Is There a Living Kidney Donor Waiting List for Kidney Transplants?
More than 90,000 people in the United States are on the waitlist for a kidney transplant from an organ donor. While you may have heard of the organ donor waiting list, what you may not realize is that the organ donor waitlist is only for organs from deceased donors.
This raises the question: Is there a waiting list for organs from living donors? The short answer is: No, there is no centralized waiting list for living donor transplants. Here’s how the living donor transplant process works for kidney patients.
The Deceased Kidney Donor Waitlist
Usually, someone who has been diagnosed with kidney failure will be referred by their doctor to a transplant center. After a series of medical tests, if the patient is deemed eligible for a transplant, the transplant center will add their name to the national deceased donor waitlist, which is administered by the Organ Procurement and Transplantation Network (OPTN), until a suitable match becomes available.
Most transplants use organs from deceased donors. For example, in 2022, there were 36,241 transplants using organs from deceased donors and just 6,359 transplants using organs from living donors. However, the wait time for an organ from a deceased donor can be very long, with many patients waiting years for a match.
It is important to note that a kidney patient must be on the OPTN deceased donor list to receive a kidney transplant from a living kidney donor. In other words, kidney patients who have a living donor must still be on the deceased donor waiting list even if they do not plan to use an organ from a deceased donor.
Deceased Donor Organs vs Living Donor Organs
Organs from deceased donors have saved millions of lives. In many cases, as with people who need a new heart, receiving an organ from a deceased donor is the only option.
However, if you need a transplant for an organ that can be donated by a living donor, such as a kidney or liver, receiving an organ from a living donor is a superior option.
Living donor kidneys tend to last longer, sometimes two to three times as long, and are rejected less frequently than deceased donor kidneys. Living donor kidney transplant recipients also typically have better transplant outcomes and lower mortality rates than deceased donor kidney transplant recipients. In addition, kidney patients with a living donor can receive a transplant much faster. Learn more about living donor kidneys vs deceased donor kidneys.
How to Get a Living Kidney Donor Transplant
If you want a transplant with an organ from a living donor, there is no central list to which you can add your name. Instead, it is up to you to find a living donor. The best way to do this is to find someone willing to donate either directly to you or on your behalf, then join a registry to manage the process and find you the best possible match.
The biggest living donor registry in the United States is the National Kidney Registry (NKR). If you are in need of a transplant, you can register with the NKR as a patient seeking a transplant. You can register if you have someone willing to donate for you or even if you don’t.
Choosing a Kidney Transplant Center
Once you register with the NKR, you will be asked to choose a participating transplant center. You should choose a nearby transplant center so you won’t have to travel long distances for testing and surgery.
In addition, you might want to look at the transplant records of the centers you are considering. You can do this by visiting https://www.kidneytransplantcenters.org, selecting the Recipients tab, and clicking “sort” under the “NKR Living Donor Transplants Prior Year” heading. This will show you a list of all transplant centers in the U.S. ranked by how many living donor transplants they have completed.
Why would you want to choose a center that does a lot of living donor transplants? There are two main reasons. First, the more living transplants a center has performed, the more experience they have, which is a benefit with any type of surgery or medical procedure.
Second, the more living donor transplants a center performs, the likelier they are to have an “extra” donor at the end of a donation chain, which would enable them to match a recipient without a donor. A kidney donation chain starts with an altruistic donor who donates their kidney to a stranger. The chain continues as long as matches can be found. Sometimes, the final donor in this chain has no matched recipient. If the end of this chain occurs at a center that has a matching transplant recipient, that recipient has a chance of receiving the donor kidney at the end of the chain.
If you have a donor willing to donate on your behalf, any NKR center is an excellent option. As of the end of 2023, there are 102 NKR Member Centers. However, if you do not have a donor willing to donate on your behalf, it is important to select an NKR Member Center that participates in the Microsite Program, which is a comprehensive program to help kidney patients find a living kidney donor, including a free personalized website and free coaching. Visit https://www.findakidney.org to learn more about the Microsite Program or to see a map of microsite participant centers.
Once you have selected a center, someone from the center should reach out to you with next steps. If you have not heard from the center within a few days, you can contact the NKR and someone from the NKR will contact the center.
Why Choose an NKR Transplant Center?
It’s important to know that registering as a kidney patient with an NKR transplant center does not put you on a list to receive a living donor kidney. You will still need to find someone willing to donate a kidney on your behalf.
Once you find a donor, they will be tested to see if they are a match. If they are, they might be able to donate to you directly. However, in many cases, it is possible to get a better match. This is where the NKR can help.
When you register with an NKR center, it is important to tell your transplant coordinator that you want to participate in the Voucher Program. The Voucher Program lets a donor donate on your behalf, after which you receive a voucher.
Once you are ready for your transplant, you redeem the voucher to be prioritized for a living donor kidney through the NKR. That means the NKR immediately searches its large pool of donors to find the best possible match for you. This is important because the larger the pool of donors, the better your chance of receiving an excellent match.