I’ve never seen a crowd so electrified.
It happened at a lively meet-the-authors brunch at American Jewish University in Los Angeles the other day. The speaker was talking about her new money-saving book, Bargain Junkie, and instructed the audience of about 80 women, “I want you to share with me your own greatest bargain stories. The best one I ever heard was about a woman who got a free kidney on Craigslist. It’s hard to believe, but I’ve been assured it’s true.”
There was some disbelieving laughter, and some odd murmuring: “She’s here!” And “Marcia!” At a table in the corner, a woman with feathered silver hair raised her hand and said, not very loudly, with dignified good humor, “That’s me!”
Invited to the podium, she told her story briefly and clearly. In 2009, she had been on dialysis for two years, and on the long waiting list for a kidney transplant for four years. One day, a friend called and said that a poster on Craigslist was offering to donate a kidney to anyone in need. She got in touch with him, and a few months later, the operation took place at UCLA. The donor was a man who wanted to make amends for some bad choices in his life. The kidney worked perfectly right from the start, and she became the grateful recipient of a new life.
I was sitting in the audience — I had been flown out for the L.A. brunch to talk about a book I co-authored — and I could feel the goosebumps rising on my arms. What were the odds? As soon as brunch ended, I accosted the silver-haired woman and begged her to repeat her story to my little Flip camera. Her name is Marcia Gould, and she has the reassuringly calm manner of the high school guidance counselor she once was. Here is her tale in just 95 seconds, but keep reading afterward for the inspiring fuller version:
This story is worth much more than a little YouTube clip. Marcia’s daughter-in-law, filmmaker Jennifer Barbaro, has followed and filmed her transplant journey, and is now finishing a documentary titled “The Perfect Match.” The film’s Website is here, and the trailer, including extensive footage of the donor, is below. The voiceover includes this concise line: “Two failing systems — two perfect strangers.”
Now to begin a bit closer to the beginning:
Marcia lives in the San Fernando Valley, and is 73. She taught high school business classes, then was a guidance counselor for 14 years. In the late 1990s, she started to gain weight mysteriously, and then suddenly found her ankles swollen to the size of her calves. When her doctor put her on a diuretic, she said, she instantly lost 32 pounds — some five gallons of fluid. For years, as her kidneys slowly failed, she remained working and generally active, but finally retired in 2001.
She joined the long waiting list for a kidney in 2005. She was initially told the wait would be one to three years; later, that went up to three to five years; then to five to seven years. (According to current estimates, some 80,000 Americans are waiting for kidneys, and 15,000 of them die a year. Debate continues over how kidneys should be allocated.) Marcia called around the country seeking help, to no avail. By 2007, when she was finally put on dialysis, her kidneys were down to just 2% of their normal function.
Three time a week, for more than three hours at a time, Marcia went in for dialysis, a process that pumps out a patient’s blood to do the kidneys’ filtering work for them. The outlook was not good. Though obviously a highly rational type, she grew desperate enough to take a friend’s advice and write her wish — “I’d like to find a kidney in the next few months” — on a slip of paper, place it under a green candle and light the candle under a new moon.
Then on July 13, 2009, at about 10 a.m., Marcia’s old friend Jack Leibel happened to be poking around on the “free stuff” section of Cragislist — as many of us do — and came across this:
Jack called Marcia right away, but she was in dialysis so he left a message. He called the would-be donor and left a message as well. Within an hour or so, Jack said, the ad had been taken down, apparently because it violated Craigslist rules. (Craigslist’s posted rules forbid ads for “blood, bodily fluids or body parts” in the “for sale” section, where the “free stuff” category resides.)
“As people say, timing is everything,” Jack said. “Some days, we get lucky.”
When Marcia got the message from Jack, she said, her initial instinct was that it wasn’t worth calling, but again — just as with the green candle — she thought, “What do I have to lose?”
