up in a small town in rural Georgia. His opportunities seemed few and far between, and the future looked bleak. With little to do, he began to drink.

At first, he drank to ease his anxiety and help him sleep. After a while, though, Dylan decided that it was more fun to drink than to go to school. It got to the point that he found himself drinking during every part of his day. dylan lambert playing a guitar on a couch sitting next to a dog

“I was just so profoundly sad all the time. I felt like I had the life falling out of me slowly since the day I was born,” Dylan said. “There was no potential for love left in me, and I was doomed pretty much from the start.”

As his drinking continued, Dylan found himself slowly becoming a worse friend to the people he cared about most. Things became all about him, and he lost regard for anyone or anything else. He realized he had hit his breaking point when he got involved with his best friend’s girlfriend. He checked himself in for treatment a week later.

When Dylan first arrived at UF Health Florida Recovery Center, he was scared. He didn’t know what to expect and felt that he had lost most control over his life. He became confrontational, and it took a lot of adjustment. Upon leaving, he relapsed and was found with alcohol poisoning by a savior he refers to as K. This led to his second attempt at recovery at FRC.

“By the time I made it back, I didn’t care what happened to me,” Dylan said. “I didn’t care if I lived or died or ended up in jail or homeless.”

The start of Dylan’s second stay at FRC wasn’t easy, but he eventually gave into the routine that was presented to him and found a reason to live again. He was given a guitar, and the instrument helped shape much of his recovery process. He found comfort in the values of the treatment, which promoted vigorous honesty and gratitude. He felt he was receiving overwhelming love and support.

“I’m very cynical, but I think the recovery community goes beyond cynicism. Everyone wants you to get well and is willing to open their arms to you,” Dylan said. “I don’t think I’d be alive right now without FRC.”

Upon completing treatment, Dylan, now 24, started living his best life. He moved to Nashville, where he interns at Blackbird Studios, a recording company that has worked with performers including Carrie Underwood, Lynyrd Skynyrd and Queen. He has a girlfriend, and, inspired by his favorite bands – LCD Soundsystem and Sonic Youth – he plays rock ‘n’ roll regularly.

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Mikah’s Story

Living a normal life with a rare form of glioblastoma

One day in January 2018, Mikah Phillips came home from school with a headache. After it persisted, his mom, Debbie, took the 9-year-old to a pediatrician. Eventually, they went to a pediatric emergency room in Panama City, Florida, where doctors thought Mikah may have a sinus headache, possibly the flu.

A computerized tomography, or CT scan, revealed a parent’s worst nightmare for Debbie and Justin Phillips. Mikah had a brain tumor that was 6 centimeters in diameter, about the size of an egg. He was rushed to a children’s hospital in Pensacola, where he had surgery to remove the mass. pediatric patient wearing glasses smiling standing on stairs

The mass was biopsied and on Feb. 8, Mikah’s physicians told his parents that he had glioblastoma multiforme, the most aggressive form of brain cancer in children and adults. The physicians referred the family to Sridharan Gururangan, FRCP (Edin.), the director of pediatric neuro-oncology at UF Health Shands Children’s Hospital in Gainesville. Debbie and Justin brought Mikah to meet Gururangan to talk through the diagnosis and decide on the next steps for treatment.

Scans from Mikah’s next follow-up appointment brought more bad news. Just four weeks after the surgery, there was a rapid recurrence of the original tumor — the mass had grown back in the same site, and it was its original size.

Gururangan had a plan. Mikah had a second surgery in March 2018, performed by UF Health pediatric neurosurgeon Jason Blatt, M.D., who successfully removed the entire tumor. Despite this aggressive surgery, Blatt made sure to keep Mikah from having any neurologic deficit by using a sophisticated surgical guidance computer to avoid damaging sensitive brain regions, thereby protecting his speech and motor functions.

Further examination confirmed that Mikah’s tumor was a rare form of glioblastoma that carried numerous mutations due to a condition called microsatellite instability, which causes the tumor to be genetically very unstable.

Research has shown this type of glioblastoma responds to a form of immunotherapy using an antibody (given through the vein) that inhibits “brakes” on the lymphocytes, which are preventing these immune cells from responding to his tumor. Once the antibody turns off the brakes, Mikah’s lymphocytes could rapidly multiply in his blood and mount an immune response in his tumor that could kill any remaining tumor cells after surgery.

This antibody, called Nivolumab, has shown dramatic responses and prolongation of life in adult patients with skin and lung cancers but is not approved by the Food and Drug Administration for use in children with brain tumors. However, Gururangan was able to obtain this commercially available but expensive antibody without cost for Mikah using a patient-specific compassionate use protocol under FDA guidelines. Since starting Nivolumab, Mikah’s tumor has shown no signs of regrowth for more than a year and has helped him avoid radiation, which is the usual treatment for this tumor. Although this treatment approach has had a positive effect on Mikah’s tumor, it is unclear how it will work in other children with his disease.

“Dr. G (Gururangan) is a wonderful man and has done so much for Mikah,” said Debbie. “He keeps our spirits lifted and is gentle when he needs to deliver bad results. He explains everything to Mikah in a way he can understand that doesn’t seem scary.”

Mikah with the game ball, his doctor and a referee in The Swamp

Every two weeks, Mikah receives infusions at the Pediatric Infusion Center & Specialties Clinic at UF Health Shands Children’s Hospital. In addition, he has an MRI done every three months to see if the tumor has grown back.

“We can’t say enough about the nurses in the infusion center,” said Debbie. “My son loves them and always give them big smiles.”

Traveling for Mikah and his family from Panama City to Gainesville became the norm for more than 16 months. They would leave at 6:30 a.m. and get to UF Health by noon, and then leave to drive home around 4 in the afternoon. The back-and-forth from Panama City to Gainesville would have continued as long as Mikah is able to tolerate this treatment. (The Pediatric Neuro-Oncology Family Support Fund helps families such as Mikah’s with financial assistance for travel and other needs, enabling them come to UF Health for treatment regularly).

“It had gotten difficult to travel so much, so our goal was to move to Gainesville, which we were excited to be able to do in July,” said Debbie. “No more long drives for us.”

Debbie explains that through all of the treatment, Mikah tries to be a normal kid. Now 10 years old, Mikah loves riding his bike and going to water parks.

“You wouldn’t know he’s sick,” said Debbie. “We try to keep his life normal, and Dr. G and UF Health have made that possible.”

After Mikah has taken the drug for two years, Gururangan will reevaluate his prognosis and, with the family involved, decide what course his treatment plan will take next.

“We take it day by day,” said Debbie.

Gururangan is cautiously optimistic about Mikah’s prognosis and is very gratified that he has been able to control the tumor growth with Nivolumab without having to use chemotherapy or radiation.

Gururangan credits the team approach at UF Health for being able to provide positive outcomes in children like Mikah with serious life-threatening illnesses.

UF Health is now extending its “team” approach far beyond Gainesville, leading a new, multi-institutional research collaborative called the ReMission Alliance Against Brain Tumors. In February, UF Health hosted the first ReMission Summit in Orlando, Florida, uniting more than 100 experts in neuro-oncology, tumor immunology, genetics, artificial intelligence, neuroimaging and bioinformatics to form an elite research community focused on achieving transformative outcomes for patients with brain tumors over the next decade.

“I am grateful to the scientists who work to discover potential treatments like this one as a form of immunotherapy,” Gururangan said. “I work closely with other immunotherapy experts at UF and beyond to devise novel approaches to treat children with brain tumors like Mikah’s using different forms of immunotherapy, including the one that has been so far successful in Mikah.”

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When Seconds Count: Identifying and treating sepsis

If you’ve heard the word sepsis and have ignored it — or don’t know what it is or why it matters — you are not alone. Nearly half of Americans have never heard of the condition and more than a third cannot identify all of the symptoms.

In a nutshell, sepsis is the body's faulty, drastic reaction to an infection. This often leads to tissue damage, organ failure, and even death. It is most dangerous in young children and the elderly as well as those with a weakened immune system or chronic illness.

“Sepsis is now the most expensive in-hospital condition in America. In fact, it is responsible for more deaths in America than AIDS, prostate cancer and breast cancer combined,” said Philip Efron, M.D., co-director of Laboratory of Inflammation Biology and Surgical Science and part of the UF Sepsis and Critical Illness Research Center.

Unfortunately, there are over one million cases of sepsis each year in the U.S. and it is the nation’s third leading killer with more than 258,000 deaths annually (more than AIDS, prostate cancer and breast cancer combined.)

The Centers for Disease Control and Prevention (CDC) considers sepsis a medical emergency, similar to a stroke or heart attack. Time is the enemy for patients with sepsis as their bodies are mounting a massive, life-threatening response to infection that can destroy tissue and damage organs in a matter of minutes. With sepsis, seconds count!

What can you to do help prevent sepsis?

“Get all recommended vaccines. Make sure to practice good hygiene practices with cuts and wounds to prevent infection. These can help reduce your risk of sepsis. Also, if there is an infection, stay alert to possible sepsis symptoms (such as chills, fever, rapid heart beat or breathing) and get immediate medical treatment. Catching sepsis early can reduce lifelong complications and be lifesaving,” Dr. Efron said.

Additionally, education of the signs and symptoms, which include fever, chills, rapid breathing and heart rate, rash, confusion and disorientation, can save a life. Ask, “Could it be sepsis?” and get immediate medical attention if you suspect sepsis is present.

Be aware that the elderly (≥65 years old), premature infants or children less than 1 year old, patients with weakened immune systems and chronic, serious illnesses are the most at risk for sepsis, including intensive care unit (ICU) patients after surgery or trauma.

Physicians, nurses and all staff at UF Health have new tools and procedures to identify sepsis and respond quickly with treatment. We have a review committee who analyzes sepsis cases to improve care and scientists at the UF Sepsis and Critical Illness Research Center are working to prevent sepsis, minimize its damage and improve long-term survival.

In fact, UF Health is at the forefront at implementing all the recommendations of the CDC, which include:

• Preventing infections
• Educating patients and families
• Acting fast, and
• Reassess patient management

With education, awareness and patient monitoring, we can stop sepsis in its tracks.

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Casey Jackson's picture

When battling sarcoma, is proton therapy a secret weapon?

Sometimes called the “forgotten cancer,” sarcoma only makes up approximately 1% of cancer diagnoses in adults — but about 15% of cancers in those under the age of 20, according to the National Foundation for Cancer Research. It forms in the body’s connective tissues that support, protect and give structure to other tissues and organs in the body such as bone, cartilage, fat, blood and lymphatic tissue. While there are more than 70 kinds of sarcomas, they can generally be categorized into two main groups: bone and soft tissue.

Many sarcoma patients require high doses of radiation as part of their curative treatment, and sarcoma can be an ideal candidate for proton therapy. This is a special type of radiotherapy used for cancer treatment that can spare normal tissue in the body from receiving radiation, resulting in fewer and less severe short and long-term side effects than standard radiation therapy, according to the National Association for Proton Therapy

patient ringing chimes after completing proton therapy treatment

“The thing about radiation is that it is a nonspecific treatment, so it damages normal tissue just like it damages cancer cells,” said Nancy Mendenhall, M.D., FASTRO, medical director of the UF Health Proton Therapy Institute in Jacksonville. “Proton therapy has a better dose distribution so there is less opportunity for injury.”

Proton therapy uses high-energy protons rather than X-rays to destroy cancer cells. A machine is used to speed up the protons and painlessly deliver them through the skin and into the tumor.

Additionally, high doses of traditional radiation, or X-rays, in some cases can lead to the development of a different type of cancer in the treated area. Proton therapy can reduce that risk by directly targeting only the areas of the body that are affected by cancer. For example, when a sarcoma is located in the abdomen, proton therapy may be used to save kidneys from the effects of radiation.

Proton therapy also has other advantages for treating sarcoma, especially when the cancer is located on or close to bones. For example, radiation and surgery can increase the risk of a bone fracture, while proton therapy reduces the amount of radiation to bone and helps reduce the possibility of a fracture. According to the National Association for Proton Therapy, multiple studies have shown that patients receiving proton therapy also have better survival rates when compared to other radiation treatment.

The optimal management for complex sarcoma requires multimodality therapy, often including combinations of surgery, radiotherapy and chemotherapy, said Michael Rutenberg M.D., Ph.D., an assistant professor radiation oncology at the UF College of Medicine – Jacksonville and a UF Health Proton Therapy Institute physician.

“Proton radiation technology provides a very valuable tool to help deliver the best cancer outcomes possible, while reducing the risks of radiotherapy-related side effects,” said Rutenberg. “The UF Health Proton Therapy Institute has the broadest range of proton therapy delivery techniques of any other center in the U.S. or abroad.

“However, the value of the technology is also determined by the clinical experience and expertise in treating this rare malignancy,’’ he said. “UF has one of the most active proton programs for adult and pediatric bone and soft tissue sarcoma in the world.”

The UF Health Proton Therapy Institute was the fourth proton center in the United States. Since opening in 2006, the institute has treated more than 8,000 patients from 33 countries. Annually, the institute treats an average of 100 pediatric and adult sarcoma patients using proton therapy.

Much of the data describing the role of proton therapy in both children and adult sarcoma has come from the UF Health Proton Therapy Institute, said Rutenberg. Clinical research from the institute has contributed to the acceptance and growing demand in the United States and the world for proton radiotherapy.

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Back on the saddle

In the face of adversity, Lisa Alexander got back on the horse — literally.

woman smiling with four horses

Lisa has made horses an integral part of her life since her 30s. Once a competitor in upper-level dressage, a highly skilled form of horseback riding, Lisa lives on a property in northwest Ocala where she cares for 12 equines. But Lisa’s passion for riding and nurturing horses came to a sudden halt three years ago when she was diagnosed with breast cancer.

At first, Lisa said she was intimidated by the diagnosis and at the thought of losing the body she once knew and relied on to ride horses.

“It’s your whole body, your muscles, your center of gravity,” Lisa said.

Lisa selected a full mastectomy of her right breast because of the nature of her cancer. Fortunately, because of her surgery, Lisa did not require additional treatment, such as chemotherapy or radiation.

After a six-month healing process, Lisa was ready to look at her options for breast reconstruction.

“I thought, ‘What are my choices to reclaim my body, one I can live with and live my life with?’” Lisa said.

When searching for a hospital to have her reconstruction done, Lisa, who is originally from a metropolitan area with an academic medical center, had a bias for teaching hospitals.

“We have this amazing resource in North Central Florida where you have people who are so skilled that they teach medicine and the teaching experience itself is multiplied through practice,” Lisa said. “Instead of a doctor (practicing medicine) alone, it’s a doctor with an audience. Being open about that process is of such value. You can’t get that elsewhere.”

Lisa sought out the UF Health Plastic Surgery and Aesthetics Center, where she met Bruce Mast, M.D., chief of plastic and reconstructive surgery at UF Health and the Maurice J. Jurkiewicz Professor of Reconstructive Plastic Surgery at the UF College of Medicine. “It was a very thoughtful process and Dr. Mast was very understanding that I wanted my body back,” Lisa said. “I was very afraid of losing my physical abilities with reconstructive surgery. I wanted to lift a saddle onto my horse.”

Lisa elected to have a breast implant, the least impactful surgical option. “Life went on (after reconstruction), but I realized that the implant was not the best choice,” Lisa said.

At Lisa’s one-year reconstructive appointment, Mast examined her progress and began asking her questions. Mast noticed that the implant had become surrounded by thick scar tissue, which resulted in discomfort and limited Lisa’s movement due to tightness.

Mast offered Lisa a more invasive surgical option, known as a flap procedure that would release the scar tissue and add more tissue to better shape the breast. The procedure involved moving muscle, tissue and skin from a person’s back, while the tissue kept its own blood supply, to release the scar tissue, shape the breast and use a smaller implant. The flap procedures are more complicated because they work with live tissue and blood supply.
“It took bravery on my part,” Lisa said. “But I’ve thought about that moment a lot and how it could have played out anywhere else.”

Lisa believes that the value of a teaching hospital and academic medical center is the availability of many techniques and the open mindedness to apply the right treatment to each patient.

After Lisa’s flap reconstructive surgery, the six-week healing process included weekly follow-up visits and phone conversations with the physician assistants, or PAs, at the UF Health Plastic Surgery and Aesthetics Center. Since the flap procedure included incisions on the back and front of Lisa’s body, she was connected to drains that would be checked frequently, in addition to checking for how the muscle was holding the new implant in the correct place.

“The PAs are some of the most skilled women that I have ever met,” Lisa said. “They know what they’re doing, they know his (Dr. Mast’s) work, they know the procedure and they know the healing process.”

During her procedures, Lisa’s husband, Gordy, would bring the equines — donkeys, miniature ponies and horses alike — into their stalls for Lisa to meet and hug without risking injury. Now, Lisa is back to caretaking for them.

“There’s something about how you get accustomed to being in your own body and then something changes profoundly,” Lisa said. “I adjusted but you don’t understand all the compromises that go with that until someone removes it. I want my body to take me places and allow me experiences for as long as I possibly can. This has been a gift. I have a whole new threshold of wholeness now to work from.”

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Clearing Up Everything Cleft and Craniofacial

Craniofacial deformities include birth defects in the face or head. Many people know about cleft lips and cleft palates, but that tends to be where their knowledge on the topic ends. In light of July being Cleft and Craniofacial Awareness Month, it’s time to clear up some misconceptions and promote a greater understanding of the condition.

baby with cleft lip sleeping

Myth: Craniofacial abnormalities have cognitive impacts on the individual.

False!

These deformities purely affect the face and head, and have no effect on the brain. People with craniofacial deformities do not have any kind of mental disability as a result and do not have altered personalities or intellectual capabilities.

Myth: Craniofacial deformities are a result of the parent doing something wrong during the pregnancy.

False!

While the direct cause is unknown, research indicates that the condition comes from a combination of genetic and environmental factors. Parents often think they did something wrong and the deformity is their fault, but isolated cleft lip or palate is nobody’s fault. Cleft palate and/or lip occurs for a variety of reasons and is among the most common birth defects, according to Centers for Disease Control and Prevention.

Did you know?
Cleft lip is more common in boys than in girls, but isolated cleft palate is more common in girls.

Myth: Craniofacial deformities require emergency surgery.

False!

In some cases, surgeons will wait at least a year to operate on infants with craniofacial deformities to let the child grow and develop healthily. While there are certain cases that require quicker surgery, these instances are very care and occur with conditions like Pierre Robin sequence, where the child’s airways are obstructed.

Myth: Oral clefts are the only type of craniofacial deformity.

False!

While the most common, cleft palate and/or lip are not the only type of craniofacial deformity. Other common forms of craniofacial deformities include craniosynostosis, hemifacial macrosomia and Goldenhar syndrome. Some of these deformities stem from a specific genetic mutation unique to the patient, making their care more specialized.

To learn more about craniofacial deformities or seek treatment, visit the UF Health Craniofacial Center. Our team of specialists have been seeing patients for over 40 years and are equipped to handle a multitude of conditions and provide resources on education, financial assistance and support organizations for patients and their families.

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Seizing the Day: Brooklynn’s Escape From Epilepsy

Robyn Nelson called louder and louder for her 4-year-old daughter, who was somehow drifting away despite lying right by her mother’s side.

“Mommy, where are you? I don’t see you,” said Brooklynn Nelson, who repeated the same response after her mom assured her she was right in front of her face.

During this time, Brooklynn’s eyes deviated to the left. She was having a seizure, her first of many in what has become an arduous battle with epilepsy.

“She became unresponsive, foaming at the mouth,” Robyn said. “People have in their mind an idea of a seizure. She didn’t have those classic indicators, like the rigid body, shaking. She didn’t have those things that you imagine when you think of somebody having a seizure.”

On that Fourth of July night in 2006, EMS swiftly took Brooklynn, who was unresponsive the entire ride, to UF Health Shands Hospital. She was given sedatives to undergo a spinal tap, or lumbar puncture, eventually regaining consciousness to reunite with her shaken mom.

“That was one of the most terrifying experiences of my entire life,” Robyn said. “It was completely debilitating, and I was racked with fear after that.”

The long, hard road

New cases of epilepsy are common among young children. However, while some are triggered by a medical condition or injury that affects the brain, Brooklynn’s epilepsy was de novo, likely from a subtle focal brain malformation.

At UF Health Pediatric Neurology, she was investigated on the epilepsy monitoring unit and followed for several years while being treated with medication. Still, she was having breakthrough seizures, or those that suddenly occur despite consistent medical treatment.

The condition had Brooklynn watching life pass her by, stealing her happiness and freedom.

“Whenever I was having seizures, I had adults hovering over me watching my every move,” Brooklynn said. “Because they’re like, ‘Oh, you’re going to seize. You can’t do anything by yourself.’”
Brooklynn spent several years suffering from idiopathic epilepsy, a type that doesn’t have a known cause.

Although physicians at that time discussed Brooklynn’s case at a conference and indicated she might be a potential candidate for surgery, Robyn simply wasn’t ready to allow her daughter, who was 6 years old, to have brain surgery before exploring other options first.

There was a possibility of her incurring brain damage. There was even a risk to Brooklynn’s life.

“You just don’t know what can happen. It’s the brain. It’s super unpredictable,” Robyn said. “I mean, you take out a kidney, you still got one, things are functioning. You take out a gallbladder and things still function. Some people live with a lung. The brain? It’s different.”

When Brooklynn was around 13 years old, the family transferred her to another hospital within the state of Florida to get more answers. She had countless MRIs, CT scans, PET scans, EEGs. After trying different medications, they found a regimen that was helping.

However, there was a problem. It was causing significant weight gain.

“I mean we’re talking she went from probably 115 to 180 pounds over the course of a year with no real change in her diet or activity,” Robyn said. “She was an active cheerleader, so we knew it was medication-related. We decided to stop taking that medication.”

Brooklynn withdrew from that medication for about four months. In February of 2018, she had a seizure after being seizure-free for about 15 months.

It was like, ‘What do we do now?’ That was when we sought care with Dr. [Giridhar] Kalamangalam.”

Getting to the bottom of Brooklynn’s seizures

Dr. Kalamangalam, her neurologist, brought Brooklynn into the UF Health Neuromedicine Hospital’s epilepsy monitoring unit in March of 2018, taking her off all medications.

The hope was to invoke her seizures, the very thing that horrified Robyn when she first saw it happen 13 years ago after a peaceful family barbecue on Independence Day.

Brooklynn ended up having 16 seizures detected on her EEG in one 24-hour span while in the monitoring unit.

“You feel helpless. You feel helpless, and there’s nothing you can do to make it better,” Robyn said. “It’s kind of one of those feelings where my hands are tied behind my back and I see my child drowning, and there’s nothing I can do about it.”

However, unlike the very first seizure that made Robyn feel powerless, these episodes brought hope, and they were key to Brooklynn’s recovery.

From left to right: Elizabeth Nelson, sister; Robyn Nelson, mother; Brooklynn; Matthew Nelson, father; Matthew Nelson Jr., brother.

Parents in Robyn’s position dread the sight of their child having a seizure and normally take every measure to prevent them, but it’s quite the opposite when you’ve got experts in the room who need to see it happen.

“That was a lot for her to have, but it helped us to know, ‘OK, this is the region of the brain that this is coming from,” Robyn explained. “Externally, we can track that, but now we have to figure out where to go from here.”

To bring about these seizures in Brooklynn, physicians had to try multiple triggers, the main one being sleep deprivation. There were times when Brooklynn was awake for more than 24 hours, stimulating herself by watching movies, playing games or painting her nails.

“You pray for them to come,” Robyn said.

Based off the information they captured from that prolonged Video-EEG, study, Dr. Kalamangalam expressed his belief that Brooklynn would benefit greatly from surgery. Still, there were several steps they’d need to take first.

No matter how long the process, Brooklynn was never alone.

“My mom was so supportive,” Brooklynn said. “She was there for every hospital stay. We just have a really close relationship. She’s my best friend.”

Mapping it out

At one point last year, Brooklynn — having exhausted six or seven medications — was experiencing seizures that had become more frequent and more severe. They were coming in the form of grand mal seizures, the kind that cause loss of consciousness and violent muscle contractions. These led Brooklynn to fall and injure herself several times.

Those incidents clarified Brooklynn’s path to surgery. She had to be informed of her options, have neuropsychological testing, a PET scan, an MRI and blood work.

Robyn was overwhelmed when her daughter got past one final hurdle.

“I’ll never forget where I was the day that I got the call that she was cleared to move on to the next step, which was the SEEG (stereoelectroencephalography),” Robyn said. “I remember crying tears of fear and excitement that day.”

The SEEG, performed in August of last year, was the first of two invasive surgeries Brooklynn would have. The SEEG was done to further pinpoint where the seizures were originating from. Depth electrodes were inserted into different regions of her brain, including the temporal lobe, frontal lobe and insula.

Left: As part of her evaluation, depth electrodes were placed in various parts of Brooklynn’s brain. Right: The SEEG pinpointed the seizure focus that led to the temporal lobe being removed to cure her epilepsy.

Brooklynn, treated in the neurointensive care unit, had eight seizures. Her neurosurgeon, Dr. Steven Roper, and his team obtained a clear map of Brooklynn’s brain and discovered the seizures were originating from the right hippocampus. Meanwhile, they knew exactly what needed to be removed to give Brooklynn the best chance for fewer seizures and a better quality of life.

“After being in the hospital for nine days, Dr. Roper told us that they had all the information they needed,” Robyn said.

Brooklynn’s successful temporal lobe resection removed the part of the brain where her seizures originated from.

Even after 13 years of exhausting every other option, and Brooklynn’s temporal lobe resection already scheduled, Robyn struggled with the enormous risk the operation carried. She went to therapy and hoped a sign from a higher power would indicate she was doing what was best for her daughter.

Robyn got that sign the same day Brooklynn was slated to have her surgery last October.

“That morning she woke up and she had two seizures right back to back,” Robyn said. “It was just kind of that clarity came over me. This is why we made this decision. This is God’s way of saying, ‘You have to do this. This is the right thing.’”

Long journey leads to new travels

For nearly her entire life, Brooklynn wondered whether she’d ever enjoy full independence, like the freedom to not need someone in the pool with her at all times, or to have her friends on standby for emergency treatment during a sleepover.

“I felt like all of my friends or the people at my high school, they were just living their life normally,” Brooklynn said. “And I felt like I was being held back and put in this little box. I wasn’t able to grow up, because I had to be watched all the time, and that really hurt me. I feel like I didn’t have the same chances as them.”

Brooklynn is already far removed from that feeling. In fact, she says she can’t even remember what it feels like to have a seizure since her last episode was so long ago.

Brooklynn has been seizure-free since her temporal lobe resection in October. April 10 was a big day for her, marking exactly six months since that surgery, opening the doors (literally) to the ultimate symbol of freedom for any 17-year-old.

Brooklynn is seen with Dr. Giridhar Kalamangalam nearly five months after her temporal lobe resection. She has now been seizure-free for almost nine months.

Six months without a seizure meant Brooklynn was eligible to get a driver’s license in the state of Florida. Recently, Robyn was at the DMV, jumping at the opportunity to prepare everything for Brooklynn. She surprised her daughter with a car shortly after.

“Oh my gosh. I was so excited,” Brooklynn said. “I always thought that I was never going to drive, so it was the realization that it’s all happening. I got a car, and I’m about to get my learner’s permit. It’s just fantastic.”

This challenging experience has inspired Brooklynn, a hopeful PA or nurse practitioner, to make a difference in other people’s lives.

She was accepted into the UF Student Science Training Program, or SSTP, a seven-week program that runs from June 9 to July 27. It consists of laboratory research, a science lecture series and a UF Honors Program seminar class. The emphasis of the program is research participation with a UF faculty research scientist and his or her research team.

Brooklynn was thrilled to be accepted as she works toward her main goal of attending UF.

“Because I’ve had so many medical issues in my life, I can relate to the patients better than someone who didn’t go through all this stuff,” Brooklynn said.

Brooklynn was accepted into the UF Student Science Training Program, or SSTP, and is an aspiring PA or nurse practitioner.

Brooklynn is still overcoming medical issues related to her epilepsy. She underwent two surgeries in April, one to have a stent placed in her ureter due to kidney stones that developed from one of her anti-seizure medications. Not long after, she went in to have the stents changed and have the kidney stones blasted and broken apart.

And Brooklynn will stay on anti-seizure medication for at least two more years. After that, they can decide whether to take her off it.

For now, Robyn is appreciating the new route they’re on, which is far removed from the one she braved with Brooklynn.

“Right now, we’re just taking it day by day,” Robyn said. “She’s a great kid, and she’s super easy-going, and all the stuff she’s been through, you would never know it.”

Michael Ward's picture

Scoliosis: A Medical Spotlight

June is Scoliosis Awareness Month and we caught up with Laurel Blakemore, M.D., the Division Chief of Pediatric Orthopaedics at UF Health, who specializes in scoliosis surgery and spinal deformities. See what she has to say on the topic in the Q and A below:

photo of doctor blakemore

What is scoliosis?

Scoliosis is a sideways curvature of the spine that occurs most often in children and just before puberty.

What causes scoliosis and who can be affected?

The causes are mostly unknown, but the disorder is hereditary and runs in families. There are several different types, which can affect children of all ages as young as newborns. Some cause no problems while others, especially in young children, can become life-threatening.

Your focus is pediatric orthopaedics so what are some early signs and symptoms parents can be aware of in their children? Potential treatment options?

Signs of scoliosis may include uneven shoulders or waistline, a bump on the back or occasionally back discomfort.

Treatment of children is very different, especially in young children whose bodies need to keep getting taller. Braces or casts are used whenever possible to avoid surgery, and surgery is often geared towards preserving spine growth.

What are some of the unique benefits to choosing UF Health for treatment of scoliosis and related conditions?

Scoliosis in children is best treated by a doctor with special training in pediatric orthopaedic surgery. UF Health has fellowship-trained specialists in pediatric spine deformity. They use non-surgical and surgical strategies to offer individualized care for children with these conditions.

Do you have any additional resources for parents/individuals who may have further questions?

Blakemore, along with Stephanie Ihnow, M.D., are fellowship-trained and Board Certified Pediatric Orthopaedic surgeons, both showing clinical interests in scoliosis.

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Pilot training program aims to improve oncologists' LGBTQ+ literacy

We live in a time of expanding recognition and social acceptance of the spectrum of human sexuality and gender identities. However, even with all this societal change, why do members of the LGBTQ+ community still face significant health disparities when it comes to cancer treatment?

rainbow flag waving in the wind

According to the American Cancer Society, people in the LGBTQ+ community face certain health disparities, which are often rooted in barriers to care and lack of comfort in health care settings. Low rates of health insurance (as many health insurance policies do not cover unmarried partners), fear of discrimination and negative experiences with heath care providers deters some LGBTQ+ patients from seeking medical care and routine screenings.

When combined with an increased prevalence for certain risk factors, such as drug and alcohol use, LGBT+ populations also have potentially greater risks for several types of cancer. For example:

• Gay and bisexual men are at a greatly increased risk of human papillomavirus (HPV)-associated anal cancer.
• Gay and bisexual women have an increased risk of breast cancer linked to high rates of smoking, obesity, and alcohol use. Women who haven’t had children and haven’t breast-fed, and are older when they first give birth — all factors more likely to affect gay and bisexual women – are also at a slightly higher risk of breast cancer.
• Transgender women on hormone therapy have increased odds of breast cancer, but the overall risk is not as high as it is for the general female population.
• Gay and bisexual men are the population most affected by HIV. Some evidence suggests that men with HIV, especially those with AIDS, are at greater risk of testicular cancers.

A recent study that surveyed nearly 200 oncologists’ attitudes and practice behaviors regarding LGBTQ+ health found that while many oncologists said they were willing to treat and be listed as an LGBTQ+ -friendly provider, many of them weren’t necessarily proficient in inclusive treatment. For example, only 26 percent of oncologists surveyed said they ask for a patient’s sexual orientation and only 46 percent thought that knowing the sexual orientation of their patient was important.

So while most oncologists tend to have positive feelings toward those in the LGBTQ+ community, many of them aren’t necessarily educated on how to properly make LGBTQ+ people feel welcome and comfortable in a medical setting. This can deter members of the LGBTQ+ community from seeking proper help.

