The liver is a remarkable organ. Like a starfish, it regenerates. Cleave it in two, and within eight weeks, it’s nearly regrown to its former size. That biological bit of trivia could help save my friend Debra Karby’s life.
Debra is the younger sister of one of my best friends. She was diagnosed seven months ago with an aggressive liver sarcoma. Sarcomas don’t like chemotherapy, and after six rounds, Deb’s care team in Vancouver, where she lives, conceded that the potent drugs hadn’t made the tumor shrink. In fact, it had actually progressed. Her best — really her only — shot at ousting this invader is a liver transplant.
The transplant is controversial. Her disease is too unusual (her doctors are convinced it’s a result of radiation she had 19 years ago for Hodgkins lymphoma) and her tumor too advanced for her to languish on the transplant list for an organ from a deceased donor, waiting to inch forward in line. She needs a live donor — someone willing to donate a chunk of liver — soon. For various reasons, her family members don’t qualify.
In this last-ditch effort to save her life, she turned — where else? — to the Internet. As social media continues to define the world we live in, people in need of donors are increasingly going online to find them. There are even websites, including Matching Donors, that help broker matches by charging would-be recipients $595 to post their plea.
Live-donor liver transplants are more technically difficult than donor kidney transplants, and the magnitude of what she’s asking for is not lost on Deb or her family. “It’s overwhelming,” says Deb, who’s married and has two boys, ages 4 ½ and 7. “It’s the biggest ask of my life.”
Public solicitation has a long history. Before the Web, people took out ads in newspapers; in 2004, Todd Krampitz advertised his need for a liver via billboards on major Houston thoroughfares that read “I Need A Liver. Please Help Save My Life.” In addition to Facebook appeals, people have found donors through Craigslist. “We hear of dozens of campaigns a year,” says Joel Newman, spokesman for the United Network for Organ Sharing (UNOS), which is federally contracted to match up deceased donors with recipients. “It’s a natural outgrowth of the connectedness we have online.
But even in the Internet age, most people don’t end up drumming up donors on their own; they wait for their turn on the transplant list. That’s what UNOS typically supports — particularly when it comes to deceased donation — so that would-be recipients can’t leapfrog over sicker people on the list. Even so, families of deceased donors are still able to direct donations to a specific recipient. When a pastor of a Washington, D.C., church needed a transplant, the family of a parishioner who died instructed his organs be given to the pastor. In another case, the heart of a daughter who died in a car accident was transplanted into her father.
Deb was advised by the transplant team at Toronto General Hospital — which says it has the largest live-donor liver transplant program in North America — to start looking for a living donor. So last week she took a deep breath and posted her “ask” online and on Facebook. Word spread quickly. Deb has gotten emails and Facebook messages from both friends and strangers telling her that they’re registering to see if they are a potential match. Among the responses from people she knows came one from someone she doesn’t, a 28-year-old who wrote, “I’ve always wanted to do something like this in my life.”
Live donor transplants have become much more common since a brother first gave his kidney to his twin at a Boston hospital in 1954, but 30 years passed before Congress approved the National Organ Transplant Act, which banned selling human organs and offered guidelines in the U.S. for how to allocate organs. Canada’s need for live donors is arguably even greater than that of the U.S.; Canadians don’t register to become organ donors as regularly as Americans do. Still, even in the U.S., long transplant lists often make soliciting a live donor a recipient’s best chance of receiving a new organ.
The biggest risk for Deb, according to the transplant team, is that cancerous cells that have already spread outside the liver could erupt into rapidly growing tumors once she starts taking the immunosuppressant drugs required after a transplant. Body scans haven’t shown any evidence of cancer outside Deb’s liver, but it’s possible that some clusters of cells are too small to be detected with imaging. The hospital appears willing to give it a go, but they won’t speculate on the chances of success.
“I don’t know what my odds are with this but I know what my odds are without this,” says Deb. “And I want to see my kids grow up.”