When David Jacobs badly needed a kidney transplant three years ago, he lined up half a dozen family members and close friends who were willing to donate an organ - but none of them was a match. Ultimately, it was a friend of a friend - someone he'd never thought to ask - who came through.
"It turned out one of her last memories of her dad was when she was 5 and he was on dialysis," said Jacobs, 53, who got his transplant at California Pacific Medical Center. "She didn't want my kids to have the same experience."
What frustrated Jacobs, he said, was how difficult it was to get the donation approved. Doctors and medical ethicists had a hard time believing that his donor - a woman in her 20s who happened to be the nanny of a friend - wasn't being coerced or paid money to give up her kidney. Selling organs is illegal in the United States.
No one could believe, he said, that his donor just wanted to do the right thing - no strings attached. In fact, it's not easy for Good Samaritan organ donors to give up a kidney or other tissues they don't necessarily need, despite the fact that there are tens of thousands of people waiting for transplants.
Cases like Jacobs', along with an increasing reliance on living donors to supply kidneys, have persuaded California legislators to propose the creation of a master list of healthy, altruistic people willing to donate an organ while they're alive. If legislation is signed into law this year, California would be the first state in the country to build a Living Donor Registry.
Bill in state Senate
In addition to creating the registry, the legislation, Senate Bill 1395 by Sen. Elaine Alquist, D-Santa Clara, would make it easier for people to decide whether they want to donate their organs when they die, by requiring them to check a box when they get their driver's license.
"The spirit of generosity is out there - I think it's just waiting to be tapped," said Bryan Stewart, president of Donate Life California, a nonprofit that runs California's organ and tissue donor registry. "We could do a great service to living donors and people on waiting lists and transplant centers with a registry. The need is very clear."
About 21,000 people in California are in need of organ transplants, and the vast majority of those - about 16,500 people - are waiting for kidneys. What's unusual about kidney transplants is that they can come from healthy, living donors, not just from people who have died. In fact, more kidneys come from living donors - most of them, by far, from family members - than from deceased donors.
Surviving with one kidney
People are born with two kidneys, and they can easily survive with one functioning kidney. Studies have shown that removing a kidney usually has no long-term health consequences and donors have a normal lifespan. Still, they face a three-hour surgery and roughly six weeks of recovery time. It's not a matter to take lightly.
Anyone who volunteers to be a living donor is required to go through a thorough evaluation for potential medical complications and psychological issues. Doctors want to make sure the donor won't suffer medically from the loss of one kidney and that the organ itself is healthy; psychologists make sure the person isn't being pressured into donating.
A registry of living donors would need to be "very organized and very transparent," said Dr. Waldo Concepcion, director of pediatric kidney transplantation at Packard Children's Hospital. "The system has to be able to provide the potential donor with support and follow-up after surgery.
"We want to be sure they have a great experience, because it's the ultimate expression of the heart of a human being."
A national kidney registry for live donors already exists, serving both as a clearinghouse for signing up people who want to give an organ and a system for matching donors with compatible recipients.
Matching donors and recipients has become increasingly complicated with the advent of "paired donations" in the 1990s. Paired donations happen when, for example, Husband A wants to give a kidney to his wife, but they aren't compatible. So they get matched with Husband B and Wife B, who also needs a kidney. Husband B will give a kidney to Wife A, and Husband A gives his kidney to Wife B.
'Daisy chain' donations
These paired donations have expanded greatly, and there have now been "daisy chain" donations linking a dozen or more pairs of donors and recipients. In two weeks, surgeons at California Pacific Medical Center hope to participate in the largest chain yet, involving 15 pairs.
Such exchanges are lifesaving, but very complicated to work out. Jacobs, who received his kidney in 2007, spent much of his recovery time developing software to help make such exchanges easier to find. CPMC uses his software, called Matchmaker, to find matches among possible donors and patients in its hospital.
Trying to serve as model
"I thought it would be a really simple math problem. I was so naive," Jacobs said with a laugh. "But I had to do something. What would I tell my kids years from now? That I did nothing?"
Jacobs said his software is a good start to improving the system for matching potential donors with organ recipients. But his contribution is focused on just one hospital now. A state registry, he said, would be an "incredibly important piece" of an overhaul of California's donor programs.
"Right now all the obstacles are against everybody," he said. "We could reinvent the whole thing. We could be a model for the nation and the globe."
Information about organ and tissue donation:
To ask about kidney donation at a specific hospital, contact one of the four Bay Area transplant centers: