HOW I FOUND MY DONOR

 

Kidney found via Internet

Tuesday, May 3, 2011

By Leah Wynalek

THE COLUMBUS DISPATCH

 

             Kidney recipient Suzanne Kloss, left, of Columbus with donor Michelle 

             Cleaton of Winter Park, Fla.  

 

Thirteen months ago, Suzanne Kloss began her search where most others do these days: on the Internet. 

 

She wasn't seeking movie times or driving directions, though.

 

She was looking for a kidney.

 

On Sunday evening, the Columbus resident, 57, left the Ohio State University Medical Center with a donated organ - courtesy of a Florida preschool teacher who answered her online plea for help.

 

"Electronic media just spread the word so much more quickly," Kloss said, "and you reach so many more people."

Such transplant arrangements are becoming increasingly common situations as more patients use social media to try to secure organs from living donors, said Harvey Mysel, who in 2006 founded the Living Kidney Donors Network while pursuing a living-kidney donation (which he received the next year).

 

"I helped someone who got a transplant three weeks ago, and his donor was found via a Craigslist ad," said Mysel, whose organization helps educate patients and potential donors about living donations.

 

More recently, New Kids on the Block singer Donnie Wahlberg used the microblogging service Twitter to help a fan in Nashville, Tenn., find a kidney donor.

 

The health struggles for Kloss started nearly five decades ago, when, at age 9, she learned she had chronic kidney disease.

 

The illness reveals few symptoms but, over time, slowly weakens kidney functioning.

 

Doctors told her 15 years ago that she might eventually need a transplant. In October 2009, they estimated that, without a donated kidney, she could forestall dialysis for only about a year.

 

"The words that kept going through my head were 'How do you ask for a kidney?'" Kloss recalled. "And I couldn't (ask) - not even my family."

 

Instead, she turned to the Internet.

 

Kloss spent two months developing a website (www.livingkidneydonorsearch.com) detailing information on living-donor transplants. She launched the site in mid-June.

 

She also pursued the more conventional route: After an evaluation at the OSU pretransplant center, she was added to the national kidney-transplant waiting list through the United Network for Organ Sharing - which provides kidneys from deceased donors.

 

"I wanted to search for a living donor immediately as well as get on the wait list as a backup," she said. "A living-donor kidney . . . is usually in better shape."

 

Within a week of the site launch, Michelle Cleaton discovered a link to it on a coworker's Facebook page and felt drawn to help.

 

The preschool teacher in Winter Park, Fla., made contact with Kloss and the OSU transplant team to determine what testing she would need for a potential organ donation.

 

Members of the hospital staff told her they were hoping to land a Columbus-area donor.

 

"I was really disappointed because I felt so strongly after praying about it (the transplant) that this was just destined to happen," said Cleaton, 48.

 

Kloss, too, had a special sense about the connection.

 

"From the very moment that I saw Michelle's post," she said, "I just had this feeling she was going to be the one."

 

Four months after the overture from Cleaton, Kloss learned that two potential Columbus donors had been deemed unsuitable as matches.

 

She then sent email to Cleaton asking whether she was still willing to donate.

 

"I wasn't apprehensive at all," Cleaton said.

 

Tests performed in Florida showed her kidneys to be a good match for Kloss.

 

The two kept in touch by email throughout the preparation process, never talking by phone or in person until April 4, when Cleaton flew to Columbus for a final evaluation. Three weeks later, she returned to Columbus for the surgeries - on April 26.

 

Last year, 312 of the 593 kidney transplants performed in Ohio - and 6,281 of the 13,522 performed nationally - involved living donors, according to the Organ Procurement and Transplant Network, part of the U.S. Department of Health and Human Services.

 

Robin Petersen, a living-kidney-donor coordinator at the OSU Comprehensive Transplant Center, has seen an increase in donors identified through social media.

 

Of the 100 living-kidney donations that the hospital averages each year, she said, a half dozen typically originate from Internet exchanges.

 

Dr. Ronald Pelletier, who removed Cleaton's kidney in a procedure called a nephrectomy, hadn't previously assisted with a transplant between a patient and a donor who had met online.

 

Typically, he said, donors are spouses, family members or church friends. 

 

Petersen expects Web searches for donors to increase, but she advises patients to exercise caution.

 

"I'd encourage them to . . . make sure, when they're contacted by someone, that it is truly an altruistic offer and that the person is really looking out for their best interest," she said.

 

Those seeking a living donor online should also prepare for disappointment, Mysel said, because prospective donors might change their minds and cut off contact.

 

"People develop relationships with individuals that they have a connection with . . . and even more so in these online relationships," he said.

 

A living-donor kidney, Petersen said, reduces a patient's wait - from an average of three

to seven years on a list to as little as two to three months.

 

And such a kidney is more durable than one from a deceased donor: After five years, 81 percent of living-donor kidneys continue to function, compared with 68 percent of deceased-donor kidneys, according to data from the United Network for Organ Sharing.

 

The removal of a healthy kidney takes about two hours and usually requires a two-day hospital stay. A kidney recipient's insurance typically covers the medical expenses incurred for donor testing as well as a donor's surgery.

 

The donor can usually return to work in about three weeks.

 

Cleaton, who left the OSU Medical Center two days after the surgery, never felt nervous, she said.

 

"God gave me these extra parts," she said, "and I only need one to function."

 

She joined Kloss in nicknaming the healthy kidney "Pristine Christine."

 

Kloss, who said yesterday she is feeling well but tired, had high praise for Cleaton.

 

"She saved two lives - mine and the life of the person who can now have the cadaver kidney that I would have taken."

 

If you are seeking a donor and would like to have your story included on this site, see How to be Listed. To learn how to create your own donor search page on Facebook, see How to Create a Facebook Donor Search Page.