Heart Transplant Wait List


A heart transplant is a surgical procedure in which a damaged or diseased heart is removed and replaced with a healthy, donated heart from a deceased person. It may be done to treat a variety of conditions, such as severe angina, heart failure, congenital heart defects (defects present at birth), and life-threatening abnormal heartbeats or rhythms. To be considered for a transplant, all other treatments must be exhausted and ineffective.

Because there is a shortage of donor hearts, a wait list for the procedure is used to determine who receives donor hearts as they become available.

General Information

If your heart disease is considered life threatening and nonresponsive to all treatments, a transplant team will determine your eligibility by running tests to evaluate the health of your heart and other organs, as well as your overall health. If you are found to be a good candidate, then you will be placed on a national wait list for a heart. Your status is determined by how severe your heart disease is and how likely it is that the transplant will be successful. This list is managed by the United Network for Organ Sharing (UNOS).

If you are considered not healthy enough to benefit from a heart transplant, then you will not be placed on the wait list. It is important that you talk to your doctor or team of doctors who will determine your eligibility. You may not qualify for a heart transplant include if you:

  • Are malnourished,
  • Are older than 55-60 years old,
  • Have had a severe stroke, or have dementia or cancer,
  • Have HIV,
  • Have an active infection, such as hepatitis,
  • Have insulin-dependent diabetes,
  • Have kidney, lung, nerve, or liver disease,
  • Have other diseases that affect the blood vessels of the neck and leg,
  • Have pulmonary hypertension,
  • Smoke or abuse alcohol or drugs,
  • Have other lifestyle habits that may damage a new heart, and/or
  • Have no family support and are not compliant with treatment.

If you are placed on the wait list, then you will receive a status classification. There are four statuses.

  1. Status 1A. You have the highest priority on the heart transplant wait list. If you are status 1A, then you must stay in the hospital as an in-patient, will require high doses of IV drugs, require a
    ventricular assist device (VAD) for survival, are dependent on a ventilator, or have a life expectancy of a week or less without a transplant.
  2. Status 1B. You have the second-highest priority on the heart transplant wait list. If you are status 1B, then you may not have to stay in the hospital as an in-patient. You may need a ventricular
    assistive device (VAD) or low doses of continuous IV medications.
  3. Status 2. You are stable on oral medications and can wait at home for the transplant.
  4. Status 7. You are temporarily inactive on the transplant wait list because your condition or situation has changed. This may be because you have an active infection and currently cannot have the surgery, you cannot get to the hospital within two hours for the surgery because you have left the area, or your eligibility through insurance has changed.

The amount of time spent on the wait list can be a part of determining who will receive a heart when it becomes available, particularly when children are involved. The most important determining factor is status. Not everyone on the list will receive a heart because there is a shortage of donor hearts.

Once a donor heart becomes available for you, you will receive the transplant in the hospital. While heart transplant surgery is a life-saving measure, there are potential complications. Therefore, you will be watched closely for complications following the transplant. It is necessary to be on anti-rejection drugs to prevent your body from attacking the new heart. Risks may include:

  • Complications from the surgery and anesthesia,
  • Rejection of the donor heart,
  • Medical conditions caused by anti-rejection drugs including damage to kidneys, liver, or other organs, high cholesterol levels, diabetes, and bone thinning,
  • Infection
  • Cancer, heart attack, or stroke, or
  • Cardiac Allograft Vasculopathy (CAV).

Social Security Administration POMS: DI 23022.560 Heart Transplant Wait List 1A/1B

Status 1A and 1B on the heart transplant wait list are listed under the Social Security Administration’s (SSA) Compassionate Allowance Program, which was launched in 2008 to expedite certain disability claims. Applying for disability benefits under the Compassionate Allowance Program requires the same procedure every applicant must follow when applying for SSA disability benefits; however, you will be notified if your condition is being considered as a compassionate allowance.

To establish disability under the guidelines of the SSA based on your status as 1A or 1B on the heart transplant weight list, you will need:

  1. A medical report that contains a statement that you have been placed on the transplant wait list, and
  2. Medical reports including a chest x-ray, electrocardiogram, echocardiogram, cardiac catheterization, and cardiac magnetic resonance imaging (MRI).

Once the SSA approves your claim, you will be considered disabled for one year after your heart transplant surgery. After this period, disability is evaluated on any residual impairment(s) and their effects on your functioning.

Your representative may be able to help expedite your disability claim if you are on the heart transplant wait list with a status of 1A or 1B.