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(352) 733-0111

What to expect with surgery

(352) 265-0665

Becoming a candidate

Listing with UNOS

Once the decision has been made to move forward with transplantation, your child will need to be put on the waiting list for a donor heart. United Network for Organ Sharing (UNOS) is the national agency that oversees all organ transplants and maintains the computerized list of people waiting for donor hearts.

Your child will be listed based on his/her condition as Status 1A, Status 1B or Status 2 on the list.

  • Status 1A patients are the most critical and are at the top of the list to receive a donor heart. They require PICU hospitalization with breathing support and/or high-dose intravenous medications to help their heart work better. Children younger than six months with certain heart conditions may also be considered Status 1A.
  • Status 1B patients are next on the list and may or may not require hospitalization. They often need lower doses of intravenous medication to help their heart function while they wait. Children under 6 months or those with significant growth failure who do not meet the requirements for Status 1A will be listed as 1B.
  • Status 2 patients meet the requirements for transplantation but do not require intravenous medications or other hospital services. They are typically not hospitalized and only receive offers if there are no patients listed as 1A or 1B in their region.

Waiting for a heart

The waiting time for a heart can vary from a few days to a few years and depends on multiple factors, including your child’s UNOS status, blood type and size. If your child is at home during this wait period he/she will be seen in our clinic on a regular basis in order for us to stay up-to-date on his/her status. Between visits it is important to contact the team of any changes in your child’s condition and to follow all instructions concerning his/her care. The call can come at any time, day or night, so we must have reliable contact information where you can always be reached.

If your child requires intravenous medications or other intensive care support he/she will have to wait in the Pediatric ICU until an appropriate donor heart is found. The period of time in the hospital can be extremely difficult for your child. We will assist with diversionary activities such as play therapy, art therapy and age appropriate volunteers who can spend time with your child with quiet activities. If you do not live locally, our clinical social worker will assist you and your family with arrangements for the possible prolonged stay in Gainesville.

Preparing for a heart transplant

Heart transplant is not simply a surgical procedure – it is a lifetime commitment to maintaining a healthy lifestyle, follow-up care and adherence to a strict medical regimen that will be necessary to protect your child’s heart.

Initial clinic visit

After your local cardiologist refers you to our program, in most cases, we will meet with your child for an initial clinic consultation visit. This will allow us to learn more about your child’s condition and to introduce you to the transplant process. Brief testing may be done and a date will be set to complete a full evaluation of your child and your family.

Transplant evaluation

In order for your child to be considered for transplant, he/she must be evaluated here at UF Health Shands Hospital. Your family will meet with multiple specialists who will ask you for information about you and your child and will also give you all the information you need regarding heart transplantation. The evaluation will also include a series of tests to see how severe your child’s condition is and to determine if transplantation is the best treatment or if there are other options. We will also check for other medical issues that may prevent him/her from getting the best results from a transplant. Once all of these tests are completed the transplant team will analyze the results to determine if your child meets the criteria for a new heart.

Transplant evaluation review

After the evaluation is complete a multi-disciplinary committee will meet to review all of the results to determine whether or not your child is a candidate for heart transplant. The team will discuss any medical issues that may make the procedure too risky for your child as well as any psychosocial barriers to success.

The surgery

Heart transplantation is an open-heart surgery that requires several hours. Your child will be monitored by the anesthesiologist during the procedure to make sure he/she feels no pain. After surgery your child will be taken to the Pediatric ICU on the 10th floor where you will be able to visit. In the PICU, your child will be monitored very closely 24 hours a day. We try to limit the number of visitors during his/her stay to immediate family members because the risk of infection is high after surgery. Remember, your child has just undergone a complex surgery and was under anesthesia for a long time so he/she will be very groggy and may not be aware of what is going on.

Your child will be connected to multiple machines by several tubes and monitors. As your child progresses after surgery, the number of tubes and monitors will slowly be removed. Once your child is less restricted he/she will gradually sit up and move around. We will encourage physical therapy to assist your child to increase his/her mobility, strength, and endurance. Your child may receive tube feedings if he/she is not able to take formula or food in a few days.

After the surgery

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.