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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. HLA antigens are proteins on the surface of cells throughout the body. You inherit one set from each of your parents and they are very diverse. Differences in HLA can cause rejection and matching for them increases the chance that a 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 react with the HLA antigens and are harmful to the new kidney. The lab tests for these antibodies by mixing some of the liquid part of your blood where the antibodies live with some of the white blood cells that have HLA antigens on them from your donor and looking for a reaction. In a negative crossmatch, no reaction occurs, which means that you do not have HLA antibodies to the kidney donor.

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.