These treatment disparities and lack of knowledge within the oncology community inspired investigators from the UF Health Cancer Center, the Sylvester Comprehensive Cancer Center in Miami, and the H. Lee Moffitt Cancer Center & Research Institute in Tampa to create a pilot program to train oncologists on how to approach treatment for those who are LGBTQ+ . The course, called Curriculum for Oncologists on LGBT populations to Optimize Relevance and Skills, or COLORS, is an online LGBTQ+ cultural competency training for oncologists.

“Working with my collaborators from Sylvester and Moffitt on this educational module was a wonderful experience,” said Merry-Jennifer Markham, M.D., FACP, associate director for medical affairs at the UF Health Cancer Center. “The entire team was focused on creating a training program that underscored the importance of treating members of the LGBTQ+ community with sensitivity, respect and with understanding of their unique concerns. This was important to all of us because, ultimately, helping all of our patients to receive excellent care is the goal.”

The COLORS program is a web-based resource consisting of four 30-minute modules, making the program easy and quick for busy oncologists. The modules include:

1. LGBTQ+ Basics
2. Inclusive environments
3. Initiating oncology care with LGBTQ+ patients
4. Issues in cancer survivorship among LGBTQ+ patients

“We hope that the COLORS training module can eventually be provided to oncologists nationwide,” said Markham. “Providing additional training to oncologists or other cancer care providers on the unique needs of the LGBTQ+ population is an important step in helping to minimize health disparities in cancer care.”

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Kashton’s Story

Kashton in a wagon.When a fall left Kashton with severe burns, UF Health pediatric surgeons provided the specialized care he needed to get back on his feet.

It was a typical Saturday morning in August for the Hill family. They were in the backyard of their home, enjoying the outdoors and relaxing as they took in the peacefulness that helped them unwind from the workweek.

Josef and CeAnn Hill sat and watched Kashton, their 1-year-old fun-loving, rambunctious little boy, play and laugh as he bounced around the yard. The toddler found a stick and wandered near the family’s fire pit, where days earlier, Josef had burned some brush. They didn’t know it at the time, but somehow some simmering embers remained buried deep beneath the ashes.

When Kashton, known to his family as Kash, lost his balance, the laughter immediately turned to cries of pain as he slipped into the fire pit. CeAnn was less than a foot away from Kash and pulled him out within seconds, but the damage was done. The boy had burns running down his legs, ankles and feet.

Josef and CeAnn rushed him to the closest E.R. After tending to the wounds, the staff at the Williston facility told the Hills to take Kash to the UF Health Shands Children’s Hospital, which has a dedicated pediatric burn unit.

“When we got to UF Health, Kash and I were both screaming and crying for help,” said CeAnn. “The staff at the hospital jumped in quickly and wheeled us to the PICU (pediatric intensive care unit), so Kash could get the attention he needed.”

That was just the beginning of a more than six-week hospital stay for Kash. From the PICU, he was moved to a room on the fourth floor of the children’s hospital for continued monitoring and care. Every day, he had to be put under anesthesia so that his wounds could be evaluated and treated. In addition, he had three surgeries to debride the wounds, meaning damaged tissues were removed to promote healing. He also had skin grafts to transplant healthy skin.

UF Health pediatric surgeon Shawn Larson, M.D., who is the medical director for UF Health’s Pediatric Burn & Trauma Program, along with Lauren Indelicato, D.N.P, APRN, were involved in all of Kash’s surgical care.

“They are absolutely amazing,” CeAnn said. “Dr. Larson explained everything to us upfront and was super real. He made us feel confident that Kash would have a successful outcome. Lauren made us feel comfortable from Day 1.”

During his stay at UF Health, Kash hated to be in his room, so the Hills got to know the nursing staff on the floor pretty well.

“He loved riding around in the red wagons provided by the hospital, so we would take him around for walks all day long,” said CeAnn.

Despite his scars, Kash is doing amazingly well, his mother said. He is scheduled to have laser surgery at UF Health at the end of May to help loosen up the scars. In the next few years, Kash will likely need additional surgeries to loosen up the scars even more and to help his toes, which as a byproduct of the burns, do not touch the ground.

CeAnn said her son’s ordeal has not hindered him.

“Kashton is now 2 years old and loves to be active,” she said. “Running around and playing is actually really good physical therapy for him.’’

She said her family is very thankful for the care Kash has received at UF Health.

“We highly recommend UF Health and can’t say enough about the care we received,’’ CeAnn said. “We never had one bad experience. From the doctors to the nurses, physical therapists, financial advisers and receptionists, every single person made us feel at home. They became our family.”

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What is Migraine Surgery?

In the U.S. alone, 38 million people are affected by migraines and 1 billion people are affected worldwide. Many suffer from recurring migraines despite all of their efforts to make them stop. However, migraine surgery can be an option to stop symptoms or to reduce the pain.

Surgery may sound scary, but this procedure offers an opportunity for a better quality of life.

woman sitting at a computer holding her head as if she has a headache

Why surgery for migraines?

Migraines have been linked to the compression and irritation of major nerves in the face and head. Migraine surgery is a procedure that decompresses those sensory nerves around the skull, which are the most likely source of migraines. This procedure takes about one to five hours depending on the number of trigger sites one has. Harvey Chim, M.D., FACS, associate professor of surgery at the UF College of Medicine, says it helps patients with chronic intractable migraines by providing a permanent solution for pain after other medical options have been tried. According to the Migraine Relief Center, surgically relieving the pressure on those nerves can reduce the frequency, severity and duration of your headaches or even eliminate them altogether.

How does it work?

There are four main trigger sites where patients often experience pain when they have a migraine. This is how migraine surgery can provide pain relief to the following sites:

1. Forehead – You may feel pain around the eyebrows. The main muscles involved in frowning compress nerves. Surgery at this site includes removal of the muscles with an incision at the hairline or through the upper eyelid.

2. Temples – Sometimes the pain is located on either of the temples. Surgery removes the nerves that provide sensations to the temples.

3. Nasal – A deviated septum and enlarged turbinates, which are structures on the side wall of the inside of the nose, can cause pain behind the eyes, giving rise to a migraine. For relief, surgery straightens the septum and decreases the size of the turbinates.

4. Back of the head – Pain at the back of the neck is caused by the compression of the greater occipital nerve. A small incision in the midline of the neck and a nerve decompression provides relief.

What are the results?

According to a recent study published in Plastic and Reconstructive Surgery, 88 percent of patients who underwent surgical deactivation of targeted trigger sites reported at least a 50 percent reduction in the frequency, severity and duration of their migraine headaches five years later. Thirty-one percent of participants confirmed complete elimination of migraines.

“Patients are very happy after surgery because they have been living with pain for years,” says Chim, who specializes in migraine surgery. “Now, they do not have to deal with the uncertainty of when they will get a migraine headache that might ruin their day.”

Even though most procedures have favorable outcomes, every case and history of the patient is different. If you are considering migraine surgery, make sure to consult with a physician first to see if this procedure is right for you. For more information on migraine surgery at UF Health, visit www.plastics.ufhealth.org/migraine-surgery.

Call 352.265.8402 or contact us today to schedule a consultation.

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Living seizure-free – How epilepsy surgery changed Starr’s life.

couple posing in matching red formal outfits to attend senior prom
At just 19 years old, Starrlynn Gamble has dealt with more dangerous surgeries and life-threatening conditions than many older than her could claim, starting the day she was born.

Starrlynn, known as Starr by her family, was born with a congenital heart condition called transposition of the great arteries, which required corrective open heart surgery.

At nearly 3 months old, Starr underwent the procedure at a North Carolina hospital, but she suffered a massive stroke during the operation that left her with epilepsy, developmental delays and physical impairments, including partial paralysis of her right side.

The ensuing years were filled with physical and occupational therapy. Starr wore braces on both legs to help her walk, then was able to remove the left brace as she grew stronger. Although she had limited use of her right arm, Botox injections helped to increase her arm’s mobility.

Yet, while her physical abilities were improving, epilepsy continued to wreak havoc on Starr’s life as her seizures would occur without warning. Despite taking numerous anti-seizure drugs, Starr was having up to eight severe seizures every month.

“She had some really, really bad ones,” said Starr’s mom, Brenda. “We never knew when they were going to happen, and a few times she fell and cracked her head open.”

This continued until nine months ago, when Jason Blatt, M.D., a pediatric neurosurgeon who leads the UF Health pediatric epilepsy surgery program, and Parrish Winesett, M.D., a UF Health pediatric neurologist, suggested Starr receive surgical treatment.

“I was very wary of them cutting my daughter’s head open and going into her brain, but I talked to Starr about it and she told me, ‘If it would help my seizures, why can’t we try?’ and I finally agreed,” Brenda said.

“When Starr and her parents came to meet me, they expressed fear that she would be unable to care for herself and would continue having disabling seizures after her parents passed,” Blatt said. “We had a long talk about her future, and that if they wanted her to have a shot at independent living, I felt that surgery would give her the greatest chance of success.”

Blatt explained the whole surgery in detail before operating on Starr and impressed Brenda with his direct but confident delivery.

“I can’t say enough good things about him,” Brenda said. “He is just a miraculous doctor. That man has God working through him, there’s no doubt about that.”

The procedure took place over the course of nearly seven hours. Blatt opened Starr’s skull and disconnected the entire left half of her brain, which had been damaged by the stroke in infancy and was felt to be the source of her seizures. The dramatic surgery is known as a “hemispherotomy” and is reserved for epilepsy patients with the most severe, widespread brain damage. This newer procedure offers the benefits of the older hemispherectomy operation with a lower risk of some major complications.

Starr’s procedure was successful, and our UF Health staff had her up and walking the next day. After a 10-day stay in the hospital, she was finally able to go home. At first, Brenda was helping her walk, but after a day at home, Starr was walking independently.

It has been nine months since the procedure, and Starr has not had a single seizure. Brenda is amazed by her overall progress.

“Her cognitive ability has improved immensely and so has her retention level,” Brenda said. “It’s like she’s a different child.”

“This is why I love to do epilepsy surgery,” said Blatt. “Every time I see Starr, I remind her that we did this to give her an independent life, so I give her a ‘homework’ task at each visit. So far she has learned to cook, plans a family dinner each week, does her own laundry and packs her own lunches each day. She has really blossomed.”

Today, Starr enjoys doing her favorite things without the fear of falling and seizing without warning. She sings constantly and loves music. She’s a people-person who loves to play basketball and soccer.

“She’s just one of those kids who loves to help and loves to do things for people,” Brenda said.

Recently, Starr went to senior prom with her boyfriend, someone she’s kept in touch with from kindergarten. It never would have been possible without the surgery performed by Blatt.

“It was just so special,” Brenda said. “It was the first time she’s ever been to a dance with a boy.”

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Brittany Purcell's picture

What To Know About Mental Health: Everyone’s Doing The Best They Can

person comforting another person by holding their handsMichael Shapiro, M.D., an assistant professor in the UF College of Medicine’s department of psychiatry and medical director of UF Health Child Psychiatry and Psychology at UF Health Springhill, provides an expert’s perspective on mental health to increase awareness and decrease the stigma for those with a mental illness.

May is Mental Health Awareness Month.

Why is it important to take care of your mental health?

Physical and mental health are so tied together. Imagine what it is like to go a day without good sleep or a day without eating. That affects your whole experience. We should treat our brain like any other body part. For example, if your leg was injured it would be much more obvious to rest it. We do not do that with our brains. When it is a mental issue we tell people to push through, and we would never say that to someone with a broken leg.

What are some strategies people can take to improve their mental health?

Try as much as possible to live your typical life, whatever that may be. Know what you can do to feel worthwhile and purposeful. The more you keep aspects of your typical life, the more that helps you get by on a day-to-day basis.

I would also say, know who your go-to people are and know that it is OK to ask for support. Having social connections and emotionally supported relationships is a huge protective factor for people with mental illness. When you are having a bad day or a bad time, have a person you can go to, someone you can say, “Hey, I’m having a hard day today and I could use someone to vent to.”

What are signs that I should reach out to someone?

Changes in behavior that are different than what is expected for that person. This can include: they are more irritable than usual, more isolated, showing up late if they are usually on time, sleeping more or sleeping less, spending more time alone or the things that they used to care about do not seem to matter to them as much anymore.

There is nothing wrong with asking someone, “Are you OK?” The first step is being curious and trying to understand. Part of the package is not being judgmental or blaming. Focus on listening and understanding instead of trying to “fix their problem.”

What would you tell those with mental illness, their families and friends?

Sometimes we make people with a mental illness work harder than they have to. We may put pressure on the patient by saying, “What happened? Did you take your medicine? Are you eating right? Why are you having a bad day?” This is basically saying, “You shouldn’t feel bad if you are doing what you’re supposed to.” Everybody has bad days, including people with mental illness. There’s a lot of help in just having a nonjudgmental, listening attitude and that works for people with or without mental illness.

One thing that stops people from getting help is they blame themselves for their symptoms or they worry they are going to upset other people by telling them they have a mental illness. Mental illness is nobody’s fault. Nobody wants to have a mental illness. Nobody wants to have a family member with a mental illness. No one is trying to be sick. Everyone is doing the best they can. The difference with mental illness compared to physical illnesses is people with physical illnesses don’t feel blamed.

If you or a loved one are struggling, call any of the numbers below for help.

• UF Health Mental Health Evaluation Line: 352.265.5481
• National Suicide Prevention Lifeline: 1.800.273.8255
• Crisis Text Line: Text “HOME” to 741741
• Alachua County Crisis Center: 352.264.6789

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Brittany Purcell's picture

Bladder Cancer – Susan’s Road to Acceptance

Susan Baglivio

It was late December when Susan Baglivio, a 68-year-old outpatient surgery nurse from St. Augustine, felt that she may have a urinary tract infection, or UTI. She had frequent urination and felt like she was sitting on a lump.

“I’d never had a UTI my whole life, and it just seemed like I had one,” she said.

Susan went to see her gynecologist and was given antibiotics. Her problems continued to get worse and the day after Christmas, she couldn’t tolerate the pain any longer. She went to the E.R., where an examination revealed a mass that was diagnosed as bladder cancer.

Paul Crispen, M.D., a urologic oncologist, treated Susan. “While most patients present with blood in the urine, her initial presentation was caused by pain and urinary frequency,” said Crispen, an associate professor in UF College of Medicine’s urology department.

Thankfully, Susan’s CT scans did not show evidence that the cancer had spread beyond her bladder and left ureter. Her options included surgery and chemotherapy, alone or in combination with one another.

“I didn’t want to have chemotherapy,” said Susan. “When I met with Dr. Crispen I realized I had no choice, my tumor was fast growing.”

Because of the location and stage of her cancer, she was told her best chance for cure was the surgical removal of her bladder and left kidney following chemotherapy.

“The urologist said everything’s going to have to come out,” she recounted. “I went into shock. I didn’t know I was going to lose my bladder.”

Post-treatment was a difficult road for Susan, who now has a urostomy bag that collects her urine. She’s tried to make the best of the tough situation.

“My last name is Baglivio and now I go by Susie Bags because I wear a bag,” she said. “I tried so many different brands of bags, and after surgery I was dealing with urinary tract infections. It took me months to accept what I was going through.”

Urinary tract infections can be common after bladder removal surgery, largely due to the new urinary drainage system required for urine to leave the body.

“The best advice for someone diagnosed with bladder cancer is to make sure you know all of your options,” said Crispen. “I encourage patients to ask open questions to their care providers and participate in bladder cancer advocacy groups locally and nationally. Shelly Doran, a genitourinary oncology nurse navigator, has set up a local support group for patients at UF Health. Additionally, the Bladder Cancer Advocacy Network is an excellent organization that provides a wealth of resources to patients. In terms of treatment, I encourage patients to consider clinical trials, which offer our patients the latest breakthroughs in the treatment of bladder cancer.”

Now, Susan connects with her patients who are going through the same treatment.

“I interview patients before they have surgery now in preadmission, and if I have someone who might be going through the same procedure, I’ll say, ‘If this should happen to you, call me, and I will offer all of my assistance’, because that will make it all worthwhile,” she said.

May is Bladder Cancer Awareness Month. In the U.S., bladder cancer is the fourth most common cancer for men and the 11th most common cancer for women. There are multiple known risk factors for bladder cancer including exposure to specific chemicals, medications and infections. However, the number one risk factor for developing bladder cancer is smoking. Some patients develop bladder cancer without any obvious risk factors, like Susan.

This month, we reflect on stories like Susan’s and aim to increase awareness of bladder cancer.

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Sofia DiMartino's picture

Surviving Childhood Cancer: Lennox’s Story

June 26, 2017, was the worst day of Gary and Carly Allen’s lives. It was the day their child, 2 1/2-year-old Lennox Allen, was diagnosed with an aggressive brain tumor.

Before the nightmare began, the couple were living an idyllic life. Gary Allen, D.O., a family medicine resident at UF Health Shands Hospital, was working hard to serve patients while taking care of a growing family. Carly was a stay-at-home mom for their two little boys, Austin and Lennox, with another one on the way.
It didn’t come as a surprise to the young family when Lennox began experiencing morning vomiting episodes. Their oldest, Austin, had also vomited frequently when he was young. However, Carly noticed that there seemed to be a pattern with Lennox. He would get fussy, grab the back of his head and then suddenly vomit.

Concerned about her son, Carly took him in for a pediatric check-up. Tests showed no signs of gastrointestinal problems, yet Lennox’s symptoms persisted.

On June 24, 2017, Gary came home from work and noticed that Lennox was walking unsteadily. Having studied signs of brain abnormalities in medical school, Gary knew that Lennox’s symptoms — including vomiting, headaches and an unsteady gait — were common signs that something was very wrong neurologically.

After sharing his concern with Carly, Gary took Lennox to the UF Health Shands Pediatric Emergency Room. Within an hour, while Lennox watched his favorite TV show, Paw Patrol, the emergency physician called Gary out into the hallway and gently broke the news. Lennox had been diagnosed with a large posterior fossa brain tumor. The physician told Gary that neurosurgery would be inevitable in the coming days.

In shock, Gary called Carly, who was shopping for groceries with Austin, to tell her the news. She ran out of the store, pulling Austin by one hand, crying and devastated.

“I went through the whole stages of grief, like denial and anger,” Carly said. “I had hope, but at the same time, I had totally no hope that things were going to go right. I was angry that this had had happened to him. We were heartbroken.”

Prior to Lennox’s impending surgery, the Allens discovered they had yet another hurdle to cross. UF Health was waiting for a new pediatric neurosurgeon, Lance Governale, M.D., to move with his family to Gainesville. Who then, would perform Lennox’s surgery?

After Lennox’s physician called Governale and explained the situation, the Harvard-trained pediatric neurosurgeon immediately agreed to fly to Gainesville early to operate on Lennox’s brain tumor.

“Dr. Governale, I love that man,” Carly said. “He flew in when he was supposed to be trying to help his family move from Ohio, and he came for Lennox to do the surgery. Several months later, we realized how important it was that it was him who did the surgery.”

After Governale completed the tumor resection, an intraoperative biopsy diagnosed Lennox with an atypical teratoid rhabdoid tumor. This rare form of pediatric cancer, commonly known as AT/RT, is fast-growing and typically found in children younger than 3 years of age. Because the tumor type is so uncommon, many physicians have never heard of or dealt with it, but Governale had.

“Dr. Governale was up-to-date with what AT/RT was and how important it was that he got the whole tumor,” Carly said.

The eight-hour surgery was a success, and Lennox was cleared to undergo the next stage of cancer treatment, which included intensive chemotherapy, stem cell transplant and proton therapy, under the supervision of UF Health neuro-oncologist Sridharan Gururangan, M.D.

Lennox Allen at UF Health Neuromedicine Hospital

“Dr. Gururangan is one of those doctors who can present material to you with a tender spot,” Carly said. “He knows how to present the bad material, but then give you hope that there’s something that can be done about it. I’m grateful that there are people out there who dedicated their lives to studying such rare things like AT/RT, and that’s him.”

Lennox had to be hospitalized to receive his chemotherapy medications, meaning he would be in a hospital room for three weeks at a time. The drug also caused a variety of painful side effects.

“A lot of people ask me what he did while he was in the hospital,” Carly said, “But he was so incredibly sick, and he was only 2 1/2 during it. On his good days, he would get up and play with some of the volunteers or we’d take him on a wagon ride. But the majority of the time, all he wanted to do was watch YouTube Kids, and we didn’t really care because he was so miserable.”

Chemotherapy wreaked havoc on Lennox’s little body. His red blood cell counts fell, necessitating a blood transfusion, and then his white blood cells and neutrophils fell quickly after that. Lennox spiked a viral fever, which also caused terrible diarrhea. When his hair began to fall out from treatment, Gary shaved off the rest of it.

Through it all, Lennox’s soon-to-be little brother was growing quickly inside his mother’s womb and on Oct. 31, 2017, Darren Lee Allen was born at UF Health Shands Children’s Hospital. The Allens took the baby upstairs where Lennox was being treated, and the brothers met for the first time. That night, Gary went home to take Austin trick-or-treating.

On Dec. 12, 2017, the Allen family got their Christmas wish early, as Gururangan found no trace of AT/RT in Lennox’s body. While this was the news they were waiting for, Lennox had to continue treatment to decrease the chance for recurrence. He went to the UF Health Proton Therapy Institute where he received 28 rounds of radiation. On Feb. 5, he finally completed all treatments and was able to go home for good. Carly said their family owes it all to UF Health’s team care approach to cancer treatment.

“The team of them together, Dr. G (Gururangan) and Dr. Governale, it’s awesome that we have that at UF,” Carly said. “It gives pediatric patients with brain tumors a leg up.”

Today, Lennox is at home being a typical 4-year-old. He loves to play outside, draw and color. He loves his friends and teachers at the school he now attends, and he loves dinosaurs. Carly calls him “the happiest kid ever.”

Yet, life after cancer treatment isn’t always sunshine and rainbows. For a while, Lennox was tube-fed because the side effects from chemotherapy made him dislike eating. Today, however, he is eating on his own.

Lennox still has slight right-sided weakness and some speech delay after the tumor removal and receives therapy for both, but Carly could not be happier with his progress and achievements.

“So, what? Lennox has that right-sided weakness? So what?” Carly said. “He still has the same personality. He’s thriving. He’ll live a normal life despite all that he’s gone through. Lennox’s prognosis started with Dr. Governale, and he set him up for success.”

Now, looking back on her family’s experience with an aggressive childhood cancer, Carly is thankful for the care her family received and offers advice for other parents who may soon be facing the same painful experience.

“My biggest thing is you’re going to have to get help. No one ever wants to accept help, but at that moment I accepted everything because I couldn’t do it all by myself,” Carly said. “When it comes to the health care providers, trust that they know what they’re talking about and trust them. No one can prepare you for that awful day when someone tells you your child has cancer. No one can prepare you for that. It’s OK to cry. Ask questions and just let the doctors help you.”

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All of Us Research Program marks first anniversary at UF Health

The All of Us Journey bus was featured at UF Health last fall. The hands-on mobile recruitment unit helped us teach the benefits of precision medicine and the goals of the program. Pictured (L-R) are the UF Health All of Us Research Program co-principal investigators William Hogan, M.D., UF College of Medicine professor of Health Outcomes and Biomedical Informatics, and Elizabeth Shenkman, Ph.D., UF College of Medicine chair of Health Outcomes and Biomedical Informatics and director of the Institute for Child Health Policy, with David R. Nelson, M.D., UF interim senior vice president for Health Affairs and president of UF Health.

In May, we marked the one-year anniversary of UF’s involvement in the groundbreaking nationwide All of Us Research Program. The mission for All of Us complements ours: to support health research and improve health for all Americans.

The National Institutes of Health-funded program is designed to gather health data from at least 1 million people within 5 years and follow participants for a decade in order to advance precision medicine. Precision medicine is personalized health care based on factors including where an individual lives, what they do and their family health history. Researchers will study the impact of differences in lifestyle, environment and genetic makeup on individual health.

In May 2018, UF joined the SouthEast Enrollment Center (SEEC), which includes UF, the University of Miami, Emory University and Morehouse School of Medicine. More than 25 medical institutions are involved in All of Us. Data gathered by the All of Us Research Program will provide an avenue for use by researchers around the world.

“Our goal at UF is to recruit 15,000 participants from around the state over the next five years,” said Elizabeth Shenkman, Ph.D., the co-principal investigator for the All of Us Research Program at UF Health.

Shenkman is the UF College of Medicine chair of Health Outcomes and Biomedical Informatics and director for the Institute for Child Health Policy. She and William Hogan, M.D., UF College of Medicine professor of Health Outcomes and Biomedical Informatics, are the co-principal investigators for both the All of Us Research Program at UF Health as well as the OneFlorida Clinical Research Consortium. OneFlorida is collaborating closely with the SouthEast Enrollment Center and serves as the data coordinating center for the consortium.

The UF study team has been recruiting participants including our own faculty, residents, staff, students and volunteers as well as community members. The regional network aims to strengthen the program’s reach into diverse populations, including lower-income, Hispanic and Latino, African-American, and rural communities.

“This is the best way to contribute for anyone who wants to help improve health for future generations. The breadth of this project will be astounding,” Shenkman said. “All of Us has the potential to impact thousands of other studies covering a wide variety of health conditions.”

Participants are asked to complete surveys about their health, share their medical record information and contribute a blood and urine sample that will be used for genetic analysis. SEEC has already contributed nearly 4,000 medical records across the 4 institutions to the program. This information is stored for researchers to apply to use to study different diseases, populations or trends over time. Precision medicine has the potential to allow healthcare providers to inform people about the best ways to stay healthy. If someone becomes sick, precision medicine may help health care teams find the best treatment for that individual.

According to David R. Nelson, M.D., interim senior vice president for health affairs at UF and president of UF Health, “The program needs participants who care about improving the health of everyone, people who are willing to share information about themselves that could help cure diseases in our lifetime.

“This initiative represents a new era for precision health to enable more proactive and personalized health care that empowers people to lead healthy lives.”

Visit our All of Us Research Program page for information and http://bit.ly/AoU-HSC to enroll in the program.

Amy Cook's picture

Before I Die I want to _____

Before I Die chalk wall

Join the conversation this National Healthcare Decisions Day

Before I Die walls, a way for community members to reflect on their mortality and consider their wishes, returned to Gainesville in early April.

The walls were installed to promote National Health Care Decisions Day on April 16, a special day to empower the public and health care providers about the importance of advance care planning.

The walls began when Candy Chang, a woman from New Orleans, grieved the death of a loved one. She painted “Before I die I want to _____,” on an abandoned house to encourage people in the community to confront mortality and begin a conversation about their end-of-life care wishes.

In 2017, the walls made their way to Gainesville.

“We wanted to bring it to UF Health, and multiple departments collaborated to do this in Gainesville to start advance care planning conversations,” said Alyssa Milonas, a Neuromedicine Interdisciplinary Clinical and Academic Program, or NICAP, intern.

The NICAP interns installed 13 walls at locations across Gainesville. They include the 1329 Building, Facilities Administration Building, UF Health/HSC Sun Terrace, Arts in Medicine, HealthStreet, Reitz Union, Alachua County Senior Center, Haven, United Church of Gainesville, Possum Creek, Cone Park Library Branch and the 34th Street wall.

“The thing with mortality is it isn’t just for one audience. We reached out to libraries, UF Health, Santa Fe, churches, everywhere we could think of with a different demographic,” Milonas said. “There’s no requirements. We just wanted to encompass all of Gainesville.”

Jacqueline Baron-Lee, Ph.D., UF Health Shands director of quality improvement, said that each person who was part of the wall installation was able to write on it.

“It’s one of those mediums where you can share something that’s as jovial as jumping out of an airplane or as heartwarming as a mother wanting to make an impact in her daughter’s life,” she said.

Baron-Lee is thankful for student leaders Alyssa Milonas, Nyasia Jenkins, Hannah Mathews, Brittany Henry and Kelly Likos who are making an impact through the walls.

“What’s really encouraging is this group of students are the future of health care,” she said, “and they’re the ones helping us spray paint till 9 p.m. and making their mark each time we install a wall.”

Before I Die Wall description

The NICAP interns plan to increase the amount of walls each year to further the movement and get Gainesville even more engaged, Milonas said.

“We have the public posting the walls on social media and using the hashtag,” she said. “We have information at all of the walls that explains National Healthcare Decisions Month and all of the events going on in April.”

Visit our Advance Directives page for more information about advance care planning.

Sofia DiMartino's picture

Surgeons Save Newborn Suffering From Spina Bifida

Lindsey Courson of Tallahassee was 26 and expecting her second child. Her first, a little boy named Camden, was a healthy, rambunctious 1 ½-year-old, and she and Clay, her husband of five years, were ecstatic about their new addition.

They weren’t yet aware that they would be embarking on their most difficult journey yet.

Their baby, a little boy they named Collin, arrived on March 10, 2011, through a planned C-section. Upon delivery, doctors immediately noticed that something was wrong.

Collin had a hole in his back, exposing his spine and threatening his survival. The dangerous condition, called spina bifida, required surgery within the first 24 to 48 hours of his life.

Collin Courson

Collin was quickly diagnosed with the most severe form of spina bifida, called myelomeningocele, in which his spinal cord failed to close during fetal development early on in his mother’s pregnancy. Due to this, many of his nerves were exposed throughout development, resulting in damage to the cord as the pregnancy continued.  

Collin was in danger, and the hospital he was born in did not have a neonatal intensive care unit, or NICU. He needed be transferred to another medical center quickly.

“The hardest thing was not being educated on his condition,” Lindsey said. “If we had known he had spina bifida before he was born, we would have delivered him at UF Health Shands Children’s Hospital. I didn’t know if he was going to be disabled or if he was going to be mentally handicapped for the rest of his life. It was terrifying.”

Under the loving watch of his father, Collin was transferred to another hospital in Tallahassee that had a NICU while Lindsey stayed behind, unable to travel after her C-section.

There, Collin’s family was given a choice.

He needed to be transferred again to a hospital more equipped to handle his crucial imminent surgery, and his family had to choose between another facility and UF Health.

“We pretty much immediately chose UF Health,” Lindsey said. “It was the closest to us, only two hours away, and we’d heard really great things about their children’s hospital.”

On the evening of his birth, Collin and his father traveled by ambulance from Tallahassee to UF Health Shands Children’s Hospital in Gainesville.

“It was so difficult not being able to go to Gainesville with him immediately,” Lindsey said. “It was all pretty difficult on our family.”

The day after Collin was born, doctors at UF Health closed his spine and attempted to place all of the previously exposed spinal nerves back into his body. They discovered that Collin had a second condition, which typically accompanies myelomeningocele, called hydrocephalus, meaning he had fluid backup within his brain. The condition is chronic, meaning Collin will be dealing with it for the rest of his life.

During this time of diagnosis and agonizing discovery, Collin’s family was assisted by a social worker who helped coordinate meetings with the pediatric neurosurgeon and Collin’s other doctors at UF Health. Lindsey credits the hospital, its staff and its nurses as the best elements of her experience due to their care and kindness during one of the most difficult times in her life.

To combat the hydrocephalus, pediatric neurosurgeons placed a shunt in Collin’s brain, which would drain the excess spinal fluid. Unfortunately, shunts can have issues over time, sometimes rarely, sometimes commonly. Over the next seven years, Collin’s shunt required 11 revisions, meaning he’s undergone 11 brain surgeries since birth at UF Health.

Procedures like these have become a part of Collin’s routine now, but Lindsey thinks back to those early days as a time of fear and emotion, overcome by the reassurance and understanding that UF Health was prepared to save her son.  

“I remember walking into UF Health Shands and just being in awe of the staff, the facilities and the hospital,” Lindsey said.

She experienced a similar emotion in 2017 when she was introduced to a new pediatric neurosurgeon for Collin for the first time since she’d arrived at UF Health in 2011. Initially, there was apprehension. Then, there was relief. When Lindsey met UF Health chief of pediatric neurosurgery Lance S. Governale, MD, she knew that her baby would continue to be treated with the highest level of care and expertise.

