Getting on the list

Before you're listed

Once you and your cardiologist decide that a heart transplant is right for you, your name will be placed on the United Network for Organ Sharing (UNOS) national transplant waiting list. In order to do this, your transplant team will need to perform a series of medical tests, which may include:

• 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 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.

Steps to take for placement on the UNOS transplant waiting list

• Choose a transplant hospital: you may be able to choose your own center (self-refer) or you can ask your physician for a referral
• Choose a transplant hospital that meets your needs (financial, location, and experience with the type of transplant you need). Review the UNOS website for information on different transplant programs across the country to help you narrow your choices
• Schedule an appointment at the transplant hospital of your choice
• Get the information you need by asking key questions
• When your doctor determines that you are a suitable 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

Many things affect waiting time, including where you live, so you may want to consider registering at a local center and another center that is not in your specific region. Your transplant coordinator will be able to help you list at multiple centers. And remember, each center has its own evaluation process. You may need additional testing before being added to the list. You will also need to be able to travel to any center you register with for all scheduled appointments.

Once you are a candidate

Once you are a waiting list candidate, it is very important that you do everything you can to stay on the list. A donated organ meant for you 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 donor organ becomes available is to keep your transplant coordinator updated. Be sure to call if:

• You've received a blood transfusion
• You've been hospitalized, have 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 testing needed will depend on your transplant center and could include keeping your medical history and physical exams updated, as well as evaluating PRA levels, routine cancer screenings, echocardiogram, exercise testing and other tests to re-evaluate your heart function.