July 31, 2008 -- Robyn Brandon remembers July 2004 as a month of firsts -- she bought her first house, took her first trip to Disney World with her husband and four kids and, at the end of the trip, she had her first kidney failure.
Within three weeks her kidneys completely gave out, a result of a rare disease, and she was put on dialysis, hooked up to a blood-cleansing machine three times a week.
"I don't want to die like this, on this machine," Robyn remembers telling her nurses. She had lost weight, became depressed, and had come close to death when she contracted a virus. Robyn's doctors hoped to get her a kidney transplant but realized that finding a suitable match for her particular blood and tissue type would be rare.
"I had hope I could live a normal life but when my doctor said that, I went home and cried," she said.
Her husband Alan wouldn't give up on her. As he described it, he watched his own mother, who passed away years earlier, get the "life sucked out of her" enduring dialysis treatments. The Brandons, who have been married for 19 years, would end up making another first -- taking part in a kidney exchange that would involve two other couples, two hospitals, and a cross-country journey of Robyn's new kidney.
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More than 74,000 Americans are waiting for kidney transplants, according to the National Kidney Foundation, and the list continues to grow every year. Only about one-fourth will get one this year. The rest will either die waiting -- on average 12 people a day -- or become too sick for a transplant.
The shortage is so severe that some are taking things into their own hands. Four years ago, "kidney wanted" ads started appearing on Matchingdonors.com, a Web site created by a doctor and his patient, where people can browse profiles created by those in need of kidneys.
The Web site is a nonprofit venture whose stated mission is to augment "the current failing system" and enable those who are sick to find "potential altruistic live organ donors" over the Web. More than 5,000 potential donors have already registered.
But some people have raised questions about the fairness of the site. There are various fees to make a wanted ad (it's $595 for a lifetime membership, although the site now offers a more affordable $25-a-month plan).
Samuel Kerstein, a philosopher and fellow at Harvard's Program in Ethics and Health, points out that "it is uncomfortable to think of people in need of organs having to make some kind of case for themselves" and ponders how one chooses one case over another.
"Why should someone who is a more moving writer be more privileged in getting an organ than someone who is less eloquent?" Kerstein asked. Although he thinks for the most part the site is a good idea, as long as donors are well-informed and receiving no payment, which would be illegal.
Finding the Match
Another way to increase donor transplants is to increase kidney exchanges, which Dr. Robert Montgomery, the chief of transplantation at Johns Hopkins Hospital and Robyn Brandon's surgeon, has helped pioneer.
In early 2007, Montgomery found the rare match for Robyn in Tomomi Barron, a healthy woman living in California. Tomomi's husband, Patrick, was one of those who turned to the Web seeking a donor after his kidneys failed. But they had also reached out to Hopkins, as well as to other hospitals close to them, and were able to get matched.
In paired transplant exchanges, relatives or friends who want to donate to a loved one but are incompatible, can still contribute by giving their kidney to an unrelated recipient they match. In turn, that recipient's incompatible donor gives up their kidney.
In Robyn's case there were three couples involved, in which either the wife or husband needed a kidney and the other wanted to donate, but were not compatible.
The third couple in the swap was a South Korean husband and wife living in Silicon Valley. It was decided Alan, Robyn's husband, would fly to San Francisco where all the surgeries to remove the kidneys would take place at the same time. Robyn would remain behind, for fears of complications and that travel outside of Baltimore could compromise her health.
In April 2007 at the California Pacific Medical Center, Alan's kidney was removed and given to the South Korean wife. Her husband's kidney was transplanted into Patrick Barron, and Tomomi Barron's kidney was removed and placed in a cooler that was tracked with a global positioning system.
Montgomery took the kidney on a journey through the streets of San Francisco, onto a chartered jet, and finally by helicopter to Hopkins to successfully transplant it into his patient Robyn.
It was the first time a kidney swap had been arranged between two hospitals and at such a great distance.
"It did mark a change for the way this is going to be done in the future," Montgomery said.
The success of this bicoastal triple swap was helpful in getting the United Network for Organ Sharing (UNOS), the organization that allocates organs to recipients for the federal government, to push forward its blueprint of a national program that arranges and matches up kidney exchanges like this one, he said. The goal is to have the program in place by 2010.
"It's great and I think it's going to increase the number of transplants by 1,500 a year," Montgomery said. "In the meantime, we're going to continue doing what we're doing."
A New Chance at Life
Thanks to her new kidney, the "color has returned" to Robyn's cheeks and she says she will be forever grateful to the person who gave her "another chance at life." She knows how lucky she is to have Alan and her family for support.
But after fighting for her future, she now must face its reality, which is not without financial hardship. She is struggling to find a job as a computer programmer, which is what she did before she got sick, and Alan, although fully recovered, got little money for the time he had to take off from his truck driving job for the surgery. They worry about losing their house.
"The swaps are fantastic don't get me wrong," says Sally Satel, scholar at the American Enterprise Institute and recipient of a donor kidney herself. "But we should reward individuals because it could encourage even more who might not otherwise rush to donate."
Satel, who is writing a policy book titled "When Altruism Isn't Enough: The Case for Compensating Kidney Donors," said she believes people might need incentives to donate organs.
She, along with various physicians, economists and legal scholars, are pushing for a government-regulated system to provide incentives for people willing to donate to a stranger, such as contributions to a retirement fund, lifetime health insurance, or vouchers for a child's school or college.
"Organ donation in this country is, and should be, a public health issue ... which is to make more kidneys available," Satel said.
Kerstein, however, argues that society would be making a "moral error" in paying people, akin to treating them like spare parts.
"If we are serious – why don't we have an organ draft so every person who is a healthy adult has an equal chance to donate an organ?" Kerstein joked. "And that way it wouldn't just be the poor."
But he does agree there should be more alternatives, perhaps like Spain's "opt-out" system in which the default when a person dies is to have the organs donated. Whatever the solution, Kerstein said the issue needs to become a priority.
"We as a society have to decide how important it is to us to save these people who are dying for want of organs," he said.