The Kidney Transplant Waitlist – What You Need to Know
Table of Contents
- Kidney transplant & COVID-19
- Is transplant the best option for patients with kidney disease?
- What is the transplant waitlist?
- When should I start thinking about a kidney transplant?
- How do I get on the transplant waitlist?
- How does the waitlist work?
- How is the right organ found for me?
- What is the average wait time for a kidney transplant?
- Why do some patients wait longer than others for a transplant?
- How do I know my status on the transplant waitlist?
- What would prevent or disqualify me from receiving a transplant? Does my age matter?
- Who pays for the cost of a transplant?
- Can I be listed at multiple transplant centers?
Kidney transplant & COVID-19
Is transplant the best option for patients with kidney disease?
For the majority of patients, transplantation is the best option. Kidney transplant is not a cure for kidney disease, but it can help you live longer and with a better quality of life. Kidney transplants come from either living organ donors or deceased organ donors. A live donor kidney transplant is considered the best option for people with kidney disease.
Transplant is not always an option for everyone. Speak with your healthcare team to decide if transplant is an option for you, or you can call a transplant center directly to set up an evaluation appointment if your doctor has told you to prepare for dialysis or a transplant.
What is the transplant waitlist?
The United Network for Organ Sharing (UNOS) manages the list of all the people across the US waiting for an organ transplant. UNOS ensures that deceased donor organs are distributed fairly. For kidneys, matches are made based on a combination of blood-type and antibody matching, time with kidney failure, and a few other factors that give people priority on the list (including being a child or being a past live kidney donor).
Looking for more info about kidney transplants?
Join our kidney transplant community for useful tips on finding a living donor, helpful online communities, and much more.
When should I start thinking about a kidney transplant?
It is best to explore transplant before you need to start dialysis. This way, you might be able to get a transplant ‘pre-emptively,’ before you need dialysis.
It takes time to find the right transplant center for you, to complete the transplant evaluation, to get on the transplant waitlist for a deceased donor, or to find a living kidney donor if you can. If you are not yet on dialysis and have a GFR of 20 or less, you should contact a transplant center to get evaluated so you can begin building “wait time” on the deceased donor transplant list.
How do I get on the transplant waitlist?
Ask your healthcare professional for a referral to a local transplant center or contact a transplant center in your area. Learn as much as possible about the different transplant centers. You can also contact a transplant center, or more than one center, yourself, without a referral. This is called a “self-referral”.
Choose a transplant center that best fit your needs. Things you should consider when choosing one include:
- Insurance coverage and cost (ask your health plan and the transplant center for more information)
- Location, to make it as easy as you can to go to appointments and the surgery
- If you have a living donor, be sure the transplant center performs living donations. Ask the transplant center if they participate in “kidney paired exchange” or “paired donation” programs so you can still receive a kidney if your live donor isn’t a good match. Learn more about paired donation here.
- Find out if the center offers support group. If not, you can speak to someone who has a received or donated a kidney through our NKF PEERS program.
Schedule an appointment for evaluation. An evaluation will help determine if you are a candidate for a kidney transplant. Each center has their own criteria for accepting patients for transplant, so you may want to be evaluated at more than one center.
After completing an evaluation with the transplant team, a decision will be made if you are a transplant candidate based on your health, how well you manage your condition, and other considerations. If you are a candidate, the transplant team will add you to the national waiting list and will evaluate any potential living donors. If you have questions about your status on the waiting list, ask the team at your transplant hospital.
How does the waitlist work?
UNOS maintains a centralized computer network which links all organ procurement organizations (OPOs) and transplant centers (hospitals that perform transplants) and uses a complex matching system to determine which organ should be offered to which recipient. Many factors contribute to whether or not a specific organ will be offered to you, including, but not limited to: blood type, how long you have had kidney failure, medical urgency (how sick you are), where you live (an organ must be safely transported the distance to the transplant hospital), and in some instances your weight and size compared to that of the donor. For example, if the deceased donor’s kidney is large, it may not be a good fit for a small child.
In the US, the matching system (or allocation system) is updated periodically to be more flexible and equitable. Changes to the US organ allocation system in 2014 added closer matching based on the age of the donor and recipient. This means a kidney coming from a 30-year old donor will more likely go to someone in that age range. This is called longevity matching.
