Waiting for an Organ
Unfortunately, there are many more people on the waiting list than there are organs available each year, so the wait can last up to several years. That’s why becoming an organ donor is so important.
National Waiting List
The national waiting list for donated organs is maintained by the United Network for Organ Sharing (UNOS). In 1984 Congress passed the National Organ Transplant Act to address the grave shortage of organs and improve organ matching and placement.
The act set up the Organ Procurement and Transplantation Network (OPTN) to maintain a national registry for organ matching. The network was to be run by a private, non-profit organization under federal contract. UNOS, the United Network for Organ Sharing, is that organization.
The network consists of many OPOs (Organ Procurement Organizations) across the country. Each is responsible for a specific region. For the Rochester, Syracuse and Finger Lakes region, the OPO is the Finger Lakes Donor Recovery Network (FLDRN).
Affiliated with the University of Rochester Medical Center, FLDRN coordinates organ donation in 19 counties with a population of 2.4 million, and serves 44 hospitals in the Finger Lakes region, central and northern New York. The phone number is (585) 272-4930.
Policies on Organ Donation
The UNOS and OPTN community includes medical professionals, patients, donors, their families and friends. Working together, the OPTN sets the policy on organ donation for the country, subject to approval by the U.S. Department of Health and Human Services (HHS). These policies are circulated for public comment and can be viewed at the UNOS Web site.
Currently, the policy groups people waiting for an organ by the severity of illness and other medical factors, such as blood type. Within any given group, kidneys are allocated based on the length of time a person has been on the wait list. They are assigned to the best match regardless of geographic region.
This is initially based on two factors:
- Blood type: Your blood type (A, B, AB, or O) must be compatible with the donor’s blood type.
- HLA factors: HLA stands for human leukocyte antigen, a genetic marker located on the surface of your white blood cells. You inherit a set of three antigens from your mother and three from your father; a higher number of matching antigens increases the chances that your new kidney will last for a long time.
If you’re selected on the basis of the first two factors, a third is evaluated:
- Antibodies: Your immune system may produce antibodies that act specifically against something in the donor’s tissues. This is checked by mixing a small sample of your blood with a small sample of the donor's blood in a tube; if no reaction occurs (often called a negative cross-match) you should be able to accept the kidney.
While You Wait
While you’re on the wait list, you’ll have regular follow-up appointments with the transplant team and follow a set of important instructions. For example, you must tell us if:
- You’re hospitalized
- Your kidney condition worsens
- Your address or telephone number changes
- You lose insurance coverage
- You travel out of town
- There are any other changes that may affect your medical care
- You need to have regular dental examinations and treat any tooth decay or other oral infections
You must be ready at all times to come to the hospital when called, and you can be called at any time for a transplant. Carry a pager or cell phone with you at all times. If you don’t have one, contact our office and we’ll assign you a pager. Also, you should continue to have regular appointments with your nephrologist or primary care physicians.