Living with a Lung Transplant
After the Surgery
- Patients can expect to be in the hospital for 10 to 20 days after surgery.
- Patients and their caregivers live in Gainesville for four to six weeks once they are discharged from the hospital.
Our social worker can help you secure transplant housing while living in Gainesville. This is to allow you to recover from surgery, learn how to take care of your new lungs, participate in physical therapy and attend weekly follow-up clinic appointments.
We teach you how to take care of your new lungs, as well as how to create a healthy diet and exercise program.
After receiving healthy new organs, patients are eager to return to their communities and begin their new lives.
Most patients return home after discharge with arrangements for laboratory monitoring and evaluation by the transplant team and local physicians. Patients who live far from UF Health Shands Hospital sometimes have to stay in the Gainesville area for a few weeks after their transplant. The UF Health Shands Transplant Center housing is available for lung transplant patients and their families during the pre- and post-transplant phases.
Each patient's length of stay depends on various factors, including prior hospital course, stability of immunosuppressive dosages and the need for other care such as wound management, physical therapy and intravenous drug therapy.
Recovery involves regular laboratory testing at a local hospital or clinic laboratory. Results are reported to the transplant office and can be forwarded to the referring physician's office if desired. These results, especially pulmonary function tests, are monitored closely by the transplant coordinator and by patients using a transplant logbook. If an abnormal trend is identified, further evaluation and diagnostic tests may be warranted. Rejection and infection are most likely to occur within the first six months after transplant; therefore patients are followed more intensely during that period.
Although the Lung Transplant Team follows patients on a regular basis for life, primary care is usually returned to the patient's referring physician about six months after surgery. In most instances, patients will return home with a healthy Lung. The greatest challenge for the referring physician is to monitor immunosuppressed transplant patients for evidence of infection and rejection, while providing for their other medical needs. The referring physician needs to pay special attention to the possibility of drug interactions when prescribing new medications.
Lung Support Group
The the UF Health Shands Transplant Center's Lung Transplant Program founded a support group that provides education and psychosocial support for patients who have lung disease and are awaiting lung transplants and who have been transplanted.
Adult Lung Transplant Support Group
- This weekly support group is facilitated by UF Health Shands Transplant Center social worker, Micki Luck and co-facilitated by a transplant coordinator.
- The group is open to patients with advanced lung disease, listed patients awaiting transplant and transplanted patients, as well as caregivers. We do require that our patients undergoing transplant evaluation testing attend support group the week they are here.
- The group meets in the UF Health Shands Cancer Hospital on the 5th floor in the conference room nearest to 5 east. It begins at 3:45 p.m. until 4:45 to 5pm on every Wednesday.
Use a Notebook
Please use a three-ring binder notebook to keep track of your home monitoring information. Bring this notebook with you to every clinic visit, every bronchoscopy visit or if hospitalized.
Purchase a bathroom scale, a blood pressure machine, and an oral thermometer. This monitoring is done to look for infection, weight changes, and blood pressure changes.
In your notebook, you will record:
EVERY MORNING AT 9:00 AM
- Blood Pressure
EVERY EVENING AT 9:00 PM
- Blood Pressure
CALL DAY, NIGHT, WEEKEND OR HOLIDAY FOR A TEMPERATURE OF 100.0°F OR GREATER!
Perform Spirometry Daily
- Spirometry is used to monitor for rejection. The number value recorded is the FEV1 (forced expiratory volume in 1 second).
- Record the highest number value out of three attempts.
- Bring your spirometer with you to every clinic visit, bronchoscopy visit or when hospitalized.
- AVOID SHOPPING IN CROWDED PLACES, especially during the first 6 months after your transplant.
- WEAR A MASK IN PUBLIC PLACES, such as hospitals, churches, movie theatres, shopping malls, etc. THIS IS A LIFELONG PRECAUTION.
- DO NOT ALLOW PEOPLE WITH FEVERS TO VISIT YOU IN YOUR HOME. People with a “cold” (no fever) should wear a mask and everyone should wash their hands before seeing you.
- DO NOT EAT FROM BUFFETS OR SALAD BARS.
- DO NOT EAT UNDERCOOKED MEATS OR RAW SEAFOOD, such as sushi or oysters.
- DO NOT PERFORM OUTDOOR “CHORES,” such as mowing the grass, planting flowers, planting gardens, etc. Doing so risks exposing you to molds, fungus, or spores from the dirt that could harm your new lung(s).
- DO NOT ADD ANY NEW MEDICATIONS, INCLUDING “OVER-THE-COUNTER” MEDICATIONS WITHOUT CONSULTING WITH YOUR COORDINATOR FIRST.
Patients are not allowed to use the following “over-the-counter” medications due to kidney toxicity:
- Ibuprofen products
- Non-steroidal products
If you need a medication for pain, call your coordinator. Medications may interfere with the way your post-transplant (immunosuppressive) medications are absorbed into your body.
- DO NOT CHANGE YOUR MEDICATION TIMES WITHOUT SPEAKING TO YOUR COORDINATOR. Some medications are timed according to drug levels and must be taken at the instructed times.
- DO NOT ALLOW YOUR MEDICATIONS TO RUN OUT.
- Many pharmacies need 48 hours to fill your prescriptions because these are expensive and many pharmacies do not keep expensive drugs in stock.
- If you use Shands Pharmacy, please discuss the time it will take you to receive your medications by mail.
- We recommend you allow 2-3 weeks for your medications to arrive so you do not run out.
Reasons to call your transplant coordinator
Call your coordinator for any of the following conditions:
- Temperature: 100.0°F or above
- Systolic blood pressure (top number) greater than 160 or less than 90
- Diastolic blood pressure greater than 100 or less than 40
- Recheck your blood pressure after 15-30 minutes and call if the values remain elevated or decreased*
- Heart Rate: Above 125 beats a minute at rest
- FEV1 Values: Below the number your physician gives you
- Breathing: Shortness of breath (that is different or new)
- Energy: Decrease
- Sputum: Change in color
- Vomiting or Diarrhea: If you have vomiting or diarrhea (more than 3 watery stools per day), call your coordinator as soon as possible! This can change how your medications are absorbed, which may lead to rejection.
Your coordinator will tell you how to manage these problems.