Another big change that was made in 2014 has to do with patients who joined the waitlist after being on dialysis. Instead of wait time starting when you are added to the waitlist, you can now build wait-time from the time that you started dialysis or from when your GFR dropped to below 20, even if it happened before you were listed.
Another change is the way that organs are matched geographically: instead of matching a donor and recipient within a region with set boundaries, the Kidney Allocation System as of 2019 uses distance between the donor and recipient.
Finally, extra priority is also given to patients who are extraordinarily hard to match because of having high levels of antibodies from prior transplants, blood transfusions or pregnancies, which makes them “highly sensitized”. In 2019, the Kidney Allocation System was adjusted to make it easier to find kidneys for hard-to-match candidates who are highly sensitized.
How is the right organ found for me?
Organ procurement organizations (OPOs) are responsible for recovering organs from deceased donors and getting these organs to transplant centers. They help people express their wishes about organ donation while they are alive, speak with grieving families about organ donation, and coordinate the deceased organ donation and distribution process. The OPOs can help direct a thank you note to the deceased organ donor’s family. They are also involved in data follow-up regarding deceased organ donors, and they raise awareness about organ donation.
Information about each organ that is recovered by an OPO is shared with UNOS, which runs the matching system. If a particular organ is a good match for you, UNOS will offer that organ to your transplant center on your behalf. The transplant center’s surgeon determines whether or not that organ will be a good fit for you. If the surgeon thinks the organ is a good fit, the transplant team will call you to ask if you would like to accept the organ offer, and if you can come into the center right away. Talk to your transplant team to learn more about the offer process and to discuss what kinds of organ offers you would be interested in.
What is the average wait time for a kidney transplant?
Once you are added to the national organ transplant waiting list, you may receive an organ fairly quickly or you may wait many years. In general, the average time frame for waiting can be 3-5 years at most centers, but it is longer in some parts of the country. You should ask your transplant center to get a better understanding of the wait times.
Some factors that determine how long you wait include:
- How well you match with the available kidney
- Your blood group and if you are “sensitized” with high antibody levels, which makes matching more difficult (from prior failed transplants, blood transfusions, and/or pregnancies – see below)
- How many donors are available in your area
Why do some patients wait longer than others for a transplant?
Waiting time depends on factors such as:
1.Blood type (ABO). Blood type O has the longest wait. This is because a patient with blood type O can only receive an organ from a donor with blood type O. Those with blood type B tend to have longer wait times as well.
2.Prior pregnancies, blood transfusions, or past transplants. These increase a substance in your body called antibodies. A higher level of antibodies in your blood can make it more difficult to match with a compatible donor.
How do I know my status on the transplant waitlist?
Your transplant center must inform you when you are placed on the waitlist, and you can confirm with them that you are “active” on the list, meaning a kidney can be offered to you. Your transplant team will call you and will need you to respond quickly if there is an organ available for you. Each transplant center has different procedures. You should discuss this with your team so you have a plan in place for when a kidney is available to you.
What would prevent or disqualify me from receiving a transplant? Does my age matter?
Each transplant center sets its own guidelines for transplants. Some transplant centers may have restrictions or rules around age. Doing research will help you find the transplant center that fits your needs.
There may be some medical conditions that affect the risk of transplant for you. An example of an issue that can affect your transplant candidacy is a current or recent cancer diagnosis. Speak with your transplant team to talk about future possibilities of getting a transplant after your cancer has cleared.
Other factors that may affect transplant candidacy:
- Serious heart disease
- Not being healthy enough to survive an operation
- Active infection
- Obesity (being overweight)
- Smoking or substance abuse
Each transplant center is different. Be sure to check with your transplant center to make sure you know of all of their procedures and rules.
Who pays for the cost of a transplant?
It is important to let your transplant team know what insurance you have. They can help you determine what costs you may have to pay both for the transplant surgery and after care. If you have Medicare coverage, the costs of receiving a transplant will mostly be covered. Medicare Part B will also cover 80% of the cost of immunosuppressant medications for as long as you have Medicare. If you have health insurance from your employer or other private health insurance, most policies cover many costs related to kidney transplants, including medicines. Insurance does not cover for other costs like transportation, food, and lodging.
Can I be listed at multiple transplant centers?
Yes, it is possible to list at multiple transplant centers. Often people choose a transplant center closest to their home for convenience, but it is possible to list at multiple transplant centers if you wish. This can sometimes make your wait time shorter. Click here to learn more about multiple listing.