“The first time I met Dr. Governale, I remember thinking to myself, ‘He is so confident!’” Lindsey said. “At the time, my son needed spinal cord surgery that had been attempted the year before and was not successful, and I remember him saying he wouldn’t know until he went in there, but he was so confident that it was going to go well, and that made me feel so much better.”

Governale describes the surgery as long and rigorous, but crucial to the success of Collin’s growth.

“Many times in spina bifida the spinal cord becomes tethered, causing tension on the nerves as the child grows which must be relieved with surgery,” Governale said. “Collin’s previous doctor ran into thick, dense scar that he was unable to separate. But Collin was getting worse so I recommended that we try again.”  

The surgery was successful, and Dr. Governale was able to detether Collin’s spinal cord, relieving the tension on the spinal nerves and improving his symptoms.

Since then, Lindsey has been shown time and time again that Dr. Governale goes out of his way to help his patients get the best care possible, especially those like the Coursons who are traveling from out of town to UF Health.

“I truly feel that he cares for his patients,” Lindsey said. “He has gone over and above to accommodate out of town patients. He now comes to Tallahassee once a month to see local patients here.”

Dr. Governale has even helped with accommodating MRIs to work around the schedules of those coming to UF Health from out of town.

“If somebody is coming to us from outside of Gainesville, and they need multiple appointments, we try to make sure they are scheduled the same day,” Governale said.

Lindsey is thankful for it all, as it has allowed Collin to live a relatively normal life, despite the conditions he deals with every day. Since birth, now 7-year-old Collin has had leg weakness and numbness, but he pushes through and walks with the help of braces.

Despite these challenges, Collin remains an active kid with a big heart. He does well in school. He loves to visit the beach, go boogie boarding and swim in the family pool. He plays with his brother and rides the toy four-wheeler around outside (with a helmet, of course).

To the average person, Collin appears to be a regular child with a mild disability. This, Lindsey says, is a blessing she owes to the hard work of the physicians and staff at UF Health.

“All the doctors at UF Health have just said how great Collin looks and how great he’s doing,” Lindsey said. “But the inside of him does not look like the outside. He looks great and he looks healthy, but his MRIs show a completely different child.”

Lindsey remembers the advice she was first given at UF Health from a physician assistant on staff, and she offers it to other moms who might be discovering their babies have serious health conditions, like spina bifida or hydrocephalus.

“She said, ‘Collin is a baby and he’s going to have normal baby stuff. He’s going to get colds. He’s going to get sick. He’s going to have fevers. He’s going to teethe. He’s going to be a baby first. He’s just also going to have spina bifida. Sometimes, it’s hard to differentiate the two, but he’s going to be your baby first.’”

Talal Elmasry's picture

Before and After: Christina’s Complete Transformation at UF Health

Christina Mandeville before and after visiting the UF Health Weight Loss Surgery Center

At her biggest, Christina Mandeville — a mother of three — was 350 pounds and suffering from multiple ailments. UF Health dramatically turned her life around, both physically and emotionally.

As a nurse, Christina is naturally devoted to care for the well-being of others. However, the 34-year-old Branford, Fla., resident was slow to realize the lack of attention she was giving to her own health.

Christina eventually found herself anchored at an unbearable weight, which kept her stranded somewhere far away from her children, both physically and emotionally. She needed a lifeline.

“I have three kids [ages 15, 13 and 11], and it was just getting to the point where I couldn’t do anything with them,” Christina said. “I was miserable, my body hurt all the time, and I was always tired. I was very depressed. I needed a change.”

Luckily, Christina already had a place that earned her trust over the years by caring for her children.

“My youngest kid was born at UF Health Shands Hospital. My middle child, which is my oldest son, he actually spent a week over at [UF Health] Shands [Hospital] because of RSV [respiratory syncytial virus] when he was 8 months old, so we’ve been back and forth over there with respiratory issues with him,” Christina said. “But they’ve always treated us well.”

Christina was desperate to get down to a manageable weight. At 350 pounds, it would take three procedures and coordination between multiple departments at UF Health to get her where she wanted to be.

The original surgery was performed by Dr. Jeffrey Friedman three years ago at the UF Health Weight Loss Surgery Center. Initially, Christina had her heart set on doing a gastric sleeve procedure in which up to 80 percent of the stomach is removed to encourage weight loss.

However, Dr. Friedman convinced Christina that the gastric bypass surgery would be a better option in her case to lose the necessary weight and feel better. This technique helps patients lose weight by changing how their stomach and small intestine absorb and digest food.

At the time of the operation, Christina was at 309 pounds. Now, she’s down to 160.

“Christina had a BMI over 50 prior to her Roux-en-Y gastric bypass,” Dr. Friedman said. “She did great from this operation and lost over 150 lbs., achieved a normal BMI and had resolution of multiple comorbidities in the first year after her operation.”

Christina, who’s been nursing since 2009 and currently works through a Branford company to provide in-home care for disabled babies, enjoyed a swift recovery with no complications.

“I actually went back to work within a week,” Christina said. “I didn’t have any issues as far as that goes.”

Christina’s journey wasn’t over yet, though.

Her two follow-up procedures were performed by Dr. Bruce Mast at the UF Health Plastic Surgery and Aesthetics Center. The first of those two operations was done in June 2017, a lower body lift with abdominoplasty, or tummy tuck. The second was done a couple months later to address her upper body, with Dr. Mast doing work on her arms and performing breast augmentation.

Suddenly, after all that time as a castaway, Christina had navigated herself to the relationship she always wanted with her kids, and herself.

“I can get out and run around with my kids, and I sleep so much better,” Christina said. “My body doesn’t hurt, because I used to have a lot of hip pain and feet pain and back pain and everything else, but I don’t have that anymore. I feel a million times better.”

According to Dr. Mast, his patient’s attitude resembled that of an artist fiercely eager to paint their bare canvas with color.

“Christina was a wonderfully upbeat individual,” Dr. Mast said. “She seemed to be so grateful for her transformation and the improved quality of life it offered. She was always realistic, informed, reasonable and genuinely pleasant and likeable.”

Before the massive weight loss surgery and body contouring procedures at UF Health, Christina’s uncomfortable life contained other problematic areas. Now, the benefits of those operations are chipping away at each one.

Christina, who said she’s been on depression and anxiety medication “on and off for years,” has felt a major transformation.

“I’m very thankful for all the surgeons that I’ve come across, because they’ve made me feel better about myself, like my personal views on myself are better,” Christina said.

“I’m not depressed like I was. I mean, it’s a work in progress, but they’ve definitely made a huge difference for me.”

She was also pre-diabetic and no longer has that issue. Meanwhile, Christina made sure to point out the way her physicians handled another one of her conditions to illustrate how thorough her care was at UF Health.

Christina also has hemochromatosis, which means she gets overloaded with iron in her blood system. Dr. Mast worked one-one-one with her hematologist, also through UF Health Shands Hospital, to evaluate whether she was safe to have the second follow-up surgery because she was notably anemic after the previous one.

“I was very pleased with the continuity of care that everybody provided,” said Christina, who also made a point to mention her “very sweet” nurse practitioner Dawn Daigen.

“The fact that they were able to communicate amongst each other just to make sure everything was going to be OK. I’m very thankful.”

Mohammad Ebraheem's picture

Through a Doctor's Eyes

Arriving early to the hospital to walk around the Pediatric Cardiac Intensive Care Unit before my night shift begins, I grab a cup of coffee from the coffee shop and head up the stairs to the 10th floor.

As I walk in, the day team lines the hallway awaiting the arrival of pediatric cardiology patients - infants, toddlers and adolescents alike - from the OR. The unit operates much like a beehive, each person on task, moving quickly and efficiently throughout the unit. I notice the smiles they wear on their faces as they move along busily to the next task.

Nurses move in and out of patient rooms, periodically pausing to ask doctors a question before continuing to take care of some of the most complex patients in the hospital.

Patients and their families wave to me as I walk past their rooms – some of them waiting to be taken to surgery while others are just waking up from an operation. Others are waiting patiently for the next step in their care.

As the post-op patients arrive, the anesthesia team pushes beds down the hallway where the ICU team waits to take over patient care. The surgeon is already at the bedside and families stands by, ready to see their loved one. After undergoing surgery, each patient’s body is weak and dependent upon machines to assist with their recovery. The ICU team operates with one common goal, to ensure a smooth, mistake-free transition while keeping each patient safe and comfortable. Though the team has completed hundreds of similar transitions, they treat each patient as their most-important case.

After confirming that each transition went smoothly and my assistance is not required, I turn and walk down another hallway toward more patients who are awaiting care. I put on a clean gown and gloves to meet with families and hope to catch a playful grin from my patients. Whitecoats aren’t always so scary after all.

My next stop is the call room. As I walk, I can’t help but wonder how these patients with congenital heart disease who are fighting for their lives every moment of each day be so strong? Their smiles truly inspire others to be courageous and to remain hopeful. These patients fill the lives of everyone around them with joy. I am proud to be a part of their care team.

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Matthew Tavormina: A Medical Miracle

Rather than shopping for baby clothes and diapers, Alyssa and Brian Tavormina went shopping for a burial plot for their unborn child. They purchased the blankets — soft, warm and protective as his mother’s womb — that Matthew would be wrapped in on the day of his burial.

This grim scene was far from expected on the day the couple went in for a routine ultrasound in March 2017.

On that day, when they were meant to see their second child for the first time, they were instead met with concerned glances and the words every parent fears hearing:

“I need to show you something on your baby.”

What the doctor saw was devastating. A large pocket of fluid appeared to be coming off the back of baby Matthew’s head. Their doctor originally diagnosed Matthew with a cystic hygroma, a fluid-filled sac that results from a backup of lymphatic fluid and can be associated with several genetic disorders or be entirely coincidental. He sent Alyssa and Brian in for genetic testing after referring them to a high-risk OB-GYN. There was a chance, he said, that the cystic hygroma could resolve itself if the Tavorminas tested negatively for all associated genetic issues.

Matthew Tavornina

Yet, before Brian and Alyssa received their genetic testing results, the high-risk OB told them it wasn’t a cystic hygroma at all. Instead, Matthew had an encephalocele, which occurs when the neural tube that typically closes during the third and fourth week of pregnancy to form the brain and spinal cord does not close completely, causing the brain and the membranes that cover it to protrude through an opening in the skull. This meant that no matter what the genetic testing said, Matthew’s condition would not improve on its own. This doctor told the terrified couple that their baby had a 0 percent chance of survival and that, best case scenario, Matthew would only be able to breathe and blink. These words would haunt them for the rest of Alyssa’s pregnancy.

The Tavorminas later received their genetic testing results and discovered no abnormalities, but, to Alyssa, the time it took to receive those results was a blessing.

“It was honestly a good thing that she told us about the encephalocele before we got the results back from the genetic testing, because if we had gotten the genetic testing results before, it would have given us false hope,” Alyssa said

During this time, the Tavorminas leaned into their faith to overcome their fear and pain, creating a Facebook prayer page for their unborn child. Over 500 people followed and offered prayers as the Tavorminas posted updates about their progress. This, to Alyssa, was both a beautiful and difficult process.

“It took us nine weeks to tell really anyone other than close family and friends about Matthew,” Alyssa said. “We are very private people, but we kind of kept having the conversation that: A) we needed prayer and B) we had no idea what God was doing through all of this. We decided that if sharing our story could help one other person out there, then we were willing to stick our necks out and spread a very private and personal thing.”

When Alyssa was 16 weeks pregnant, she transferred her medical care to UF Health Shands Hospital, where physicians became concerned about something else. The physician noticed that besides the encephalocele, another pocket of fluid was present inside the back of Matthew’s head, and his cerebellum, the part of his brain that would coordinate and regulate muscular activity, wasn’t visible either. By the time Alyssa was 20 weeks, the doctor was even more concerned by the lack of visibility.

Finally at 22 weeks, Alyssa underwent a fetal MRI and her physician gave the worried parents a definitive explanation for Matthew’s developmental problems.

He explained that baby Matthew had a condition called Dandy-Walker, a rare congenital malformation involving both the cerebellum and the fourth ventricle. 

Typically, Matthew’s ventricles would be skinny, narrow pathways of cerebrospinal fluid located in the center of his brain. With a Dandy-Walker malformation, however, his fourth ventricle had ballooned up to be a fourth of his head size. Due to the malformation, Matthew’s cerebellum hadn’t developed properly and the pressure in his head caused by the oversized ventricle had created an opening in the back of his skull. 

The encephalocele pushing through that opening coupled with the Dandy-Walker malformation was an extremely rare occurrence. For that reason, physicians couldn’t give a positive prognosis for Matthew’s development, or any at all.

Instead, the Tavorminas were met with bad news after bad news, and they had no idea what to expect when their baby was born. The couple was repeatedly given the same prognosis: Matthew could pass in the womb, pass at birth, be severely disabled or live a somewhat normal life.

“We didn’t get a single piece of good news in every single ultrasound we had other than that he had a heartbeat, all four limbs, all other major organs and a precious face,” Alyssa said.

Then, suddenly, nine months was almost up, and Matthew was preparing to enter the world via C-section. Due to Matthew’s condition, and the couple’s understanding that he would likely require neurosurgery within 24 hours of his birth, the parents hunted for a pediatric neurosurgeon worthy of the job.

They found that physician in UF Health’s Lance Governale, M.D.

When Alyssa called to ask a question about UF Health’s pediatric neurosurgery program, expecting a receptionist, the Harvard-trained chief of pediatric neurosurgery, Dr. Governale, answered the phone instead.

“We talked to him, and we had a very personal, very information-filled conversation, like you’re talking to a friend,” Alyssa said. “While we were planning our C-section, he gave me the reassurance that we would be taken care of and that he would be there to operate on our son. That conversation was the peace and comfort I needed, and it was a game-changer.”

With that, Alyssa was able to move forward and schedule the C-section at UF Health.

Dr. Governale assured the Tavorminas that though they had heard many terrible prognoses for Matthew, it didn’t mean that any or all would come true.

“I told them that you really can’t accurately predict function. Kids are very resilient,” Governale said. “There may be some degree of developmental delay, but there might not be.”

Matthew entered the world against the odds on Sept. 18, 2017. He emerged pink and crying, before being whisked off to the Neonatal Intensive Care Unit, or NICU, for treatment. The Tavorminas found out later that Matthew had his umbilical cord wrapped three times around his neck at birth, so it was another little miracle that he had needed to be born by C-section.

Less than 24 hours after birth, baby Matthew was undergoing a more than two-hour brain surgery. Dr. Governale operated, removing the extra brain lining on the outside of the skull and tucking the rest of Matthew’s enlarged ventricle back inside. The hole in his skull would need to be monitored over time to ensure that it closed completely on its own, now that it was relieved of pressure.

The afternoon after the surgery, Matthew drank milk for the first time and the Tavorminas were finally able to hold their baby boy.

It was the culmination of a long and emotional journey for the couple, one that was eased by UF Health faculty and staff.

 “We had an amazing anesthesiologist and a great surgeon,” Alyssa said. “We had been praying for peace and comfort as the day of his arrival approached, and we didn’t expect we would get that from the wonderful UF Health faculty and staff on the day of his birth.”

Before being released from the NICU a week after he entered the world, Dr. Governale informed the Tavorminas that their little miracle had hydrocephalus due to his condition. Matthew had a ventriculoperitoneal (VP) shunt placed at 7 days old to drain the excess cerebrospinal fluid from his brain. At 3 months old, Matthew’s VP shunt failed, which is common, and Dr. Governale replaced the shunt.

            Alyssa said Dr. Governale’s care for her son means the world.

 “Dr. Governale has exceeded all of our expectations,” Alyssa said. “His bed side manners are incredible and beyond what we ever imagined; we feel as though he treats our son and us as a friend. Along our journey, he has patiently comforted us and answered any questions each step of the way. Honestly, Dr. Governale has been an answered prayer, and we call ourselves blessed to be in his care.”

Today, Matthew is an active 1-and-1/2-year-old who loves to play with his older brother and has made tremendous gains, defying all the odds. Though he struggles with balance and coordination issues due to his malformed cerebellum, Matthew crawls quickly to make his way around. When he can’t balance sitting directly on his bottom, Matthew compensates for his physical limitations by sitting in the W-position. Recently, he’s begun pulling up on furniture to slowly cruise around the room while holding on. Matthew’s physical therapists say he will walk one day.

“When he was born, everything was a question,” Alyssa said. “We didn’t know if he would be able to breath, swallow, or regulate his heartrate because of all the fluid pressure on his brainstem. He could have a cleft palate, a cleft lip, a bad heart. We didn’t know if he would ever walk, talk, crawl or eat properly. Now, from what we’ve seen and what he’s done with the help of therapy, he seems to be able to compensate for the malformations in his brain. His brain is slowly overcoming it.”

Although the Tavorminas have now moved to the Jacksonville area, they continue to come to Gainesville for their pediatric neurosurgical care.  And Dr. Governale is very happy with Matthew’s progress.

Recently, Matthew’s neurologist told the Tavorminas that the baby was progressing so well that there was no reason for him to come back for a check-up unless new problems started to develop, such as seizures which Matthew is at high risk for due to the brain malformation.

Dr. Governale is happy with his progress, too.

“He has some developmental delay, but it’s overall mild. He definitely does not have severe delay,” Governale said. “With therapies, we will continue to work to maximize his function.”

Alyssa and Brian Tavormina feel blessed to be able to share their story of a miracle, and hope they can offer inspiration for families embarking on a similarly painful journey.

“Our whole goal was to show others that there’s hope, even in the most daunting of times,” Alyssa said. “Throughout our journey we were hopeful and tried to encourage others even when we weren’t sure if our baby would be OK. It’s easier to have hope and joy when your baby’s doing well, but we pressed into our faith throughout the hardest chapter of our lives.”

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Kidney Cancer – a Silent Disease

Jessica Van Leer was experiencing pain in her abdomen when she arrived at the UF Health Shands Hospital E.R. After a series of tests, the medical team had two findings: the source of her pain was an ovarian cyst, but Jessica also had an incidental finding of a tumor on her left kidney.

“I was 32 at the time and wasn’t experiencing any symptoms, no pain,” said Jessica, who is now 35.

Recent studies have found an uptick in findings of kidney cancer similar to the way Jessica’s was found – incidental small kidney masses found by CT scan and MRI imaging when the patient is coming in for a different chief complaint.

The E.R. team’s discoveries led Jessica to Li-Ming Su, M.D., urologic surgeon, professor and chair of the UF College of Medicine’s urology department.

“In Jessica’s case, we rarely see kidney cancer in people her age,” Su said. “Kidney cancer is often a silent disease, but when found early, it allows physicians to treat and cure more patients by performing surgeries to remove only the mass and not the entire kidney”

And that is exactly what he did.

Su performed a robotic partial nephrectomy using the daVinci™ Surgical Robotic System and only removed part of Jessica’s left kidney through key hole incisions. He was able to remove only the tumor, sparing over 90% of her healthy kidney. Historically done through open surgery, robotic surgery allows for the procedure to be less invasive. Robotic surgery also allows for a shorter hospital stay and significantly reduces blood loss and the need for transfusions.

“Dr. Su and his team made everything easy for me,” said Jessica. “Including performing a double surgery to remove the ovarian cyst while Dr. Su removed the tumor so I did not have to have two surgeries.”

Catching Jessica’s cancer early meant no chemotherapy or radiation treatments.

“I count myself incredibly lucky to have most of my kidney still left and not have to go through any other treatment. Just surgery and I was okay,” she said. “I only have four very small scars each about an inch long.”

Jessica is now two and a half years cancer free, and spends her days practicing yoga and teaching music at Santa Fe College.

March is Kidney Cancer Awareness Month. This month we reflect on stories like Jessica’s and aim to increase awareness of kidney cancer. 

Kidney cancer risk factors include: smoking, obesity, family history of kidney cancer, kidney failure on long-term dialysis and chemical exposures (cadmium and pesticides).

For patients who have any signs of blood in the urine associated with flank pain or weight loss, it is important to be seen by a urologist and be evaluated for potential causes of bleeding such as: kidney and bladder cancer amongst other urologic conditions.

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Nathaniel Yeatman: One Family’s Journey with Craniosynostosis

Yeatman family standing next to a tree, smiling

Marissa and Jon Yeatman gave birth to a healthy baby boy named Nathaniel on Feb. 9, 2018, in Tallahassee, Florida. He was their second child and made their daughter a big sister, a position she was eager to take on.

Three days after his birth, Marissa and Jon took their baby to the pediatrician for his newborn checkup, and the doctor noticed an abnormality in the shape of Nathaniel’s skull.

“The pediatrician took pretty much one look at him and said, ‘Let’s take some X-rays,’” Marissa said.

Though Nathaniel’s head only had a mildly pinched appearance, his abnormal head shape foreshadowed a much more serious problem. Nathaniel was diagnosed with sagittal craniosynostosis, a birth defect in which one of the fibrous joints between the bones of Nathaniel’s skull closed prematurely before his brain was fully formed.

“Usually when you look at a newborn’s head on an X-ray, it looks like the skull is kind of shattered, but part of his looked like it was already formed and closed like an adult,” Marissa said.

Their pediatrician recommended Lance S. Governale, M.D., UF Health’s chief of pediatric neurosurgery who has a focus in craniosynostosis. The Yeatmans contacted him immediately, hoping to resolve the issue as quickly as possible.

Dr. Governale knew he needed to treat the problem early, so he scheduled the Yeatmans for an appointment close to their home at the UF Health Pediatric Specialties practice in Tallahassee.

“At that point, he was like new, new to the world,” Marissa said. “He was only about a month old. So, our options were kind of broadened, because we caught it so young.”

To gather more information, Dr. Governale obtained a special CT scan. CT scans involve some amount of radiation exposure, but at UF Health’s Gainesville and Tallahassee locations, Dr. Governale introduced ultra- low-dose CT scanning. These scans provide 3D views of the skull at a radiation dose similar to a few X-rays and much lower than standard CT scans.
After Nathaniel’s CT scan confirmed the condition, Dr. Governale laid out three different treatment options.

“The skull is made up of multiple different bones with sutures in between them,” Governale said. “Sutures allow the skull to grow. If they close early, it alters the head shape. In addition, suture closure can restrict skull growth while the brain is trying to grow leading to increased pressure.”

Craniosynostosis is typically treated surgically, due to the need to unlock the bones and reshape the skull. The traditional surgery, larger and more invasive, would probably require a blood transfusion and a longer hospital stay, but Dr. Governale was committed to offering minimally invasive options.

“One minimally invasive option consists of unlocking the bones through one or two small incisions with the assistance of an endoscope, and then using a helmet afterward to reshape the skull,” Governale said. “The downside is that the helmet has to be worn for 23 hours per day for upwards of nine months. It also requires regular visits to a helmet orthotist, who may not be located in the family’s region, like Tallahassee.”

Because of these issues, Dr. Governale and his pediatric craniofacial plastic surgery partner, Jessica A. Ching, M.D., introduced a second minimally invasive option to UF Health — cranial expander springs. With springs, a helmet is not required. UF Health Shands Children’s Hospital in Gainesville is the only site in Florida offering this newest treatment option.

Though she trusted the physician’s expertise, Marissa was relieved to feel as if she wasn’t forced into one specific treatment option for her baby boy. She felt that Dr. Governale let her have the final say.

“He was really good about not pushing one option over the others,” Marissa said. “He said if there was one option that was better than the other two, he wouldn’t offer the other two.”

That third, minimally invasive option for Nathaniel was the one that the nervous parents eventually chose.

In May of 2018, Nathaniel underwent craniosynostosis surgery with cranial expander spring implantation. Drs. Governale and Ching made one incision, used an endoscope to help open the sealed suture and then put in two cranial expander springs to reshape the skull. Three and a half months later, they went back in and took out the springs, completing the process — no helmet required.

A team approach is essential for treating craniosynostosis. The physicians work side-by-side to tailor the treatment to the patient and involve other specialists if needed, including ENT, oral surgery, dentistry, genetics, speech therapy, audiology, psychology and social work. Although Nathaniel did not need those additional specialists, he did have one more added benefit of Dr. Ching’s participation in the surgery — a beautiful closure with minimal scarring, something Marissa and Sean are very thankful for.

“She did an amazing job with all of his stitches and everything,” Marissa said. “The scar was actually, originally, a pretty odd U-shape. As his head is growing, it has started to stretch and look straighter. Already, you can’t see the incision that much.”

Today, Nathaniel is a healthy 1-year-old, and you can’t tell there was ever anything wrong with his skull.

“He had an excellent reshaping. His head looks normal now and is allowing his brain to grow,” Governale said. “We’ll be watching him, but hopefully, because he’s otherwise healthy, he won’t encounter additional issues.”

Nathaniel’s more focused on doing his favorite things, now that he doesn’t have to worry about surgeries or doctors’ visits. His big sister is his greatest source of entertainment.

“He loves his sister. Hands down, she’s the one that can make him smile the most,” Marissa said. “Any time she gives him attention and plays with him, he’s just so happy. They’re cute together.”

Nathaniel started walking recently and is very mobile. He loves eating and playing with a little lion rattle. The lion has been with him from the day he was born through every surgery after that.

Like that little rattle, Marissa and Jon have been there the whole way, too, and have learned a lot through their hardest moments with Nathaniel. Marissa offers advice to other parents who are about to undertake their own harrowing journey with craniosynostosis.

“I would say don’t panic,” Marissa said. “You’ll get through this. Honestly, the doctors know exactly what they’re doing. Trust them.”

She also encourages parents to trust their gut when it comes to health care decisions for their children.

“It’s very, very scary seeing your newborn baby go into surgery,” Marissa said. “It’s just very difficult. When Nate was waking up after his first surgery, he was very fussy. That whole day he was fussy: upset, disoriented, crying. I was second guessing our decision while trying to comfort him. Then, the next day, he woke up and smiled and was suddenly completely himself again. Don’t second guess yourself. You know what’s right for your family and your child. It’s crazy how resilient children are.”

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New guidelines for daily aspirin therapy

For some older adults, a low-dose aspirin has been a daily staple of life to prevent a heart attack or stroke. Now, the American College of Cardiology and the American Heart Association have issued new guidelines recommending against low-dose aspirin therapy for adults older than 70 or anyone who is at higher risk of bleeding. The new guidelines follow the results last year of a large clinical trial by the National Institutes of Health, which found that daily aspirin did not prolong healthy, independent living among older adults without prior cardiovascular events. Aspirin therapy has been studied by UF Health cardiologists Ahmed N. Mahmoud, M.D., left, and Anthony A. Bavry, M.D.

Aspirin therapy has also been studied by UF Health cardiologists Anthony A. Bavry, M.D. and Ahmed N. Mahmoud, M.D. In 2017 and 2018, their two published analyses of 11 aspirin therapy clinical trials concluded that daily aspirin therapy does not save lives, causes additional bleeding and provided no benefit for patients with peripheral vascular disease, which causes narrowed arteries and reduced blood flow to the limbs.

Here, Dr. Bavry addresses some questions related to the new guidance:

What is most important for patients to know about the new aspirin therapy guidelines?

Recent research has found that aspirin may not save lives when used for primary prevention but it does increase major bleeding. Accordingly, updated guideline recommendations from the American College of Cardiology/American Heart Association have downgraded the use of aspirin for primary prevention. In summary, aspirin can still be considered on a case-by-case basis for 40-to-70-year-old individuals who are considered to be at highest risk.

Can certain patients still benefit from aspirin therapy? If so, which ones?

The current guidelines reserve the possible use of aspirin for primary prevention for the "highest risk" patients. However, who is "highest risk" is not precisely defined. As always, patients who are uncertain if aspirin is appropriate for them should discuss this topic with their cardiologist or medical provider.

How do the new recommendations fit in with your prior research?

We published an analysis which explored the use of aspirin for primary prevention. We failed to find a convincing benefit for aspirin therapy for primary prevention. In addition, aspirin was associated with important bleeding risks. This and other research helped to update guideline recommendations.

What do the new guidelines suggest to you about an emerging medical consensus on aspirin therapy?

Through ongoing research, the cardiovascular community is coming to the realization that aspirin may not offer all the benefit we formerly thought it was capable of.

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Anthony A. Bavry, M.D., is an associate professor in the UF College of Medicine's department of medicine and a cardiologist at the Malcom Randall Veterans Affairs Medical Center in Gainesville. Ahmed N. Mahmoud, M.D., is a cardiology fellow in the UF College of Medicine’s department of medicine.

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Weight Loss with Canaglifozin Linked to Improvement in Nonalcoholic Fatty Liver Disease

Clinicians frequently overlook nonalcoholic fatty liver disease in their patients who have Type 2 diabetes. Yet it is estimated that approximately 70% of obese adults with diabetes have fatty liver disease, and approximately 30% to 40% of those with steatosis have the more severe form, nonalcoholic steatohepatitis. Fatty liver disease is the second most common cause of liver transplantation and puts patients at higher risk for progressive liver disease, cirrhosis and hepatocellular carcinoma. It is associated with increased insulin resistance, atherogenic dyslipidemia and cardiovascular disease.

Canaglifozin is a member of a novel class of oral antidiabetic agents called sodium glucose co-transporter-2 inhibitors, which are known to promote weight loss and decrease the risk of cardiovascular events in patients with Type 2 diabetes. Recognizing that both of these characteristics are desirable for patients with fatty liver disease, Kenneth Cusi, M.D., FACP, FACE, chief of the University of Florida College of Medicine’s Division of Endocrinology, Diabetes and Metabolism, and his research team undertook a groundbreaking clinical study to determine whether patients with Type 2 diabetes and fatty liver disease who lose weight when treated with canaglifozin also experience a reduction in liver fat and improvement in insulin secretion and action. The results of this study were recently reported in the journal Diabetes, Obesity and Metabolism

Cusi notes, “This is the first randomized controlled trial suggesting that patients with Type 2 diabetes and fatty liver disease who lose weight when treated with canaglifozen may experience improvement in liver fat, insulin secretion and insulin action.” The study found that treatment with canaglifozen significantly improved insulin sensitivity and insulin clearance, and restored beta-cell glucose sensitivity. More patients with fatty liver disease who were treated with canaglifozin experienced weight loss of 5 percent or more compared with placebo, and the magnitude of weight loss was highly correlated with a reduction in intrahepatic triglycerides. 

Cusi underscores the innovative and important work UF Health is doing in this therapeutic area and points out, “This study is valuable for all clinicians who treat patients with Type 2 diabetes who are obese.”

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Promising Potential New Treatment for Patients with Sepsis, Cancer or Genetic Conditions

Cells need energy to live, which they get from adenosine triphosphate. Pyruvate dehydrogenase complex is needed to form adenosine triphosphate, so in turn this mitochondrial enzyme is essential to life. Numerous disease processes have the ability to deactivate pyruvate dehydrogenase complex, thus preventing cellular glucose oxidation. Researchers at UF Health, the Southeast’s most comprehensive academic medical center, have found a potential target for treating the problem that is showing great promise.

Peter Stacpoole, M.D., Ph.D., a professor of medicine, biochemistry and molecular biology at the University of Florida in the Division of Endocrinology, Diabetes and Metabolism, and his fellow researchers have been evaluating the potential utility of an investigational drug called dichloroacetate in the treatment of sepsis, cancer or genetic conditions. For more than three decades, dichloroacetate has been tested in a wide range of diseases and conditions, including Type 2 diabetes, myocardial ischemia and congenital lactic acidosis.

In their clinical trials, Stacpoole and colleagues have demonstrated that dichloroacetate is effective in promoting immunometabolic and organ homeostasis in sepsis, and in targeting the pyruvate dehydrogenase complex/pyruvate dehydrogenase kinase axis in cancer. They have also investigated development of a sensitive and rapid clinical genetic screening test for patients who may be treated with dichloroacetate.

Stacpoole and colleagues have shown that dichloroacetate reactivates pyruvate dehydrogenase complex and increases mitochondrial oxidative bioenergetics in isolated hepatocytes and splenocytes. They have also shown that dichloroacetate promotes vascular, immune and organ homeostasis, accelerates bacterial clearance and increases patient survival.

UF Health is currently working in collaboration with researchers at Wake Forest University and Washington University to determine the long-term implications and potential benefits for dichloroacetate in patients who are critically ill, patients with acquired diseases and pyruvate dehydrogenase complex inhibition, and children with enzyme mutations.

