Family Matters

A Mom Turns to Facebook for a Liver — and a Shot at Life

The internet can widen the pool of organ donors, so one woman is hoping she'll find her liver match online

  • Share
  • Read Later
Adam Rootman

Debra Karby with her sons, Sacha and Tobyn

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.

(MOREA Court Allows Payment for Bone Marrow. Should People Be Able to Sell Their Parts?)

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.”

(MORETexas Center’s $3 Billion Plan to Defeat Cancer)

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.”

(MOREScientists Turn Human Skin Cells Into Healthy Heart Cells)

8 comments
CatrionaGail
CatrionaGail

Debra passed away a week ago. May she rest in peace.  

timehealth
timehealth moderator

@lgoris470 Thanks so much for your kind offer. The transplant is on hold for now, unfortunately, as Debra undergoes more chemo to try to shrink the tumor. Should the transplant team decide to proceed, I will let you know.

lgoris470
lgoris470

Good afternoon Ms. Rochman. What is the status of Debra Karby's situation to-date? Has she found a donor and if so is she coming to Toronto soon for the transplant? I ask because depending on your reply, I am seriously prepared to be tested in hopes I can help her live to see her boys grow up. You may reach me at the e-mail address I used to sign-up here today. Until then, take care and God bless.

CathyCanton
CathyCanton

@EdenSpodek I know someone who ended up with breast cancer as a result of cancer treatment 15 years prior.Scary. Hope somehow it works out.

Becki Lynn Wheeler
Becki Lynn Wheeler

I match the criteria and am willing to be tested to see if I am a match. Unfortunately, I can't afford to do so on my own. Any suggestions?

Debbie Stinnett
Debbie Stinnett

Tell her to ask Romney! He is such a good guy, has the money, connections, etc. I'm SURE he would help. Lol. Seriously, hope the lady finds a donor.

EdenSpodek
EdenSpodek

@CathyCanton Me too. Thanks very much for your thoughts and retweet.

JeffZack
JeffZack

@Becki Lynn Wheeler Becky, you don't need to pay anything to find out if you're a match: just complete the forms found through this link and you will be contacted by the doctors about how to proceed: http://www.uhn.on.ca/Focus_of_Care/MOT

I wasn't sure from your comment if you know that you have the O+ or O- blood type; if you don't know, you can find out by donating blood at a local blood donation center and asking them to type your blood when you do.  Thank you for considering helping Debra!