Getting on the Heart Transplant Waiting List: What You Need to Know
For someone living with advanced heart failure, hearing the words “heart transplant” can bring a mixture of hope, fear, and a lot of questions. One of the biggest questions is: How do I get on the heart transplant waiting list?
Getting listed for a heart transplant is not as simple as putting your name on a list. There is a detailed evaluation process designed to determine whether a transplant is the right treatment for you and whether you are healthy enough to undergo the surgery.
Step 1: Getting Referred to a Transplant Center
The process usually begins when your cardiologist refers you to a heart transplant center. Your medical team may recommend an evaluation when your heart failure has become severe and other treatments are no longer controlling your symptoms adequately.
You do not necessarily have to wait until you are extremely sick to begin the evaluation. In fact, an early referral can give the transplant team more time to evaluate you and discuss your options.
Step 2: The Transplant Evaluation
Once you are referred, you will go through an extensive evaluation. The purpose is to learn as much as possible about your overall health and determine whether a heart transplant could benefit you.
The evaluation may include:
– Blood tests
– Heart tests such as an echocardiogram and cardiac catheterization
– Chest X-rays and other imaging
– Kidney and liver function testing
– Lung testing
– Infectious disease testing
– Cancer screening
– Dental evaluation
– Nutritional evaluation
– Psychological and social evaluation
– Discussions about medications and your medical history
The transplant team may also talk with you about your support system at home, transportation, finances, ability to take medications, and your plans for recovery after transplant.
Step 3: The Transplant Team Makes a Decision
After completing the evaluation, a multidisciplinary transplant team reviews your case. They consider your heart condition, other medical problems, age, overall health, ability to undergo surgery, and many other factors.
There are several possible outcomes.
You may be:
Accepted for the transplant waiting list: The team believes transplantation is an appropriate treatment.
Asked to complete additional testing: Sometimes the team needs more information before making a decision.
Deferred or not accepted: In some cases, other medical conditions or circumstances may make transplantation too risky.
Being told that you are not currently a candidate does not always mean the conversation is over. Your medical situation can change, and your transplant team can explain whether there are things that can be addressed.
What Does Being “Listed” Mean?
If you are approved for transplantation, you are placed into the national heart transplant system. In the United States, heart transplant candidates are managed through the Organ Procurement and Transplantation Network (OPTN) and the national transplant system.
Being listed does not mean that you simply wait your turn in a single line.
When a donor heart becomes available, transplant teams consider a number of factors to determine which candidate is the best match for that particular organ. These can include medical urgency, blood type, body size, geographic considerations, and other factors.
Your medical status can also change while you are waiting, which can affect how your case is managed.
What Happens While You’re Waiting?
Waiting for a heart transplant can be one of the most difficult parts of the process.
Your transplant team will continue monitoring you. You may have frequent appointments, blood tests, heart tests, and medication changes.
Some patients are able to remain at home while waiting. Others become sick enough to require hospitalization.
Some patients may also need mechanical circulatory support, such as an LVAD (left ventricular assist device), to help their heart pump blood while they wait for a transplant.
The important thing is to stay in close contact with your transplant team and report significant changes in your health.
Keep Your Transplant Team Updated
While you are waiting, it is important to tell your transplant team about changes in your health, medications, address, phone number, insurance, or ability to travel to the transplant center.
You should also follow the instructions you receive about medications, diet, exercise, vaccinations, and medical appointments.
And perhaps most importantly, keep your phone nearby.
When a donor heart becomes available, the transplant center may need to contact you quickly.
The Waiting List Can Be an Emotional Journey
Getting listed for a heart transplant can be both exciting and frightening. You may feel hopeful one day and discouraged the next.
It can help to have family members or friends involved in the process. Your transplant center may also have social workers, counselors, support groups, and other resources available to help you and your family cope with the emotional side of transplantation.
Remember that you are not simply waiting for a phone call. Your transplant team is actively monitoring your condition and working to keep you as healthy as possible while you wait.
Ask Questions
If your doctor has mentioned a heart transplant, don’t be afraid to ask questions.
You might want to ask:
– Am I a candidate for a heart transplant evaluation?
– Should I be referred to a transplant center now?
– What tests will I need?
– What could prevent me from being listed?
– How does the heart transplant waiting list work?
– What status would I have if I am listed? Click HERE for a explanation of the different levels
– What should I do to stay as healthy as possible while waiting?
– Could an LVAD or another treatment be an option for me?
There is a lot to learn, but you don’t have to learn everything at once.
Final Thoughts
Getting onto the heart transplant waiting list is a major step in the transplant journey. The process can involve many tests, appointments, decisions, and emotions, but understanding what comes next can make the experience less overwhelming.
If you or someone you love is dealing with advanced heart failure, talk with your cardiologist about whether a heart transplant evaluation is appropriate.
This article is for educational purposes and is not a substitute for advice from your cardiologist or transplant team. Every patient’s situation is different.