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Integrative Medicine: A partnership of conventional and holistic medicine

Integrative medicine may be an unfamiliar concept among patients and arguably an underutilized treatment option for an array of medical conditions. It is a holistic approach to medicine that focuses on treating the whole person – mind, body and spirit. Since the program’s inception at UF Health, more than five years ago, the integrative medicine team has supplemented the care of many patients who find traditional methods and pharmaceuticals are unable to provide optimal results. Mike Husted’s journey is an example of how integrative medicine can provide new alternatives and hope to treatment plans.A UF Health provider conducts acupuncture on a patient

Mike Husted grew up in Florida and graduated from Deland High School. Husted, who now lives in Port Orange, made a career serving in the U.S. Air Force and served in Texas, where he boasts that he married a Texas girl. After his career in the Air Force, Mike earned a master’s degree in social work. He continued to serve his country through his work with the Department of Veteran Affairs and assisting wounded soldiers seeking medical care at the VA Medical Center adjacent to Fort Hood, Texas. He loved his work and spending time with wife and family, but Mike was forced to retire early due to chronic pain of his jaw. He said he struggled to maintain an adequate quality of life. “I was miserable all the time,” he said.

In 2009 and 2012, while living in Texas, Mike underwent two surgeries to address dysfunction of the temporomandibular joint, or TMJ, which caused chronic pain of his jaw. The first surgery attempted to repair the joint and the second was a total joint replacement on the left side of his jaw. Although, the total joint replacement surgery was a success he suffered from residual effects including atypical trigeminal neuralgia, or ATN. Damage to the trigeminal nerve can result in constant burning, aching, hypersensitivity and ear pain.

When Mike decided it was time to come home to Florida, his surgeon referred him to the care team at UF Health where he would be able to receive specialized treatment for his condition. He committed to a two-hour drive from Port Orange to Gainesville to meet with members of the UF College of Dentistry – M. Frank Dolwick, D.M.D, Ph.D., a professor and chair of the department of oral and maxillofacial surgery, and Monica Fernandez, D.D.S, M.S. a clinical assistant professor in the department of restorative dental sciences. Mike praised the providers for their exceptional care, but he continued to struggle with the side effects of his previous surgeries.

The traditional course of treatment for ATN begins with pharmaceuticals, but Mike said although the medications were helpful, he had experienced too many side effects. He explored options including further surgeries and possibly a nerve block, but he was not a good candidate for those and he was reluctant to seek further traditional methods.

“After you’ve been hurt, you don’t want to take the chance of making it worse,” he said. “I would wake up in the morning not knowing what kind of day it was going to be and sometimes, I just stayed home.” The smallest incidents such as a cold breeze or the noise from a restroom hand dryer would trigger increased pain, headaches and frequent migraines.

To find relief for Mike, Fernandez referred him to Irene Estores, M.D., the director of integrative medicine program at UF Health. After an individual consultation, Estores recommended medical acupuncture to help relieve Mike’s facial pain and sensitivity.

One thing that distinguishes receiving medical acupuncture at UF Health is the personalized consultation by a fellowship trained integrative medicine physician to determine the best patient care. Mike found confidence in knowing that Estores is a physician and a medical acupuncturist. 

Acupuncture involves piercing the skin with very thin needles in specific patterns and points on the body. This method, originating in China, is now widely accepted and practiced as a component of integrative medicine.

Mike completed eight weeks of treatment with acupuncturist David McMahon, A.P., at UF Health Integrative Medicine – Spring Hill. Acupuncture provided immediate relief and subsequent sessions alleviated even more side effects.

“It has helped reduce the sensitivity,’’ he said. “I can do more things with my wife and get out more.”

Mike will need long-term care and he is continuing weekly acupuncture treatments with a provider in Deland. He anticipates less-frequent care will be required as he continues to experience positive effects. He credits the multidisciplinary care he received at UF Health for his improved quality of life.

“Not all of the pain is gone,’’ he said. “But my bad days are better and my good days are better.”

Do you have ADHD? Unleashing college potential masked by ADHD

Highlighting the word ADHD in a book.

I remember when I first arrived at the University of Florida for my freshman year, I was worried that the workload would be overwhelming as compared to high school. Luckily, I adapted to college work pace and performed well.

However, there were several fellow students who did not seem to adjust, falling behind in classes, eventually settling to simply stay afloat. Back then, I was not well-informed about disorders related to attention and, frankly, it never came to mind that they could be affected.

Now that I am a psychiatrist, I have a much deeper understand and perspective on the constant daily battles that people with Attention-Deficit Hyperactivity Disorder, or ADHD, have to endure in multiple spheres of their lives.

Our college years are often where we kick off the start of our adult lives, and imagine if you are at the starting line with a parachute tied to your back. Learning with ADHD feels very much like running with a parachute, watching everyone else running ahead of you. Discovering you have ADHD could cut the strings, opening new doors and possibilities for the future.

What is ADHD?

ADHD is a chronic condition resulting in difficulty with maintaining attention, organization and impulse control.

Given the fact that the majority of our childhood, adolescence and young adulthood is spent in a school setting, school life can become an uphill battle in the context of ADHD. Always feeling behind compared to fellow students, sub-par grades, behind in assignments, the self-confidence suffers.

College students with ADHD

Pinning down how many college students have ADHD is difficult because the current statistics are skewed. According to the National Center for Biotechnology Information, ‘’between 2 and 8 percent of college students in the United States have ADHD.”

The NCBI also states that “estimates are largely based on studies that obtained self-reported symptoms or diagnostic status from a convenience samples of students at individual campuses, and not on comprehensive evaluations conducted with nationally representative samples.”

With that said, ADHD affects millions of children and adolescents in the U.S. every year. Many thought it was over-diagnosed, being pushed by parents seeking extra accommodations for their child for test-taking purposes, or falling under the widely cast net of simple immaturity.

However, there are many cases where ADHD is overlooked.

I’ll see children and teenagers with above-average intelligence who do not require as much vigorous effort in high school to maintain good grades go undiagnosed. In many instances, there are students with ADHD who are underperforming to their intellectual level but assume that this is the best they can do.

Many times, this can lead to persistent frustration, low self-esteem and depression if the underlying diagnosis of ADHD is left untreated.

College can make it worse. The students no longer have their parents to push them along, remind them of tests or project due dates. They do not have the coddling high school teacher who offers them extra credit to help boost the grade of a hard-working yet struggling student.

What happens when these young adult college students are on their own?

Often, they receive no guidance and no diagnosis.

Could you have ADHD?

How would a college student know when it is time to get help?

Here are 10 questions college students can ask themselves to help determine if they should seek assistance. These struggles would likely be seen in multiple settings, such as school, work, or home and occur more days than not.

  1. Do I find myself constantly rereading to understand the text?
    This issue typically will cause you to take what feels like an excessive amount of time to read, do homework, etc. You are left feeling like you are seeing the words, but the information is not processing.
  2. Do I get easily distracted?
    This can manifest in two different ways. One is when you are either in a conversation or trying to work on a task and you are distracted by your own unrelated thoughts, missing pieces of the conversation or causing you to reread, as in #1. The second form is when you are distracted by external stimuli, sounds or movements around you, causing you to lose focus.
  3. Do I stop and start multiple tasks without completion?
    This can be related to fidgeting, difficulty sitting still, distraction by your own thoughts, or simply losing interest.
  4. Do I struggle with time management?
    You find yourself running out of time on tests or you run late for meetings, events and classes.
  5. Do I lose/misplace items often and tend to be forgetful?
    You are constantly losing your phone, keys, watch, wallet, etc. either due to not paying attention to where you placed the items or forgetting where. You also forget important dates or things on a to do list, like paying a bill.
  6. Do I procrastinate?
    This classic behavior is one of the most common issues, but you are not lazy. You simply dread the idea of the task that awaits you and avoid doing it at all cost, despite the potential negative consequences.
  7. Do I have trouble staying organized?
    If you have a mental list, you will not stop to make a written list. If you make a written list, you lose the list. Your papers are everywhere, and your to do list is somewhere in the mess.
  8. Do you find most school-related work “boring?”
    This might have been how you felt about school since your elementary years. It takes a lot to capture your interest, especially if it is a topic or task that requires your sustained attention.
  9. Do I miss details?
    This might be because you are rushing through a task or a reading passage or because you realized you have run out of time due to time management issues. This issue can also present itself because you are not paying attention in a conversation or during class when the professor is speaking, and you miss an important piece of information.
  10. Do I have trouble waiting my turn?
    This struggle typically accounts for the impulsive symptoms associated with ADHD, whereas questions one through nine are more reflective of the inattentive symptoms of ADHD. Impatience and low-frustration tolerance can persistent even into full adult maturity. You struggle with interrupting people during a conversation, intruding in someone’s personal space or getting a little agitated waiting in lines. You might touch things on people’s desk without permission, or simply take over what someone else is doing.

How did you do?

Did you answer YES to three or more of these questions? Couldn’t make it past reading the first paragraph of this article?

If so, save yourself a semester of trying to pull up your grades and digging yourself out of the academic hole and seek mental health services.

Where can you turn for help?

Most universities provide accommodations such as student mental health services on campus for free to enrolled students. You can also talk to your parents with honesty and ask them to arrange for an evaluation with a mental health professional.

The bottom line is you are more than capable of making it through college and doing very well. ADHD is not the result of a lack of intelligence or work ethic; it is an issue with executive functioning and it is treatable.

You deserve every chance possible to succeed in college and achieve any and all goals you set for yourself.

Lindsay Israel, M.D., is a board-certified psychiatrist. She is a graduate from the University of Florida College of Medicine’s Department of Psychiatry. Her goal is to help patients feel empowered, because their symptoms can leave them feeling powerless. She specializes in Transcranial Magnetic Stimulation, or TMS, therapy for the treatment of various psychiatric disorders. TMS is FDA-approved for depression and is a noninvasive, nonmedication alternative to traditional treatments. Israel’s specialized clinic, Success TMS, focuses on this advanced therapy, which allows patients to achieve remission from depression and return back to their best lives.

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Living With a Great Hope

Jonah and Hannah Strickland

Dawn Strickland describes her four children as any doting parent would. Jonah, the oldest, is 16 and a wonderful helper. Joel, 14, is the sweetest boy. Nine-year-old Grace, the little athlete, is simply wonderful, and 2-year-old Hannah is a little ball of life.

“I have never in my life seen a child with more personality,” Dawn said of Hannah. “She has all that just stuck in that tiny, little body of hers.”

What Dawn doesn’t mention in describing her four children is that both Joel and Hannah have a rare, and life-threatening, genetic, metabolic disease called cystinosis.

The rare lysosomal storage disorder causes the amino acid cystine to accumulate in many organs of the body, including the kidneys, eyes and liver. Often diagnosed before the age of 2, children with the disease typically experience excessive thirst and frequent urination, as well as sensitivity to light caused by cystine crystals that develop behind their corneas.

This frequent urination is one of the greatest challenges for Dawn and her husband Travis. Hannah doesn’t sleep through the night because she wakes up every hour-and-a-half incredibly thirsty, meaning Dawn doesn’t sleep, either.

“She wakes up and gets anywhere from 12 to 14 diapers every day,” Dawn said. “I’m constantly changing her. She uses at least five diapers every night and gets up for five to six drinks of water. We don’t sleep longer than two hours at a time.”

This frequent urination results in loss of minerals, which are typically absorbed by the kidneys. In children with cystinosis, this lack of nutrients causes kidney failure to occur very early in life, meaning early intervention is imperative to patient success.

The couple did not have that early identification with Joel and searched for over two years for a diagnosis for him.

“Very early on, he was very sickly,” Dawn said. “When I tried to nurse him, he wouldn’t latch on.”

Dawn’s physicians in her hometown of Niceville, Florida, suspected tongue-tie as the reason Joel was struggling to breastfeed. But after a procedure to relieve it, nothing got better.

“As time went on, he was just getting sicker,” Dawn said. “We took him to several local doctors and that was his first admission to the hospital. I’d say he was around 18 months or so.”

Joel spent two weeks in the hospital. After receiving no diagnosis, Dawn took her son to another local facility where his symptoms were treated for seven months. Still, no one had any answers to the question of what could be causing them.

“They were treating him from a working diagnosis, which meant they had no clue,” Dawn said. “Looking back, I would have chosen UF Health from the get-go.”

When Joel was 2 years old, the Stricklands tried again to find a diagnosis, but the out-of-town hospital they went to had no appointments available in the timeframe the family needed.

“At this point, he was vomiting 10 to 12 times a day and not keeping any food down,” Dawn said. “He probably only weighed 17 or 18 pounds. To say it was a nightmare was really an understatement.”

Dawn took Joel to the emergency room, where he was denied admission as a non-emergent case. Overcome by concern for her son, Dawn refused to leave the ER until staff scheduled an appointment for Joel.

“Miraculously, they got me an appointment the next day,” she said. “I was so desperate at that point, I didn’t care if the police took me away.”

Finally, Dawn got the answer she’d been searching for, as the doctor asked, “Have you ever heard of cystinosis?”

Incredibly, Dawn had. She had mentioned cystinosis as a potential diagnosis with previous doctors.

“I had asked,’’ she said. “I had asked the so-called experts at the other hospitals. And everybody just laughed at me and said that’s so rare, and you don’t really know what you’re talking about. I felt like somebody had punched me in the gut.”

Soon after, an ophthalmologist identified crystals on the back of Joel’s corneas. Bloodwork came back confirming a diagnosis of cystinosis.

“As upsetting as it was, it was also a huge relief thinking that we finally had some answers,” Dawn said.

When Grace was born, she didn’t show any signs of the disease, and, seven years later, Hannah didn’t, either. Hannah was eating well and gaining weight. She wasn’t overly fussy, but Dawn’s motherly intuition kicked in and she felt something was different than it had been with Grace.

“I had to ask the nephrologist twice to have her tested, and he was shocked when it came back that she had it,” Dawn said.

Cystine levels typically should be below 0.2, but Hannah’s cystine level at 5 months old was nine, confirming the cystinosis diagnosis.

Hannah and Joel both have G-tubes for easier ingestion of the many medications that keep them alive, but both struggle with eating because of side effects. Hannah goes to occupational therapy to improve her eating as she’s not often hungry and, when she is, she often chews her food and then spits it out.

“Sometimes she says her tummy hurts a lot and I know it’s from the medicine and she’ll complain,” Dawn said. “You’ll just have to stop what you’re doing and hold her.”

In 2018, the Stricklands faced the inevitable as Joel’s creatinine levels began to drop, alerting to his doctors that he was entering end-stage kidney failure.

Joel would need a kidney transplant, and the parents decided he should have it at UF Health. There, Joel had a team of nephrologists and transplant surgeons, led by Kiran Upadhyay, M.D., working to ensure the surgery was successful.

Before Joel could receive a new kidney, the family had to consider the source of the donation: a family member or a deceased donor.

“Joel made the decision,” Dawn said. “My husband I were willing to donate to him, but he was really adamant that he didn’t want a kidney from a family member. I was super uncomfortable with his decision, and I’d even lost a bunch of weight so I could be donor. But with everything he’s been through, we wanted him to have some sense of control.”

In March of 2018, Joel was placed on the deceased donors list, and on June 7 his family received the call that a kidney was available.

After the successful surgery, his family stayed in the Pediatric Intensive Care Unit and then moved down to the transplant floor. The whole experience, Dawn said, was eased greatly by UF Health’s nursing staff.

“Every time we’re at UF Health, the nurses make everything just amazing,” Dawn said. “Of course I know the doctors are good. We wouldn’t have come here if they weren’t, but nurses really make or break the stay. We have not had a bad nurse, and some have kind of become our friends around this. They’ve become kind of like family.”

Today, Joel goes to check-ups just about every week to see doctors and get his blood drawn as his team keeps a very watchful eye on his levels and well-being. He makes sure to have his medications everywhere he goes, as to not forget an all-important dose.

Dawn spends time home-schooling and taking care of her children. In her few free hours, she advocates for funding of cystinosis research.

“The majority of the medications that have been made have been created because the community banded together and raised the money collectively,” she said. “We’re a very small community, but we’re very, very strong.”

This dedication has helped researchers make tremendous strides. The disease has recently been cured in mice, leading Dawn to hope that a cure in humans will be discovered in time to help her children.

“If I can prevent one family from having to experience that two-year stretch of not knowing that I went through with Joel, then it’s absolutely worth my time to tell our little story,” Dawn said.

She carries one word with her every day throughout her most difficult moments caring for Joel and Hannah: hope.

“We’ll have a new family that pops into our online support group every once and awhile,” Dawn said. “It makes me emotional to think about, but I just want to tell them that if I can do this, you can. Although we’re very aware of the medical challenges we face as a family, we are so much more than ok. We live with a great hope & a lot of that is due to all of the talented & dedicated professionals at UF Health.”

Kelly Daly's picture

Artificial device mends a baby girl’s broken heart

Kennedy Curry

Ceara Curry and her husband, Kenton, were brand new to parenthood when their baby turned into a miracle.

At 6-months-old, Ceara and Kenton’s daughter, Kennedy, contracted what they believed was a common cold. Her pediatrician told Ceara that her baby had allergies, but Kennedy worsened overnight.

“I knew something was off,” Ceara said. Time would prove that her instincts were correct.

Ceara took her daughter back to the pediatrician, and the doctor suspected they heard a heart murmur. An X-ray revealed that Kennedy had an enlarged heart.

The Curry family was instructed to take Kennedy to UF Health Shands Children’s Hospital. Upon their arrival at the UF Health Congenital Heart Center, doctors discovered that Kennedy’s heart was failing.

“It was very, very terrifying,” Ceara said. “As a mom with a completely healthy baby, we went from being told it was allergies to it being heart failure a week later. We were crushed.”

Kennedy was diagnosed with dilated cardiomyopathy, a disease of the heart muscle that causes the ventricle to stretch to a point where it can’t healthily pump blood to the body. Her heart was pumping at only 8 percent.

Kennedy worsened overnight in the pediatric cardiac intensive care unit, and didn’t respond to medicine.

“I was heartbroken,” Ceara said. “We didn’t know if she was going to make it.”

But the team of clinicians didn’t give up hope. Desiree Machado, M.D., a pediatric critical care physician at UF Health Shands Children’s Hospital, and a team of specialists stood outside Kennedy’s room to monitor her during that critical first night. Machado and team kept a close eye on Kennedy to see if she would need to be placed on extracorporeal membrane oxygenation, or ECMO, a life support machine that puts oxygen in the blood and removes carbon dioxide. All the meanwhile, Kennedy remained heavily sedated as her heart function stabilized.

On March 21, 2018, Kennedy was placed on the Berlin Heart®, an artificial heart device made specifically for babies and children facing heart failure. The device supported Kennedy’s heart function as the Curry family awaited a new heart.

“I felt selfish praying for a new heart for her,” Ceara said. “I started praying for healing, and she got it.”

After 3-and-a-half months of waiting, Kennedy’s failing heart did the impossible – it got better.

“Her heart started competing with the machine,” Ceara said. It wasn’t before long that Kennedy’s doctors began a weening process and allowed her heart to pump on its own.

On June 25, 2018, Kennedy was disconnected from the Berlin Heart®, and no longer needed a heart transplant.

“The whole experience was amazing,” Ceara said. “It definitely led us to appreciate life and the little things more.”

During the four months Kennedy was in the hospital, Mark Bleiweis, M.D., the director of the UF Health Congenital Heart Center and the chief of congenital cardiothoracic surgery; Dipankar Gupta, MBBS, D.C.H, M.D., a pediatric critical care physician; and Machado, kept Ceara and Kenton a part of the treatment plan for their daughter. As new parents, it was important for the Currys to know each step of the process, and the team allowed Ceara to continue to care for Kennedy as a mother.

Now, as a healthy 17-month-old, Ceara says Kennedy is a firecracker. She enjoys walking and exploring, and she has found a particular love for sweet potatoes.

“My daughter had not seen the sunlight in four months,” Ceara said of Kennedy’s time in the hospital. “This is a whole new world for her. She’s making up for lost time.”

Through it all, Ceara and Kenton held on to their faith and their trust in Kennedy’s doctors.

“I’m thankful for the PCICU,” Ceara said. “If I had to recommend a children’s hospital to anyone, it would be UF Health Shands Children’s Hospital.”

Kelly Daly's picture

A Big Move for a Bigger Reason

Natalie MangumNatalie Mangum was married to her husband, Mike, for five years when he woke up one day and said, “I want to move to Florida.”

The idea of a cross-country move from their home in Utah did not excite Natalie, so the couple decided to stay closer to family and move to California. They were all set to relocate, but something didn’t feel right.

“There was this weight,” Natalie said. “We do things on a whim, but I was very anxiety-ridden.”

Knowing that a life-changing move was a one-time endeavor, Mike flew to Florida, found a home in Palm Coast and, in two weeks, the couple had moved across the country. Natalie’s weight felt like it had been lifted.

But the move to Florida meant having to find a new cardiologist for Natalie who was diagnosed at 6-months-old with VSD, a ventricular septal defect that is a hole in the wall separating the two lower chambers of the heart.

“I was told time and time again that I wouldn’t have to get my heart fixed,” said Natalie, now 28. She continued her routine EKGs and echocardiograms each year.

After the move, Natalie began feeling fatigued with odd chest pain and shortness of breath. Her cardiologist in Palm Coast believed she was going into heart failure, and Natalie was recommended to see Arwa Saidi, MB. BCh. FACC , the co-director of the adult congenital heart disease program at UF Health Shands Hospital, at one of UF Health’s congenital cardiology satellite clinics in Daytona Beach

“Going into it, it was scary for me because I had been told time and time again that my heart wouldn’t need to be fixed,” Natalie said. “So when Dr. Saidi told me it needed to, I was scared.”

Natalie traveled to UF Health Shands Hospital in Gainesville, Florida and underwent open-heart surgery with Mark Bleiweis, M.D., the director of the UF Health Congenital Heart Center and the chief of congenital cardiothoracic surgery at UF Health, on Dec. 14, 2018. A second hole in the wall that separates the top two chambers of her heart was found, as well.

Natalie made an excellent post operative recovery and was released from UF Health Shands Hospital just four days after her surgery.

“I think that something that is very helpful in someone’s care and recovery is to have positive people around them,” Natalie said. “Having a good experience at UF Health Shands helped me be able to be released from the hospital so soon.”

Even Mike, who said he typically isn’t a fan of hospitals, admitted he was blown away by their experience with the doctors and nurses who ensured that the couple’s needs were met. Natalie said her care team took their time, comforted and encouraged her with positive attitudes.

Natalie Mangum's three dogs.

Natalie is now recovering at her home in Palm Coast with Mike and their three dogs, and she plans to return to her job as soon as she is healed.

Through her entire experience, Natalie is humbled by the way her and Mike’s choice to move to Florida played out.

“Things happen for a reason,” Natalie said. “I firmly believe that we were supposed to be here to have my experience at UF Health Shands.”

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Exploring the Sinus Microbiome in Chronic Sinusitis

Researchers at the University of Florida are among the first investigators to examine the clinical and microbiologic characteristics, risk factors and recalcitrance in patients with chronic rhinosinusitis who had Achromobacter or Serratia marcescens infection in the sinuses.

Jeb Justice, M.D., chief of the Division of Rhinology and Skull Base Surgery at the UF College of Medicine — part of UF Health, the Southeast’s most comprehensive academic health center — was an author of two groundbreaking studies that focused on these less commonly isolated, gram-negative organisms in chronic rhinosinusitis. The results of both studies were published in Otolaryngology Online in 2018. [ref]

“A great deal of research exists into more common bacteria in chronic rhinosinusitis, such as Staphylococcus aureus and Pseudomonas aeruginosa,” says Justice. “In our institution we saw patients with less common gram-negative organisms and sought to elucidate whether they were causing disease or were innocent bystanders.”

Serratia marcenens is a gram-negative facultative anaerobe classified as a member of enterobacteriacae that has been isolated in nosocomial infections. Achromobacter is an aerobic, motile, nonfermenting, gram-negative bacillus found around the world in water and soil, including swimming pools and well water, and in dialysis and chlorhexidine solutions.

According to Dr. Justice, until recently the microbiota underlying chronic rhinosinusitis have been poorly understood. UF is one of the few centers in the country using advanced gene sequencing and molecular diagnostic testing to identify less common bacteria. These newer techniques, which move beyond simple bacterial culture, have vastly improved our understanding of the diversity of the sinus microbiome.

“Chronic sinusitis is a disease that impacts over 30 million people in this country and there is no cure for it,” explains Justice. “Some of the best treatments of sinusitis can have significant long-term side effects for patients. As we work to better understand the microbiome and its alterations in each individual patient, our surgical techniques and comprehensive approach to the care of sinus patients allows us to provide culture-directed topical therapies that can improve patient quality of life while limiting the amount of systemic therapies they need. This can be a huge win for our patients."

UF is committed to furthering the base of knowledge about these pathogenic bacteria and their role in chronic rhinosinusitis.


http://www.jorl.net/otolaryngology/the-role-of-achromobacter-xylosoxidans-positive-sinus-cultures-in-patients-with-refractory-chronic-rhinosinusitis.pdf

http://www.alliedacademies.org/articles/the-role-of-serratia-marcescens-positive-nasal-cultures-in-patients-with-refractory-chronic-rhinosinusitis.pdf

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Leading-Edge Surgical Techniques Allow Patients to Breathe Better

Breathing is a basic life function. For individuals experiencing breathing difficulties due to congenital defects, external injury or medical procedures, such as prolonged intubation, airway reconstruction can be life-changing. University of Florida Health is one of the few centers in the southeastern United States with a team of specialists who have the expertise to rebuild airways in patients with complex breathing issues. These experts are highly skilled at open and endoscopic airway reconstruction.

According to Neil Chheda, M.D., chief of the division of laryngology in the department of otolaryngology, the approach at the University of Florida College of Medicine – part of UF Health, the Southeast’s most comprehensive academic health center – is multidisciplinary. “Our coordinated approach involves pulmonary, thoracic and anesthesiology specialists working together to ensure the best possible surgical outcomes for our patients.”

Patients benefit from the experienced surgical team at UF Health who perform hundreds of airway reconstructions each year. A large proportion of these procedures are completed endoscopically. “At our facility we’ve found that we can execute many procedures through the mouth, limiting the need for incisions in the neck,” explains Chheda.

The UF team is advancing new endoscopic procedures and techniques, providing nearly unlimited treatment options for patients with breathing issues. But care doesn’t end with surgery. Patients may need swallowing and voice rehabilitation after airway reconstruction. 

Concludes Chheda, “With our multidisciplinary team we can ensure that every patient receives the customized treatment he or she needs for as long as it’s needed.” Such individualized treatment is the cornerstone of care at UF Health.

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Collaborating for Better Outcomes in Patients with Fatty Liver Disease

Nonalcoholic fatty liver disease is a growing worldwide health problem and has been linked to common disorders such as Type 2 diabetes and cardiovascular disease. To improve outcomes for patients with fatty liver disease, Kenneth Cusi, M.D., FACP, FACE, chief of the University of Florida College of Medicine’s Division of Endocrinology, Diabetes and Metabolism, says, “We need a multidisciplinary approach with endocrinologists and hepatologists working together to get the upper hand in managing fatty liver disease.”

Cusi recently co-authored an article in the journal Lancet Diabetes & Endocrinology in which novel concepts related to the diagnosis, risk prediction and treatment of fatty liver disease are highlighted. The authors note that reliable noninvasive tools for diagnosing non-alcoholic fatty liver disease, or NAFLD, are needed, especially in patients with insulin resistance or diabetes, and that diagnosis is needed earlier because such comorbidities can strongly affect patients with advanced stages of the disease.

Still, Cusi and his colleagues point out that fatty liver disease can be identified when the patient is evaluated and can then be treated, calling for endocrinologists and hepatologists to work together to manage its deleterious hepatic and extrahepatic effects. Cusi explains, “Increased liver fat content is a stronger determinant of insulin resistance and cardiovascular disease than total body fat mass or even visceral fat mass.” Cusi notes that in NAFLD, the liver becomes an indicator of cardiometabolic health—a barometer that allows the identification of individuals, both with and without obesity, who are insulin-resistant and in a metabolic state of severe adipose-tissue dysfunction and lipotoxicity. Patients with Type 2 diabetes and NAFLD have the highest cardiometabolic disease risk.

In reviewing current treatments for fatty liver disease, the authors note most doctors are unaware that weight loss by lifestyle modification and bariatric surgery improve inflammation and liver fibrosis. In addition, certain pharmacological agents used to treat diabetes, particularly pioglitazone, offer significant benefit to patients reversing liver steatosis, inflammation and, on occasion, fibrosis.

At UF Health, endocrinologists and hepatologists are putting theory into practice by applying these emerging concepts in a collaborative environment focused on advancing management and improving outcomes for patients with fatty liver disease.

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The Florida Sleeve: Procedure introduced by UF Health is shown to be durable and effective in Marfan syndrome patients with aortic root aneurysm

A recent retrospective study published by a team at University of Florida Health has shown that the Florida Sleeve procedure — originally developed at UF approximately 15 years ago — is associated with encouraging results in Marfan syndrome patients with aortic root aneurysm. This valve-sparing technique involves protecting the aortic root with a Dacron sleeve while leaving native tissue in place.

Tomas Martin, M.D., a professor of surgery in the division of thoracic and cardiovascular surgery at the University of Florida College of Medicine and director of the UF Health Aortic Disease Center, is one of the pioneers of the Florida Sleeve procedure. He attributes the widespread national and international acceptance of this technique to the relative ease with which it can be conceptualized and performed compared with other valve-sparing techniques. “This study,” he notes, “shows that the Florida Sleeve is a viable option for patients with Marfan syndrome.” With a significant reduction in aortic insufficiency grade postoperatively, no in-hospital or 30-day death or stroke, 94% survival at 1 to 8 years, and 100% freedom from reoperation at 8 years, “our study shows that this technique is excellent for use in this group of patients, with good short- and mid-term results.”

Aortic root aneurysm is common in patients with Marfan syndrome and UF Health has been using the Florida Sleeve in these patients since the procedure was first developed . However, some surgeons have concerns about the long-term durability and dimensional stability of this repair, and about the potential need for reoperation in these patients. According to Martin, this analysis — which represents follow-up of the largest cohort of Marfan syndrome patients treated with the Florida Sleeve — shows that “none of the problems that people anticipated have happened.”

It is Martin’s hope that these encouraging results will lead to an increase in use of the Florida Sleeve in patients with Marfan syndrome and that, as a result, “more of these patients will have their native aortic valve saved.”

Reference

Aalaei-Andabili SH, Martin T, Hess P, Klodell C, Karimi A, Arnaoutakis G, Lee T, Beaver T. Florida Sleeve Procedure Is Durable and Improves Aortic Valve Function in Marfan Syndrome Patients. Ann Thorac Surg. 2017 Sep;104(3):834-839. doi: 10.1016/j.athoracsur.2017.01.044. Epub 2017 Apr 12.

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A multidisciplinary University of Florida Health team successfully performed transcarotid endovascular repair of an ascending aorta pseudoaneurysm in an elderly patient

A multidisciplinary team led by George Arnaoutakis, M.D., an assistant professor in the Division of Thoracic and Cardiovascular Surgery at the University of Florida College of Medicine, in collaboration with Martin Back, M.D., a professor in the Division of Vascular Surgery and Endovascular Therapy, recently reported  the successful transcarotid endovascular repair of a large ascending aorta pseudoaneurysm in a 77-year-old female patient.

The case was particularly challenging because, in addition to three prior sternotomies, numerous medical comorbidities and severe thoracoabdominal aortic tortuosity, the patient had a mechanical aortic valve. The team achieved complete exclusion of the pseudoaneurysm while preserving full function of the valve. The patient experienced no complications from the procedure and was discharged from the hospital five days postoperatively. Damage to the prosthetic valve was avoided by using the right common carotid artery for the endovascular approach, positioning the wire just above the mechanical aortic valve and administering adenosine to induce temporary asystole.