She called the donor, Patrick McFarlane, and “he was very receptive,” she said. Patrick, then 49, told her that he’d tried to donate a kidney in Iowa when he’d lived there, but had run into insurmountable rules.
An Iowa newspaper, the Globe Gazette, even covered Patrick’s frustration in 2006, here:
MASON CITY — A Mason City man who said he’s been blessed many times in his life is frustrated in his efforts to give something in return.
Patrick McFarlane, 47, wants to give away a kidney.
He placed a classified advertisement in today’s Globe Gazette which reads, “Kidney, very healthy, will go anywhere, any time. Call (641) 423-5233.”
“I’m not some kind of a nut. I’m a Christian who wants to do something to help other people,” McFarlane said.
He said he has been thwarted in his attempts to give away a kidney because he is unemployed and has no health insurance.
“It’s a pretty sad thing when a person can’t save another person’s life if you don’t have insurance,” he said.
Now 52, Patrick is living in Colorado these days, working as an auto detailer though he’s a woodworker by trade. He told me that before he and Marcia finally connected, he had been trying to donate for several years, in several states. His drive to donate had a positive side — his urge to use his own blessing of two healthy kidneys to save another human being — and a negative side:
“I’ve made a lot of bad choices in my life” he said. “I just kind of felt like it was my way of paying it forward. Between the blessings and kind of screwing up my life, I just thought it was the thing to do.” And if he ended up dying on the operating table, he thought, that would be a fine way to leave the planet.
When he met Marcia, Patrick said, “I thought she was an awesome lady. She’s got great strength, and she reminds me a lot of what my mom was like.”
Marcia told Patrick when they first spoke that if he wanted to follow through, he could call the UCLA kidney transplant center. He did, Marcia said, and they scheduled him for “several kinds of appointments — physical, mental, psychological.”
“He really wanted to do this,” Marcia said. “It was important to him, and he gave me a new life.”
Matches between kidney donors and recipients through Craigslist are not unheard of, but they’re almost always stories of families who posted their desperate need for a kidney and found help, not of donors who post to offer spontaneously. Here’s one by ABC and another on The Huffington Post. Here’s one about two Arizona women who both found donors through Craigslist last year.
‘Lunatic or Saint?
Patrick was clear: He wanted to donate. Marcia was clear: She would be forever grateful to him. But ethicists and transplant specialists say that there are some ethical issues involved when a donor seeks a recipient on Craigslist.
Ethicists have long considered donations between strangers as problematic, not to the point that they should be outlawed or criminalized, but highly suspect. What’s the donor’s motivation? Might it be somehow coercive? Put plainly, the central concern is the belief that someone who wants to donate a kidney to a stranger must be crazy. In fact, the title of a 2003 research paper was “The living anonymous kidney donor: lunatic or saint?”
That widespread attitude appears to be in flux, though. These days, multiple Websites match living donors with recipients they don’t know, said Ruthanne Leishman Hanto of the New England Organ Bank.
“There’s a lot of controversy in the transplant community as to whether or not that is ethical,” she said. “Depending on who you ask, you get a different answer.”
Some are troubled by a question of fairness. Donors may be choosing recipients “not based on need but based on who’s got a good story, who’s savvy enough to put themselves out on the Internet, who’s got the resources to advertise or get their name in the local paper,” she said. “It’s disadvantaging people who don’t have the knowledge or the resources to do those things.”
There’s also concern that money may change hands under the table.
On the other hand, Ruthanne said, some argue that “the transplant community can’t regulate how people meet each other” — whether through social media, newspaper articles, a matching donor site or Craigslist — before deciding to become donor and recipient. Anecdotal reports suggest that Facebook connections are on the rise because friends spread the word on behalf of patients in need.
It’s highly unusual for a donor to post on Craigslist, Ruthanne said, “but it has happened before.” In fact, The New England Program for Kidney Exchange, where she is the program manager, has tried advertising on Cragislist. The exchange allows people who need kidneys and have a donor who’s willing but not compatible with them to effectively swap with a similarly incompatible pair, so that both recipients end up with compatible kidneys.
