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The National Kidney Registry
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By Garet Hil, Founder Since facilitating its first transplants in 2008, the National Kidney Registry has become the most productive paired exchange system in the world, with 62 transplants facilitated in 2009, over 100 transplants facilitated to date and 200 transplants forecasted for 2010. By working with leading transplant centers and leveraging cutting edge computer technology, the National Kidney Registry has broken through many of the barriers that have stalled preceding paired exchange efforts. The National Kidney Registry was started and is personally managed by a complete transplant industry outsider – a dad who just wanted to find a compatible donor for his daughter. Below is the founder’s story: When my youngest daughter was 10 years old, her kidneys failed. When we learned that she would never recover her kidney function, I raced home to check my old military records for my blood type to see if I would be able to donate my kidney. I was overcome with relief when I discovered that we were both “A” blood type and I would be able to donate. Both my wife and my oldest daughter were “B” blood type, so they were incompatible and could not donate. I immediately went to my doctor to see if I was medically qualified to donate. Everything looked good, but my blood pressure was higher than normal so I increased my workout schedule to 2-4 hours a day, 7 days a week. When my doctor measured my blood pressure after a few weeks, it had increased. He sent me home with a 24-hour blood pressure monitor so we could see where my blood pressure was when I was out of his office. That did the trick. I had white coat syndrome. I knew that if my blood pressure was high, it would keep me from donating my kidney to my daughter and there was nothing more important than being able to donate my kidney. To be safe, I was tested along with three of her uncles. All four of us passed the tests and three of us were three antigen matches. Now I was even more secure. Not only could I donate but I had some very good backups in case something went wrong and I could not donate. The surgery was scheduled for a Thursday in the middle of May. That Monday, we received a call from the transplant center letting us know there was a problem and we needed to return to the center and do another cross-match test. We took the additional test and waited. Late Tuesday, 36 hours prior to surgery, we received another call. I had failed the cross-match again. Surgery was canceled. I could not donate because my daughter would, most likely, reject my kidney. She had developed a very potent antibody against my B60 antigen. The following week, an anonymous donor surfaced who was a three antigen match with my daughter. After another trip to the hospital and another cross-match test, we learned that the anonymous donor had failed the cross-match test also. In the weeks that followed, all of the uncles that were initially tested failed subsequent cross-match tests. We had gone from five donors to zero. This was a dark time. In response to this, my wife and I worked around the clock to recruit 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 phone calls. In the end, after screening 15 potential direct donors, we found one who was compatible and could donate, my daughter’s 23-year-old cousin. He cleared all the hurdles, was an excellent match, and is an incredible person. My daughter received her new kidney on July 12, 2007. Both my daughter and her cousin are doing well. My primary health focus now is staying in shape so that I can donate my kidney to my daughter in a swap, should my daughter ever need another transplant. Our transplant-related challenges are behind us, but there are thousands of people who face these same challenges every year. As we struggled through the complex and difficult process of finding a compatible donor, it was clear to me that there MUST be a better way. If all incompatible donors and recipients were simply listed in one common pool and modern computer technology was used to find matches, the problems related to incompatible donors would be a thing of the past. The National Kidney Registry was founded to solve this problem and help people facing kidney failure find a compatible donor. Last Updated January 2010
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