Traditional repair of ascending aortic pseudoaneurysm involves replacement of the ascending aorta with the patient on cardiopulmonary bypass and under deep hypothermic circulatory arrest. Delivery of aortic cuff endografts via conventional femoral access — a less invasive approach — has also been described. However, both of these approaches were contraindicated due to the patient’s previous sternotomies, extreme frailty and unfavorable iliofemoral anatomy.

Arnaoutakis notes, “This case illustrates the inventive use of existing technology that is typical of the clinicians at UF Health. We have access to all the latest technology and this allows us to offer innovative solutions for management of complex patients such as this. Few cases present this degree of challenge, but this technique is something that we now have in our armamentarium.”

In summarizing the team’s management of this patient, Arnaoutakis says, “This case is an example of the multidisciplinary, collaborative approach to the management of difficult cases that typifies the work at UF Health.” 

Reference

Millar et al. Transcarotid endovascular repair of ascending aorta pseudoaneurysm. Accepted for publication by the Journal of Cardiac Surgery.

 

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University of Florida Division of Thoracic and Cardiovascular Surgery demonstrates improved midterm survival with single-stage repair of aortic arch disease

A study led by cardiothoracic surgeons at the University of Florida College of Medicine has shown that, when compared to two-stage repair of the aortic arch, the frozen elephant trunk procedure, or single-stage hybrid aortic arch replacement, was associated with comparable risks of 30-day mortality and postoperative adverse events, such as stroke or paraplegia. Moreover, at two years, the single-stage procedure was associated with a significantly lower risk of endoleaks and higher survival.

According to Thomas Beaver, M.D., a professor and chief in the Division of Thoracic and Cardiovascular Surgery, these results confirm that “patients with complex thoracic aortic disease of the ascending arch and descending aorta can now be managed with a single operation that is comparable to our historical two-stage approach.”

UF Health physicians provide expertise, which is a product of the elderly demographic of their referral population and therefore a relatively high incidence of aortic pathology. The strong team-based approach to management of cardiovascular disease is characterized in the work at UF Health Shands, and Dr. Beaver’s focus on making treatment safer and easier for patients.

His aim in this patient population is to complete as much of the repair as possible in one surgery. This focus on the single-stage procedure, when anatomically feasible, means that all eligible patients receive a complete repair; use of the two-stage procedure is typically associated with a proportion of patients who do not present for the second surgery and therefore undergo only partial repair. 

Dr. Beaver and his team recently published their experience in the Annals of Thoracic Surgery. The UF Health Aortic Disease Center sees patients from throughout Florida and the Southeast.

Reference

Alhussaini M, et al. Neurologic Outcomes in Aortic Arch Repair with Frozen Elephant Trunk versus Two-stage Hybrid Repair. Accepted by Annals of Thoracic Surgery.

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Women's Ischemia Syndrome Evaluation – Coronary Vascular Dysfunction study sheds light on a highly prevalent but poorly understood condition

Several physicians from University of Florida Health have recently published findings that shed light on a poorly understood but highly prevalent condition. Drs. Petersen, Anderson, Handberg and Pepine are part of a research team aiming to understand the pathogenesis of heart failure in women that is characterized by signs and symptoms of ischemia, no obstructive coronary artery disease, no coronary microvascular dysfunction and preserved left ventricular ejection fraction.

This study, which forms part of the National Heart, Lung and Blood Institute-sponsored Women's Ischemia Syndrome Evaluation – Coronary Vascular Dysfunction, or WISE-CVD, program of research, has allowed the team to conclude that maladaptive remodeling of the left ventricle in the setting of prolonged hypertension underlies this condition.

According to John Petersen, M.D., an associate professor of medicine in the division of cardiovascular medicine at the University of Florida College of Medicine, these important mechanistic findings demonstrate what can be achieved when a dedicated group of researchers collaborates to explore unique questions. “By acquiring data on a large cohort of patients and then subclassifying them in different ways, we have been able to perform analyses that answer multiple questions,” he said, adding that the results of this analysis represent “one more piece of the puzzle” relating to heart failure in women.

Carl Pepine, M.D., a professor of medicine at University of Florida College of Medicine, has been involved with the NIH-funded WISE program since its inception. For him, this study is important because it provides deeper understanding of a well-recognized health disparity between men and women for which there is no known cause or treatment. “The No. 1 problem in women in the United States is high blood pressure,” he said, “and we speculate that a lifetime of increased blood pressure leads to this maladaptive remodeling.”

The current findings have led to the upcoming WARRIOR study, which is designed to determine whether intensive management of risk factors in this patient population will reduce the incidence of death and major adverse cardiovascular events. 

Reference

Elboudwarej O, et al. Maladaptive left ventricular remodeling in women: An analysis from the Women's Ischemia Syndrome Evaluation-Coronary Vascular Dysfunction study. Int J Cardiol. 2018;268:230-235.


Blog Featured Image: https://commons.wikimedia.org/wiki/File:Cardiac_mri_slice_bionerd.jpg used under GNU Free Documentation License

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University of Florida Health cardiologists show that socioeconomic status does not influence clinical outcomes after ventricular assist device implantation

A study  led by physicians at the University of Florida College of Medicine’s Division of Cardiovascular Medicine has shown that survival benefit after ventricular assist device, or VAD, implantation is not influenced by socioeconomic status, or SES. Survival, 30-day readmission, complications of device support and prolonged implant length of stay, or LOS, were among the outcomes unaffected by SES. 

“This study has shown that patients with low SES should not be denied evaluation for VAD simply on the basis of SES,” said Mustafa Ahmed, M.D., an assistant professor of medicine and the study’s lead author. One of the main advantages of this study compared with previous investigations involving the effect of SES on outcomes is that Dr. Ahmed’s team assessed SES using patient-level measures rather than census data.

This study is part of a broader program that aims to look beyond survival in VAD patients. As well as assessing quality metrics such as readmission and complication rates, cost-effectiveness and LOS, Dr. Ahmed plans to evaluate metrics related to patient-centered care, and carry out prospective studies to determine how to engage effectively with different types of patients, including those with low levels of health literacy. Dr. Ahmed’s team is also interested in developing robust models of psychosocial risk in order to improve preimplantation assessment of this important parameter.

These goals all feed into the overall aim of refining the identification of patients who are good candidates for VAD implantation and ensuring that all suitable patients are offered the opportunities afforded by referral to VAD teams, irrespective of SES.

“Patients with low SES often face barriers to referral for advanced treatments, such as VAD and transplantation,” said Dr. Ahmed. “Our study has shown that low SES does not increase risk and that these patients have the same benefits from VAD as other patients. Patients with low SES should be evaluated holistically in terms of their suitability for VAD.

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Mission: Prevention. University of Florida Health Leads the Way in Encouraging Lifestyle Modification to Prevent and Treat Heart Failure

Monica Aggarwal, M.D., FACC, an assistant professor of medicine in the University of Florida College of Medicine's Division of Cardiovascular Medicine and director of UF Health’s Integrative Cardiology and Prevention Program, is on a mission to teach physicians and surgeons about the importance of lifestyle factors in the prevention and management of heart failure.

In a recent publication in the Journal of the American College of Cardiology, Dr. Aggarwal reviewed the role of dietary composition and supplements, bodyweight, exercise and mindfulness in patients with heart failure and — most importantly — provided practical measures to make it easier for physicians to translate her recommendations into clinical practice.

Although preventive cardiology is a recognized specialty in the United States, Dr. Aggarwal believes there is an opportunity for greater focus on nutritional and lifestyle factors. “If you give patients the tools and the motivation to change, they will,” she says. But, both nationally and internationally, and among both specialists and nonspecialists, physicians’ level of education about nutrition and lifestyle is typically poor. As a result, their interaction with patients on these topics is suboptimal.                                                             

The preventive cardiology program Dr. Aggarwal is building at UF Health is already bringing her “great joy.” She has devised a new plant-based menu for patients admitted to the UF Health Heart & Vascular Hospital and regularly speaks to clinicians in other hospitals and the community about the importance of lifestyle in the prevention and management of cardiovascular disease. She is also creating information packages for hospitalized patients that will be distributed before discharge, educating patients about how to initiate beneficial lifestyle changes.

Dr. Aggarwal acknowledges the huge effort of the team at UF Health who are helping to make her preventive cardiology vision a reality. Her recent publication and the work that the team are doing at UF Health has generated considerable interest in the medical community and she is eager to see her ideas more widely adopted. “The more people we can get excited about this mission the better,” she said. 

Reference

Aggarwal M, et al. Lifestyle Modifications for Preventing and Treating Heart Failure. J Am Coll Cardiol. 2018 Nov 6;72(19):2391-2405. doi: 10.1016/j.jacc.2018.08.2160.

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University of Florida Health is a Leader in Cardiovascular Care

The University of Florida Health Divisions of Cardiovascular Medicine and Surgery are working together as leaders in the care of our patients in Florida and across the country. This team-based approach, in which cardiologists and cardiovascular surgeons work closely together to provide outstanding patient care, is facilitated by the outstanding new UF Health Heart & Vascular Hospital in Gainesville, Florida, a state-of-the-art facility designed around the needs of the patient. The new hospital has co-located clinics with cardiologists and surgeons, along with adjacent testing centers to facilitate “one-stop shopping.”

The UF Health Heart & Vascular Hospital is built with an “eye to the future” as five of the 15 new operating rooms are ‘hybrid’ and allow surgery and advanced imaging for minimally invasive and catheter-based therapy.

An example of this new approach to surgical care is described by Dr. George Arnaoutakis, a cardiac surgeon, and Dr. Martin Back, a vascular surgeon, in their case report [JD2] titled “Transcarotid endovascular repair of an ascending aorta pseudoaneurysm”. This successful percutaneous catheter-based aneurysm treatment avoided a major open heart procedure, allowing the patient a quicker recovery.  

For several years our team has been a leader in hybrid endovascular surgery for complex aortic arch procedures. Our team of cardiac surgeons, including Drs. Tomas Martin, Thomas Beaver and George Arnaoutakis, work closely with our vascular surgery colleagues, Drs. Huber, Upchurch, Back and Fatima. This month we published an updated series of single-stage hybrid total aortic arch replacement in Annals of Thoracic Surgery article. We have found a single-stage approach compares favorably with the historic two-stage open repair in suitable patients. For a further update and to learn more about thoracic stent grafts or TEVAR (Thoracic Endovascular Aortic Repair), please see our recently updated Medscape overview.

This type of surgical innovation has been a hallmark at UF Health. One example that continues to stand out is “The Florida Sleeve,” a surgical procedure to repair functional type I aortic insufficiency from aortic root aneurysms developed 15 years ago here at UF Health by a team by Tomas Martin, M.D., who is now Professor and Director of the UF Health Aortic Disease Center. The Florida Sleeve has broadened the availability of aortic valve repair for patients with aortic root aneurysms so more patients can avoid a replacement. For an update on The Florida Sleeve Repair see our most recent article on our extensive experience in Marfan syndrome patients study in The Annals of Thoracic Surgery.

Stay tuned for more updates from UF Health on our innovative clinical care and ongoing research. We welcome visitors to our new Heart and Vascular Hospital in Gainesville – and we look forward to hearing from you! 

 

Sincerely,

Jamie Conti, M.D., FACC
Professor and Chair
UF Department of Medicine

Gilbert Upchurch Jr., M.D.
Edward R. Woodward Professor and Chair
UF Department of Surgery

Juan Aranda Jr., M.D., FACC
Professor and Interim Chief
UF Division of Cardiovascular Medicine

Thomas Beaver, M.D., MPH
Professor and Chief
UF Division of Thoracic and Cardiovascular Surgery

Thomas Huber, M.D., Ph.D.
Professor and Chief
UF Division of Vascular Surgery

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University of Florida Health Fights Obesity with Multidisciplinary Approach

Researchers at University of Florida Health are using a multidisciplinary approach to fight obesity. Experts from surgery, cardiology, pulmonology, gastroenterology, nephrology, internal medicine, nutrition and psychiatry collaborate to offer comprehensive, minimally invasive bariatric surgeries at the UF Health Weight Loss Surgery Center. “Through our research and clinical practice, our bariatric surgery center is well on its way to becoming the best, not just in the state of Florida but also in the Southeast region,” said center director Jeffrey Friedman, MD, FACS. The center holds joint accreditation from the American College of Surgeons and the American Society for Metabolic and Bariatric Surgery.

Physicians see a large volume of patients for consultation, including adolescents and children. The center at UF Health Shands Hospital offers gastric bypass and laparoscopic sleeve gastrectomy as well as revision and corrective surgeries to address complications from previous surgeries. Friedman notes, “Patients from all over the state who have had bariatric surgery complications are referred to us for corrective procedures.”

The center has an active research program that’s funded by the National Institutes of Health. Researchers at UF Health are working to increase options for these patient who are often disqualified from heart transplant surgery due to obesity. A study published in the journal Surgery for Obesity and Related Diseases in September 2018 demonstrated the safety of laparoscopic sleeve gastrectomy in patients who had morbid obesity and end-stage heart failure requiring left ventricular assist device, or LVAD, support. According to the author, to our knowledge, this is the largest reported series of bariatric surgery performed on heart failure patients with LVAD support for the purpose of increasing eligibility for cardiac transplantation. Laparoscopic sleeve gastrectomy lowered body mass index in the majority of these patients, making them eligible for a heart transplant. Friedman adds, “In some cases, patients no longer need a transplant because weight loss restores their cardiac function.”

Looking ahead, Friedman sees a place for bariatric surgery in the treatment of diabetes and points to the American Diabetes Association recommendations for the use of metabolic surgery to manage Type 2 diabetes. “With multidisciplinary clinical expertise and a strong focus on research, UF Health provides state-of-the-art care for obesity and continues to advance the field to improve patient health outcomes,” says Dr. Friedman.

 

References

RB Hawkins, K Go, SL Raymond, A Ayzengart, J Friedman, et al. Laparoscopic sleeve gastrectomy in patients with heart failure and left ventricular assist devices as a bridge to transplant. Surg Obes Relat Dis. 2018;14:1274-1275

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The Search Continues for a Noninvasive Test for Nonalcoholic Steatohepatitis that Works in the Real World

Nonalcoholic steatohepatitis, or NASH, is a serious progression of nonalcoholic fatty liver disease. Percutaneous liver biopsy is currently the gold standard for diagnosing and staging nonalcoholic steatohepatitis, but it is frequently avoided due to the high cost, potential risk to the patient and lack of approved treatments once diagnosis is confirmed. According to Fernando Bril, M.D., an assistant professor in the University of Florida College of Medicine’s Division of Endocrinology, Diabetes and Metabolism, “This is a bidirectional problem. We need better diagnostic tools to identify nonalcoholic steatohepatitis, but we also need a better way to treat it once we find it. That’s why UF Health is committed to meeting both challenges.”

Bril works alongside a team of several researchers led by Kenneth Cusi, M.D., who are searching for an effective noninvasive diagnostic test for nonalcoholic steatohepatitis at UF Health. They have investigated several methods in the past, including the use of biomarkers such as plasma cytokeratin-18 and the One Way Liver Metabolomics test, and the use of ultrasound. Most recently, they investigated the use of a commercially available blood test that is a combination of four different noninvasive biomarker panels, including one for diagnosing steatosis, two for diagnosing necrosis and inflammation, and one for diagnosing fibrosis. All four panels were developed and validated originally in nondiabetic cohorts. Cusi’s team assessed them in combination to see how they would perform in a large cohort of patients with Type 2 diabetes, reflecting a more real-world setting for diagnosing nonalcoholic steatohepatitis.

The study, which was conducted in 220 patients, found that many of the panels may underperform in patients with Type 2 diabetes. The results suggest that patients with Type 2 diabetes may require different panels specifically developed for this patient population to diagnose nonalcoholic steatohepatitis.

Bril and his colleagues at UF Health will continue their search for an effective diagnostic test for nonalcoholic steatohepatitis while they also continue working on effective treatments.

 

References

Bril F, Ortiz-Lopez C, Lomonaco R, et al. Clinical value of liver ultrasound for the diagnosis of nonalcoholic fatty liver disease in overweight and obese patients. Liver Internat. 2015;35:2139-2146.

Bril F, Millán L, Kalavalapali S, et al. Use of a metabolomics approach to non-invasively diagnose non-alcoholic fatty liver disease in patients with type 2 diabetes mellitus. Diab Obes Metab. 2018;20:1702-1709.

Bril F, McPhaul MJ, Caulfield MP, et al. Performance of the SteatoTest, ActiTest, NashTest, and FibroTest in a multiethnic cohort of patients with type 2 diabetes mellitus. J Invest Med. 2018;0:1-9: doi:10.1136/jim-2018-000864

Cusi K, Chang Z, Harrison S, et al. Limited value of plasma cytokeratin-18 as a biomarker for NASH and fibrosis in patients with non-alcoholic fatty liver disease. J Hepatol. 2014;60: 167-174.

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Flipping the Metabolic Switch to Fight Obesity

Calorie restriction without malnutrition has been shown to impart a number of health benefits in addition to weight loss in overweight adults. However, many adults have difficulty sustaining calorie restriction long-term. Intermittent fasting is an increasingly popular alternative to sustained calorie restriction, and has been shown to impart similar benefits of weight loss and improvement in cardiovascular health. Troy William Donahoo, M.D., FTOS, a clinical associate professor at the University of Florida College of Medicine’s Division of Endocrinology, Diabetes and Metabolism, and his colleagues recently published a widely cited article in which they propose the mechanism by which intermittent fasting works.

Donahoo states, “Humans in hunter-gatherer societies were intermittently subjected to times of little or no food. For energy, their metabolism learned to adapt by quickly switching from lipidogenesis or fat storage to fat mobilization. The history of fasting for medical purposes dates back to the ancient Chinese, Greek and Roman physicians.” From their extensive literature search, Donahoo and colleagues found that intermittent fasting regimens flip a metabolic switch in the body, promoting short-term ketogenesis to transform fat into energy while preserving muscle mass and function.

Donahoo puts these findings into perspective, “The obesity epidemic in America, which certainly affects us right here in Florida, is getting worse. Clinicians are treating patients who are obese and battling comorbidities, such as Type 2 diabetes, insulin resistance and dyslipidemia. Employing intermittent fasting regimens to flip the metabolic switch from fat storage to fat mobilization gives clinicians a valuable tool to help improve body composition in patients who are overweight or obese, with many inherent potential health benefits.”

UF Health is committed to furthering the base of knowledge into how intermittent fasting may help to optimize physiological function, enhance performance and slow aging and disease processes, including exploring biomarkers of the metabolic switch.

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Tiny Fireball: Riley

Riley CampbellErin Campbell was only in her second trimester when she found out that the course of her entire pregnancy would be altered.

At 18 weeks, Erin’s baby girl, Riley, was diagnosed with hypoplastic left heart syndrome, or HLHS, a birth defect that affects normal blood flow through the heart, as the left side of the heart does not form correctly.

“My husband and I were really broken up about it,” Erin said. “You can’t change the situation, and we just made the best out of it. We’ll do whatever we can for our little girl.”

Erin and her husband, Rory, immediately delved into research and went to three different hospitals for a second and third opinion. They were in search for the greatest doctor and surgeon to give Riley the best chance. Their research led them to UF Health Shands Children’s Hospital in Gainesville, Florida.

“It was an easy decision,” Erin said. “There’s a family-feel, and it didn’t feel processed. It was more of a one-on-one experience, and we had a lot of attentiveness with the doctors and nurses.”

The Campbell family is from Fort Pierce, Florida, about three-and-a-half hours from Gainesville, but Erin said the time spent travelling was no problem if it meant receiving the best care for Riley. Seeing Jennifer Co-Vu, M.D., the director of the single ventricle and fetal cardiac programs at the UF Health Congenital Heart Center, and Mark Bleiweis, M.D., the director of the UF Health Congenital Heart Center and the chief of congenital cardiothoracic surgery at UF Health, made every drive worth it.

“We clicked with Dr. Co-Vu almost instantly,” Erin said. “We’re cut from the same cloth. It’s so nice and refreshing to have that in more of a personal setting.”

Riley had her first surgery, known as a Norwood procedure, when she was just 6 days old. The operation reconstructs the heart to allow the right side to become the main pumping chamber instead of the left side. The Campbells were in the pediatric cardiac intensive care unit for less than a month when they got to bring Riley home.

“We knew that when she [Riley] was in my belly that she was a fighter,” Erin said. “She’s chill when she wants to be, but she’s a fireball at the same time.”

Riley is now 7-weeks-old, and Erin said she only has to visit the children’s hospital once every two weeks since her daughter is doing so well.

Riley is at home with her furry brother and sister, Brody and Stella. The Australian shepherds stay by her side as she grows stronger each day.

“They are just smitten with her,” Erin said.

Riley is at home with her furry brother and sister, Brody and Stella. The Australian shepherds stay by her side as she grows stronger each day.

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Timing of Adjuvant Mitomycin C Administration May Impact Bladder Cancer Recurrence Following Nephroureterectomy

Researchers at University of Florida Health are among the first investigators to evaluate the impact of the timing of intravesical mitomycin C administration on the rate of bladder tumor recurrence following radical nephroureterectomy for upper tract urothelial cancer.

Paul Crispen, M.D., an associate professor in the department of urology at UF, was an author of this groundbreaking study, published in Bladder Cancer in October 2018. According to Crispen, “These results may have practice-changing implications.”

About 80,000 people are diagnosed with urothelial cancer in the United States each year, and a majority of cases occur in the bladder. Upper tract urothelial cancer is rare, accounting for less than 10 percent of malignancies in the genitourinary tract. Radical nephroureterectomy with bladder cuff excision remains the standard surgical approach for high-risk patients and for lower-risk tumors that cannot be managed endoscopically. Unfortunately, bladder tumor recurrence is common, with rates up to 47 percent.

Crispen and colleagues retrospectively reviewed data for 51 adult patients who underwent radical nephroureterectomy for upper tract urothelial cancer, received intravesical mitomycin C during their perioperative course and had cystoscopic surveillance follow-up. The primary endpoint was bladder tumor recurrence rate within the first year after surgery.

The investigators categorized patients into two groups based on timing of intravesical mitomycin C administration:

  • Patients who received mitomycin C intraoperatively or in the recovery room on the day of surgery
  • Patients who received mitomycin C on the first day after surgery or later

The investigators found that earlier instillation of mitomycin C was associated with a decreased bladder tumor recurrence rate. The estimated probability of one-year recurrence was 16 percent for patients who received mitomycin C on the day of surgery and 33 percent for those receiving the drug on postoperative day one or later (log rank test P value = 0.09).

Crispen concludes, “While these results suggest the timing of intravesical chemotherapy administration may have an impact on the rate of bladder tumor recurrence, we need more evidence from prospective trials before we change current practice.” 

Crispen and UF colleagues are currently enrolling patients in a Phase 2 trial at the University of Florida, the first prospective study of its kind to attempt to identify the importance of timing of mitomycin C administration relative to bladder tumor recurrence rate following radical nephroureterectomy. The ClinicalTrials.gov Identifier is NCT03658304. This study may provide answers to the question, “Does timing matter?”

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University of Florida Researchers Add to the Knowledge Base About Quinolone Toxicity

Investigators at the University of Florida are at the forefront of research into toxicities associated with commonly used ear medications, notably ototopical quinolones. Patrick Antonelli, M.D., FACS, chair of the UF College of Medicine Department of Otolaryngology, has been an author of several studies that have shown an association between quinolone use and delayed tympanic membrane healing and increased risk of perforations requiring tympanoplasty.

In one analysis published in Clinical Infectious Diseases in 2017, Antonelli and UF colleagues retrospectively analyzed insurance data for 96,595 children to compare the rates of eardrum A new UF Health study questions the safety of antibiotic ear drops prescribed to children after ear tube surgery.perforations after use of two commonly used ear drops, quinolones and neomycin, following tympanostomy tube placement. They found that children who received quinolone ear drops after tube placement were 60 percent more likely to develop eardrum perforations that required surgical repair compared with children receiving neomycin ear drops. The study also suggested that the concomitant use of steroids further increased the risk of tympanic membrane perforations.

“Quinolones have been considered to be safe largely because of a perceived absence of undesirable side effects, especially with regard to a lack of toxicity in the inner ear,” explains Antonelli. “Our research, however, suggests that we must be ever-vigilant in our use of quinolone ear drops until a safer alternative becomes available.”

Antonelli and his team at UF Health also have conducted several experimental animal studies to examine the effect of different antibiotic eardrops on the tympanic membrane. In a mouse model, ototopical quinolones reduced fibroblast viability and collagen and alpha-tubulin protein levels. In a rat model, ototopical quinolones delayed tympanic membrane healing in a drug-specific manner, with ciprofloxacin having a greater impact than ofloxacin. 

The research by the physician scientists in the UF Department of Otolaryngology will help advance our knowledge of quinolone toxicity.

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University of Florida Health Advances Care for Patients with Hepatitis C

Researchers at University of Florida Health have played a pivotal role in developing new treatments and improving health outcomes for patients with hepatitis C. David Nelson, M.D., interim senior vice president of health affairs at the University of Florida and president of UF Health, is a professor of medicine and a nationally recognized expert in liver diseases.

“UF Health is home to a large hepatitis C observational cohort study and is leading two large, multi-center randomized controlled trials on hepatitis C,” said Nelson. Clinical research at UF Health has not only advanced drug discovery  in the field, but is now uncovering real-world evidence  on the economic and clinical impacts of hepatitis C therapies. UF Health’s latest findings from a study that compares the top hepatitis C treatments in real-world populations, which is funded by the Patient-Centered Outcomes and Research Institute, will be presented in Vienna in April 2019.

Nelson’s leadership in hepatitis C research was recognized in 2013 with the Clinical Research Forum’s Top Ten Clinical Research Achievement Award. He also plays an active role in developing national and international guidelines for the management of hepatitis C. He is the U.S. representative on the World Health Organization’s hepatitis C virus guidelines committee and has co-authored the U.S. guidelines for hepatitis C treatment and the Clinical Pharmacogenetics Implementation Consortium guidelines on genomic-guided hepatitis C virus therapy. 

Nelson directs the UF Clinical and Translational Science Institute at UF Health, which is focused on accelerating the translation of scientific discoveries from the bench to the bedside to improve patient care across a wide range of diseases. The institute’s funding through two National Institutes of Health Clinical and Translational Science Awards totaling more than $42 million makes UF Health a nationally recognized hub for translational science.

“UF Health has played an important role in drug discovery for hepatitis C treatments and we’re now in a position to uncover the real-world impact of these treatments to improve patient health outcomes,” said Nelson.

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University of Florida Health Leads the Way in Minimally Invasive Endoscopic Procedures

University of Florida Health offers an individualized approach to care for patients suffering from gastrointestinal disorders. At UF Health, patients have access to novel interventions, such as minimally invasive endoscopic procedures, that avoid open surgery and reduce recovery times. “Not every procedure or intervention applies to every patient. The key is to identify who will benefit the most from a specific intervention — that’s the kind of care that we provide,” says Dennis Yang, MD, an assistant professor of medicine in the Division of Gastroenterology, Hepatology and Nutrition.

Due to advances in technology, a great number of gastrointestinal lesions that once required open surgery for removal can now be resected endoscopically. Gastroenterologists at UF Health have the clinical expertise and skill to perform these procedures and have been moving away from open surgical interventions when a minimally invasive resection is better suited to the particular patient.

UF Health is helping to advance the endoscopic diagnosis of precancerous lesions in the gastrointestinal tract. The first prospective, open-label study to directly compare two endoscopic ultrasound methods for the diagnosis of neoplastic pancreatic cysts demonstrated that needle tissue biopsy had a higher diagnostic accuracy than fine needle aspiration. “Our research has uncovered a novel diagnostic approach for neoplastic pancreatic cysts,” says Yang. UF Health coordinated this multicenter study and Yang served as principal investigator. Findings from this study were published in Clinical Gastroenterology and Hepatology in November 2018.

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University of Florida Researchers Complete a Preclinical Study Using Tumor Derived RNA Nanoparticle Vaccines for Head and Neck Cancer

Researchers at the University of Florida College of Medicine Department of Otolaryngology examined the anti-tumor activity of tumor-derived RNA nanoparticles in an oral cavity squamous cell carcinoma murine model. The research was conducted in collaboration with Elias Sayour, M.D, Ph.D., in the UF Brain Tumor Immunotherapy Program. The results were presented at the American Association for Cancer Research meeting in November 2018.

According to Natalie Silver, M.D., M.S., an assistant professor in the division of head and neck oncologic surgery in the Department of Otolaryngology at the university and one of the investigators for this project, UF is one of the few institutions in the world that has developed clinically translatable nanoparticles that can be loaded with RNAs encoding for tumor neoantigens. This is the first step in generating personalized cancer vaccines.

In combination with immunotherapy, personalized cancer vaccines may help activate the immune system to overcome resistance to checkpoint inhibitors, the standard of care for patients with platinum refractory recurrent/metastatic head and neck cancer. “Nearly 85 percent of patients with recurrent disease become resistant to checkpoint inhibitors,” says Silver. “Reprogramming the immune system with personalized RNA nanoparticle vaccines may offer a solution.”

Silver and her colleagues administered mice weekly tumor-derived RNA nanoparticle vaccines derived from a murine oral cavity squamous cell carcinoma line. Tumor-infiltrating lymphocytes and immune cell populations in the spleen were analyzed with flow cytometry. Mice receiving the tumor-derived RNA nanoparticle vaccine had significantly decreased tumor growth compared with mice receiving nanoparticles alone. In addition, treatment with tumor-derived RNA nanoparticle vaccines significantly reduced regulatory T cells and significantly increased cytotoxic and memory T cells in spleen and tumor tissues.

Silver says, “Our findings have potential clinical and translational implications. We may be able to use this technology in humans to activate and manipulate the immune system, against head and neck cancer. Through RNA engineering we are able to further personalize vaccine formulations.”

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University of Florida Researchers Investigate Chronic Opioid Use in Patients with Head and Neck Cancer

At a time when overdose deaths from prescription and non-prescription opioids have reached epidemic proportions, researchers at the University of Florida College of Medicine’s Department of Otolaryngology — part of UF Health, the Southeast’s most comprehensive academic health center — have taken a closer look at chronic opioid use in patients with oropharyngeal squamous cell carcinoma. The retrospective analysis, which will be published in Laryngoscope in early 2019, found that an alarming number of patients were chronic opioid users three months after treatment.

Nearly 52,000 people are diagnosed with cancer of the oral cavity and pharynx each year in the United States. According to Natalie Silver, M.D., M.S., an assistant professor in the division of head and neck oncologic surgery at UF, “Up to 85 percent of patients with head and neck cancer report significant pain at the time of diagnosis. Opioids are the cornerstone of treatment for both acute and chronic pain management for these patients.” The current opioid crisis in the United States, where more than 100 people die every day from an opioid overdose, highlighted the need to look at long-term opioid use in this patient cohort.

Investigators retrospectively studied 198 patients who underwent curative radiotherapy for oropharynx cancer at UF Health from 2012-2017. They found that more than 50 percent of the patients treated with radiation in this cohort continued to use opioids three months after the conclusion of treatment. These data were presented at the American Head and Neck Society 2018 Annual Meeting.

Silver and her colleagues found significant predictors for chronic opioid use to be pre-treatment opioid use, history of depression, age ≤ 62 and presence of a pre-existing chronic pain condition. Human papillomavirus, or HPV, and p16, a surrogate marker for HPV, negative tumor status also was a predictor. 

This study serves as the foundation for additional research to better define at-risk patients and to identify strategies to manage patients’ pain without increasing the risk of chronic opioid use.

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OR Team Top Among Peers

UF Health Shands Perioperative Services department and the UF Health Shands Hospital OR

The UF Health Shands Perioperative Services department and the UF Health Shands Hospital OR recently received the CORE Award from the Association of perioperative Registered Nurses. Ours is only the third OR in the nation and the first in Florida to receive this recognition. The award stands for Committed to OR Excellence and is given to teams for exceptional care and improved outcomes.

“To achieve a high level of sustained excellence for an award like this, you have to have a very engaged and committed team,” said Ed Jimenez, UF Health Shands CEO. “Our perioperative staff have worked hard to improve patient care and their results have been exemplary.”

