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Patients Find Kidney Donors on Facebook

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A new trend has people sharing more than just their photographs on Facebook. But don’t get the wrong impression.

Sarah Taylor was one of about 84,000 Americans in need of a kidney transplant. She also was one of a few people who have been able to meet their medical needs through Facebook.

Taylor, 53, had been in renal failure for eight years and in desperate need of a kidney. One night, she was on Facebook and decided to post a message.

“I said, ‘If anybody would be interested in being a donor for me for a kidney transplant, you have to be between the ages of 18 and 64, you cannot be obese, cannot have high blood pressure and cannot be diabetic. And, if that leaves anybody, please call Allegheny General in Pittsburgh,’” she said.

To her surprise, she received more than 197 responses from all over the country, including one from Australia.

But the best match was Sarah Steelman, a high school friend and former Pennsylvania representative who lived just two blocks away from Taylor in Indiana, Pa.

“She saw my posting on Facebook and she decided to donate a kidney,” Taylor said. “So she went down to Allegheny General and she ended up being my best match. The whole thing was so overwhelming.”

“It’s a great medium to bring people together,” said Dr. Ngoc Thai, director of Abdominal Transplant at Allegheny General Hospital Center. “And this is one of the positive benefits of it. So, I do think that greater communication will bring you more of these stories.”

Potential donors go through intensive testing to prevent future complications, which makes 64-year-old Steelman’s results surprising.

“Usually there’s an age criteria. We tend to prefer donors who are less than 60. Sarah Steelman was 64, but she was a very, very healthy 64,” said Thai, who added that finding a living donor not only speeds up the process, but assures you a quality kidney because the screening process is so intensive.

Taylor and Steelman had their surgeries on July 15 and came out of it without any complications.

Just three months earlier in April, 44-year-old Carlos Sanchez also had kidney transplant surgery after finding his donor on Facebook.

Late last year, he was at a clinic in his home town of East Haven, Conn., getting tested to be put on the kidney transplant list. Sanchez, who has Type 1 diabetes and was suffering from kidney failure, was hesitant to tell people outside of his family that he needed a kidney because he didn’t want people to treat him differently. But the doctors at the clinic told him it needed to be done if he wanted to avoid dialysis, which, for Type 1 diabetics, has a five-year mortality rate as high as 70 to 75 percent, Thai said.

Sanchez had an interesting idea. In-between tests that day at the clinic, Sanchez got on his phone, logged on to Facebook and posted a message on his profile page asking if anyone would be willing to donate a kidney for him.

“I put it on Facebook as my status that my family was not qualified to be kidney donors because diabetes runs in my family, and if anybody was interested in being a donor or getting tested, to contact me,” Sanchez said.

Two minutes later, Sanchez had a donor and, as of April 8 this year, he also had a healthy kidney.

April Capone Almon, the mayor of East Haven, knew Sanchez casually and she happened to be at her desk and on Facebook when he reluctantly posted his message.

She responded immediately, but Sanchez didn’t take her offer seriously and just continued his testing at the clinic. But, when she sent him a second message a few minutes later, he sent her the information she would need to get tested and they went from there.

“I just feel so lucky. I received much more than I gave,” Almon said. “The best thing for me was that before I could even think about getting out of my hospital bed, Carlos was up and visiting me.”

For John Burge from Cedar Rapids, Iowa, the response wasn’t as immediate. Two-and-a-half years ago, he was told that he would need a transplant.

“It didn't come as a big surprise, but it kind of got me started a little bit, as far as really trying to get out there and finding a donor because I knew that I didn't want to be on dialysis,” he said.

After exhausting all of his options, he decided to create a Facebook page last September to connect with people and see if he could find a donor that way. He posted a message on his page, but didn’t get a response. Then, his son and daughter took his message to their Facebook pages and, within 15 minutes, his son Matthew got a response.

Nick Etten knew Matthew from college, but had never met his dad. Still, he offered to get tested for him. Luckily, he was a match and two-and-a-half months later, on Dec. 17, they had the surgery at the University of Iowa Hospital and Clinics Transplant Center.

“Six months later, I'm riding my bike back and forth to work every day and doing yard work, and all those things I normally did,” John said. “But the truly amazing thing is that I didn't realize how sick I was before. It's almost like somebody turned on a switch and woke me up, and it's been a whole new life experience ever since.”

Approximately 10 to 12 percent of those on a kidney transplant waiting list die every year. Living donations not only speed up the transplant process, they can start working within seconds, as opposed to kidneys from cadavers, which generally take a full day, Thai said.

After receiving their new kidneys, Taylor, Sanchez and Burge are looking to give back in their own way by raising awareness about donation.

“Right now, we're going around for awareness that you can be a living donor and be fine,” said Sanchez, who has been contacted by the American Diabetes Association to do speaking engagements.

As far as how he feels about Facebook, Sanchez said: “We're glad it's being used for that because we're so used to hearing so many bad things about social networking. It’s amazing.”