Life after transplant

Transplant coordinators have the privilege of guiding patients and their families through a truly transformative process. In the Ward Family Heart Center, my fellow coordinators and I follow potential heart transplant patients long before they start transplant evaluations. And we stick with them post-transplant until they transition to an adult care team. We get to know our patients really well.  

The transplant is dramatic, from the excitement of hearing about a potential match to the surgery itself. It’s a huge turning point in a patient’s life! But the most interesting part of their journey happens once they recover, go home and get to start a new life with a new organ. Here’s what post-transplant life is like for a heart transplant patient.    

So many meds 

In the beginning, our patients have 2 visits a week: a telehealth with their nurse coordinator and an in-clinic appointment for labs, tests and a doctor’s visit. 

The patient’s post-transplant care team includes physicians, nurse practitioners, nurse coordinators, pharmacists, social workers, psychologists and child life specialists. If any issues pop up, they will see any specialists needed beyond that core team. As time goes on, their visits drop off to weekly, then monthly. After a year, they will only come in once a quarter. 

Right after surgery, heart transplant patients take between 12 and 16 medications. That's a big adjustment! Anti-rejection medications are time-specific, so our families need to stay on a strict medication schedule. We work with our patients to personalize their regimens and find meds that work best for them. 

Most medications our patients take suppress their immune systems to make sure their bodies don’t attack the new organ. That puts them at higher risk for developing viruses or infections. It’s rare for one of our post-transplant kiddos to be hospitalized if they catch something; most of the time it just takes them a little longer to fight it off.  

The risk of rejection 

The word “rejection” sounds scary, but it’s actually very common and treatable. Most of the time, rejection episodes are mild and can be treated outside the hospital with steroids. Rejection is most prevalent in the first year after transplant: For every 10 patients, there will be around 7 rejection episodes (some patients will have none while others might have several). 

For heart transplant patients, rejection can feel like heart failure: increased fatigue, abdominal pain, nausea, swelling and difficulty breathing. Fortunately, our patients are followed closely with labs and clinic visits, so rejection is often caught before patients have symptoms.  

Emotional adjustment  

Post-transplant adjustments aren’t all physical: Many of our patients also need time to heal from medical trauma. We have a team of psychosocial experts to make sure our patients’ holistic needs are cared for as well.  

If they receive an organ from a deceased donor, many older kids and teenagers will go through a period of being sad for the donor. We usually counsel patients to wait a year before reaching out to their donor’s family; recipients and donor families can communicate through the Midwest Transplant Network. Choosing whether or not to communicate with donors is a very personal decision for each of our recipients and their families. We recommend our patients and families do what they need for their own healing and peace. 

Getting back into a routine 

It’s important for our patient’s mental health to get back into their school and/or activities routine. After the first 3 months (when their immune systems are stronger and they have fewer appointments), most of our school-age patients are ready to get back to it.  

Once patients have recovered from surgery, there aren’t many limits on what they can do — especially compared to the restrictions they had when they were in organ failure. We’ve had transplant patients go on to play football and baseball and participate in gymnastics. Sometimes families will be nervous when their child wants to try something after a transplant, but we tell them: You chose transplant so they could live their life!  

The restrictions transplant patients do have are all about avoiding infectious diseases: No swimming in ponds or lakes or going into caves. Avoid petting zoos and exposure to birds and reptiles. And if families have a cat, the patient gets a free pass on cleaning out the litter box! For teenagers, we talk about avoiding alcohol and drugs that interact with their medications and safe sex practices to avoid infections and unplanned pregnancies.   

Transitioning to adult care 

We start preparing our patients around age 15 with the goal of transitioning them to an adult care team around age 19. We like to give them a whole year after high school graduation to get through all the changes that milestone brings! 

Pediatric care teams offer more reminders and handholding than “grown-up” teams do. So, we encourage patients to start taking more responsibility for their health in their mid-teens. Do they know what medications they take and how to fill their own pill box? Do they know how to make an appointment and refill their prescriptions? We also work on the insurance piece of the puzzle.  

We talk to our older patients about the importance of taking all medications as instructed: These are the things you need to do to take the best care of the organ you have now. If you ever need another transplant in the future, you need to show you can care for it well.  

Sometimes it’s hard for patients who were transplanted at a very young age to understand why it’s so important to take care of themselves. Patients who had transplants as teenagers tend to remember what organ failure feels like; they don’t want to go through that again.  

A new normal 

The biggest post-transplant change is how much better our patients feel. As you can imagine, if your heart or another organ is failing, you don’t feel great! With a new working organ, our patients have a lot more energy and feel healthier overall. It is an honor to watch our transplant patients recover, adjust, grow — and become the kids they were meant to be!