Preparing for your heart transplant

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.

Getting on a heart transplant list

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.

  • Waiting list checklist
  • Choosing a transplant hospital: You may be able to suggest your own center (self-refer) or you can ask your physician for a referral.
  • Choose a transplant hospital that meets your needs (financial, geographical, and having experience with heart transplants): Review the UNOS website for information on different transplant programs across the country to help you narrow the choices.
  • Schedule an appointment at the transplant hospital of your preference.
  • Get the information you need by asking key questions.
  • When your doctor determines that you are an appropriate transplant candidate, your transplant team will add you to the national waiting list and notify you of your waiting list status.
  • Do not assume that your name is on the waiting list; make sure you get a letter from your transplant center confirming that your name has been listed.
  • If you do not hear back from your transplant team, call your transplant coordinator to follow up.
  • To hold your place on the list, be sure to complete all of your evaluations and attend all scheduled appointments.

Common tests for a heart transplant list

  • Physical exam with routine laboratory tests
  • Medical, family, and social histories
  • Blood typing
  • Panel reactive antibodies (PRA) may also be measured to determine the presence of antibodies in your blood, which helps your doctors understand how your body will react to a transplant.
  • Viral testing to check for active infections, such as hepatitis C (HCV), Epstein-Barr virus (EBV), or human immunodeficiency virus (HIV)
  • 24-hour urine tests and kidney function tests such as glomerular filtration rate (GFR)

Your heart function will also be evaluated using tests that may include:

  • A right heart catheterization, which is done to understand how well the right side of your heart functions, evaluate the pressures of your heart, and identify changes in blood flow through your lungs
  • An echocardiogram

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.

PRE-TRANSPLANT MEDICATIONS

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.

Staying on a heart transplant list

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.

  • The best way to make sure you're ready when a heart becomes available is to keep your transplant coordinator updated. Be sure to call if:
  • You've received a blood transfusion.
  • You've been hospitalized, had an infection, or if there have been any changes in your laboratory test results.
  • You've lost or gained weight.
  • Your health status has changed.
  • There have been changes to your medications.
  • Your telephone number or address has changed.
  • You're planning to go out of town.
  • There's been a change in your medical insurance.

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.

Heart transplant must-haves

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.

  • What to pack for your heart transplant surgery
  • Comfortable clothing
  • A bathrobe and slippers
  • A list of any allergies you may have
  • A list of all of the medications you're taking
  • Insurance card
  • Family photos, books, and music

Note: Keep valuables (like jewelry) at home and only bring a small amount of cash; sadly, theft can and does occur.

Heart transplant to-do list

Get financially ready

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.

Get educated

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.

Get support (for you and your family)

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.

Learn to relax

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.