People are using social media to improve their odds of finding organ donors: ‘Doing it can save my life’

July 09--When Melanie Perry peers out the seventh-floor window of her Kenwood high-rise, she has a clear view of the helicopter pad at the University of Chicago Medical Center.

"It's as if God is telling me your kidney is in your view," she said. "God is keeping me. He can move mountains."

Perry, 34, has spent most of her life hoping for better days. When she was a girl, she was diagnosed with lupus, an autoimmune disease that claimed both kidneys. After her first transplant failed, her 16-year relationship with dialysis began. Every week, she undergoes three appointments, each up to three hours.

The grueling routine has saved her life, but it has also made it harder to get another transplant. After so many years of undergoing dialysis and receiving blood products, "I'm sort of like a melting pot, and that makes it hard to find a match," Perry said.

So she has turned to social media, hoping to reach as many people as possible willing to donate a kidney. "I'm emotionally drained," she said recently. "I'm afraid of not being able to get (a kidney). ... I'm afraid of having to live the rest of my life on dialysis."

Perry is not alone.

More than 8 million Americans suffer from chronic kidney disease, and about 450,000 of them are kept alive through dialysis. About 100,000 people are waiting for a kidney transplant, 300 of them near death, according to the Gift of Hope Organ and Tissue Donor Network. Just in Chicago, about 3,165 people are on the waiting list.

Most people in this country waiting for an organ transplant need a kidney. Next in line are those waiting for a liver, then heart, then lung. The wait for a kidney donation can be years, compared to weeks or months for a heart.

Like Perry, more and more people are resorting to social media as medical advances make it increasingly possible for strangers to become living organ donors.

Facebook, for example, allows members to share their organ donor status and helps them register to become an organ donor. Several other online sites offer advice and help people either locate potential donors or register as one. They include WaitList Zero, the National Kidney Registry and the Alliance for Paired Kidney Donation.

An article this month in the journal Bioethics proposed Facebook-type platforms where people looking for living donors could post information about themselves.

"One can appeal to people by providing facts, figures, and impartial generalized reports," write Greg Moorlock and Heather Draper with the Warwick Medical School in England. "But something that prompts a stronger and immediate emotional reaction may be more effective at motivating them to provide a solution."

The authors worry that such networks could be abused by people who profit from "the underground organ market." But they argue that the benefits are still worth looking into. "Using 'identifiable victims' within a personalized approach to promoting donation may be an effective way to increase living kidney donation," they conclude.

The National Kidney Foundation also urges caution. "Be careful and use common sense," it says on its website. "Ask your transplant center for advice. Don't put yourself in a vulnerable situation where someone can try and take advantage of your situation. The issue of buying and selling organs may come up. This practice has been illegal in the U.S. since 1984, when it was outlawed by the National Organ Transplant Act."

Live donors -- like the son who donated a kidney to his father, Chicago police superintendent Eddie Johnson -- are key to reducing the long waiting list, according to Kevin Cmunt, CEO of the Gift of Hope Organ and Tissue Donor Network.

The network has overseen about 260 live donation transplants and its goal is 500 by 2020, Cmunt said. Reaching more strangers would help the group meet its goal.

"A person can function quite well and normally with one kidney," he said. "With education about live donation, we can make people comfortable with the process and hopefully lower the number of deaths each year."

Cmunt acknowledged that many in need of a kidney find it difficult to ask a relative or a friend, much less a stranger.

Perry said she had to get up the nerve to ask her family. When no one was a match, she finally went to Facebook.

She posted her status on Facebook and asked friends to get tested to see if they were a match to her. She also asked them to reach out to their friends. She posted her appeal in early March and has not found anyone yet.

Meanwhile, her situation is getting more urgent. Last year, tests showed that calcifications in her body -- abnormal accumulations of calcium salts -- were worsening.

The calcium buildup will eventually get to the point in which Perry will not be able to receive a new kidney, according to Dr. Yolanda Becker, surgical director of the kidney and pancreas transplant team at the University of Chicago Medicine. "Dialysis is a lifesaving procedure that cleanses the poison out of your body, but it's not natural," she said. "Eventually you get hardening of the arteries."

Perry has had other health issues. She spent most of April and parts of May in the hospital for digestive and stomach problems.

During all her struggles with end-stage kidney disease, Perry has managed to capture glimmers of hope.

She recently completed a business program. "I was a hermit before school, but I even made the dean's list," Perry said. "It was an experience."

Going to school opened her eyes to other possibilities. "I want to work. I love to do customer service," she said. "I want to travel and explore things."

But Perry hasn't dwelled on other dreams, such as getting married or starting a family. "I don't even bother dating. The guys in my age range are so immature," she said. "I don't want to deal with the heartbreak."

But who knows what might happen, she wonders, if someone finally calls her transplant team at the University of Chicago Medicine (773-702-4500) and asks about getting screened.

"I don't want anybody feeling sorry for me," Perry said. "If you don't want to do it, it's no pressure. But doing it can save my life."

The screening process begins with a simple blood test. Those wanting to be a live donor must be 18 and share the same blood type as the person receiving the organ. Donors must be prepared to undergo extensive medical and psychological screenings, including a check for the human leukocyte antigen HLA, which plays a role in the body's immune response to foreign substances. The level of HLA helps determine the likelihood of the organ being rejected.

Typically, donors should also not be suffering from high blood pressure, uncontrollable diabetes, HIV/AIDS or hepatitis.

"Most live donors go back to their normal lives within one to two weeks after surgery," said Becker, adding post-operative care comes with a few instructions like no heavy lifting.

Usually, the transplant recipient's insurance will cover such expenses as evaluation, surgery and some of the follow-up testing. Potential donors can contact the National Living Donor Assistance Center at 703-414-1600 or LivingDonorAssistance.org with questions and help with costs.

Officials at the Gift of Hope have been working with legislators to draft measures that would provide specialized health care for donors. Also in the works is a family leave measure that would give workplace protections to donors, according to Cmunt.

"You can save someone's life," Cmunt said. "There's nothing greater you can do in life."

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