National Kidney Registry facilitates transplants otherwise unthinkable

Sometimes people really do offer something of themselves without expectations of anything in return; this type of generosity is what the National Kidney Registry was built upon, and how it continues thriving today.

The National Kidney Registry strives to save lives of those faced with kidney failure by increasing the quality, speed and number of living donor transplants around the world. The nonprofit organization, based out of Long Island, NY, sees a day in the future when “every incompatible or poorly compatible living donor in the world will pass through a common registry and find a well matched living donor in under six months,” the NKR website states.

Garet Hil, founder of the NKR, became involved in the donation process when his youngest daughter’s kidneys failed at only 10-years-old. He and his daughter were both Type A blood, and he thought that he would be able to donate the needed kidney that his wife and oldest daughter, both Type B, could not. However, after finding out that his blood pressure was too high—and seeing it actually soar when he increased his workouts to 2-4 hours each day--he realized that donation was not as automatic as he had believed. But, upon wearing a blood pressure monitor for 24 hours, they learned that his blood pressure was fine when he was outside of the doctor’s office—something known as “white coat syndrome,” when a patient has high blood pressure in a clinical setting, but is fine outside of the doctor’s office. This would allow him to donate after all, and surgery was scheduled.

Unfortunately, the procedure was unable to go forward as planned, when Hil failed the necessary antigen cross-match test. Only 36 hours prior to surgery, the procedure was canceled, after additional testing revealed that his daughter had developed a potent antibody against his B60 antigen, meaning that she would most likely reject the donated kidney from Hil.

There was little to do but wait. Hil’s brothers, initially cross-matches like Hil, also came to fail subsequent cross-match tests, and a potential anonymous donor failed the cross-match test, as well. “We had gone from five donors to zero,” Hil said in a message on the NKR website. “This was a dark time. In response to this, my wife and I worked around the clock to recruit and test additional donors. We also attempted to enter ourselves in every kidney exchange program in the United States. None of these paired exchange programs were able to find a match for our daughter. Several programs did not even return my many phone calls and some of them wanted to force our daughter to switch to far away hospitals just to enter their exchange program.”

Eventually, after many screenings, the Hils learned that their daughter’s 23-year-old cousin was a match, and the little girl received her new kidney on July 12, 2007. Both she and her donor continue to do well since the surgery. However, Hil realized, after his family’s ordeal, that there had to be a better way to do things when it came to finding a compatible donor for kidney transplants. What if all donors were listed in a single pool, and technology was used to facilitate matches? From this realization and vision, the National Kidney Registry was founded.

A recent example demonstrates just how important this registry has become for patients with kidney failure. “Chain 124,” as the NKR has labeled it, recently enabled the transplants of 30 kidneys from living donors, all linked in some way, to become reality. Some donors knew each other, some were complete strangers. Hil and the NKR was essential in orchestrating these operations, with donors and kidneys being transported across the nation for some operations, and with changes having to be coordinated when necessary. A detailed list of donors and exchanges was reported this week by the New York Times, made possible by the willingness of the human spirit, as well as by an algorithm Hil developed to successfully match donors and keep the chain of giving going forward. However, as the success of the chain depends on each member of the chain, so does risk of failure.

Breaking a single link in the chain can lead to numerous people losing a life-saving donation, regardless of whether the link is lost due to sickness, unforeseen insurance difficulties or, in some cases, a donor simply losing his/her nerve and backing out of the process. So, it is important that a donor not enter into the process lightly—truly, many people's lives may depend on your single link.

For more information on kidney donation, visit the National Kidney Registry online.

Image: National Kidney Registry

Comment and add to the story without registration, but keep the comments meaningful please. Links are not accepted.