Big Swap: Personal Challenge gives birth to National Kidney Registry

[okarol]

The Big Swap

By Garet Hil

Personal Challenge gives birth to National Kidney Registry

Two years ago our daughter, who was 10 at the time, lost her kidney function. We ended up in the local emergency room then transferred to a nearby hospital where she immediately went on dialysis. We quickly learned that a living donor transplant was her best long term option. I was cleared for donation along with three uncles. Thirty-six hours prior to surgery, I learned I had failed the final cross match test and had become “incompatible.” If I donated my kidney, my daughter would reject it so the surgery was cancelled. Subsequently, all three uncles also failed the cross match test along with one altruistic anonymous donor. We were devastated and reacted by launching an extensive donor search while I entered myself and my daughter in every paired exchange system in the U.S. in an attempt to trade my kidney to get one back for my daughter. The paired exchange effort did not work, but after screening 15 direct donors, one passed and could donate. The donor was my 23-year-old nephew. He donated his kidney in July of 2007 and both he and my daughter are doing well. In fact, four weeks after the surgery my nephew was body surfing on the beaches of Ocean City, Md.

Fast Forward to Present

As we worked with all the exchange programs across the country, it was clear a better national system was needed to facilitate more paired exchange transplants, so my wife and I founded the National Kidney Registry (NKR) after our daughter’s successful transplant and donated $220,000 to get it off the ground. Since the first transplants we facilitated in February of 2008, we have organized 13 chains and many traditional swaps, facilitating more than 50 transplants from coast to coast. We are currently working with the majority of the top 20 transplant centers in the U.S. (by 2008 transplant volume) and hope to organize 100 transplants by the end of this year and 200 next year.

The Anatomy of the Big Chain

The largest chain facilitated by NKR was completed in June 2009 and involved 22 carefully orchestrated surgeries across four transplant centers (see graph on page 7). The chain started with the gift of life given by one amazing man who registered with NKR in 2008. He donated his kidney to a complete stranger in December of the same year setting in motion a chain that allowed 11 people to get off dialysis treatment. The chain progressed in three main segments with the first completing in early December. The second segment completed over year-end and the third segment completed in June of 2009. Below is an overview of this historic chain.

Cluster         Cornell    Barnabas    Columbia    Montifiore    Total
1    2-Dec       1                                            1    2
2    18-Dec       1                1                 1                         3
3    5-Jan                                   1                  1
4    23-Jan       1               1                                      2
5    26-Jun       3                                                   3
Total Transplants                                             11

To learn more about the National Kidney Registry visit www.kidneyregistry.org.

Garet Hil is Founder and President of the National Kidney Registry, a non-profit organization whose mission is to save and improve the lives of people facing kidney failure by increasing the quality, speed and number of living donor transplants in the world. Mr. Hil owns a software development company, serves on the board of Peridrome Corporation and is a sub-committee member of the UNOS Paired Exchange Working Group.

By the Numbers as of Oct. 7, 2009

Organ Waiting List Candidates = 104,122

Individuals Waiting on a Kidney = 86,833

Years on Waiting list (2003 - 2004)
White                  3.59 years
Black                  5.01 years
Hispanic              5.50 years
Asian                   4.99 years
American Indian   4.09 years
Pacific Islander    6.50 years

Source: United Network for Organ Sharing.

For more information on kidney transplantation, visit the AAKP Web site, www.aakp.org/transplant-information. You can also subscribe to AAKP’s Kidney Transplant Today, a monthly electronic newsletter featuring the latest news and information on kidney transplantation. Subscription is FREE. Just email your request to info@aakp.org or call (800) 749-2257.

This article originally appeared in the November 2009 issue of aakpRENALIFE.

http://www.aakp.org/aakp-library/Big-Swap/