Organ donor from Honeoye gives 'because I can'

By Anne Johnston
Thompson Health Corporate Communications

April 21. 2015 1:36AM

Organ donor from Honeoye gives 'because I can'

CANANDAIGUA — A local woman last year joined a rare but growing breed of living organ donors whose donations go not to a family member or friend, but to a stranger. Now, she is spreading awareness of organ donation.

“I’m very excited to get the word out,” said Amanda Kuhn of Honeoye.

Kuhn, 32, is a patient account representative for UR Medicine’s Thompson Health in Canandaigua. At the urging of President/CEO Michael F. Stapleton Jr., she is sharing her story this month, which happens to be National Donate Life Month.

Stapleton first learned of Kuhn’s donation upon presenting her with one of the health system’s Health Hero awards, which go to Thompson associates who have made lasting improvements to their health. In Kuhn’s case, it was losing 60 pounds through a Weight Watchers program offered at work.

The kidney donation came about because she had an acquaintance in need of a kidney a couple of years ago and thought at the time, “That’s something I could do.”

Becoming a living kidney donor has a number of requirements, including one involving body-mass index. Following her weight loss, Kuhn contacted the Division of Solid Organ Transplantation at the University of Rochester Medical Center, recognized by the United Network for Organ Sharing (UNOS) as a transplant center for adult and pediatric liver, kidney, pancreas and heart transplantation.

Kuhn’s acquaintance had other willing donors being evaluated at the time, so Kuhn wanted to pursue becoming what’s known as an “altruistic donor” — a living donor whose organ goes to a stranger.

According to Joel Newman, assistant director of communication for UNOS, roughly one-third of all kidney transplants in the U.S. last year involved living donors. The majority of the 5,816 living donors in 2014 donated a kidney to a family member or friend, with just 185 of the living donors — approximately 3 percent — making a non-directed, altruistic donation.

“It’s a small percentage, but it is an increasing trend,” Newman said, noting, “For someone to just step up and do that is a pretty incredible thing.”

Kuhn took an online survey provided by URMC’s transplantation division, and later received a call from one of its representatives. A psychological evaluation in January 2014 was followed by education regarding the possible risks as well as extensive medical testing, and then the wait began. It didn’t last long.

“I was actually matched the day I was added to the national registry,” Kuhn said.

Kuhn has a very rare blood type — B positive — and had been told it might be a while before there was a need for her kidney. The fact that she was matched immediately leads her to believe the recipient had been waiting for quite some time.

Laparoscopic surgery took place last July 14 at Strong Memorial Hospital, with the full support of Kuhn’s husband and immediate family. There were no complications, but the operation lasted five and a half hours. Her recovery went well, and she was back to work in three and a half weeks instead of the anticipated six weeks.

“I really did fantastic,” she said, crediting her surgeon, Dr. Randeep Kashyap.

Kuhn knows nothing about the kidney recipient other than that it was a 40-year-old person in California. Should that person or that person’s family one day decide to seek Kuhn out, she has let the National Kidney Registry know she would be interested in sharing information or even meeting the recipient and/or the family.

While the recipient’s identity and the outcome of the recipient’s surgery remain a mystery, Kuhn does know that her donation was part of a “donor chain.”

Here’s how it worked: The recipient had a friend or family member in California who wanted to donate but was not a match, so that friend or family member became an altruistic donor for someone in Indiana. By the same token, the recipient in Indiana had a friend or family member who wanted to donate but was not a match and then became an altruistic donor for a stranger in New York City. All six surgeries took place the same day.

“My surgery was at 3 in the morning because my kidney had a 9 a.m. flight,” Kuhn said with a laugh, noting, “There were a lot of airplane flights with a lot of kidneys all over the country that day.”

During her recovery, Kuhn met a liver recipient and advocate for organ donation. He put her in touch with a number of programs and as a result, she is now a “Friend of Strong,” talking not only with people who are waiting for transplants but with patients and families considering organ donation. She has also spoken to University of Rochester medical students about her experience and volunteers with the Rochester Eye and Tissue Bank, spreading awareness through health fairs, including Thompson’s annual health fair for associates.

“Amanda is a wonderful person and is truly a ‘Health Hero’,” said adult nurse practitioner Mary K. Robinson of the Nephrology Unit/Renal Transplant Service at URMC.

Kuhn has zero regrets. In fact, donating a kidney to a stranger is one of the best things that has ever happened to her.

“People ask me why I did it, and my answer is always ‘Because I can,’” she says. “My message to others is, ‘We can. You can.’ It’s pretty simple.”

Learn more

According to Donate Life America, there are currently almost 124,000 men, women and children awaiting organ transplants in the United States and, on average, 21 people die each day because the organs they need are not donated in time.

The Finger Lakes Donor Recovery Network, a federally designated organ procurement organization, is looking to change that and recently launched a new campaign to spread awareness about how one deceased donor can save up to eight lives and touch many more.

To view a new 90-second video called “The Greatest Person Never Known,” learn more about organ donation and join the organ donor registry, visit www.donorrecovery.org.

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