The team cares for pediatric and adult patients during surgery. They help manage surgical tools in the OR, assist faculty throughout surgery and serve as patient advocates.

The award criteria include demonstrated excellence in effective communication, knowledge, evidence-based practice and processes and patient outcomes. The award reflects a commitment to clinical quality and patient safety in the OR.

“Our nurses play an integral role in the patient experience, and we’re proud of their passion for providing high-quality care,” said Irene Alexaitis, D.N.P., R.N., NEA-BC, UF Health Shands Hospital chief nursing officer and Nursing and Patient Services vice president. “Their compassionate service, dedication to quality outcomes and interdisciplinary approach is what sets our organization apart, and this achievement is a testament to that.”

Michele Brunges, M.S.N., R.N., CNOR, UF Health Shands Perioperative Services director, led the application committee and was honored to work alongside such a talented team.

Brunges said, “I want the team to feel proud of themselves. This award is for them to take a step back and recognize their hard work and contributions.”

Thank you to our UF Health Shands AORN CORE committee members for all of their hard work.

— Michele Brunges, R.N., M.S.N., CNOR

— Sharon Batie, R.N., M.S.N., CNOR

— Theresa Hughes, R.N., M.S.N., CNOR

— Janice Rivera, R.N.

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Weighty Choices: Selecting Optimal G-CSF Doses for Stem Cell Mobilization to Optimize Yield

Nosha Farhadfar, MD, and colleagues at University of Florida Health Cancer Center led a study conducted by an international team of researchers using data reported to the Center for International Blood and Marrow Transplant Research. The study led to important, practice-changing discoveries about obese and morbidly obese stem cell donors, which she presented at the American Society of Hematology, or ASH, Annual Meeting in December 2018. Allogeneic stem cell transplant is the only curative option for many patients with leukemia or lymphoma. Obese and morbidly obese individuals make up about 40% of the U.S. population, and this percentage is expected to grow in the near term. Thus, understanding the impact that obesity has on stem cell donation is critical. 

In a landmark study that involved over 20,000 unrelated peripheral blood stem cell donors, Farhadfar and colleagues identified an important difference between obese/morbidly obese stem cell donors and donors with a lower body mass index: The stem cell yield is significantly higher among obese/morbidly obese donors. This may be due to the chronic low-grade inflammation present in obese/morbidly obese individuals, leading to an increase in the number of circulating progenitor cells.

Prior to stem cell collection, donors are injected with a medication known as granulocyte colony-stimulating factor to mobilize their stem cells from the bone marrow to the peripheral blood, to increase the yield of stem cell collection. Granulocyte colony-stimulating factor agents are dosed by body weight; thus, heavier donors receive higher doses. However, the researchers observed that increasing the daily granulocyte colony-stimulating factor dose above 780 g/day for obese donors and 900 g/day for morbidly obese donors did not increase stem cell yield. Furthermore, obese/morbidly obese donors were more likely to experience treatment–associated toxicity, including pain, fatigue and insomnia. Farhadfar observes, “There is a maximum effective G-CSF dose for peripheral blood stem cell mobilization in obese and morbidly obese donors where higher doses add no additional benefit and may result in more complications.”

These results suggest that weight-based doing of granulocyte colony-stimulating factor is unnecessary for obese/morbidly obese individuals, as higher doses do not improve stem cell yields and contribute to toxicity. Thus, to improve the quality of life of obese/morbidly obese unrelated stem cell donors, “Consideration to reduce granulocyte colony-stimulating factor doses in obese and morbidly obese donors should be evaluated to allow for improved donor safety without compromising apheresis efficiency,” says Farhadfar.

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University of Florida Health Cancer Center is a Leader in Cancer Care

Dear Colleagues,

The University of Florida Health Cancer Center is dedicated to providing Florida residents with leading-edge cancer care and original research for the prevention, early diagnosis, and treatment of cancer. Cancer is the leading cause of death for Floridians, and our state has the second highest cancer mortality rate in the nation. Furthermore, the age group at highest risk of developing cancer—65 years and older—is projected to grow by 25% over the next two decades. Therefore, our efforts to serve Florida have never been more critical. 

The UF Health Cancer Center, consisting of 230 researchers, clinicians, and educators, offers a comprehensive care model, with 12 multidisciplinary cancer programs featuring advanced treatment options, including chemotherapy, minimally invasive surgery, robotic surgery, radiotherapy, and participation in clinical trials. We are the Southeast’s most comprehensive academic health center—boasting six health colleges, nine research institutes/centers, two teaching hospitals, two specialty hospitals, and a host of medical practices and outpatient services across north central and northeast Florida. This multidisciplinary membership enables exciting collaborations and encourages translation of basic laboratory findings to novel curative and preventive therapies.

Currently, there is only one National Cancer Institute designated center in Florida; the UF Health Cancer Center aims to become the second, and over the last five years, has been progressing along the four major NCI research initiatives to do so:

  • Basic research: The UF Health Cancer Center has reaffirmed its commitment to basic science and understanding how (and why) cancer develops.
  • Clinical research: Through improvement in design and execution, the UF Health Cancer Center has doubled clinical trial accrual within two years, and has joined the Pancreatic Cancer Action Network (PANCAN) and the NCI Experimental Therapeutics Clinical Trials Network (ETCTN).
  • Population-based research: The UF Health Cancer Center addressed population science goals by evaluating and addressing cancer pain, weight loss, radiation toxicity, palliative care, and equity in outcomes.
  • Translational research: The UF Health Cancer Center is engaged in research across medical and scientific disciplines, from immunotherapy for brain tumors to developing new anti-cancer agents from sea creatures.

At this unique intersection of research, education, and treatment, the UF Health Cancer Center is striving to find tomorrow’s answers for today’s patients. Recent achievements include $28 million in cancer-related funding, doubling of peer-reviewed funding in the last five years, and developing the OneFlorida data trust, a database of 14 million anonymized patient records including many cancer patients that can illuminate trends in cancer incidence, risk factors, mortality and treatments.

Now that you’ve learned more about us, please consider voting for us for the U.S. News & World Report rankings for cancer.

Sincerely,

Jonathan Licht, M.D.,
Director of the UF Health Cancer Center

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University of Florida Health Researcher Combines DNA Sequencing and Cloud Computing to Match Novel Treatments and Leukemia Patients

The University of Florida Health Cancer Center collaborated with the Oregon Health and Sciences University and dozens of other academic medical centers across the country to   evaluated genomic abnormalities in acute myeloid leukemia at a depth that has illuminated new therapeutic strategies.

Christopher Cogle, MD, a physician-scientist in the Division of Hematology and Oncology of the University of Florida Department of Medicine, was an author of a groundbreaking study published in Nature in October 2018, in which researchers generated a large dataset that can be leveraged to address clinical, genomic, transcriptomic, and functional analysis of the biology of AML. According to Dr. Cogle, “This study started with a deep curiosity about leukemia and ended with major discoveries about the underpinnings of leukemia that led us to develop new treatment strategies for our patients.”

About 21,000 people are diagnosed with AML in the United States each year, and about 10,000 die from the disease. It is a heterogeneous disorder, with several genetic classes, multiple cellular subtypes, and nearly 2,000 somatically mutated genes discovered thus far. These complex mutational patterns within and across patients make the implementation of targeted therapies challenging. Despite extensive research efforts, few new therapies have been developed, and the standard of care has remained largely unchanged for the past 30-40 years.

The project described in the Nature publication evaluated a total of 672 specimens from 662 patients from the Beat AML initiative. By conducting exome sequencing, RNA sequencing, and ex vivo drug sensitivity, the group identified both mutations in genes not previously associated in AML patients and novel correlations between gene signatures and drug responses. Furthermore, the integration of these datasets has revealed new markers and mechanisms of drug sensitivity and resistance to explore.

The data have been released to the public, and can be accessed via Vizome, a new online viewer. Thus, the dataset combines two of the greatest advances in society in recent decades, DNA sequencing and cloud computing, Cogle describes. While each of these technologies have much to offer on their own, the combination is more powerful in the manner in which it illuminates novel pathway in which to pursue new treatment options for patients with leukemia.

Precision medicine, and more specifically precision oncology, aims to tailor cancer therapy to individual patients. However, oncology drug trials frequently fail because the “wrong” patients—i.e., those with unidentified, yet incorrectly matched, genetic and molecular disease characteristics—are enrolled. This new dataset allows smarter design of clinical trials by employing “precision recruiting” to better match patients and drugs.  These large data sets require the coordination of efforts of investigators across the country and enrolment of large number of patients.

Dr. Cogle concludes, “The results of this study flip precision oncology around; in addition to finding the right drug for the patient, these discoveries enable us to find the right patient for the drug.”

Reference

Tyner JW, Tognon CE, Bottomly D, et al. Functional genomic landscape of acute myeloid leukemia. Nature. 2018;562(7728):526-531.

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University of Florida is the premiere center in the state with a comprehensive program focused on malignant and benign skull base tumors

The University of Florida Department of Otolaryngology at the UF College of Medicine – part of UF Health, the Southeast’s most comprehensive academic health center – is one of the few centers in the Southeastern United States with a comprehensive, multidisciplinary program focused on children and adults with malignant and benign skull base tumors. Comprising neurosurgeons, otolaryngologists, radiologists, endocrinologists, radiation oncologists and medical oncologists, the UF team is recognized as experts at diagnosing and treating the broad range of anterior and lateral skull base tumors.

Treating skull base tumors is challenging due to their location deep within the head, near critical nerves and blood vessels. Through the integration of leading-edge technologies, such as virtual surgical planning and 3D modeling, the UF team aims to safely remove tumors in this delicate and complex region using the least-invasive methods possible. One technique widely used by the specialists at UF Health is the minimally-invasive endoscopic endonasal approach, by which the tumor is removed entirely through the nose, without external excisions. This method enables the UF skull base team to gain access to and successfully treat tumors that even now in centers without endoscopically trained surgeons are extremely morbid.

Traditionally, whether a neurosurgeon or otolaryngologist treated lesions of the skull base, they were limited by exposure, meaning the need to make large external excisions, or visualization using the naked eye or a microscope, explains Brian Lobo, M.D., an assistant professor in the Division of Rhinology and Skull Base Surgery at the University of Florida who is an expert in advanced rhinology and endoscopic skull base surgery. “Today, our patients benefit from the collaboration between Rhinologists, Neuro-Otologists, and Neurosurgeons, which has made endoscopic endonasal surgery the standard of care for many anterior skull base lesions and enables us to avoid weeks of rehabilitation, post-operative neurological deficits, and a protracted inpatient stay in most cases.”

With the comprehensive skull base program now available at UF Health, patients in Southern Georgia, and Central Florida no longer have to travel long distances to receive world-class care.  Dr. Lobo notes that the collaboration of otolaryngology and neurosurgery has increased the number of patients he is able to serve. “Before arriving and helping establish the program, we removed almost no pituitary tumors endoscopically. Today we are fortunate to serve about five patients a month.”

The skull base specialists at UF Health perform delicate procedures every day, with one aim: to enable patients to have the best outcomes possible. 

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Head-on Approach to a Growing Crisis

Dear colleagues,

At University of Florida, the Division of Endocrinology, Diabetes and Metabolism is conducting leading-edge research to learn more about the link between obesity, diabetes and fatty liver disease, and innovating new approaches to diagnosis, management and treatment.

There is an epidemic of obesity and Type 2 diabetes in America, and it’s mounting to a crisis of associated and progressive disorders, including liver damage and cirrhosis. By 2030, it is estimated that 65 million more adults in the U.S. will be obese than in 2010. In Florida, the overall obesity rate among adult health care users between the ages of 20 and 79 years old is estimated to be 37%. It’s therefore no surprise that two often overlooked complications of obesity and diabetes are quickly becoming major health concerns here in Florida and across the country: nonalcoholic fatty liver disease, or NAFLD, which occurs in approximately two-thirds of patients who are obese, and nonalcoholic steatohepatitis, or NASH, which is the more severe form of fatty liver disease and predicted to be the leading cause of liver cirrhosis and transplantation by 2020.

Clinicians often miss the opportunity to diagnose fatty liver disease until it’s too late and has progressed into life-threatening cirrhosis. Early detection is the key and can lead to lifesaving early interventions, such as lifestyle changes, weight loss and pharmacologic treatment.

At UF Health Shands, we’re exploring new strategies to help primary care physicians and endocrinologists become more aware of and proactive in the diagnosis and treatment of obesity and diabetes, as well as exploring multidisciplinary treatment approaches in which endocrinologists and hepatologists work together collaboratively to manage fatty liver disease.

We found that pioglitazone is an effective long-term treatment for steatohepatitis in patients with prediabetes or diabetes. Our team has investigated whether the efficacy of pioglitazone varies depending on a patient’s glucose status — that is, whether they are insulin-resistant or diabetic, and found differences that may impact clinicians’ treatment decisions as well as patient outcomes.

We’re currently looking at a variety of different ways to address the impact of obesity, diabetes, fatty liver disease and steatohepatitis, so we can apply this knowledge to improving outcomes for all patients. This includes groundbreaking research into dietary approaches to weight loss in older adults who are obese, and how weight loss resulting from treatment with a sodium-glucose cotransporter-2, or SGLT-2, inhibitor may benefit patients by reducing liver fat and improving insulin secretion and action.

We are also evaluating the potential role of glucagon-like peptide-1 receptor agonists and insulin-sensitiers in the management of obesity and fatty liver disease.  These and other novel therapeutic options under investigation at UF Health hold promise, and may become a cornerstone in the management of both obesity and diabetes in the near future.

Our diabetes and obesity research programs are growing rapidly with new investigators and collaborations in multicenter studies to find new treatments.

For more information about our research, contact our team at 352.294.4896. In addition, please consider us when voting for the U.S. News and World Report rankings for Endocrinology. 

Sincerely,

Kenneth Cusi, M.D., FACP, FACE
Chief, Division of Endocrinology, Diabetes & Metabolism
Department of Medicine
University of Florida

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University of Florida Health Head and Neck Surgeons Integrate 3D Technologies to Optimize Patient Outcomes

Virtual surgical planning, or VSP, is an invaluable tool for complete head and neck reconstructive surgery that allows the team of surgeons at the University of Florida College of Medicine’s Department of Otolaryngology — part of UF Health, the Southeast’s most comprehensive academic health center — to develop a precise surgical plan on the computer before stepping into the operating room. Only a handful of institutions in the United States use this innovative technology on a regular basis.

With VSP, head and neck surgeons can design and print 3D patient-specific skull models, cutting guides and other instruments for use within the sterile field to facilitate an anatomically-based personalized surgical approach. Common head and neck applications of this technology are tumor excision and facial reconstructive procedures, such as mandibular, maxillary or full jaw reconstruction; craniofacial reconstruction; dental implants with free flap reconstruction; and trauma reduction surgery. 

“3D printing technology has changed the way we view oncologic head and neck reconstruction, as it simplifies and shortens a long and complicated procedure,” explains Peter T. Dziegielewski, M.D., FRCS(C), chief of the division of head and neck oncologic surgery at UF. “Virtual surgical planning and 3D modeling reveal complexities of a case before, rather than during a procedure,” he says. Consequently, presurgical planning removes some of the unpredictability associated with reconstructive surgery and enables surgeons to make more accurate incisions. For patients, improved surgical precision can mean less time in the operating room, as well as better cosmesis and functional outcomes. 

Since the team integrated this revolutionary technology a few years ago, VSP has become an indispensable tool in oncologic craniomaxillofacial reconstruction, especially with regard to patient education. When patients and their families can view and manipulate an actual replica that duplicates nearly every detail of the original, including the pathology, they are better able to visualize and understand the procedures they will undergo.

The oncologic reconstruction surgical team at UF Health performs technically challenging procedures every day. As leaders in implementing virtual surgical planning into daily practice, the team strives to achieve the best possible outcomes for all patients. 

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University of Florida Department of Otolaryngology is a Leader in Complete Oral Reconstruction and Rehabilitation after Head and Neck Cancer Surgery

Each year over 50,000 Americans are diagnosed with head and neck cancers, including those of the oral cavity and pharynx. As surgical and adjuvant treatments have advanced, an increasing number of patients are becoming long term survivors of head and neck cancer.  These individuals require multidisciplinary care from a team of surgeons, oncologists, dental specialists, physical therapists and speech-language pathologists to address the significant disability that often results from treatment, including facial deformity, impaired speech, swallowing dysfunction and loss of oral and dental structures. The University of Florida College of Medicine’s Department of Otolaryngology — part of UF Health, the Southeast’s most comprehensive academic health center — houses the largest comprehensive oral rehabilitation program in Florida. Through their research and clinical programs, the teams focus on restoring each patients’ ability to speak, swallow and chew. These seemingly basic functions also give patients the confidence to appear in public and participate in social activities they may have given up.

The team at UF aims to restore both form and function, which is not always possible with conventional reconstructive methods. “As patients survive oral cancer treatment, the last piece of their recovery is dental rehabilitation,” says Peter D. Dziegielewski, M.D., FRCS(C), chief of the division of head and neck oncologic surgery at UF. “With virtual surgical planning and 3D modeling we are finally able to maximize recovery and give patients back what they lost to cancer.”

As leaders in the use of virtual surgical planning in head and neck reconstruction, the team of surgeons and prosthodontists develops a digital anatomically based, personalized surgical plan for each patient. Using advanced technology, the team at UF Health is able to reconstruct complex defects using free flaps from the fibula, radius and scapula. Tumor removal, free flap transfer and dental implant placement occur during the same procedure. This reduces recovery time and increases time with full oral restoration. The goal is to maximize the quality of life following the survival of head and neck cancer treatment.

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Thinking “Fast” May Improve Outcomes in Obese Adults with Type 2 Diabetes and Fatty Liver Disease

Despite decades of research and thousands of articles on the subject, clinicians are no closer to finding the ideal diet for patients with diabetes than when their search began. Low-carb, low-fat, ketogenic, vegetarian, vegan, carb counting — it seems that a study is no sooner published supporting a particular diet than another is published suggesting the opposite diet is better.

In the opinion of Troy William Donahoo, M.D., FTOS, a clinical associate professor at the University of Florida in the Division of Endocrinology, Diabetes and Metabolism, “Clearly the ideal diet for patients with diabetes isn’t simply a question of composition versus calories. There must be something more.” Donahoo’s research on fasting is headed in that direction.

Upton Sinclair wrote about fasting more than 100 years ago. The effects of starvation on the human body were studied after World War II. In the 1950s and 1960s clinicians experimented with fasting in severely obese patients, at times with fatal consequences. Medical science has come a long way since then. Donahoo’s research team is tackling the problem by investigating the potential benefits of an increasingly popular dieting strategy called intermittent fasting.

When fasting, the body converts fat into fatty acids that can be absorbed by the blood. But as Donahoo explains, “The human body is designed to feed and fast, not for long-term ketosis or chronic dietary restriction.” Encouraged by the success of the team’s pilot study on intermittent fasting, which was recently published in Obesity, the official journal of the Obesity Society, Donahoo’s team is now evaluating the safety and efficacy of intermittent fasting in adults with Type 2 diabetes and nonalcoholic fatty liver disease.

UF Health is thinking “fast” and working hard to improve outcomes in obese adults with Type 2 diabetes and fatty liver disease.

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University of Florida Health Tackles Perioperative Hypothermia

While University of Florida Health physicians are committed to tackling difficult and complicated challenges to improve the health and outcomes of patients, they also are mindful of examining and improving standard care pathways, which can make a big difference for patients.

Researchers at UF Health led by Dr. Thomas Read, chief of the division of gastrointestinal surgery, are working to improve outcomes for patients who undergo colon and rectal surgical procedures by helping them avoid complications associated with hypothermia, which is thought to increase the risk of post-colectomy infections.

Hypothermia is thought to increase the risk of post-colectomy infections. Dr. Read’s group conducted a study to determine when patients get cold as they undergo elective colectomy. They found that most body temperature loss occurs in the preoperative period, rather than during the operation itself as was previously believed. Dr. Read was first author on a study published in Techniques in Coloproctology in May 2018 that explored this phenomenon. He points out, “approximately 15 years ago, efforts were made to actively re-warm patients during surgery to restore their body temperature, but not surprisingly, patients lose body heat before surgery begins.

“Surgeons know that patients do better when they’re kept warm. Ironically, operating rooms are kept cold because surgeons, nurses and other health care professionals are all working under hot lights with gowns over their clothes, but patients are almost completely undressed and are at risk of further losing body heat when intubated because of the loss of thermoregulation with anesthesia.” Dr. Read’s group has used forced air heater blankets to warm patients before surgery and as they go into the operating room to help reduce heat loss. “We’ve found that this simple technique reduces the need for expensive warming methods during surgery and leads to better outcomes for patients.”

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University of Florida Health Leads the Way in Gastroenterology and Gastrointestinal Surgery

Dear colleagues,

In the Division of Gastroenterology, Hepatology and Nutrition at University of Florida Health, we run a comprehensive program that covers the vast majority of gastrointestinal diseases, with faculty that provide specific expertise and services for tertiary and quaternary level consultations. In addition to care for pancreatitis and pancreatic cancer, the division specializes in advanced endoscopic procedures.

In the Division of Gastrointestinal Surgery, we specialize in both colorectal surgery and minimally invasive bariatric surgery.

We have broad-based expertise in pancreatitis that includes consultative care, a comprehensive program in pancreatic surgery for pancreatitis and a robust clinical research program that is uncovering better ways to treat pancreatitis. Patients who are referred to UF Health for second opinions on diagnoses of acute and chronic pancreatitis gain access to a team of experts who can determine the appropriateness of endoscopic therapy and additional diagnostic testing, and provide strategies for effective disease management. The strength of our program is built on a combination of multidisciplinary clinical expertise, particularly our collaborative work with pancreatic surgeons, and a solid research program.

Our leadership in pancreatic cancer care is exemplified by our Center of Excellence designation for pancreatitis and pancreatic cancer by the National Pancreas Foundation. We are one of 10 clinical centers in the Consortium for the Study of Chronic Pancreatitis, Diabetes and Pancreatic Cancer, funded by the National Cancer Institute and the National Institute of Diabetes and Digestive Diseases. The clinical centers are collaborating to understand the links between pancreatitis, diabetes and pancreatic cancer. This research brings together specialties across the spectrum of expertise at UF Health, including gastroenterology, surgery and endocrinology, to focus on these interrelated diseases.

We are also one of 10 institutions selected to be part of the Pancreatic Cancer Action Network’s Precision Promise program. Precision Promise seeks to predict the response of groups of patients to specific drug therapies based on genomic signatures found in their pancreatic cancer cells. This program has the potential to deliver precision medicine for pancreatic cancer patients, and we are well-poised as an institution to help lead this effort because of our basic science expertise, translational scientists and data-crunching abilities.

At UF Health, we are committed to improving outcomes for patients undergoing colorectal surgery. Our colorectal surgery group performs routine and complicated surgeries to treat colorectal cancers. We provide integrated multidisciplinary colorectal cancer care – our team holds weekly conferences to ensure that medical and radiation oncologists, surgeons, pathologists and radiologists work together for the benefit of patients.

Our coordination of surgical care with radiation oncologists, involvement of colorectal cancer specialists and constant work to improve surgical techniques all make UF Health a leader in colorectal surgery care. The colorectal surgery group also plays a role in training residents in surgery and is involved in the treatment of other gastrointestinal disorders, such as inflammatory bowel disease.

Our minimally invasive bariatric surgery program is an American College of Surgeons- and American Society for Metabolic and Bariatric Surgery-accredited bariatric surgery center. The group offers advanced minimally invasive surgery, which significantly reduces the stress that patients experience compared with major, open surgeries.

We collaborate across UF Health with experts in psychiatry, cardiology, pulmonology, medicine, nephrology and nutrition to offer a variety of procedures, including gastric bypass and laparoscopic sleeve gastrectomy. The group also performs corrective and revision surgeries to address complications and conversion surgeries, such as converting a laparoscopic band to a sleeve or Roux-en-Y. These options help make UF Health a leader in ensuring that patients experience better outcomes in bariatric surgery. 

The practice of gastrointestinal medicine is often compartmentalized with gastroenterologists and gastrointestinal surgeons working independently, but here at UF Health, we foster close collaborations between the medical and surgical sides to improve patient care and outcomes.

Now that you’ve learned more about us, please consider voting for us in the U.S. News & World Report rankings for Gastroenterology. 

Sincerely,

Chris Forsmark, M.D.
Chief, Division of Gastroenterology, Hepatology and Nutrition
Department of Medicine
University of Florida

Thomas Read, M.D.
Chief, Division of Gastrointestinal Surgery
Department of Medicine
University of Florida

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University of Florida Health Leads U.S. in Third-Space Endoscopy

University of Florida Health is a national leader in the use of third-space endoscopy, an approach that allows gastroenterologists to tunnel within the muscular walls of hollow organs and remove large areas of tissue, such as polyps and areas of premalignant degeneration.

Dr. Chris Forsmark, chief of the division of gastroenterology, hepatology and nutrition at the UF College of Medicine, part of UF Health, explains that the division offers complex and advanced endoscopic procedures that go beyond standard gastroenterology procedures like upper endoscopies and colonoscopies. As the field of endoscopic therapeutics grows, UF Health Shands receives more and more referrals for these complex endoscopic procedures. 

Gastroenterologists at UF Health perform third-space endoscopy procedures known as endoscopic submucosal dissection, which, according to Dr. Forsmark, can be used to “remove tissue that is up to 6 cm across, which is much larger than we could ever do before and would have required surgery.”

In an incisionless procedure, endoscopic submucosal dissection can be used to treat esophageal disorders, such as repairing a muscular sphincter that does not relax enough to allow passage of food.

Third-space endoscopy is expanding the field of endoscopic therapeutics, and the faculty at UF Health are world-renowned for performing these novel endoscopic procedures. “Our work in this space is leading to endoscopic bariatric procedures where we can begin to mimic what surgeons are doing in obesity surgery but without incisions,” says Dr. Forsmark. Faculty at UF Health continue to drive the field forward by developing the specialized skills required to perform complex endoscopic procedures, thereby offering patients better treatment options for gastrointestinal disorders.


Blog featured image credit: Huge liposarcoma of esophagus resected by endoscopic submucosal dissection: case report with video.

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Give Hope. Spread Joy.

Now through midnight, Dec. 31, UF Health is holding its annual end-of-year giving campaign, “Give Hope. Spread Joy,” which asks donors to consider making a donation to the nonprofit academic health care center. Along with a gift, donors are encouraged to include a message that will be shared with the patients, faculty and staff members spending the holidays in the hospital.

Those notes touch many patients and staff members, lifting their spirits during the holiday season. Dana Viviano, R.N., nurse manager, UF Health Shands Cancer Hospital Unit 5E, writes:

“I wanted to extend a personal thank you for Giving Hope and Spreading Joy during the holidays.

I am the nurse manager for Unit 5E at the UF Health Shands Cancer Hospital. We are the gastrointestinal surgical oncology unit that provides care to patients before and after their surgical procedures. The staff on 5E often witness how an acute health care crisis impacts families over the holiday season.

Because of the severity of their illness, many of our patients will need to undergo lifesaving surgical interventions over the holiday season. These patients and their families experience a different holiday season without the traditional meals or family moments. Our unit is proud to provide empathetic care and bring hope to so many undergoing treatment for these serious and complex illnesses.

We want you to know that we do our best to capture the magic of the holidays at UF Health, and try to ensure that every patient has the opportunity to celebrate the holiday season with family and friends while they are with us, their 5E family.

I am proud to be their nurse manager. My sincere gratitude for each of you for the hope and joy you give to our patients, their families and our staff during this time of year.”

Gifts made during this year’s campaign will support the UF Health Heart & Vascular and Neuromedicine Hospitals, UF Health Cancer Center, UF Health Shands Children’s Hospital as well as the greatest needs of UF Health. This includes lifesaving medical equipment, groundbreaking studies and essential patient care programs that impact the future of patient care.

The “Give Hope. Spread Joy.” campaign is in its third year and marks the end of the holiday giving season. Last year’s campaign resulted in nearly 300 messages that expressed well wishes and holiday greetings.

“For over 50 years, [UF Health] Shands has been my hospital of choice,” wrote one donor. “I am alive and healthy because of you and my excellent primary doctor. Keep your tradition of excellence and concern for people and details.”

Another wrote, “Sorry to hear you are in the hospital! Sending you healing thoughts and warm wishes to brighten your day during your stay.”

Gifts may be made at giving.UFHealth.org/givehope.

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University of Florida Department of Otolaryngology offers multidisciplinary rehabilitation for people with voice and swallowing disorders

Cancer and stroke survivors who develop dysphagia receive coordinated and comprehensive care at University of Florida College of Medicine’s Department of Otolaryngology. The specialists are highly experienced in evaluating and treating even the most complex dysphagia cases using the latest imaging technology and innovative treatment approaches.

The UF team offers a unique voice and swallowing program that integrates surgical intervention when necessary to address anatomic limitations that arise as a consequence of cancer treatment or neurologic impairment. The program aims to restore quality of life in patients whose pathologies left them with the diminished ability to perform basic life functions such as swallowing and speaking.

According to Neil Chheda, M.D., chief of the Division of Laryngology in the Department of Otolaryngology, the approach at the University of Florida – part of UF Health, the Southeast’s most comprehensive academic health center – is multidisciplinary. “Historically, the care of the patient with a complex dysphagia was siloed with little communication between different departments. We have found that a more comprehensive approach delivers better outcomes.”

Dr. Chheda evaluates all aspects of swallow from mouth to stomach including in-office functional testing, and collaborates with all members of the patient’s care team to design a personalized treatment plan. “I work closely with the speech-language pathologist to look at form as well as function,” he says. Treatment may include exercises to strengthen oral musculature or improve coordination and, when appropriate, open or endoscopic surgery to address anatomic dysfunction, such as vocal fold paralysis, velar insufficiency, or upper esophageal sphincter compliance. “To my knowledge we offer more aggressive intervention than any other facility in Florida,” Chheda says.

Voice and swallowing disorders can make people feel depressed and socially isolated due to their condition. Thus, intervention begins as quickly as possible after the insult or, in head and neck cancers, once radiation concludes. Explains Dr. Chheda, “Our goal is to do what’s best for the patient to help them regain the ability to perform activities that you and I take for granted.”

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University of Florida’s Department of Otolaryngology Leads the Way in Care of Ear, Nose and Throat Conditions

Dear Colleagues,

The team of board-certified physicians at the University of Florida’s Department of Otolaryngology is uniquely qualified to deliver the highest quality of care and the most advanced treatments to patients with a full spectrum of ear, nose and throat conditions, including head and neck cancer. Our department maintains two outpatient practices and conducts original otolaryngologic research at its laboratory facilities. In addition to its outstanding residency training program, the department also offers a superb clinical fellowship in advanced head and neck oncologic and reconstructive surgery.

The UF Department of Otolaryngology comprises 13 faculty in seven divisions:

  • Allergy and Sleep Surgery Center
  • Facial Plastic and Reconstructive Surgery
  • Head and Neck Surgical Oncology
  • Laryngology and Professional Voice Center
  • Otology/Neurotology
  • Pediatric ENT/Pediatric Airway Center
  • Rhinology and Skull Base Surgery

The Head and Neck Surgical Oncology division brings together our experts in several specialties to provide personalized treatment for cancers of the mouth, pharynx, larynx, salivary glands and thyroid. The department is one of the premier centers in the United States to offer a comprehensive multidisciplinary approach and minimally invasive surgery to address skull base tumors in both children and adults. The department utilizes advanced 3D modeling and incorporates virtual surgical planning to guide complex head and neck surgeries, and to improve patient outcomes. 

Survival is not our only goal. Our faculty also strives to improve quality of life for people who have survived neurologic insults or cancer. For individuals experiencing voice and swallowing disorders, the approach is also multidisciplinary, involving close collaboration between the otolaryngologist and the speech-language pathologist to determine the cause and to create a customized treatment plan that includes surgical intervention—often in the office—to address anatomic limitations as quickly as possible. Our department is one of the few centers in the nation to offer comprehensive oral rehabilitation and full dental restoration.

