The Kidney Transplant Waitlist – What You Need to Know
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 an option for everyone. Speak with your healthcare team to decide if transplant is an option for you.
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 using a transparent system. For kidneys, this is 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).
When is the best time to explore a kidney transplant?
It is best to explore transplant early in your disease course, before you need to start dialysis. This way, you might be able to get a transplant ‘pre-emptively,’ without ever needing to start dialysis.
It can take time to find the right transplant center, complete the transplant evaluation, explore live kidney donor options, and get on the deceased donor transplant list if needed. If you are not yet on dialysis and have a GFR of 20 or less, you can already 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.
- Choose a transplant center that best fit your needs. Things you should consider when choosing one include:
- Insurance coverage and cost
- Location for ease of going to and from the transplant center
- If you have a living donor, be sure the transplant center performs living donations and if your live donor isn’t a good match, that the transplant center participates in a ‘kidney paired exchange program.
- Support group availability
- 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.
After completing an evaluation with the transplant team, a decision will be made if you are a transplant candidate. 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 list, you should ask the team at your transplant hospital.
How is the right organ found for me?
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 organ distribution.
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, and are also involved in data follow-up regarding deceased organ donors. They raise awareness about organ donation.
Many factors contribute to whether or not an organ will be offered to you, including, but not limited to: blood type, how long you have had kidney failure, medical urgency, 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.
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 and even longer in some geographical regions 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 (from prior failed transplants, blood transfusions, and/or pregnancies)
- How many donors are available in your local area
Why do some patients wait longer than others for a transplant?
Waiting time can depend on factors such as:
- ABO (blood type). Blood type O has the longest wait. This is because blood type O donors can donate to other blood groups, but a patient with blood type O can only receive an organ from a donor with blood type O. Also, it has been found that those with blood type B tend to have longer wait times as well.
- 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.
Changes to the US organ allocation system (2014)
have impacted the way kidneys are allocated to patients. These changes to the waitlist have allowed some flexibility with the factors listed above. For example, donor matching is now done to more closely match 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 has to do with patients who joined the waitlist after being on dialysis. You now build wait-time from the time that you started dialysis- or from when it is documented that your GFR dropped to below 20.
Finally, extra priority is now also given to patients who are extraordinarily hard to match because of having high levels of antibodies from prior transplants, blood transfusions or pregnancies.
How do I know my status on the transplant waitlist?
UNOS will not confirm your placement or your status on the waitlist, but your transplant center must inform you when you are placed on the waitlist, and you should be able to confirm with them that you are active on the list. 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 and they can help you determine what costs you may incur 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. Click here to learn more about multiple listing.
Date Reviewed: 08-04-2021