clip_image001Web site pairs area transplant patients with donors

by Henry Davis – Buffalo News Medical Reporter

November 16, 2008

Julie Wolf was the 62-year-old director of a charity in Olean and needed a new kidney.

Linda Padilla was the 61-year-old postmaster of Ellicottville and wanted to donate a kidney.

The two met on the Internet on a Web site that pairs strangers with patients who need organs.

They recently completed a successful transplant in Buffalo at a time when the practice of soliciting living donors over the Internet remains controversial. Their meeting also marks the first successful match at www.wnykidneyconnection.org, which may be the first regional Web site of its kind in the nation.

And they have become best friends, as well as neighbors.

“I’ve been given a new life. It’s awesome,” said Wolf, who has been on dialysis for four years.

Wolf suffered from gestational diabetes 30 years ago. This is a type of diabetes that occurs during pregnancy and can damage the kidneys.

But it wasn’t until 2004 that her kidneys shut down following an angiogram, in which a dye known to pose a risk to compromised kidneys is injected into the blood as part of a test to detect heart problems.

“From that moment on, there was the realization that I would need a kidney transplant once I cleared up some other health problems,” she said.

One of Wolf’s three daughters posted a short profile on the wnykidneyconnection Web site, in addition to Wolf placing herself on a standard kidney transplant waiting list at Buffalo General Hospital.

Meanwhile, in Ellicottville, Padilla was looking for a worthy cause.

She regularly donated blood. She listed herself as a potential donor on a bone marrow transplant registry. But she felt she should do more.

“It’s just something that is important to me,” she said.

Wolf saw an article about a young man who needed a kidney and offered one of hers, but it didn’t work out. Then she started surfing the Internet and stumbled across the wnykidneyconnection Web site.

She read Wolf’s profile. Their blood types matched. They were close in age. They lived only about 25 miles apart. She also recognized Wolf as someone who had helped Padilla’s mother, Julia Waldeck. Wolf and volunteers from her organization, Interfaith Caregivers, gave Waldeck rides to radiation treatments in Olean last year when Padilla was unable to transport her mother.

After talking to her family and doing some more soul-searching, Padilla sent Wolf an e-mail and the two women met. They made an immediate connection, and a friendship began to form.

“It was weird, as if God’s hand was in this,” Wolf said.

500 on area waiting list

The transplant took place Aug. 20 in Buffalo General Hospital. The women have waited to talk about the procedure publicly until they were confident it went well.

There are about 80,000 people in the United States, including 500 in the Buffalo area, waiting for a kidney transplant, according to the United Network for Organ Sharing, the agency charged by Congress with equitably distributing organs.

About 4,000 people die each year while they wait for a kidney from a deceased or living donor. Several thousand additional patients die waiting for other organs.

Good Samaritan organ donation remains fairly rare — 71 cases in 2005 and 68 in 2006 in the United States, according to data in the July edition of Clinical Transplantation. But the demand for organs is so much greater than the supply that more patients are searching the Internet to find suitable donors.

It’s a controversial practice that works outside the existing system to allocate organs.

Advocates counter that more lives can be saved by allowing patients to seek living sympathetic strangers willing to donate.

Critics worry that the practice is potentially unfair, giving an advantage to individuals with money or those with the most sympathetic stories.

Most hospitals refuse to consider organs for transplant from publicly solicited living donors. A survey published last year in the American Journal of Transplantation found that only 30 percent of transplant programs would evaluate such donors.

Buffalo General and Erie County Medical Center, the only hospitals in the Buffalo Niagara region that perform transplants, are among the minority.

Responding to requests from patients, the hospitals changed their policies in 2006 to allow transplants for patients who find live donors via the Internet or other media.

At the time, a Jamestown man who needed a kidney posted an appeal on MatchingDonors.com, based in Massachusetts, the largest Web site for matching donors with patients. He ended up flying in a donor from Alaska who responded to his profile at the Web site, which charges $595 for a listing.

Four people involved in the lobbying effort here to change the hospitals’ policies — all of them touched in some way by the organ donation issue — in 2006 also started www.wnykidneyconnection.org , a no-cost, regional Web site. “It makes more sense to solicit donors from near where patients live so they aren’t paying huge travel and accommodation costs for donors. We also thought a Web site that matches donors and patients should be free,” said Patti Merritt, a Grand Island woman who received a kidney transplant in 2001 from her sister-in-law.

In September, the Western New York Chapter of the National Kidney Foundation incorporated the Web site as one of its programs.

“The decision was a no-brainer. This is local people helping local people,” said Anne K. C. McCooey, executive director.

She said the chapter plans to expand the Internet effort and offer it as a template that other chapters can copy nationwide.

“No one else is doing this,” McCooey said.

Both laud use of Web
The National Kidney Foundation does not have an official position on publicly solicited kidneys but does act as a clearinghouse for patients and potential donors looking for information, said Ellie Schlam, director of external communications.

For Wolf and Padilla, there are no doubts about using the Web to encourage organ transplantation.

Wolf no longer needs dialysis three days a week, each session five hours long. She’s preparing to retire at the end of the year to spend more time traveling and with her grandchildren.

Padilla is preparing to return to work more content about herself.

“This was an opportunity to see someone have a better life because of something I did,” she said.

After the operation, Padilla moved to Olean not far from Wolf, a move she had been planning to make to be near her mother and sister.

The two families have become close. Wolf, Padilla and Padilla’s sister, Ruth, regularly hang out together.

“I gained two sisters,” said Wolf. “It’s as if I’ve always known them.”

hdavis@buffnews.com