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Navigating the Organ Transplant Wait List

NEW YORK (Oct 1, 2012)

Surgeons performing a heart transplant at New York Presbyterian Hospital
Surgeons performing a heart
transplant at NewYork-Presbyterian
Hospital. (photo: Rene Perez)

"How organs get allocated gets tricky," explained Theresa Daly, N.P., the Director of Transplant Clinical Operations at NewYork-Presbyterian/Columbia University Medical Center.

When patients come into a transplant center, undergo evaluation, and are deemed suitable for organ transplantation, they are placed on a national waiting list that is managed by a federally funded organization called UNOS (United Network for Organ Sharing). There are more than 114,000 people on the list, but it's not as simple as being, say, number 35 or 300 and waiting your turn. The system has variables.

"Life-Saving" and "Life-Enhancing"

Transplantation of the liver, lung and heart, are considered life-saving operations. When a patient is added to the UNOS waiting list for these organs, an organ-specific score is generated based upon required data entered into the system. This score is used to determine how critical a patient's illness is, and prioritizes a patient on the list based, in part, on their severity of illness.

Judith Hambleton, R.N.
Judith Hambleton, R.N.

However, because of the limited amount of time that the liver, lung, heart, and pancreas can be out of the body, these organs are allocated to local transplant centers first. "So if you are the #1 patient for a heart transplant on the national list, you live in New York City, and a heart becomes available in California, you most likely will not be considered for that donor heart because you are too far away. The converse is true as well, that donor hearts in our local area are offered first to the local heart transplant centers. All of these organs are allocated based on blood type and height and/or weight matches, as well as where the patients are prioritized on the organ match list," Ms. Daly explained.

Kidneys, on the other hand, can be kept on a pump for up to approximately 30 hours and, thus, could be shipped across the country. In addition, kidney transplants are considered life-enhancing rather than life-saving operations. Thus, the wait list for kidneys is a first-come, first-serve basis. "There are specific instances where a patient might be given a higher priority on the waiting list," explained Judith Hambleton, R.N., the Chief Transplant Coordinator at NewYork-Presbyterian/Weill Cornell Medical Center. "For example, the pediatric patients are given a higher priority over adults on the kidney transplant list," she said.

Also, anyone in a situation where it is difficult to find a matching donor due to an increased amount of antibodies are given a slight advantage.

Location and Wait Time

Surgeon inspects a liver that was stored with machine preservation
Examination of a donor liver that
was stored with machine preservation.

The wait list for all organs is considerable longer on both the West and East coasts, and specifically in California and New York State. In fact, only 18% of people in New York State have consented to be organ donors and the state is ranked 50 out of 52 in terms of percentage of registered organ donors. Reasons for this discrepancy may include a greater sense of altruism in the Midwest, Ms. Hambleton suggested.

In addition, the reason may stem from a lack of education, which may lead to one of the mistaken beliefs that agreeing to be an organ donor means that emergency room staff may not work as hard to save a potential donor's life, Ms. Daly said. In fact, the medical staff in an emergency room is completely separate from the transplant team, and transplantation would only occur if all possible efforts to save a person's life failed.

Affluence and Advantage

The sometimes heard claim that celebrities or the wealthy can skip ahead on the list is a fallacy. However, the wealthy may be at an advantage in the sense that they can register for organs at different transplant centers in different states, essentially upping their odds for receiving an organ. Ms. Hambleton offered the example of Mickey Mantle who, when needing a liver transplant, had the means to travel to the region with the shortest wait list (which at the time for his blood group was Texas) and had a private plane enabling him to get to Texas quickly when an organ became available. "The vast majority of patients would not be able to do this," she said. "So it is not that the list itself allows advantages for the wealthy, it is just that they have advantages at their disposal. We try to make the system as fair as possible, but there are always going to be rare exceptions," she explained. She added that former Chicago Bears running back and Pro Football Hall of Fame recipient Walter Payton died of liver failure while waiting on the transplant list.

Living Organ Donation

A way around waiting lists for those in need of kidney or liver transplants may be living donor donation. With this, a family member or friend donates a kidney or a portion of their liver to someone in need. A person can live with one kidney and the liver can regenerate to full size.

New York-Presbyterian Transplant Brochure
Living donor liver transplants help all kinds of
people. Read stories about a few of them.

Living donors "are heroes," Ms. Daly said. "There is a terribly long wait for organ transplants, specifically in the New York City area, and we encourage anyone who possibly can to pursue living organ donation," Ms. Hambleton added.

Benefits of living donor transplants include having a scheduled surgery over an emergency surgery (with a deceased donor organ) where there is more time to insure a good donor/recipient match and to make sure the patient is in optimal health before surgery. In the case of kidney living donor transplants, the reduced wait time for transplant allows patients to receive the transplant before they need dialysis, which is linked to markedly better outcomes. With a good match, living donor kidney transplants have been known to last for up to 20 or 30 years, "approximately twice as long as those from deceased donors," Ms. Hambleton said.

Becoming an Organ Donor

Residents in New York State may sign up for a donor registry when obtaining a driver's license or non-driver identification card, or when you renew your driver's license by signing the donor box that appears on each of these forms. Residents can also sign up through the New York State Health Department, or on a voter registration form.

Those outside New York can visit Donate Life America for information about their state.

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