Getting listed for a kidney transplant
The process of getting listed for a kidney transplant often begins when your doctor refers you for the transplant surgery. But, you do not have to be referred by a doctor. You are free to visit a transplant center to be evaluated if you are interested in transplant.
You can only be ready for a kidney transplant after you have passed the required evaluation at a transplant center that looks at your physical health, mental health, and finances. If you pass this evaluation and the transplant team decides you are ready for transplant, you will be added to the national waiting list.
The national organ waiting list is managed by an organization called the United Network for Organ Sharing (UNOS), a private, nonprofit agency that works with the federal government. UNOS keeps track of all the people in the United States who need kidney transplants, and matches them with donors.
The national waiting list is not an ordered list that gives priority to the person who has been listed the longest. The UNOS waiting list uses complex ways to calculate where and when the best kidney match becomes ready for you.
The United States is divided into 11 regions and 58 local Organ Procurement Organizations (OPO)s, which are areas used to find matches for transplant. For example, if a kidney becomes available, UNOS will first try to find a match in the OPO where the kidney is being donated. If no match is found there, UNOS will search within the larger region. If no match is found within the OPO or region, the kidney will then be available to someone who lives outside the region.
When deciding who gets an available kidney, UNOS considers things about the donor and the person who is getting a kidney (the recipient):
- The age of the recipient
- Blood type of the donor and recipient
- The size of the donor kidney compared to the body of the recipient
- How urgent it is for the recipient to get a kidney
- How long the recipient has been waiting for a kidney
- The distance of the recipient from the donor kidney
To increase your chances of getting a kidney transplant as soon as possible, you can get listed at multiple transplant centers, in hospitals that are in different OPO areas. Getting listed in multiple hospitals in the same OPO area will not increase your chance of getting a transplant sooner, because organ donations are considered by region.
If you are able to get listed in multiple areas, you must be able to reach any transplant center where you are listed in a short amount of time. The specific amount of time depends on the transplant center, and you should talk to the transplant team about this before you get listed.
Usually you will need to reach the hospital within 24 hours after you are contacted about an available kidney. You must also be available for appointments with the transplant team leading up to the transplant surgery and after the surgery.
This may require taking long drives, or even booking flights, in a moment’s notice. For this reason, getting listed at multiple hospitals can be a financial barrier for many people.
Choosing a transplant center
You will need to choose the transplant center (or centers) where you want to be listed. In the United States there are more than 250 transplant centers. For a full list click here. You may want to consider the following when choosing a transplant center:
- Distance of the transplant center to your home: When you are on the national waiting list, you may get a call any time that a kidney match is available for you, and will need to reach the hospital in a short amount of time. The specific amount of time depends on the hospital, and you should talk to the transplant team about this before getting listed. Usually you will need to reach the hospital within 24 hours after you are contacted about an available kidney.
- Your insurance coverage: Some hospitals accept only certain insurances for transplant surgeries. Discuss your health insurance with the transplant coordinator before choosing a hospital.
- The experience of the transplant team: You may want to know whether the transplant center is new or whether it is well established. This is a personal preference that may matter to some, and not as much to others. For more information about the performance information of a certain transplant center, visit this website.
Waiting for a kidney transplant
While you are waiting for a kidney transplant:
- Do not miss appointments with your transplant team, primary doctor, and other doctors.
- If you are on dialysis, do not miss your dialysis sessions.
- Let your transplant team know if you experience any changes in your health, even if you feel like you just caught a cold.
- Take all medicines prescribed to you by your transplant team. Let the transplant team know if you are taking medicine from another doctor.
- Carefully follow the eating and exercise plan given to you by the transplant team. You may be asked to see the dietitian or physical therapist.
- Manage your health care by keeping all of your medical papers in a folder or binder so they are all available in one place.
- If you are a woman, talk to your transplant team about birth control, and what you should know about having children before and after your transplant.
- Immediately let your transplant team know if any part of your contact information changes, especially your address or phone number.
Average wait time
The average wait time for a kidney from the national deceased donor waiting list in the US is 5 years, but this can change a lot depending on your personal situation, and/or the availability of a living donor.