In addition to our commitment to patient care, our department’s dedication to research has enabled our investigators to focus on novel topics. Our team has been investigating toxicities associated with commonly used ear medications, notably quinolone ear drops. In a groundbreaking analysis published in Clinical Infectious Diseases in 2017 that included 96,595 children, our research team found that those who received quinolone ear drops after tympanostomy tubes had a higher risk of tympanic membrane perforations than those who received neomycin ear drops. We have been able to confirm the adverse impact of quinolones on tympanic membranes in animal models.  Soon to be published articles show that quinolone ear drops may lead to perforations of intact tympanic membranes. 

Investigators within our department are focused on other exciting topics, as well. For example, Natalie Silver, M.D., and her UF collaborators recently reported the results of the first known study demonstrating antitumor efficacy of tumor-derived RNA nanoparticle vaccines in an oral cavity squamous cell carcinoma syngeneic mouse model. These results will serve as the foundation for future clinical trials aimed at reprogramming the immune system with engineered personalized RNA nanoparticle vaccines.

Now that you’ve learned more about us, please consider voting for us for the U.S. News & World Report rankings for ear, nose and throat.

Warmest regards,
Patrick Antonelli, M.D., FACS,
Chair, Department of Otolaryngology
UF College of Medicine

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Be Aware this Flu Season

As the holiday time of the year comes to a close, another season – one that is much less fun – is looming. This is the time of year when cases of the flu peak, and Cristina Zeretzke-Bien, M.D., an emergency medicine physician at University of Florida Health, offers the signs and symptoms of the flu so you’re prepared this season:

  • Fever of 101.4 or higher
  • Chills
  • Cough
  • Sore throat
  • Body aches
  • Headache
  • Difficulty breathing/shortness of breath
  • Fatigue
  • Runny/stuffy nose

If you or your loved one are experiencing a combination of these symptoms, you should determine the next course of action for treatment. According to Zeretzke-Bien, the biggest thing to differentiate between when to turn to the emergency room and when to stay home is whether you or your child is a high-risk patient.

High-risk patients include:

  • Children less than 2 years old
  • Adults older than 65
  • Patients who have chronic pulmonary disease or a neurological disease
  • Patients who have cardiovascular, renal, hepatic, hematologic (including sickle cell anemia), or metabolic (including diabetes) disorders
  • Patients who are immunosuppressed (including those with HIV and women who are pregnant or postpartum)

Patients who are at high risk would require closer monitoring and checking in with subspecialists for flu-like symptoms, but this doesn’t necessarily need to be done at an emergency room. As long as the patient is staying hydrated, resting, controlling fever with over-the-counter medication and is alert, oriented and doesn’t appear toxic, Zeretzke-Bien says it’s recommended to visit a primary care provider or subspecialists for a quicker, more efficient evaluation process.

If symptoms are severe, though, the patient may need to seek a higher level of care in the emergency department. The more severe symptoms, which are the most important to monitor, include dehydration or a persistent cough concerning for pneumonia. Signs of severe dehydration include dry lips, sunken eyes and no urinary output.

For more information about the flu or to track the nationwide pattern of positive cases, please visit the Centers for Disease Control at www.cdc.gov/flu/index.htm.

Sofia DiMartino's picture

Combatting Holiday Depression

Depression impacts nearly 6.7 million adults in the United States, and the stress of the holidays can make that depression worse.

Many factors play into the reality of depression magnifying around the holiday season, including increased loneliness, strain on finances and guilt caused by unhealthy choices. 

Uma Suryadevara, M.D., a UF Health psychiatrist, said that seasonal affective depression is often regular depression but exacerbated around the holidays and said she sees an increase in patients coming to her for help with depression during the holiday season. 

“If a person is a little bit prone to depression and then they have to do a whole lot during the holidays, this could lead to more stress, which could lead to more isolation, and they eventually could end up getting more depressed,” Suryadevara said.

UF Health can help those who know they struggle with holiday depression by addressing some of the common problems that cause stress during the holidays and by offering ways to stop these triggers before they occur.

THE DILEMMA: The holidays are traditionally accompanied by spending on gifts, food and travel, which can impact finances and put stress on anyone who can’t afford what they feel their family deserves.

THE SOLUTION: Encourage yourself to be realistic and recognize that holidays can’t be the same every year. Understand that despite what you spend on gifts, decorations or get-togethers, the holidays are a time of togetherness and love, and those around you will be appreciative of your thoughtfulness no matter what you spend on them. To prevent stress from financial hardship due to overspending, plan ahead for events and travel plans. Create a budget and stick to it.

THE DILEMMA: The holidays are typically spent surrounded by family and friends. Sometimes loved ones have recently passed away, families have broken up due to divorce or people are forced to spend a holiday far away from the people they care about. Special occasions like holidays can make this loss or loneliness even more apparent and deepen depressive episodes.

THE SOLUTION: Acknowledge the feelings you’re having, whether they be those of grief or loneliness, and reach out to those around you to express how you are feeling. Everyone has experienced these feelings in some form and has the capacity to be understanding. You’d be surprised at the lengths people would go to help you feel wanted and loved, especially during the holiday season while the spirit of giving is in the air.

THE DILEMMA: The holidays are a time of sharing love through baked goods and casseroles. Often, this food is very rich and is served in portion sizes that lead to overeating. Overeating can cause decreased self-confidence, stress and guilt, which can make a depressed person feel worse about themselves. 

THE SOLUTION: Don’t abandon your healthy habits during the holidays. Though everyone looks forward to the delicious foods served on Thanksgiving and Christmas, don’t eat more than you typically would. Spreading the food out over several days of well-portioned meals can lead to less guilt and more times you get to eat the annual foods you love. Are you worried about disappointing or embarrassing family members by not eating their dish? It is often empowering to say no or stick to what you need for your own health and well-being. Be open about what you’re going through, and your family will understand your choices.

THE DILEMMA: The holidays are coming quickly, and you haven’t had time to purchase gifts for anyone, let alone think about what they’d want. This added anxiety can add another layer to depression, making every day a greater struggle.

THE SOLUTION: First, plan ahead to avoid last-minute shopping. Shop months in advance and take advantage of sale events like Black Friday to get all of your shopping done ahead of time. Then, don’t allow perfectionism to get you down. If you feel you can’t find the perfect gift this year, that’s okay! You can always make up for it at their birthday or next holiday season. Odds are they will be grateful you purchased them anything.

At the end of the day, take time to de-stress. Warmth and doing things you enjoy both improve mood, so take a hot bath, wrap yourself in a blanket and relax while doing your favorite thing. As always, seek professional help if you feel you need it.

UF Health psychiatrists are faculty members at the University of Florida, expertly trained and certified by the American Board in Psychiatry to provide patients with consultations, evaluations and treatments, as well as a wide variety of services.

 
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Early Detection is the Difference-Maker with Lung Cancer

Lung cancer doesn’t make its presence known until it’s too late. However, technology has made it easier to catch at an early stage, which is key with this cancer.

Lung cancer has a way of staying hidden and becoming increasingly fatal the longer it does so. However, there are enormous benefits to shining light on this particular cancer early on, and that’s more possible now than it used to be.

Early detection, which is crucial in all cases of cancer, gives patients options they otherwise wouldn’t have since the disease may be smaller in size and hasn’t metastasized to other regions of the body. However, identifying lung cancer in its beginning stages can have an even more distinguishable impact on survival when compared to other types.

Since lung cancer stands out due to its prevalence (second-most common type), mortality (deadliest type) and tendency to fly under the radar, early detection is vital with this disease.

Lung cancer stays out of sight

One of the reasons why lung cancer is the deadliest type of cancer for both men and women in the United States is the fact that symptoms don’t emerge until the disease has reached an advanced, non-curable stage.

Only then does the patient begin to experience a cough that is persistent, progressive or even bloody. Other symptoms come in the form of chest pain, difficulty breathing or infections such as bronchitis or pneumonia. Even when these things show up, they’re commonly confused with the side effects of smoking or another sickness.

The lack of warning signs makes it important for patients to be proactive in getting yearly screenings. Those at high risk — individuals who smoke, inhale secondhand smoke, get exposed to high radon levels or other substances, or those with a family history of lung cancer — should get their lungs checked on a regular basis.

Early screening and its impact on survival

Time is a critical factor when it comes to those with lung cancer, which has a five-year relative survival rate of 18.7 percent, according to the latest annual report to the nation on the status of cancer. That percentage is lower than any form of cancer listed in the report from 2006-12, with the exceptions being pancreatic cancer (8.5 percent) and liver cancer (18.1 percent).

These statistics can vary a great deal depending on the type and stage of the lung cancer. With that said, screening that leads to early detection while it’s still localized within the lungs can increase the five-year survival rate to about 56 percent.

In some cases, catching the disease in its earliest stages can have a striking effect. For example, detecting non-small cell lung cancer (by far the most common type) at stage IA1 has a five-year survival rate of 92 percent.

At the UF Health Lung Cancer Program, 9 out of 10 lung cancer referrals are seen within seven days. That accessibility is key to giving our patients the best possible chance in the battle.

When it comes to those checkups, there hasn’t been a widely accepted screening tool available for early-stage lung cancer until recently. Far too often, regular chest X-rays have missed lung tumors during the most beneficial time to be a reliable method for detection.

A better method for detection is here

When it comes to those checkups, there hasn’t been a widely accepted screening tool available for early-stage lung cancer until recently. Far too often, regular chest X-rays have missed lung tumors during the most beneficial time to be a reliable method for detection.

Supported by the National Lung Screening Trial (NLST) and the American Society of Clinical Oncologists, along with many studies, low-dose computed tomography (LDCT) has proven to be more effective at detection than chest X-rays for those at high risk. Unlike the single-picture chest X-ray, the multi-picture CT scan uses detailed cross-sectional images of the body. The CT scanner does this by rotating around you while you lie on a table and taking several X-rays.

The LDCT scan’s superior ability to uncover lung tumors, even small lesions that could potentially carry cancer, is a key reason the NLST and other research has shown that getting annual LDCT scans before symptoms appear can help reduce the risk of dying from lung cancer.

UF Health offers LDCT scans, which are now covered by Medicare once per year for beneficiaries who meet these criteria:

  • ages 55-77, and are either current smokers or have quit smoking within the last 15 years
  • tobacco smoking history of at least 30 “pack years” (an average of one pack a day for 30 years)
  • receive a written order from a physician or qualified non-physician practitioner who meets certain requirements

Please ask your primary physician for more info and to schedule an appointment if necessary.

Sofia DiMartino's picture

Bonnie Versus Breast Cancer

As a lifelong Gainesville resident, Bonnie Green has lived a full life in a small town.

Born in a local hospital, which she laughingly says no longer exists, Bonnie was raised in the heart of The Gator Nation. She graduated from a local high school, went to college at Santa Fe and got married. She worked as a cardiovascular echo tech, then spent time raising her children as a stay-at-home mom of two. She spent her spare time focusing on creative endeavors: crocheting, painting, drawing and writing.

She had no idea that the little town that had afforded her so much light and happiness would soon become the backdrop for the darkest period in her life.

In the fall of 2016, Bonnie visited the doctor for a routine mammogram. She was faced, for the first time in her life, with an unusual result.

“They asked me if I had time to do a biopsy that day,” Bonnie said. “I have to tell you, it scared me to death.”

Bonnie knew what a biopsy order might mean. Several of her family members had been diagnosed with breast cancer in the past, and Bonnie had helped her sister through a breast cancer diagnosis and treatment just five years earlier.

“I started worrying. What if that happened to me, too, with all the family history,” Bonnie said.

Bonnie’s intuition proved to be correct when her biopsy results came back positive for pre-cancer in her right breast.

With a diagnosis of pre-cancer, Bonnie’s care transferred to Lisa Spiguel, M.D., a surgeon at UF Health specializing in oncology and surgical breast cancer treatment. Spiguel sent her for an MRI to get better cancer visualization.

“Bonnie came to see me initially because she had had an abnormal screening mammogram,” Spiguel said. “I wanted a full evaluation, so I ordered a breast MRI.”

Sitting in the MRI machine, Bonnie had a feeling something else was wrong, but results weren’t available immediately. She spent the next several days in a panic.

“I was anxious and calling, and when they got the results, they told me I had to come in, so I knew something was wrong,” Bonnie said. “So, I asked the nurse to tell me the truth over the phone, and that’s when I found out.”

The MRI had discovered Stage 1 breast cancer in her other breast, meaning both breasts contained cancerous tissue. To ensure successful treatment, and that the disease wouldn’t spread, Bonnie needed surgery as soon as possible.

Bonnie describes that moment of diagnosis as one of pure shock and sadness, pulling her into a darker place than she’d ever imagined. The woman who’d once loved to paint and crochet began to set all of that aside. She would start paintings but never finish them, and she began to give away the pieces of art she’d treasured the most.

Still, Bonnie refused to let her soul be crushed under the heavy weight of a cancer diagnosis. With the help of an anti-depressant, lots of prayer and ceaseless support from her family, Bonnie rallied and prepared herself for the first stage of her fight.

Bonnie opted for a double mastectomy, a dramatic surgery in which Spiguel would dissect the lymph nodes of the breast and remove all breast tissue and muscle near the cancer-affected area. After the procedure, with all the tissue removed, Bonnie’s breasts would no longer exist.

“After discussing all of the risks and what her future risk of breast cancer was, Bonnie elected to proceed with a bilateral mastectomy, not to treat her cancer better but to prevent future cancer,” Spiguel said. “When a woman has decided to proceed with mastectomy, we talk about the role of reconstruction.”

Hoping to return her breasts to their original appearance after the surgery, Bonnie was introduced to UF Health plastic and reconstructive surgeon Mark Leyngold, M.D. to discuss her options for breast reconstruction.

“Dr. Leyngold is the best,” Bonnie said. “He really just put me at ease, and the dedication the girls in the office put in to make sure every question was listened to was just amazing. He was adamant that he was going to give me exactly what I wanted breast reconstruction-wise within the parameters of what fit me.”

Bonnie decided that the best option for her body was to undergo a flap procedure, using tissue from her abdomen for the reconstruction.

Dr. Leyngold guided Bonnie to this decision but says that it really comes down to what the patients want, not his preference.

“We really have to take into consideration what they feel is appropriate or what they feel is a good outcome and what their goals are,” Leyngold said.

“I’ll kind of combine my expertise and their goals and give them a good result where they feel happy.”

On the day of the procedure, in January of 2017, both surgeons went in and performed their respective duties in remarkable collaboration.

Spiguel performed a double mastectomy, dissecting Bonnie’s lymph nodes and removing all of her breast tissue and nearby muscle. Afterward, Leyngold placed tissue expanders under the skin where Bonnie’s breasts used to be in order to make room for the future tissue transfer.

The procedure was successful and Bonnie went home to recover, but she soon felt that something was wrong. After feeling pain in her right breast several days post-procedure, she came down with a fever of 103.

“I let Dr. Leyngold know, and he immediately had me come in, no waiting, and had me come into the hospital,” Bonnie said.

Dr. Leyngold discovered that Bonnie had an infection in her right expander, a common complication for breast reconstruction surgeries. He immediately treated it with antibiotics.

“He [Dr. Leyngold] took such good care of me,” Bonnie said. “Even when I was in the hospital and safe, everyone was constantly checking in and making sure I had the right care.”

After healing, Bonnie underwent 18 rounds of chemotherapy beginning in May of 2017 and was able to undergo her breast reconstruction. Today, she is cancer-free.

Bonnie credits her success to the joint efforts of Drs. Spiguel and Leyngold and their teams, calling them experts in the field who made her feel like family.

“We try to create an atmosphere that makes the patient feel like they’re being cared for, like they’re in good hands,” Leyngold said. “We try to instill confidence in our skills and give the patient an understanding that we’re not just there to operate on them, but we’re there to treat them as a whole patient. We spend time with patients in the room, and let them ask all their questions and put them at ease.”

Just a few months ago, Bonnie began to get back into what she loves most, and today she is back to crocheting and painting again. Bonnie works for the University of Florida’s Health Science Center Library has joined their marketing team and says she feels lucky to be a small part of promoting what UF Health can do, especially because of all that they have done for her.

“They’re concerned and they’re professional, yet friendly and courteous,” Bonnie said. “I couldn’t have made it without Dr. Leyngold and Dr. Spiguel and their teams. I really just felt like they went above and beyond with everything, as far as I’m concerned, and I’m sure they do the same thing with their other patients, too.”

Talal Elmasry's picture

The Main Road to Lung Cancer and How to Steer Clear

During Lung Cancer Awareness Month, learn some technique on how to drop smoking.

It’s hard to imagine the deadliest cancer in the country is also the most preventable, but that’s the puzzling truth about lung cancer. That makes November, which is Lung Cancer Awareness Month, an especially important time to educate ourselves and our loved ones who might be in danger.

For a great number of people who stand in the crosshairs of this condition, all it takes is recognizing two things: their addiction to smoking and their options to drop it.

Lung cancer’s main culprit

This year, lung cancer is projected to take the lives of almost 155,000 Americans. While there may be a few causes and risk factors for this unsettling number — the highest among all forms of cancer in both men and women — nothing comes close to the threat posed by smoking.

In fact, according to the International Association for the Study of Lung Cancer, or IASLC, 80 to 90 percent of the casualties this disease claims could be prevented if people avoided smoking cigarettes.

Even if you’ve been smoking, however, there are still benefits to stopping. Once you are 10 years clear of smoking, your risk of dying from lung cancer is about half that of a person who is still smoking.

Still, some people will have an extremely difficult time veering off the path that frequently leads to lung cancer. The first step is to admit that you have an addiction.

Signs of addiction

The addictive power of nicotine, the substance in tobacco that creates this unhealthy gravitational pull toward smokers, can’t be underestimated.

The feelings of pleasure, as well as the reduction of stress and anxiety, produced by nicotine can lead to a dependence that is strong enough to keep users smoking even if they know the negative effects and want to quit.

However, identifying that you are addicted must be done to overcome the habit. Here are a few clues:

  • Smoking more than one pack a day
  • Smoking despite being sick or having a health issue
  • Smoking within minutes of waking up
  • Giving up social or recreational activities to smoke
  • Waking up at night to smoke
  • Smoking to ease symptoms of withdrawal
  • You can’t stop smoking despite serious attempts to do so

Even many people who categorize themselves as social or casual smokers may wrongfully believe that they’re dodging harmful effects by not smoking every day or only once a day. However, plenty of research has been done to debunk this train of thought over the last several years.

Nicotine PatchBest quit-smoking products

There are a few products that can help you kick the habit. Many of them are known as nicotine replacement therapy because they effectively address cravings and withdrawal symptoms by supplying a healthy dose of nicotine in various ways.

  • Nicotine patch
  • Nicotine gum
  • Nicotine lozenge
  • Nicotine inhaler
  • Nicotine nasal spray

Meanwhile, there are two approved quit-smoking medications that are nicotine-free, and both are prescription only.

  • Chantix
  • Zyban

E-cigarettes have not been approved as a stop-smoking alternative.

Progress has been made

It’s also worth pointing out the strides that have been made because of increasing awareness of lung cancer.

The most recent data from the American Cancer Society finds that the lung cancer death rate has dropped by 45 percent since 1990 in men and by 19 percent since 2002 in women due to less smoking, and that downward trend has become steeper over the past decade.

At the UF Health Lung Cancer Program, 90 percent of new lung cancer referrals are seen within seven days. Why is that important? According to the Cancer Treatment Centers of America, the patient survival rate for non-small cell lung cancer (by far the most common type of lung cancer) drops significantly the longer it goes undetected.

Patients diagnosed after six months survive 67 percent of the time, but that rate falls to 46 percent after 12 months, then to 32 percent after 18 months.*

*Based on data from 2000-13 (data related to deaths is usually 2-4 years behind the current year because of the time it takes to accurately research and disseminate the information).

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Putting a face to the name: Depression

Has a depression skeptic ever told you that it’s all in your head? Well, as a matter of fact, it is.

Depression is a brain disease that takes a colorful world and paints it in shades of gray. The persistent sadness and lack of interest that characterizes major depressive disorder can lead to a variety of symptoms and outward manifestations, including trouble sleeping, loss of interest in favorite activities, changes in appetite and touchiness.

On its own, each single symptom of depression could simply be caused by a bad day or a disappointment. Together, however, the amalgamation of symptoms is crippling, life-interrupting and potentially fatal. This misunderstanding between depressed and non-depressed persons has led to the adjective “depressed” being thrown around as a synonym for sadness, degrading public understanding of the severity of the condition.

Nonetheless, clinical depression shows up on a positron emission tomography, or PET scan, morphing the brain scan results from spots of bright yellow lighting up with brain activity to a quiet, blue sea, representing a brain with diminished activity.

According to Uma Suryadevara, MD, a UF Health psychiatrist, the difference between clinical depression and sadness comes down to its disruptive effect.

“The main difference between depression and sadness is the dysfunction that depression causes,” Suryadevara said. “If the sadness is interrupting the life, that’s the sign that it’s clinical depression. It’s not just sadness anymore.”

This small differentiation is the reason it’s so important to pay attention to your body and mental health, as well as that of those around you, to ensure you’re not ignoring the signs of a major mental illness with the potential to spiral quickly out of control.

Every person with major depressive disorder is different. Still, certain methods of coping with the illness are considered somewhat universal. For example, it is important for those with depression to stay involved with the lives of others. This allows them to have a support group of people who make them feel safe and cared for.

However, it also might be difficult for the average person with depression to reach out to those who could be there to support them, as they often feel that people may not be interested in spending time with them at all. This is a depressive symptom in which everyday situations turn into “impossible tasks.” For this reason, if you know someone with depression, it is equally important for you to reach out to them to demonstrate your support and interest in helping them, even if they decline your help.

“There are times when someone is depressed and they won’t feel like doing anything,” Suryadevara said. “The caregiver will not understand unless they know what the person feels like. Sometimes what happens when they’re depressed and someone reaches out to help them, the depressed person may be resistant to change, and the other person may feel pushed away or rejected.”

Other coping mechanisms, like doing enjoyable things, exercising or eating a healthy diet, may be additionally helpful in improving mood and outlook for depressed persons. Nonetheless, many times these at-home methods are simply not enough, and that’s where UF Health comes in.

UF Health psychiatrists can provide counseling services and evaluate patient need for prescription medication. They can also recommend patients for an innovative, noninvasive procedure that uses magnets to improve depression symptoms.

This procedure, called transcranial magnetic stimulation, or TMS, uses magnetic fields to stimulate nerve cells in the brain. It takes less than an hour and is conducted in a doctor’s office five days a week for approximately four to six weeks, depending on the patient’s condition. During the treatment, a patient has a device containing magnets placed on his or her head. While the patient relaxes comfortably in a chair, the device releases more than 3,000 magnetic pulses into his or her brain.

The patient is awake and alert throughout the procedure and may hear a clicking sound or feel a tapping sensation but will feel no pain.

TMS is just as effective as many drug therapy programs, is covered by some insurance plans and has none of the nasty side effects of prescription drugs. Patients can return to their normal activities immediately after the procedure.

This procedure, coupled with appropriate counseling or medicinal therapies, can help patients overcome a battle for control of their own minds. Still, Suryadevara said, many times the greatest fighter of depressive symptoms could simply be a helpful hand and a watchful eye.

“Reach out to your loved ones, and make sure they understand that you are always there for them,” Suryadevara said. “Watch behavioral changes. If the person is the kind of person who likes to watch movies or something and they’re not doing that, being a little forceful and changing the behavior itself can change the way the depression reacts to it.”

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Stay Safe this Halloween

Goblins and ghouls are not the only threats on Halloween. In 2017, 65 children with Halloween-related injuries were treated at the UF Health Pediatric Emergency Room, and five children were admitted into the UF Health Shands Trauma Center’s intensive care unit. Carolyn Holland, M.D., the pediatric emergency department’s assistant medical director, shares some common safety tips to make sure your child stays safe this Halloween.

“You want Halloween to be fun and exciting,” Holland said. “But you don’t want to have to visit us in the emergency department.”

Follow traffic laws, be aware of traffic
Statistics show that twice as many children die on Halloween from being hit by cars than on any other night of the year. Car accidents can be avoided with a number of precautions, including adult supervision, following the traffic laws, costume adjustments, and trick-or-treating in groups and traffic-controlled areas.

  • Adult supervision - Adult supervision is important to ensure children follow traffic laws. Adults should make sure children stay on the sidewalks and use crosswalks when crossing the street. They should also watch for any distracted drivers or vehicles moving out of driveways. Children over 12 years old should trick-or-treat in groups to facilitate a buddy system if there is no adult present.
  • Costume adjustments - When trick-or-treating at dusk, it’s important to make sure children’s costumes are visible and do not inhibit their abilities to see cars or other threats. Instead of wearing hats, masks and other accessories that may block peripheral vision, opt for makeup or face paint. Reflective tape, flashlights and glow sticks also help to ensure children can be seen by drivers. Swords, knives and smaller costume accessories should be short, soft and flexible.
  • Traffic-controlled trick-or-treating - Areas that are expecting trick-or-treaters are optimal for children’s safety. There are a few neighborhoods in Gainesville that are really popular for trick-or-treating, and those neighborhoods often provide controlled traffic on Halloween.

Read labels
Many children suffer allergic reactions from candies and costume materials. Allergic reactions can be avoided by reading the labels of candies, makeup products and face paints used to complete your child’s costume. Always test the makeup in a small area first, and remove it before bedtime to prevent irritation. Lower the risk of serious eye injury by not wearing decorative contact lenses. Only eat factory-wrapped treats, and examine all treats for choking hazards and tampering.

Take caution for avoidable injuries
Injuries from pumpkin carving and falls during trick-or-treating are also common around Halloween. Children should avoid running from house-to-house and be cautious of tripping on their costumes or other hindrances.

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Understanding Obsessive-Compulsive Disorder

Joseph McNamara, Ph.D., a psychologist at UF Health Psychiatry and co-director of the UF Center for OCD, Anxiety and Related Disorders, debunks several common misperceptions about obsessive-compulsive disorder, or OCD.

There are several key components to OCD

OCD is sparked by a recurring obsessive thought, which is distressing to the patient. The patient is prompted by his or her distress to do something to make the thought go away. This is the compulsion aspect of OCD. In fulfilling the compulsion, the thought is only temporarily erased. In fact, the patient has actually reinforced the thought.

McNamara explained, in the case of a child being afraid to touch a doorknob, parents often try to curb the child’s fears by opening doors for the child.

“Every time they [parents] do that, unfortunately, they are reinforcing for their child that doorknobs are something they need to be afraid of,” McNamara said. “And so the child’s fear of doorknobs is going to grow and grow and grow.”

OCD is maintained by fear

OCD is maintained by avoidance and accommodation, which both feed into the patients fear.

“What we really want to do is work with patients to go from, ‘How do I avoid or accommodate?” to ‘How do I approach?’” McNamara said.

McNamara continued with his example to demonstrate this concept:

  • Avoidance - refusal to touch a doorknob.
  • Accommodation - accommodating to touch a doorknob (wearing gloves, wrapping hand in towel).
  • Approach - touching the doorknob and embracing whatever may happen.

At UF Health Psychiatry, patients with OCD work in different techniques toward the “approach” method through exposure response prevention, a part of cognitive behavioral therapy. Patients are encouraged to recognize the fear and ask, “What’s something I can do to approach my fear and break it down to something that’s within the range of what I can do?”

With exposure response prevention, a patient will systematically work his or her way to the approach method. A patient who is afraid of touching a doorknob will not start off touching a doorknob. First steps for the patient could include being close to the doorknob or placing his or her hand near, but not touching, the doorknob.

“You start at the bottom of the fear ladder and you climb your way up,” McNamara said.

Most patients, especially children, don’t realize that exposure to their fears will actually help. But it’s crucial for patients to find somebody they can work with to help face these fears, which is why UF Health Psychiatry’s summer camp is called Fear Facers.

Every case is not the same

McNamara has been working in an OCD clinic for over 10 years, and has never seen two cases of OCD that are exactly the same.

Often, people will equate someone being a germaphobe, or preferring things neat, to having OCD. He said this isn’t the case and there’s a lot of variability in how OCD symptoms present themselves.

There is hope for OCD patients

McNamara said most people don’t understand how severe OCD can be. In fact, it’s ranked by the World Health Organization as one of the top 10 most-disabling disorders. Most patients are afraid to seek help. The average length of time before somebody gets into treatment is about seven to 10 years.

There’s hope at UF Health Psychiatry, though, where up to 85 percent of patients have a 50 percent reduction in symptoms by the time they complete their 15th session. McNamara’s goal is for his patients to feel like they are in control of their lives rather than OCD controlling their lives.

“I think one of the things OCD takes away from people is the hope that it can ever get any better,” he said. “We are determined to help our patients regain hope and improve their quality of life.”

OCD Awareness Week is Oct. 7 to 13.

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The New “S Talk”

As part of this year’s Mental Illness Awareness Week, UF Health Psychiatry hopes to make room for a new “S talk” in the classrooms of Alachua County Public Schools.

Leadership of UF Health Psychiatry’s Partners in Adolescent Lifestyle Support Talk, Heal, Reach Out, Include, Validate and Encourage, or PALS THRIVE, a teen support program, wants youth to know the warning signs of suicide and mental illness resources available within the community.

PALS THRIVE is a three-pronged program consisting of education, leadership and treatment. Its motto, “No One Sits Alone,” reflects its mission of preventing suicide and fostering an inclusive environment in schools.

In a partnership with the PALS THRIVE program and the Alachua County Crisis Center, the Alachua County School Board is piloting Hope Squad, a peer-to-peer program where students can learn to identify peers who may need help and suggest appropriate services for them.

According to Suicide Awareness Voices of Education, or SAVE, a national suicide awareness and prevention program, warning signs of suicide include:

  • Talking about wanting to die or to kill oneself
  • Talking about suicide methods
  • Talking about feeling hopeless or having no purpose
  • Talking about feeling trapped or being in unbearable pain
  • Talking about being a burden to others
  • Substance abuse
  • Anxiousness, agitation and recklessness
  • Irregular sleeping patterns
  • Withdrawing or isolating oneself
  • Rage or talking about seeking revenge
  • Displaying extreme mood swings

PALS THRIVE Administrative Coordinator Denise Thomas, creator of the term “S talk,” also suggested alternate resources and services for those in need, including UF Health Psychiatry’s outpatient locations, Meridian Behavioral Healthcare, the National Suicide Hotline, the Alachua County Crisis Center, the Village Counseling Center and numerous University of Florida mental wellness programs.

“We want to work as a community,” PALS THRIVE Clinical Coordinator Yanel Casanova, LMHC, said. “If PALS is not the perfect fit, we will help you find what you need. We are strongest when we work together.”

To kickstart seven days of education, awareness and suicide prevention measures, PALS THRIVE will be screening the 2016 documentary “Not Alone” at The Hippodrome Theatre at 5:30 p.m. on Monday, Oct. 8. “Not Alone” focuses on signs of suicide and how to appropriately discuss mental illness with peers.

PALS THRIVE plans to continue to play the documentary in schools as a tool to connect children, parents and the parent-teacher association to this very important message.

Mental Illness Awareness Week is Oct. 7 to 13.

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Coming Clean

Kimberly WilloughbyKimberly Willoughby never felt good enough. Too short. Too overweight. She believed that everyone else deserved a good life, but not her.

It’s taken her many years and countless tears, but today, at age 48, she’s living the life she’s always dreamed about. But first, she traveled a road filled with hardship, addiction and, at last, recovery.

Growing up in Mount Sterling, Kentucky, Kimberly graduated from college, became a nurse, married and had two children. But throughout much of her life, Kimberly struggled with her first addiction: food. At 300 pounds, Kimberly underwent gastric bypass surgery in 2004.

Adapting to a new lifestyle, she was optimistic that her old habits would disappear. But in 2007, her marriage began to suffer. Kimberly filed for divorce and moved out. For six months, she experienced insomnia and drank every night. Kimberly and her husband reunited in 2008, but their issues were not resolved.

“I went home for the kids,” she said. “My whole world revolved around being a mom.”

One day, Kimberly learned she would be a grandmother, but the good news came with a condition from her daughter: Kimberly would not be allowed to see her grandchild if she continued to drink. She started sneaking her drinking, hoping her daughter and husband wouldn’t find out.

