UNOS and the Waiting List
Once you have completed all the required testing, you will be put on the waiting list. When you are waiting for a transplant, you are not only on the local transplant list but also a national list. This allows patients to get perfectly matched organs from anywhere in the country. It is impossible to say exactly how long it will take for you to receive a transplant because we never know when donors will be available. You are allowed to be on more than one wait list as long as the transplant centers have a different source for organs. Your insurance in not obliged to pay for a second evaluation so you may be required to pay our of pocket for the first visit in the transplant clinic.
UNOS (United Network for Organ Sharing) is the organization which is contracted with the federal government to oversee all organ procurement and transplant programs in the country. UNOS makes the rules about who can do transplants and how organs are to be allocated (given) to patients.
The rules regarding the matching of donor to recipients on the waitlist are in a computer program. The HLA antigens of the donor are placed in the computer at UNOS and the computer produces a "match list" for each deceased donor. The match list is based on the number of antigens matching, the antibody levels of the recipient, and the length of time a recipient has been on the waiting list. Children under 18 also get extra points. You could be listed a short time and come up on the match list due to antigen matching, or could wait for many years due to a high antibody level.
These rules govern organ allocation all across the country, however in the San Francisco bay area, there is an exception in place. Patients in that region are transplanted in the order of when they were placed on the waiting list unless a perfectly matched kidney is being offered.
UNOS is also required to collect information on all patients who receive transplants, so we will be sending information about your transplanted kidney to UNOS after you are transplanted.
While you are on the waitlist, you will be contacted by the Transplant Center every year. You will be sent a health questionnaire asking about hospitalizations or other changes in your medical condition. We will also request updates to your contact information, dialysis schedule, insurance, medications, and testing that you may have had. It is very important for you to complete and return these documents to our office. You will also be asked to come to the clinic every one to three years for an update visit with the doctor. All patients on the waitlist will also require periodic updates on certain lab tests and heart tests. Please cooperate with the staff from the Transplant Center when they contact you to schedule these tests. Failure to respond to these requests may jeopardize your status on the waiting list.