Three Sisters Find Kidney Donor for Dad Using Craigslist
The Craigslist ad was short and to the point: “Please Help Us, My Dad Needs a Kidney!” Jennifer Flood, 30, and her sisters (her twin Cynthia and older sibling Heather, 32) posted the message on Craigslist in a desperate attempt to find a someone willing to make the ultimate sacrifice: donate a kidney to a complete stranger without asking anything in return.
That ad launched a chain of events that eventually led the Pleasantville, N.Y.-based family to find such a persona 48-year-old California woman named Dawn Verdickwho was willing to donate a kidney to their father, Daniel Flood, 68. The kidney transplant took place December 12, and the family is beyond grateful.
The journey was incredible, but it was also difficult, Flood says, and Craigslist isnt the easiest way to find an unrelated organ donor. But there are plenty of people trying to do the same on the free online network, including patients in New Jersey, Colorado, Pennsylvania, Delaware, and other areas.
“Were not recommending people to post ads on Craigslist, just because theres a lot of loopholes, a lot of scammers. If youre not skilled at sifting through tons of information, its not going to work for you,” says Flood. She called the experience an “emotionally draining, physically draining journey.”
Next Page: When Flood found out... [ pagebreak ]When Flood found out in 2007 that her dads kidneys were failing, she was shocked. Like many parents, her father had tried to protect his children from the bad news for as long as possible.
Although Flood, her two sisters, and their brother, Christopher, knew their father had hypertension and was taking blood pressure–lowering drugs, they didnt know his kidney damage was so bad that he needed dialysisor a kidney transplantsoon.
“He kind of kept it a secret; he was trying to protect us from his illness,” says Flood. Immediately, the family members had themselves tested to see if they could donate a kidney, but no dice. (Although kidney transplants do require tissue matching, having a matching blood type is even more important.)
Flood, a psychiatric nurse, knew that the statistics werent encouraging. Roughly 17 people in the U.S. die each day while on waiting lists (which are managed by the United Network for Organ Sharing (UNOS)), and about 80,000 people are currently on the waiting list. Patients can wait anywhere from two to six years for an organ. Flood also knew that sometimes these organs, which come from cadavers, dont function as well as those from a living donor.
Their desperate solution? Put an ad on Craigslist. The family was already using the site for just about everythingto find jobs, childcare, and to buy and sell items. "We all just came together and said, 'Why not use Craigslist to find a living donor for dad?'" she says. "Even though its a shot in the dark, why not try?"
They posted an ad in August 2007 and not much happened. But then a local journalist saw their post and mentioned it on a radio show; the responses started streaming in. Overall, there were more than 100 replies to the ad within a few months.
Next Page: Posting the ad... [ pagebreak ]Posting the ad turned out to be the easy part. “It was tons of work,” says Flood. She and her sisters had to wade through the responses to find an appropriate donor.
They interviewed all the candidates and sent likely candidates a kit for a blood donation. They ended up with five possible donors, and after tissue matching were left with three. Two were ruled out due to other medical conditions, leaving Verdick, a childrens book publisher, who ended up donating a kidney to their father.
But part of the screening process including steering clear of people who wanted to sell a kidney, which is illegal.
“You can tell right away,” says Flood. “The conversations are, 'You know, I cant pay my bills this month; Im going to need that much for this.' Thats when you pretty much know where its going.”
In fact, finding a kidney donor on the Internet is a controversial practice because of the potential for abuse, says Flood.
Typically, the organ recipients health insurance covers the donors surgery to have the organ removed. By law, the recipient can also pay for the donors lost wages, travel expenses, accommodations, and other transplant-related expenses, but thats it. (Which is what the Flood family covered for Verdick.)
Looking for a donor was so tricky that the Flood sisters launched a foundation in March, the Flood Sisters Kidney Foundation of America, to provide a matching service for patients and altruistic donors willing to take the leap and donate a kidney to a stranger. They have postings from potential donors and recipients, including one potential donor who originally responded to the Craigslist ad but wasnt a match for Daniel Flood. (They charge fees for posting on the site.)
However, there are other resources for people looking for an unrelated kidney donor.
Next Page: Ruthanne Hanto, RN, MPH... [ pagebreak ]Ruthanne Hanto, RN, MPH, clinical program manager of the New England Program for Kidney Exchange (NEPKE), has never heard of someone finding a donor organ on Craigslist.
“Whats unique about this family is that they are very strong advocates for their father and they have the resources to investigate other options,” she says. “Not everybody has the knowledge or tools available to do that.”
Had Craigslist not worked out, the Flood family could have pursued paired kidney donation, she says, which helps people who have a friend or a family member willing to donate but unable due to a blood-type mismatch. Donor A and recipient B are paired to donor C and recipient D; donor A gives a kidney to recipient D, and donor C gives one to recipient B.
“Exchange programs are a way that these people who dont match to their family and friends can actually donate a kidney and get more people transplanted in the bargain,” says Hanto.
The first paired donation in the U.S. took place in 2000, and the practice started to pick up speed in 2004, when computer optimization programs were developed. There are now several networks in the country doing paired donations: Johns Hopkins University; the Alliance for Paired Donation, in Toledo, Ohio; and NEPKE are the largest, says Hanto. Many of these networks are regional. For example, NEPKE largely works with donors and recipients in six New England states and several centers in New Jersey.
However, they are willing to work with any transplant center in the country to help facilitate a swap, she says.
NEPKE averages 9 to 10 paired donations per year, and nearly 500 have been done in the U.S. so far, according to Hanto. One big advantage of paired exchanges is that people who want to volunteer to donate a kidney to anyone in the network can help two or more people get a kidneythe person they match and a person who is a good match for that individuals family or friend who is willing to donate (and so on).
Paired donation programs have been such a success that UNOS is launching a pilot program in the spring of 2010 to have a more national system, she says.
“Im very much looking forward to paired exchange moving to a national level,” says Hanto. “People are limited right now because they dont have a paired exchange program near them.”
There are also other donor-recipient matching services, notably a site called MatchingDonors.com. For a one-time cost of $595, the site allows people seeking an unrelated kidney donor to post information about themselves. The nonprofit service allows a free posting if an individual is unable to pay.
“We developed this website back in 2003, and our first successful match that went on to surgery was October of 2004,” says Jeremiah Lowney, DO, the sites cofounder and medical director, who said hes never heard of a family using Craigslist to find a donor organ. The site has had 91 successful matches that have gone on to surgery, he says. However, the site doesnt screen potential donors in any way. It currently boasts 380 recipient profiles and 5,500 potential donors.
Once the potential donor contacts the patient, the patient has a transplant center send the donor a test kit; the donor then goes to a doctor or a local lab to draw a blood sample. The transplant center, in turn, determines if the two have matching blood types.
Alternative-donation options arent well known and may be missed by families grappling with a health crisis. This was true for the Flood family, although it worked out in the end.
“We didnt know at the time about MatchingDonors.com or any other paired donation procedures,” says Flood. However, she notes that “when we received over 100 responses in October 2007, we knew there was hope in Craigslist.”
“We put it out the universe, and people are good out there; I dont think a lot of people realize that theres good people in the world.”