How the Transplant Waiting List Works

By Jacqueline Harris, RN, BSN, CCTC  

The kidney transplant waiting list is a list of transplant candidates maintained by the United Network of Organ Sharing (UNOS). UNOS holds the contract to operate the Organ Procurement and Transplant Network (OPTN).How do I become eligible to be placed on the waiting list? A referral is needed from your physician in order to be evaluated by a transplant program as a potential transplant candidate. Your next step would be to select a transplant hospital, with factors to consider including location, compatibility with your insurance program and financial arrangements. Once you have selected a hospital, schedule an appointment for an evaluation to find out if you are a candidate for transplant. During the evaluation, ask questions to learn as much as you can about that hospital and its transplant team. If the transplant team members determine that you are a suitable transplant candidate, they will add you to the national list of all people waiting for a transplant. Your transplant center will be requesting laboratory tests from your dialysis facility to keep your blood samples up to date.
 
How long is the wait for a kidney? The average wait time for a kidney transplant can vary from two to ten years, depending on several different factors:
 
ABO Blood Type - The kidney needs to come from a donor with a compatible blood type.

Antibody level - Your antibody level measures the strength of antibodies within your system. A high level of antibodies makes it more difficult to find a compatible donor for you. If you've had multiple transplants, multiple pregnancies, blood transfusions, etc., you most likely will have a higher antibody level than transplant candidates who have not.
 
Organ Availability - Some OPO's (Organ Procurement Organizations, also know as organ allocation "regions") have higher wait times than others. Discuss with your transplant coordinator the average wait times for your particular area. They can vary greatly across the country. You can look into multi-listing, this means you can list at more than one transplant center, including one outside of your primary OPO. However, be sure that you can reasonable get to the center even during the middle of the night, should an organ become available then. You cannot list at two transplant centers located within the same OPO. Say you live in Los Angeles, you couldn't list at both UCLA and USC. However you could list at UCLA and UCSF or Cedars-Sinai and UC Davis.
 
How does an offer from the waiting list work? When a donor organ becomes available, the transplant coordinator will call you and discuss specifics about the donor organ. They do not reveal the donor name or personal specifics. They will discuss with you any issues or concerns regarding the organ, or let you know if it is a great offer. You will always have the right to decline an organ. However, should you decline, you do not automatically move to the top of the list for the next available organ. You would need to wait until another becomes available that matches you, is compatible and if you're in line to receive it based on matching. Carefully consider all of the issues before you decline an offer.
 
While you're on the wait-list, please make sure that the coordinators have all of your contact information, especially if you change phone numbers, address, dialysis schedule/location, insurance, etc. If they can't reach you, or your insurance hasn't been updated, you could lose out on an offer and be denied the transplant. If you have an infection or a cold you may not be able to receive the kidney so it is important to stay as healthy as possible. Hopefully that call is just around the corner?

About the Author
Jacqueline Harris is a Senior Executive Healthcare Specialist with the Immunology Division of Astellas Pharma US. She is an RN, Clinical Nurse Specialist and former transplant coordinator at Cedars-Sinai Medical Center and UCLA Medical Centers. She has over 20 years experience of ICU, critical care and Nephrology experience. She is also a board member and volunteer with Renal Support Network as well as a private pilot who enjoys flying whenever able.  She lives in La Canada, CA.