How does the heart transplant waiting list work? How is it prioritized? Can I be on heart transplant waiting lists in more than one region?

Once you agree to the transplant process, you are placed on the heart transplant waiting list. Once listed, the wait can last from several days to several years. The waiting list is maintained by UNOS and is organized by several established factors that play a role in the timing of your eventual heart transplant. Blood type, medical acuity/urgency, body size, and number of days waiting on the transplant list are the factors considered.

Your blood type (ABO blood typing) plays a role in determining which available donors are eligible to donate to you (a “donor match”). In general, candidates on the list receive an identically matched blood group heart.

In addition to matching blood type, further blood testing is performed to determine if you have developed any antibodies to specific human antigens. Antibodies are produced by your immune system and develop in persons who have been exposed to human proteins that are not of their own genetic makeup. This can occur with blood transfusions or during a pregnancy. Your doctors perform what is called a panel reactive antibody (PRA) test when you are listed. If you have a high PRA, you will have to wait longer for a more compatible heart. A high PRA means that you are highly reactive to specific antigens (“sensitized”) and that your doctors need to be more selective with the donor heart chosen for you to avoid acute rejection.

Finally, when a donor organ does become available, ABO blood typing is performed, and then the organ is offered to the patient in the region who has the most urgent medical need for the organ, based on his or her current health status (UNOS medical urgency status). There are three medical urgency status categories for patients waiting for a heart transplant.

Status 1A is the top of the UNOS waiting list. These patients are determined to be critically ill because they require mechanical or chemical support in the form of a breathing machine (ventilator), intraaortic balloon pump (catheter inserted in leg to help the heart pump), continuous intravenous infusions of powerful cardiac medications with a special catheter in their neck (called a Swan-Ganz catheter), and/or a newly implanted ventricular assist device (VAD). These patients are usually very sick in the intensive care unit and will die without a heart transplant.

The second UNOS group is referred to as status 1B. These patients may be in or out of the hospital and have continuous intravenous medications and/or a VAD longer than 30 days postoperatively from activation on the waiting list. Individuals with these types of support measures maintain status 1B even if discharged home with this type of treatment.

The last UNOS category is status 2. Most patients in this category are out of the hospital and stable. Their medical condition is carefully monitored and updated.

There are 11 geographic UNOS regions in the country. Organs are procured and distributed within each region. Organs are offered to sick patients within the same region in which they are donated before they are offered to other parts of the country. It is not common for a heart to be donated to a recipient outside of its own local region. Because of this regional allocation, each region has its own supply and demand for heart transplants. Thus regions with a larger supply of donor hearts and smaller demand of waiting patients have a shorter wait list time for a new heart.

The UNOS statutes do allow you to be on the heart transplant waiting list in more than one region (“multiple listing”). A candidate will not benefit from being listed by two transplant programs within the same local UNOS region, because all programs within a single region work from the same master list.

It is important to know that some transplant programs may have policies that prohibit multiple-listed patients. Others may set their own requirements or preconditions for multiple-listed candidates (for example, ability to come to the hospital within a certain amount of time if you are called for an organ offer).

If a patient chooses to be listed by more than one program in different UNOS regions, there are five other issues to consider in addition to the individual transplant program’s policies as above.

1. Your insurance may not cover the cost of an additional evaluation or pay for a transplant outside of your local region.

2. The additional expenses of travel and lodging outside of your region often are not reimbursed.

3. No matter how sick you are or become, you must get to the outside region transplant center quickly, because organs become available on very short notice.

4. Most transplant programs require their recipients to stay in close proximity to their center for at least 1 month after the transplant to monitor recovery, assess for rejection, perform biopsies, and adjust transplant medications.

5. If you were to experience any major posttransplant complication, you must be able to return to your transplant center for specialized posttransplant care.

Remember, it is not possible to predict how well or sick you may be while waiting for your new heart transplant. Even though the waiting time may indeed be shorter at a program outside of your local region, it still may not be the best overall strategy to be listed and transplanted at a center farther from home.