Sunday, June 9, 2013

Giving the gift of life - a one woman crusade by Leah Hostalet to connect organ donors and save lives through Facebook..."Find a Kidney Central"

Becky Melton’s “friend” request to Jerry Wilde, a complete stranger in dire need of a new kidney, came with a photo and a gift.
The texted photo: a picture of Melton, 27, holding a hand-drawn sign showing two kidneys and a message -- “We’re a match!” The gift: one of Melton’s kidneys.
Melton, a Richmond, Ind. resident, just days before had perused a Facebook page created in November to find a new kidney for Wilde, a 49-year-old Indiana college professor whose body had been ravaged by two years of dialysis treatments following removal of a cancerous kidney. Wilde was on a transplant waiting list and needed the organ to stay alive. The transplant surgery was successfully performed Feb. 24.
“I’d never spoken to her before she texted me,” Wilde told Friday. “Today I feel great. I’m stunned and honored and absolutely blown away that anyone would do that for me, or for any person. Becky always tells me, ‘Jerry, I’m not a hero.’ She is the definition of a hero.”
Facebook -- which on May 1 allowed users to post their organ-donation status -- is rapidly blossoming into a hub for organ solicitation. Within this surreal, new corner of the social network, the vast majority of pages are set up explicitly for people requiring kidney transplants. More than 80 people have shared their wrenching tales of illness and desperation, along with their blood types. These same “I Need a Kidney!” pages often carry an ominous sense that a clock is ticking toward a lifetime expiration date.
“Living-donor kidneys last a lot longer than kidneys from deceased donors. That’s why there’s this big push on Facebook for living donors,” said Leah Hostalet, who established the “Find A Kidney for Jerry" page.  About seven years ago, Wilde was Hostalet’s educational psychology professor at Indiana University East in Richmond, Ind. 
Hostalet immediately saw there were dozens of kidney-solicitation pages scattered across Facebook. She next organized many into a single Facebook nexus called  “Find a Kidney Central.” On Friday, Hostalet’s page --which also includes advice and donation laws -- listed 86 people (from 28 states) seeking kidney donors. She knows of four people, including Wilde, who’ve had successful transplants via Facebook-found "friends," plus another four people who have located donors through the social network and who now are awaiting transplant surgeries.
Across the country, there are close to 115,000 people on transplant waiting lists, according to the U.S. Department Health and Human Services. More than 80 percent of them -- about 92,500 people -- need new kidneys.
Last November, researchers at Loyola Medical Center in Maywood, Ill., scoured Facebook for people publicly pleading for new kidneys. They located 91 such Facebook profiles for people ranging in age from 2 to 69, the researchers reported in early May at a meeting of the National Kidney Foundation. Patients themselves launched 37 percent of those pages; their children or family set up the rest. At least 12 percent of those Facebook pages later reported a successful transplant, while 30 percent told their followers they had located potential donors.
“Most of the efforts we have seen in social media involve a search for a potential living donor,” said Joel Newman, assistant director communications for the United Network for Organ Sharing, a non-profit organization that manages the U.S. organ transplant system under a federal contract. UNOS has no authority over the screening and selection of potential living donors. That job falls to local transplant centers, which apply their own medical judgments.
Each potential donor found through Hostalet’s Facebook hub -- including Becky Melton -- must undergo rigorous health exams before being allowed to gift a kidney. (The first priority is being a blood match.)  Like any potential, living donors, the Facebook donors she works with are given CT scans, an array of blood tests, even psychological evaluations, Hostalet said.
UNOS has studied public solicitation for organs, Newman said. “We decided we could not offer specific recommendations on appropriate or inappropriate relationships between potential living donors and recipients.  We do advise that any potential living donor be thoroughly informed on the risks, benefits and options of living donation before making a decision.”
Indeed, tapping social media to locate a new kidney, or any organ, is rife with potential pitfalls, said Dr. Arthur Caplan, a professor of medical ethics at the University of Pennsylvania.
Some would-be Facebook donors, Caplan said, may be mentally unbalanced. Far more are secretly seeking payment  - as many as 75 percent of the people who respond to a Facebook organ plea, he estimates, want cash in return.
On the black market, donated organs can fetch $50,000 on up to $100,000 or more, Caplan added. Selling an organ is a federal felony, Newman said.
“It’s a Wild West world on the Internet,” Caplan said. “There’s a lot of interesting behavior once you peek behind the happy, white-and-blue Facebook logo.
“I’m not against this. People looking for a life-saving kidney are going to do what they can. But there are some real ethical problems. Number one, it’s not fair in that sense these organs don’t necessarily go to the sickest person. If you have a good PR firm and a Facebook page and you look nice and you’re articulate, you’re more likely to get heard than someone living in a poor neighborhood who doesn’t even have a computer.”
Hostalet agreed that folks who turn to Facebook to find organs “have to be careful” about scams, especially identity thieves.  She offers such warnings on her Facebook hub.
“But it can be successful. And it can be great,” Hostalet said. “Just look at Jerry Wilde and Becky Melton.”
Melton, who said late last fall she was "praying for purpose in my life,” saw Wilde’s Facebook page the day it was launched. While scanning her Facebook news feed, she noticed a link to the "Find a Kidney for Jerry" site that one of her friends had posted. She was curious, clicked on it, and was immediately hooked by his plight. 
“I was instantly drawn to his story. He has a wife and two kids, he’s a college professor, and the biggest thing: he spent 18 hours a week on dialysis,” Melton said.
Their blood types matched, she read. So she began getting tested, without telling Wilde. When she was cleared to become his donor, she reached out to the college prof through Facebook and via that initial text message.
“Was it scary? Sure, it’s scary walking through the bright, white hallways of a hospital by yourself, in nothing but an oversized gown, pushing the IV pole you’re hooked up to, heading to a table to be cut open and have a major organ removed,” Melton said. “(But) I think I got the biggest gift out of all this. There’s no way to describe the way it feels to share the gift of life.”