To get on a waiting list and to prepare for surgery, you'll need to put a plan into action. Click below for some strategies for success in preparing for a heart transplant.
Once you and your cardiologist decide that a transplant is necessary, it's important to work with your doctor to start the process of being added to the United Network for Organ Sharing (UNOS) national transplant waiting list.
Your heart function will also be evaluated using tests that may include:
Depending on the severity of your disease, you may be fitted with an implantable ventricular assist device (VAD). A VAD is a mechanical pump that helps a weakened heart pump blood throughout the body. It is used as a "bridge to transplant" and it can help many people remain in their own home instead of the hospital while waiting for a donor heart to become available.
Before your heart transplant, you may be taking many different medications. Be sure to continue to take these medications as prescribed unless your doctor tells you otherwise.
Once you are a waiting list transplant candidate, it is very important that you do everything you can to stay on the list. A heart transplant donation could end up going to the next candidate on the list if you don't keep up-to-date with needed tests, or if your contact information is out of date.
Transplant candidates usually need to have follow-up tests. The type of tests needed will depend on your transplant center and could include keeping your medical history and physical exams updated, as well as evaluating panel reactive antibody (PRA) levels, routine cancer screenings, echocardiogram, exercise testing, and other tests to re-evaluate your heart function.
Give your transplant team a list of telephone numbers where you can be reached 24 hours a day. Include phone numbers of friends and family you might visit. Your transplant team will need to contact you as soon as the donor organ is available and must locate you within specified time told to you by your transplant center. If they can't locate you within that time, the specified time told to you by your transplant center, the donor organ will likely go to the next person on the list.
Check your answering machine or voice mail often. If you are at a place where you cannot be reached by phone, it may be a good idea to check more often. You may want to carry a cell phone once you get to the top of the transplant list and be sure to keep the battery charged.
Make a list of things you will want to take to the hospital. When the day arrives, you may not have time to pack, so pack a bag ahead of time.
Make plans for how you will get to the hospital. Arrange for someone to drive you. Talk to your transplant coordinator if you will need to take an airplane.
Plan for time away from home: Have someone get your mail and newspapers, pay bills (or set up automatic bill pay through your bank), water plants, care for pets, etc.
Pick a contact person who can pass along information to friends and family so that you can get much-needed rest while in recovery.
Note: Keep valuables (like jewelry) at home and only bring a small amount of cash; sadly, theft can and does occur.
Your transplant center has people available who are specially trained to help you in financial mattersso you can learn more about the financial side of transplantation.
Just knowing what to expect can help you feel better prepared. Don't be afraid to ask your transplant team a lot of questions, and talk to others who have had a heart transplant about their experience — they can give you some ideas about what may be ahead. Read everything you can about the surgery and the medicines your doctor has advised for you.
Awaiting heart transplant can be a stressful and emotional process. Many people awaiting transplants feel nervous, fearful, or depressed. Many transplant centers have a psychologist or a social worker available to help you with any issues you may need to discuss. They may also be able to help your family understand what to expect and how they can help support you. You may even recommend they check out our Care partners' connection resources.
Waiting for a heart transplant can be stressful. If you are having trouble sleeping or feel anxious about the transplant, ask your psychologist or social worker to show you exercises that may help you relax. There are also many books and audiotapes on relaxation that can help you deal with stress.
It may be helpful for you to find a creative outlet. Enjoying a hobby such as drawing, painting, or knitting can help take your mind off waiting. Reading books and listening to music are also recommended relaxation techniques. If you are up to it, this may be a good time to take a class.