A rare breed
Patrick would be termed a “non-directed donor” — that is, he did not initially care who received his donation, Ruthanne said. Non-directed donors remain exceedingly rare. To date, according to national data gathered since 1998, there have been 110,000 donors altogether, and just 992 non-directed donors. But their numbers seem to be rising: there were 204 last year, 149 the year before.
Why? “I think more people are hearing about it, and so they’re coming forward to be non-directed donors, and more transplant centers are receptive to evaluating non-directed donors,” Ruthanne said.
There has also been some reassuring health news for kidney donors: A study last year found that on average, the donation did not shorten their lives.
Non-directed donors do create extra concern, Ruthanne said, and some transplant centers still shy away from them, but “I think most centers have moved away from that concern.”
Still, she added, “The majority of centers I’ve worked with in New England put them through very intensive psychosocial screening. They’re not just bringing them in and medically evaluating them and saying, ‘OK, you can donate.’”
‘Normal, decent people’
Dr. Gabriel Danovitch, medical director of the kidney transplant program at UCLA where Marcia received Patrick’s kidney, says he’s seen an evolution in his own views on the subject.
“I was once very skeptical of what we call non-directed donation,” he said. “And I’ve come to the conclusion that in my experience, non-directed donors are neither lunatics nor saints. Most of them are just normal, decent people who find that this is something that adds meaning to their lives.”
The care and screening of non-directed donors must be done with great skill, he emphasized. Research suggests that among 100 people who seek to donate a kidney to a stranger, once you eliminate those who want money, or who don’t understand what they’re getting into, or who are profoundly depressed, only about four actually end up qualifying to become donors.
(Donors needs persistence as well. During the months of lead time before his transplant, Patrick said, “There were times when I got frustrated, because I had to pay all my expenses, and I lived in my truck for a year with two Weiner dogs, trying to do this. It got to where I was getting really frustrated. But the long picture was that I knew that this was what I had to do.”)
Doing right by non-directed donors is a major time commitment for medical staffs as well, Gabriel Danovitch said, and that may be part of why many transplant centers don’t take them on. “It’s a huge thing to undertake, to do it properly,” he said.
Among UCLA’s non-directed donors, he said, was a man whose generous, loving teenaged son had been killed in a terrible accident. The father found some solace for his grief in donating. Another was a woman in her mid-thirties whose mother repeatedly gave blood and whose brothers served in military combat units. “She came from that kind of family, where it’s a natural thing to give,” he said. “Both of these people were not lunatics, neither were they saints.”
A better way
In a relatively new transplant development, centers may create “chains” of incompatible donor-recipient pairs like those on the New England exchange, so that not just two but several donor-recipient pairs get compatible kidneys. “As the chains have become more popular, the number of non-directed donors have increased tremendously,” Gabriel Danovitch said.
He’d like to see a national program to coordinate such chains, he said. And he’s also hoping that California will push forward its plan to create a statewide registry for would-be donors that could evaluate them and make sure “their largesse was being used for maximal benefit.”
He tries to keep an open mind about connections on Craigslist and social media, he said, but “I’d like to think there would be a better way.”
I would, too. I love the incredible bits of serendipity in what happened to Marcia and Patrick. On the other hand, a whole registry of people willing to donate their organs would only underscore what is truly moving about Marcia’s story, and what she sees as its moral: “That there are people in the world who think of others and are willing to help them whenever possible.”
Patrick ran into a medical complication with his aorta after the operation, he said, but he’s healthier than ever these days and has no regrets at all. He’s now hoping to donate bone marrow and a portion of his liver.
“I have a great immune system and I’m super-healthy, and there are people dying,” he said. “For me, that would be like walking by a lake and seeing someone drowning, and turning your head and saying, ‘I don’t want to get involved.’ I can’t do that.”