Transplant from a donor who has died

The kidney transplant waitlist

What is the kidney transplant waitlist?

The kidney transplant waitlist is a list of people waiting for a kidney from someone who has died. You have to be on the waitlist or approved by a transplant center if you want a transplant, even if you find a living donor. UNOS (United Network for Organ Sharing) finds matches between people on the waitlist and donated kidneys. Currently there are around 93,000 people on the kidney transplant waitlist.

How long will I have to wait?

Most people in the United States wait about 4 years to get a kidney from the waitlist. Some people wait longer. The average wait time will vary depending on which transplant center you register with – it could be anywhere from 4 months to more than 6 years. Some people never get a matching kidney from the list. 1 out of 20 (5%) kidney patients die each year while they wait for a kidney. Your place on the waitlist and how long you will have to wait for a kidney depends on a lot of different factors, such as:

• How long you have been on dialysis
• Your blood type – people with a blood type that is more common or works better with other blood types usually wait less time for a kidney
• Your age
• Having certain antigens and antibodies in your blood
  • Antigens, such as diseases or poisons, come from outside your body. Antibodies are proteins in your body that attack antigens to protect you from disease.
• If you have had an organ transplant before
• If you have diabetes
• How far you live from a possible donor

The waitlist is made to be fair. It isn’t based on:

• How much money you have
• Race
• Sexual orientation
• Religion
• Gender

Your time on the waitlist may be shorter if you and your doctor agree that a high-risk kidney could be a good choice for you. A high-risk kidney means that it is donated from a person over the age of 60 or from a person whose kidney doesn’t work as well. Ask your transplant team for more information about this option or learn more in the transplant process section.

How do I get on the kidney transplant waitlist?

Before you get on the kidney transplant waitlist, you need to get a referral. In some places, you can refer yourself. In other places, you need a doctor to refer you. Ask your doctor or the transplant center about who can refer you. You will go through a group of medical and psychological tests called an evaluation. An evaluation lets the doctors see if you are healthy enough to have a transplant. During the evaluation, you’ll also talk with a social worker or financial counselor about the costs of transplant and if you can cover them. Transplant centers will only use their transplant team’s test results – not results from your personal doctor. You’re not on the waitlist until you get a letter from your transplant center that says you’re on it. If you don’t get this letter, contact your center to find out what you still need to do. While you’re on the waitlist, you will go to your transplant center once a year for tests. These are the same tests you got for the waitlist, such as blood tests, urine samples, chest x-rays, blood pressure readings, and cancer screenings. You may need other tests depending on your health and age. These tests are not optional – you have to do these to stay on the waitlist. If you don’t keep up with your testing, transplant centers can take you off the waitlist or mark you as temporarily inactive. While you’re inactive, you can’t get a transplant. The center doesn’t have to let you know if you’re inactive, but they do have to let you know when they first add you to the waitlist and if they take you off the waitlist. You can call your transplant coordinator to check on your waitlist status at any time. You will need to let your transplant center know right away if you have changes in:

• Your health
• Your insurance
• Your contact information

If you change your contact information and the transplant center can’t contact you, they can mark you as inactive or remove you from the waitlist. Waiting for a transplant can be exhausting and stressful. Consider joining a support group while you wait. You can find a support group through your hospital, transplant center, or online. You can also find out if there is a support group near you.