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Life After Heart Transplant

It is crucial to your child’s success that you follow directions and attend all scheduled appointments. Depending on your child’s condition and your proximity to Gainesville, you will be expected to remain in Gainesville for a period of time (usually two to four weeks) after discharge from the hospital.  Your child may have to return to the hospital or other outpatient setting for physical, occupational and/or speech therapy.

Medications

Your child will be sent home on a variety of medications that will need to be given at precise times throughout the day. One of our coordinators will work out a medication schedule to ensure that your child gets what they need when they need it. Some of these medications will only be temporary, but your child will require immunosuppressants for the rest of his/her life. The number of medications your child will need may seem overwhelming, but it is absolutely vital that you administer them exactly as prescribed and to never miss a dose.

Monitoring

You will be required to take your child’s blood pressure, heart rate and temperature twice a day, every day and record the information in logs provided in the post-transplant manual. You will need to bring these logs to every follow up visit so our team can keep track of any trends and/or recognize any changes. We will educate you on how to perform these tasks and what they mean after your child’s surgery. You will also need to be aware of the signs and symptoms of rejection and infection and know to contact the team day or night if any occur in your child.

Follow-up Care

Once your child is discharged from the hospital, we will need to see him/her frequently. The timing of these visits varies greatly from patient to patient but will be very regular. Typically, for the first month following transplantation, we will need to see your child once a week. For the second month, once every two weeks and after the third month, once a month. Usually once a month visits continue for the first year; then they decrease to every two months.  Eventually we may only require visits twice a year.  Keep in mind that this schedule is not be set in stone and may be more frequent depending on your child’s progress. Weekly visits may seem overwhelming, especially if you are not local, but the first six months to a year after surgery are the most crucial and require the most rigorous care.

  • Outpatient Clinic Visits:  After discharge, the transplant team will schedule regular clinic visits to assess your child’s progress. These visits will include a physical exam, an EKG, an ECHO and blood tests. 
  • Biopsy Appointments:  Heart biopsies are used to diagnose rejection and involve placing a catheter into your child’s neck or groin in order to obtain a sample of your child’s heart muscle. This procedure is done at UF Health Shands Hospital in the catheterization lab.