In 2014, Kimberly and her daughter tossed around the idea of moving to Florida, but those plans changed when her daughter married a man in the military and they moved to a military base in Germany.

“I cried every day,’’ Kimberly said. “I missed my kids so bad.”

Kimberly — along with her husband, mother and stepfather — proceeded with the move from Kentucky to Inverness, Florida. She hoped that a change of scenery would mend her marriage and her outlook on life. For a few months, it worked. Kimberly did not touch a drink. But soon, she her marriage started to unravel again.

“We had nothing in common and he was very angry,” she said. “I kept thinking, ‘How am I going to leave now that we’ve all made this move?’”

By 2016, Kimberly was drinking all day, every day. Kimberly found ways to drink as much and as often as she could. Before work. At work. In a closet. In her water bottle.

Things went from bad to worse when she started abusing prescription medications. Kimberly had chronic back pain from a work-related injury she suffered at age 19, and a doctor prescribed her Tramadol, a pain reliever. Around the same time, she had a surgery and was prescribed Percocet, another pain medicine. From then on, Kimberly took any prescription she could get her hands on.

Kimberly decided to quit her job as a nurse at a local hospital, but on her last day, she was caught drinking and had to complete a urine screening. She was reported to the Florida Department of Health and was referred to Scott Teitelbaum, M.D., F.A.S.M., the medical director of the UF Health Florida Recovery Center, or FRC, for an evaluation. In July, she grudgingly met with Teitelbaum, who recommended a treatment plan and explained that she had seven days to choose a facility for care.

Upset and angry, Kimberly decided instead enrolled in a six-week treatment program in Georgia. There, she stopped drinking but lied her way through therapy. She didn’t fool anyone.

“They said, ‘If you’re not going to talk to us, then there’s nothing to work on,’ ” she said.

Kimberly attended Alcoholics Anonymous, but she didn’t embrace AA’s mission.

“I stayed dry for 11 months but still wanted to be dead. I didn’t want to wake up,” Kimberly said. “I’d drink more and more, thinking, ‘When I black out this time, I won’t wake up.’ Then, I’d wake up mad.”

After months of not drinking, Kimberly started relying on over-the-counter diet pills. Instead of the suggested daily intake of two pills, Kimberly was taking up to 12.

Meanwhile, a storm continued to brew at home.

“My husband didn’t believe I was going to AA,” she said. For a while, her husband would go with her to AA, watching her every move but not participating.

Kimberly started using Tramadol again. When she ran out, she started taking her dog’s medications.

She had to take a random urine drug screening on a Monday, but this time, she took a handful of pills the weekend prior, hoping to get caught. Kimberly reported for another evaluation with Teitelbaum at the end of July of 2017. She brought letters of recommendation from participants at AA, her manager, co-workers and her church to show how well she had been doing.

Teitelbaum called her personally to tell her that her levels were too high to have only taken a handful of pills over the weekend. Now was the time to come clean.

“He [Teitelbaum] got my drug test back and said my levels were through the roof,” Kimberly said. “He said, ‘You’re going to have to work on yourself or you’ll never stay clean.’ I will forever believe that he gave me the opportunity to save my life.”

Teitelbaum recommended inpatient treatment to the board of nursing where they contacted her with a list of three to four facilities to attend. This time, Kimberly was ready to participate in treatment. On Aug. 21, 2017, she was admitted to the UF Health Shands Psychiatric Hospital and checked into the FRC the next day. Kimberly enrolled in the partial hospitalization program where she lived at the addiction treatment facility and was treated by Jamie Smolen, M.D., a UF Health psychiatrist, and Jorelle Degen, L.M.H.C., a UF Health substance abuse therapist.

Kimberly said the turning point came when her husband attended a therapy session.

“He was asked on a scale from one to 10 how happy are you with your marriage, and he said a six or a seven,” Kimberly said. “I deserve a 10. I want to be blissfully happy.”

Her husband left that day — for good. Kimberly connected with a women’s advocacy group, and continued to work on her addiction and self-care.

On Oct. 3, 2017, Kimberly completed the recovery program and moved into a sober house. She continued to practice all of the recovery steps.

In January, 2018, Kimberly returned to work as a nurse. She continues to remain very active at the FRC and goes back one to two times a week to meet for after care. She’s also involved in an FRC reunion event and still sees Smolen. Kimberly stayed in Gainesville when the rest of her family moved back to Kentucky. Her divorce was finalized in February.

Today, Kimberly is employed, spends time with her Dalmatian “Katie,” continues therapy, maintains healthy relationships, practices yoga, sponsors other recovering addicts and teaches a nursery class at her church on Sundays.

“I love my life,’’ she said. “I’m proud of the woman I’ve become.”

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Six Things You Should Know About Prostate Cancer

Thomas F. Stringer, M.D., a board-certified urologist and associate chairman of UF Health Urology, provides an expert’s perspective on a disease that affects 11 percent of men: prostate cancer.

September is Prostate Cancer Awareness Month.

Prostate cancer is common and may present without signs or symptoms in early stages.

“Second to lung cancer, prostate cancer is the the next most common cause of cancer death in men in the United States,” Stringer said. However, according to the Surveillance, Epidemiology and End Results Program of the National Cancer Institute, the five-year survival rate of men diagnosed with prostate cancer in the U.S. is approximately 98 percent. Tumors within the prostate grow slowly and usually do not push against any major anatomical structures, so signs and symptoms may not be noticeable in early-stage prostate cancer.

Risk factors may render men more likely to develop prostate cancer.

Even though the cause of prostate cancer is unclear, certain risk factors may increase men’s risk of developing the condition.

  • The older you are, the higher your risk of developing prostate cancer.
  • African-American men are roughly 70 percent more likely to develop prostate cancer.
  • Men with a family history of prostate cancer are approximately twice as likely to develop the disease.

For men at high-risk, the PSA-screening discussion and decision should be initiated as young as age 40.

Prostate cancer screening can detect cancer.

Screening, or looking for cancer before it causes symptoms, can help find prostate cancer at its earliest stages to provide effective treatment. The goal of prostate cancer screening is to identify high-risk, localized prostate cancer that can be successfully treated and to prevent the mortality and morbidity associated with incurable advanced or metastatic disease. Although the U.S. Preventative Service Task Force concluded that men should begin screening at 55, the Prostate Cancer Advisory Council feels this recommendation falls short of addressing risk factors that could influence when men should be screened. Stringer said, “There are populations who are at risk earlier, so I would recommend African-Americans, especially those with a strong family history of prostate cancer, start screening in their early 40s.” He also recommends those exposed to Agent Orange, a powerful herbicide widely used during the Vietnam War, be screened earlier. Talking to a health care provider about risk factors is important in deciding whether or not to be tested earlier.

Prostate cancer is treatable if diagnosed early.

Treatment recommendations depend on several factors, including the symptoms, type of cancer and patient’s preferences. For example, if the cancer meets criteria for low-risk disease, the patient may be eligible for active surveillance. “The reality is that not everyone has to be treated for prostate cancer,” Stringer said. “Active surveillance means that you’re actively watching—drawing blood tests, checking the prostate, re-biopsy and re-imaging the prostate. It’s all a part of the process to make sure the disease isn’t progressing while we are paying attention to it.”

Medical research is working to make progress in prostate cancer prevention and treatment.

Physicians and scientists around the world are committed to learning more about the causes, treatments and possible preventions of prostate cancer. Researchers are working to detect prostate cancer earlier and more precisely, and looking for methods to treat prostate cancer more effectively. UF Health is using technology to take a 3-D image of the prostate by ultrasound and fuse the image with magnetic resonance imaging, or MRI, scans to do biopsies based on the target. “Certainly, it’s more accurate in detecting high-risk prostate cancer. We are working on a simulation of teaching residents how to do this perform the technique of image-guided prostate biopsy without having a patient there,” Stringer said.

If your life has been touched by prostate cancer, you are not alone.

Patients and their families can be heavily affected by the diagnosis of prostate cancer. Support and advocacy groups can offer a place to turn for help and empowerment. These groups gather a community of people who share a diagnosis to share information, encouragement and support. Stringer recommends those interested in patient advocacy explore the Florida Prostate Cancer Advisory Council website. “We have a website that discusses screening, management, up-to-date research around the state and clinical trials. Part of that interaction is that it has patient advocates.” Advocacy and support groups offer an outlet to talk about feelings, a place to receive suggestions, and a forum to learn coping skills to changing situations.

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Preventing Sepsis & Treating Deadly Infections: Adam Nickels’ Story

Adam Nickels felt fine, until he didn’t.

Nickels was working toward a doctorate in aerospace engineering at the University of Florida late last year. He enjoyed being active; lifting weights, hiking, biking and riding his motorcycle. Christmas was just around the corner, and Nickels was looking forward to the holiday break, blissfully unaware that he soon would be fighting for his life.

On a Monday morning, Nickels went to work feeling normal. Around midday, he began to feel like he had the flu. Shivering with fever, Nickels went home and decided not to go to into work the next day.

Nickels knew he was sick but didn’t have any inkling how bad he was until a coworker’s wife and UF medical student, Cindy Medina, stopped by.

“She came over and gave me some soup and noticed spots on my hands that I hadn’t seen,” Nickels said. “She told me that I needed to go to the hospital because illnesses that had spots were not good.”

Though Nickels had never wanted to be an interesting medical case, his mysterious sickness rapidly turned him into one. He went to the UF Health Shands Emergency Center – Springhill, where doctors quickly decided to transfer him to UF Health Shands Hospital.

Nickels began to realize that things were seriously wrong with his health.

“I went to use the restroom and by the time I got back to my room, things fell apart,” Nickels said. “I got viciously sick. I was throwing up and my head was in the most pain it’s ever been in.”

During the ride to the hospital, Nickels’ pain was so severe that friends had to answer medical questions for him. Once there, doctors performed a variety of tests that quickly confirmed their suspicions.

Nickels had meningococcemia, a blood infection caused by a bacterium called Neisseria meningitidis, which can also cause meningitis B. The rare infection can cause a person to feel sick in the morning and die by the afternoon. As this bacterium is known to thrive on college campuses, where students live and interact in close quarters, most university students are aware of the risk and are vaccinated for N. meningitidis before their first year on campus. This vaccine, however, does not cover all strains of the infectious agent. Nickels, who thinks he had the vaccine, doesn’t know how he could have contracted the illness.

“There was nothing out of the ordinary that I did the couple of days before that,” Nickels said. “I have no idea how I could have gotten it.”

After suspicion rose that Nickels could have the rare infection, but before his diagnosis, his emergency department doctor, Matthew Shannon, M.D., admitted him to the hospital and alerted hospital epidemiologist and infectious disease doctor, Nicole Iovine, M.D., Ph.D.

Iovine sees the flow of events in Nickels’ case as a prime example of excellent interventionist medicine.

“When Dr. Medina realized that Adam needed to go to the emergency department, that was a life-saving intervention. Dr. Shannon realizing that he couldn’t go home, but he needed to be admitted: that was the second life-saving intervention. That’s huge,” Iovine said. “Then, when he got here, it was realized that he had this potentially life-threatening infection, meningococcemia, and he was treated appropriately and rapidly.”

Iovine was called in to ensure that no significant exposures of the bacterium to UF Health staff had occurred. She works on a team treating patients like Nickels who develop an infection that, left untreated, can spiral into a condition called sepsis.

Sepsis is the body’s extreme response to severe infection. It’s common, deadly and happens fast, as blood becomes overwhelmed by bacteria and organs shut down due to low blood pressure. Sepsis is the final stage of infection and is the number one cause of mortality in hospitals.

“Sepsis is the final common pathway by which many common infections can kill you,” Iovine said. “If someone has terrible pneumonia, for example, we may know that the infection is in the lungs, but the overwhelming response to that infection, which is sepsis, that’s how people die.”

Iovine works with a team to implement a set of procedures created to ensure a standardized approach for preventing sepsis. Through this, when patients come into the hospital, nurses observe them for signs of sepsis risk. If signs are evident, special nurses, called STAT nurses, are called in to perform a sepsis evaluation. If sepsis is still a possibility after a final physician evaluation, steps for sepsis prevention are activated.

Due to these protocols, Nickels was immediately administered broad-spectrum antibiotics and sepsis was prevented. Today, he is alive to tell his story of beating the odds and overcoming meningococcemia.

“His case was a beautiful example of when things work right,” Iovine said. “It was a great example of how everything works with protocol. Timing is key. Acting early saves lives, and I can tell you, without any reservation that if this had not been caught early, he would be dead.”

After leaving the hospital, Nickels had a midline intravenous catheter for continued antibiotic infusion. He was constantly winded and was unable to do anything active for about a month. Residual headaches from the illness forced him to slow down his studies, but Nickels managed to make enough progress that, miraculously, he never fell behind.

Nickels went on to graduate from UF in May of 2018. He is now back to his normal routine and is as active, if not more so, than he was before his illness. Due to the quick and effective work of UF Health physicians, Nickels has no permanent damage.

“I definitely use a lot more hand sanitizer,” Nickels said. “I could’ve died, lost a foot or arm, been partially blind or lost my hearing, but I was given this gift of being okay again. You have to appreciate that. You walk away with a profound sense of gratitude for everybody.”

In Iovine’s mind, while Nickels case ended positively, it’s impossible to leave a sepsis-prevention case and feel like you’re finished, especially when death by sepsis is still so common. For this reason, Iovine, other physicians, nurses and pharmacists meet in a sepsis committee three times a week to review every case of sepsis that occurs at UF Health.

“As part of that review of each case, we look at if we did everything correctly, if there are ways we can improve, and provide feedback to the caretakers to see how we can make it better and improve the process,” Iovine said.

Due to the dedication of the sepsis-prevention team, there has been a 26 percent decline in sepsis mortality at UF Health Shands Hospital since 2015, but Iovine is not satisfied.

“We can always do better when it comes to sepsis prevention,” she said. “So, we’re not going to be content, and we’re never going to sit back.”

UF is leading the way in sepsis research with The University of Florida Sepsis and Critical Illness Research Center, which studies long-term effects and outcomes in patients treated for sepsis in the surgical and trauma intensive care units at UF Health Shands Hospital. The first of its kind in the nation, the research center is dedicated to developing clinical solutions for sepsis and for conditions that develop after the infection.

September is Sepsis Awareness Month, and UF Health encourages patients, employees and the public to educate themselves about the signs and symptoms of sepsis.

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All of Us

All of Us

David R. Nelson, M.D.
Interim senior vice president for health affairs, UF President, UF Health

Betsy Shenkman, Ph.D.
Chair, Health Outcomes and Biomedical Informatics, UF

UF Health is taking part in an ambitious nationwide research effort with the goal of trying to accelerate research and improve the health of all Americans. The All of Us Research Program hopes to gather health information from a cross-section of 1 million or more people in the United States over the next decade to help shape the future of health care.

Researchers around the world will use the data gathered by All of Us, a National Institutes of Health initiative, to study the impact of differences in lifestyle, environment and genetic makeup on individual health. To be successful, the program needs participants who care about improving the health of everyone, people who are willing to share information about themselves that could help cure diseases in our lifetime.

You can learn more about this initiative when the All of Us Journey arrives at the University of Florida’s academic health center, outside the George T. Harrell, M.D., Medical Education Building, from 10 a.m. to 4 p.m. Friday, and at Gainesville’s Depot Park from 10 a.m. to 4 p.m. on Saturday.

Those interested in being part of this nationwide effort can visit a specially equipped vehicle and check out interactive exhibits. They can ask questions of the staff and fill out a contact card so staff can reach out to them later. People can also choose to have the risks and benefits to this research study explained, and if you agree, you can enroll in the project at this time.

Those who agree to participate later will complete online health surveys and, in some cases, be asked to go to a partner center to have their physical measurements taken and to provide blood and urine samples.

This initiative represents a new chapter in precision health, which is a fundamental shift to more proactive and personalized health care that empowers people to lead healthy lives. It takes into account factors like where you live, what you do and your family health history. The goal is to be able to tell people the best ways to stay healthy. If someone does get sick, precision health may help health care teams find the treatment that will work best. Unlike a single research study focused on a specific disease or population, All of Us will serve as a resource for thousands of studies, covering a wide variety of health conditions.

UF is among more than 25 institutions chosen to implement the All of Us Research Program. UF is part of the SouthEast Enrollment Center network, led by the University of Miami Miller School of Medicine, and including Emory University and the Morehouse School of Medicine in Atlanta. The network will work with the OneFlorida Clinical Research Consortium, whose coordinating center is led by the UF Clinical and Translational Science Institute. This network aims to strengthens the program’s reach into underserved populations, including lower-income, Hispanic and Latino, African-American, Native American and rural communities. UF’s goal is to enroll 20,000 participants over the next five years.

In this era of ubiquitous avenues of online information, and the companion concerns about privacy and high-profile data breaches, All of Us has taken great steps to safeguard participant information. All data, including your genetic data, are encrypted on protected computers that are security-tested regularly. Participants’ names and other direct identifiers, such as your address, are removed and replaced with a code.

The data will be accessible to researchers in the U.S. and around the world to accelerate health research and medical breakthroughs. There are strict rules researchers must follow to access the data to keep participant information secure.

For precision health to succeed, researchers and clinicians need the best information about the populations they serve. Such medical databases already have led to new discoveries in areas ranging from cancer treatment to the reduction of medical treatment errors. Researchers have homed in on disparities in health care, shown how preventive services can reduce mortality, and influenced health policy decisions on a national level.

Advances in technology are transforming health research today at speeds unthinkable in the not-too-distant past, enabling instant collaboration among scientists around the world. These advances are leading to new ways to tailor prevention and care strategies to patients based on their genetic composition and health history.

People like you.

Visit the All of Us Journey

The All of Us Research Program is a nation-wide research program that seeks to enroll one million people and they are looking for your help. Through health surveys, electronic health records, physical measurements and more, researchers are able to take the information you provide in this study and use it to advance precision medicine.

Precision medicine is health care that is based on you as an individual. It takes into account factors like where you live, what you do, and your family health history. Precision medicine’s goal is to be able to tell people the best ways to stay healthy. If someone does get sick, precision medicine may help health care teams find the treatment that will work best.

The All of Us Journey is coming our way to see what makes Gainesville unique and you’re invited.
You have two chances to visit:

  • September 21, 2018
    10am-4pm

    In front of the Harrell Medical Education Building
    Behind UF Health Shands Children's Hospital
  • September 22, 2018
    10am-4pm
    Depot Park
    Also featuring the UF Mobile Outreach Clinic

Find Out More

You can join the All of Us program today by visiting: https://www.joinallofus.org/en

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A Gentle Paw

A wagging tail, a cold nose, a gentle paw. Our canine companions can be the best stress relievers at the end of a long day. For dog lovers, “man’s best friend” is exactly that, and for hospitalized patients with pets at home, it can be hard to be away from them.

Fortunately, pet therapy volunteers and their own dogs have been spreading cheer to patients, visitors and staff at UF Health hospitals since 1995. At the UF Health Neuromedicine Hospital, these teams brighten the days of patients admitted to the hospital as well as of those in the waiting room at the UF Health neurology and neurosurgery practices.

A dedicated team of graduate students affiliated with the Neuromedicine Interdisciplinary Clinical and Academic Program, or NICAP, in the UF College of Medicine is working to increase the number of pet therapy teams visiting the neuro hospital from the current 12 to 50.

NICAP Pet Program

How to Volunteer

To become a volunteer team in the pet therapy program, individuals with dogs must complete an application process that includes online orientation, proof of pet vaccinations, proof of an applicant’s immunizations and several onsite shadowing opportunities.

For additional application details, visit the Pet Therapy page on the NICAP website. For more information, contact the NICAP program at nicap@health.ufl.edu or 352-273-6961.

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Beyond the Field

Jacob JonesGrowing up in the South, Jacob Jones, 30, was raised on football. Jacob always committed himself physically and emotionally to the game that would lead to team victories and good times alongside his dad, also known as ‘’Coach.’’ But for nearly a third of his life, Jacob Jones had his own share of personal losses. Jacob suffered from an addiction to opioids.

In 2006, Jacob, a native Alabaman, was recruited by the University of Alabama Crimson Tide football program to play as a wide receiver. But during his freshman year, he struggled to acclimate himself to college life nearly four hours away from home. Jacob, who suffered from anxiety and panic disorder for much of his life, had difficulty sleeping and controlling his anxiety. He turned to drinking and smoking marijuana. During the same year, Jacob developed pneumonia, and was given a prescription for liquid hydrocodone, a narcotic commonly used to treat coughs that also acts as a pain reliever.

“I remember loving how it took away my anxiety,” Jacob said. At last, he slept well and felt great. But this new feeling came at a price.

Within a couple of days, his prescription that was intended to last for weeks had lasted only a couple days. The narcotic had piqued his interest and, slowly, he introduced himself to other painkillers.

During his second year on the team, Jacob tore his quadriceps for his second time during practice, and started to experience more frequent tears with internal bleeding. After consulting with his family, team physicians and his coach, Jacob was placed on medical leave from football.

In an excerpt from him upcoming book, Jacob writes,“I remember saying to a friend ‘now I can sleep in, go to parties, be a normal college student and not have to worry about being hungover for a 6 a.m. workout.’ I could do whatever I wanted without any repercussion or regulation. This, at least, was my thinking.”

To ease the pain, he was prescribed hydrocodone for a short time, and started buying Xanax and OxyContin off the street. In 2008, Jacob continued his schooling and moved in with roommates who were also using the drug.

“Instantly, all of my anxieties, fears and pains were gone [while on drugs],” he writes. “This is exactly what I needed at this point in my life. My dreams of playing football were gone. My whole identity was wrapped up in being an Alabama football player, and now that I was not that, my life was dull. After the initial prospect of freedom and partying, I quickly became depressed, anxious and less social. I felt like I let everyone down. My grades continued to slip, there were no goals in my life, and my network of friends kept evolving to meet my lifestyle.”

As Jacob started to feel the euphoria associated with the drug, he also continued to suffer from anxiety and poor sleep. After three years of abusing drugs and alcohol, Jacob reached out to his parents for help. Surprised and concerned, his parents urged him to come home. He packed his bags, turned in his team football jersey and unenrolled from the university.

In 2010, Jacob went to his first rehab facility for 30 days, but none of his treatments stuck. He reverted back to relying on alcohol and starting using opiates only one month later. This time, going even further than he had left off before rehab. Two years later, he was arrested for possession of a narcotic and was mandated to go through drug court. For the next year, he was required to complete random drug tests on a weekly basis and attend court every Friday to review his progress.

In December 2014, he hit rock bottom. Jacob decided to withdraw from drugs cold turkey and started to feel manic. His increased heart rate was reaching a dangerous level, and he was admitted to a critical care coronary unit. After being discharged from the unit, Jacob spent three weeks in a psychiatric ward.

Three months after leaving the hospital, Jacob started feeling better. He received a phone call from a family friend who owned a restaurant franchise and asked him if he wanted to manage a store. For two years, Jacob spent countless hours focusing all his energy on the restaurant. Then, old habits returned.

“I basically crashed and burned,” he said.

Jacob quit his job at the restaurant as his life crumbled around him. His relationship with his family became strained, and his focus returned to using drugs.

“I remember my aunt telling me, ‘Your family has almost had enough of you where they’re almost done with you.’ I never thought that was a reality. They [my parents] have been there for the good and bad. I never really thought they’d say you can’t come around anymore, until now,” Jacob said.

Jacob wanted to throw up the white flag – this time, for good.

Initially, Jacob enrolled in a detox facility outside of Tallahassee and was scheduled to start at a Christian work camp for men suffering from substance abuse. After the completion of his detox program and en route to the work camp, Jacob had second thoughts. He was concerned that the absence of certified psychiatrists and psychologists at the work camp would set him up for failure after completion of the program – prompting his dependence on drugs to creep back up. Jacob asked a family friend who was driving to stop and help him think through his options. Over a smoothie, Jacob and his friend had a conversation about what to do.

The family friend, whose close friend had also dealt with addiction, suggested the UF Health Florida Recovery Center in Gainesville. After learning more about the center’s comprehensive approach, the decision was made for Jacob’s parents to take him to Gainesville to give him the best opportunity for addiction recovery. Jacob felt good about the decision, knowing that not only would he be diagnosed for his addiction, but treatment would be geared specifically toward his anxiety and panic disorder.

On May 15, 2016, Jacob arrived to the Florida Recovery Center and began the intake process, which involves assessing the patient’s condition. While being asked by Anthony Russell, M.D., about how he felt about his recovery on this go-around, Jacob responded: optimistic.

“Most people at that point are irritated or upset. I was going to do whatever they told me to do, whatever it takes. Just do my best,” he said.

Jacob enrolled in the three-month partial hospitalization program where he lived at the addiction treatment facility, and participated in individual and group therapies.

“The process groups were great because they were a very close-knit group,” he said. “I was able to share things that I never was able to share previously. It was good and tough. There were things at that point that I was ashamed of. The men’s community group was also very inviting. They were all men striving for the same thing and it was very inspiring to be around men who were open and honest.”

After spending 90 days in all-day treatment, Jacob spent another month and a half living at the recovery center, and meeting with a counselor once a week.
Jacob compares the process to a releasing a goldfish into a bowl. When a goldfish is brought home in a bag, the bag is submerged in the same bowl of water it will swim in. All the meanwhile, the fish is getting acclimated to the water temperature and its surroundings. Once the fish has spent enough time in the bag underwater, it is released into the bowl and continues to adapt to the outside waters.

Nearly two years later, Jacob has moved to Gainesville to build a new life.

“[While at the Florida Recovery Center] I started to invest in the people here and built a strong network over five months’ time,” he said. “I found a good church and I’m very active.”

Jacob continues to chronicle about his journey with addiction and is writing his first book.

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A New Age for Colorectal Cancer Screening

New colorectal cancer screening guidelines no longer make colonoscopies a rite of passage for 50-year-olds. Instead, 45-year-olds will celebrate their mid-forties by making an appointment most people dread.

Colorectal cancer starts in the colon or the rectum; it can also be called colon cancer or rectal cancer, depending on where it begins. The two cancers are grouped together because of their similar features, such as affecting the large intestine.

Typically a cancer found in people older than 50, colorectal cancer is the third most common cancer among men and women and the third leading cause of cancer-related deaths.

The guidelines for colorectal cancer screenings were changed due, in part, to data showing an increase in the rate of the cancer among younger populations.

Younger rectal patients are unique

A study led by UF cancer researcher Dr. Atif Iqbal, M.D., found that younger patients with stage two or three rectal cancer did not see the same survival benefit from receiving the current recommended treatments, chemotherapy and radiation, as did older patients.
The findings suggest that early-onset colorectal cancer may differ biologically in its response to treatment.

“The standard of care was established using previous studies that are predominantly based on patients who are older than 50 years of age,” said Iqbal. “However, something is different about this younger group — perhaps biologically —leading to these results.”

Prior to the study, colorectal screening guidelines recommended people aged 50 or older seek screenings due to the cancer being historically considered a disease for the older adults. Now, with the number of younger patients with colorectal cancer on the rise, the age has decreased to 45.

The study is the largest study of rectal cancer to date to include specific survival data for the younger population.

“This is important because the data we are providing right now in our clinics is not accurate, as the data has not been individualized for the younger population,” Iqbal said. “However, our study provides practicing physicians with the ability to offer prognosis, which is personalized to the younger population.”

What’s next?

Iqbal’s research highlights the paths future studies for this population should take and could drastically change how colorectal cancer is treated in younger patients.

“There are previous studies that show that, overall, the mortality rate for colorectal cancer is improving, but the rates for younger patients have increased progressively over the last 50 years,” Iqbal said.

Future care for younger colorectal cancer patients should focus on the possibility of avoiding extra treatment toxicity, such as chemotherapy and radiation, he said.

“Because older individuals established the standard of care, we’re using it on everybody — but now we see that younger patients don’t really respond that well to it,” Iqbal said.

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Breastfeeding Across Cultures

Tathiane and OliviaTathiane Mallett moved to the United States from Brazil with her husband, leaving behind close friends and family. She went through a 30-hour labor without an epidural or anesthesia and gave birth to a beautiful girl named Olivia. She then moved from Michigan to Gainesville when her baby was only 2 weeks old.

After so much hardship, Tathi was convinced that breastfeeding, at least, would be easy. She found it to be quite the opposite.

While in the hospital after Olivia’s birth, Tathi experienced extreme discomfort during breastfeeding. Her mother, visiting from Brazil, assured her that soon she would get used to the feeling, and the pain would go away, just as it had for her sisters.

By the time Olivia was 6 weeks old, however, she was still fussy during breastfeeding and was barely gaining any weight. Tathi was very concerned.

“I was getting quite frustrated. I kept thinking, ‘What am I doing wrong?’ ” Tathi said.

Tathi went to see Mary Ryngaert, a lactation consultant at The Center for Breastfeeding & Newborns, within the department of pediatrics at UF Health, carrying a video of her breastfeeding technique. There, Olivia was diagnosed with tongue-tie, a congenital condition in which tissue connects the tongue to the floor of the mouth, making it difficult for a baby to latch during breastfeeding.

After a small procedure to fix the tongue-tie, Olivia began breastfeeding normally, something Tathi describes as nothing short of a miracle.

“She was not as fussy anymore,” said Tathi, “and she gained almost a pound in six days.”

Post-procedure, however, Tathi had to re-learn how to breastfeed, as she’d grown so accustomed to nursing a baby with tongue-tie. When latching was still difficult, Ryngaert recommended that Tathi join the UF Breastfeeding Support Group.

The UF Breastfeeding Support Group is made up of moms and moms-to-be, as well as a lactation specialist. There, women can voice their questions and concerns about breastfeeding in a tight-knit supportive environment. For Tathi, it meant a lot to have both breastfeeding moms and a specialist in the same room, giving her a perfect mix of personal support and professional advice.

“If you just come here, you know you will get out of your house at least once a week and you will see other adults,” said Tathi. “You’ll spend an hour and a half or two hours just talking and laughing.”

Continuing to breastfeed was important to the new mom for both personal and cultural reasons. According to Tathi, women in Brazil are judged much more harshly if they choose not to breastfeed as compared to in the United States. Tathi felt that pressure, even as far as she’d come from her home country.

However, the physical experience of breastfeeding in Brazil is also entirely different than in the U.S. In Brazil, breastfeeding publicly is deeply accepted, while in the United States, women are expected to cover up and breastfeed privately, a style of breastfeeding that Tathi describes as lonely.

The cultural deviation is evident even in the recommendations for time spent nursing. In Brazil, women are expected to breastfeed for an hour each session, but Tathi found that this meant that breastfeeding took up the vast majority of her day. After attending the UF Breastfeeding Support Group, Tathi discovered that American breastfeeding recommendations differed greatly from those in Brazil, with American guidelines recommending shorter feeding times, among other concepts that Tathi describes as more practical.

Tathi still struggled, however, to reconcile the differences between the culture she’d grown up with and the one she was becoming a part of.

“It was really confusing because it was like, should I follow my culture? Should I follow the one I’m in now?” said Tathi.

Tathi eventually chose to follow American recommendations and is successfully breastfeeding Olivia. She owes that success, she said, to both her lactation specialist and the UF Breastfeeding Support Group, which allowed her not only to overcome her breastfeeding difficulties but also to connect with other moms in the same circumstances.

“I don’t think I would’ve kept the whole breastfeeding thing up if it wasn’t for Mary Ryngaert and the breastfeeding support group, for sure,” said Tathi. “It was too painful and every two and a half to three hours, I was crying, saying I can’t do this.”

Now, even when having a difficult day or nursing session, Tathi knows that she can.

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UF Health Plastic Surgeon Saves Little Girl’s Leg

For young Jennyfer Carranza, an ordinary day playing in the yard quickly turned catastrophic when she got too close to her father’s lawn mower. Jennyfer’s shoelaces got caught in the mower’s blades, pulling her closer to the machine and slicing a deep cut into one of her heels.

“One doesn’t expect that type of thing to happen, and it’s even worse when it happens to your child,” said Jennyfer’s mother, Laura.

Jennyfer’s parents brought her to UF Health, where Harvey Chim, M.D.