Match for life

Match for life

An online service puts patients in touch with organ donors; it's one man's last hope

By Michele Morgan Bolton, Globe Correspondent | December 2, 2007

Edson Rafferty's posting has all the elements of a personal ad.

The 64-year-old Canton father and grandfather doesn't drink, smoke, use drugs, or eat high-cholesterol foods. He likes to travel and spend time with his family. And a piece of essential information: His blood type is O positive.

Rafferty's ad isn't meant to find love. He's looking for someone willing to offer a kidney to him after a surgeon's mistake in 2005 destroyed his own.

Now the attorney and inventor, who helped design an artificial heart and pump used today in nearly half of all open-heart surgeries, is at the mercy of others for his own life.

"I have so many things left to do," Rafferty writes on MatchingDonors.com, a Canton-based database that brings potential donors together with people who need organs.

MatchingDonors.com is a collaboration between Internet entrepreneur Paul Dooley, of Canton, and his doctor, internist Jeremiah Lowney, of Hyde Park. They started the nonprofit online database in 2004, after Dooley endured the pain of watching his father die as he waited in vain for a kidney transplant.

The service is not without critics. Ethics professors and surgeons have argued against using the Internet to allow donors to essentially choose who will get their organs.

In three years, Dooley and Lowney have facilitated 61 surgeries, with 40 more scheduled in the next 90 days. Immediately following surgery on the first patient to find a donor through the program, in October 2004, MatchingDonors.com started getting more than 2 million hits a week, according to its founders. Currently, there are 4,394 prospective donors registered on MatchingDonors.com, many in the process of being tested to see if they are a match for any of the 251 patients awaiting organs, they said.

Those who need transplants post their profiles for a monthly fee of $295. Anyone who can't afford the cost can post for free, which Dooley said accounts for about one-third of members. The nonprofit uses any revenue on overhead including lights, accountants and attorneys, Dooley said.

Donors can receive no compensation, by law; nor do the site's founders draw any salary. Although their work has been profiled around the world, both say the satisfaction of helping save lives is enough.

"I'm not saying everybody's perfect, but this gives me a lot of faith in humanity," Dooley said. "These people are putting their lives on the table. Jay and I can't cure cancer. We can't cure heart disease. But we can do this."

Before lists like MatchingDonors.com, someone who needed a new kidney, liver, or lung was placed on the United Network for Organ Sharing, affiliated with the US Department of Health, after an assessment. That list relies on posthumous donations from approved organ donors.

With the United Network, a computer system matches patients to donor organs according to criteria including blood and tissue type, immune status, medical urgency, and time spent on the waiting list. Once those factors are compiled, it's determined who among the patients should receive available organs.

As of Oct. 15, more than 97,000 peple in the United States were waiting for an organ transplant; 17 people die every day while waiting.

An ethical question
The practice of living donors making arrangements directly with patients via the Internet has drawn critics.

Douglas Hanto, chief of transplantation at Beth Israel Deaconess Medical Center and professor of surgery at Harvard Medical School, wrote in March in the New England Journal of Medicine that soliciting organs the way MatchingDonors.com does threatens the fairness of how organs are allocated. He said he would like to see available donations directed to the top of existing United Network waiting lists, after the donor's family, friends, and preexisting relationships.

But over time, Dooley and Lowney said, more professionals are backing them.

"We have great ethicists on our side who say we bring people into the pool who aren't currently in the pool," Dooley said. The American Society of Transplant Surgeons, which initially opposed the public solicitation that MatchingDonors.com espouses, recently declared that it may make more organs available.

A potential move by Medicare to cover live-donor transplants would lend more legitimacy in people's minds to what they do, both men say.

"It would encourage all hospitals to get involved," Lowney said. "And cover all costs that go along with it."

Currently, Medicare covers 99 percent of all dialysis costs, he explained. MatchingDonors.com hopes next to focus on "paired exchanges," said Lowney. He explains it like this: "I need a kidney and my wife isn't a match for me, but she's willing to donate to someone else, if someone they know can match me."

Lowney says he doesn't belive he could ever give one of his own organs to a stranger, but he said he admires those who can.

"In my practice, I see people every day who have diabetes, cancer, high blood pressure," he said. "It's satisfying to be able to help them. But this is so tangible. One day they're really sick. The next day, they're not hooked up to dialysis. You see the difference so quickly."

A big difference between the the United Network and MatchingDonors.com is that the Canton online organization gives patients and potential donors a place to communicate and correspond; once the contact is made, however, the road to transplant surgery is their own.

Once a donor and patient get in contact, a transplant coordinator blends a blood sample from each for 24 hours to see if they are a preliminary match. If they are, the donor goes to the patient's hospital (the nation has 280 transplant centers) for the transplant.

The primary regulation governing such arrangements is clear, Dooley said: "You cannot pay for an organ. You cannot give a car, or a new porch for someone's house. What patients can pay for is lost wages or travel and expenses."

Living on hope
In Canton, Rafferty grows weaker by the day as he awaits the results of tests that will show who, if any, among a handful of potential donors who have contacted him so far will be a match for his kidney transplant. "They are amazing people," he says of those with whom he's talked, who come from Pennsylvania, the Carolinas, and other states. "They usually contact me over the Internet first and tell me they read my profile, and were touched by it. I write back to say how wonderful and unbelievably selfless this act is on their part."

Although Rafferty details a range of medical inventions in his MatchingDonors.com profile, he doesn't really depict the critical role in modern history that the artificial heart he created with the renowned Dr. Harold Kletschka has played. In 1957, Kletschka conceived what he considered the most perfected artificial heart, and conducted hundreds of experiments with Rafferty, a biomedical engineer, on pulmonary and cardiovascular systems to test and prove the invention. By 1975, they had proven the superior efficiency of the Bio-Pump, which today is used in nearly half of all open-heart surgeries. Rafferty's invention is a short-term assist, which can be implanted for five or fewer days, compared with the long-term fix associated with the Jarvik artificial heart, for example.

Today, Rafferty keeps a cellphone by his side 24 hours a day, in case new potential donors see his online profile and want to step up.

What keeps him going, he explains, are the siblings, children, and grandchildren who rarely leave his thoughts.

"I love life," he says. "I've always loved life. There've been times, since the operation, where I thought, 'Is it really worth going through all this pain, all these trials and tribulations?' "

Dialysis is not easy. And the transplant surgery, which must be delayed by at least six months to deal with blood clots in his legs and lungs, would be difficult. But the answer is always yes. "I'm really happy to be alive," Rafferty stresses. His voice, though barely audible, contains a smile. "And I'm ready, I'll tell you."

http://www.boston.com/news/local/massachusetts/articles/2007/12/02/match_for_life/

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