More than Friends and Followers

Facebook, Twitter, and other forms of social media are connecting organ recipients with donors.

Brenda Stormoen needs a kidney, and she’s hoping one of her 400-plus Facebook friends might be able to help her find one. A Minneapolis legal assistant, Stormoen has been living with glomerulonephritis since she was 9 years old and has already had two transplants—one in 1995 and the other in 1999. She has been on hemodialysis since her second transplant kidney started failing five years ago. “I’m a very tough match,” the soft-spoken Stormoen says. “I’ve had two kidney transplants and several blood transfusions and because of that the antibody level in my blood is very high.”

In subtle ways, Stormoen began chronicling her struggle with kidney disease and her experience with dialysis on Facebook two years ago. “I would just give updates on what happened during dialysis last night or post some saying like ‘Happiness is dialysis in my rearview mirror’ or ‘Will I ever get that elusive kidney?’”

Although she never came out and said she needed a kidney, Stormoen’s Facebook friends read between the lines. One, whom she hadn’t seen since graduating from Richfield Senior High School 35 years ago, privately emailed her and asked if she was waiting for one. “He wrote me a very long email and said he wanted to be tested. He said ‘This is part of my bucket list, and I would like to do this for you.’ It was amazing,” she says. The man, whom she hadn’t seen since graduating, turned out not to be a match. Neither did another Facebook friend, who has since gone on to participate in the paired kidney exchange program, in which one incompatible donor and recipient are placed on a list and matched with another incompatible pair who prove to be a match.

Spreading the Word, Dispelling Myths

Stormoen is one of a growing number of people who have turned to Facebook, Twitter, blogs, and other forms of social networking to spread the word about their need for a kidney. Stories that have garnered national media attention include those of the mayor of East Haven, Connecticut, who gave a kidney to a constituent and Facebook friend; 30-year-old Melissa Foster, a Michigan woman who has had more than 100 responses to her plea on Facebook for someone to step forward with a kidney; and Minneapolis music, television, and film producer Chris Strouth, who found a donor by Tweeting about needing a kidney.

More and more people in need of transplants are sharing their stories through social media sites, says Susan Mau Larson, director of public affairs for LifeSource, which manages organ and tissue donation in Minnesota, the Dakotas, and parts of Wisconsin. “I think it started with sites like Caring Bridge and Care Pages as ways in which people document their journey for friends and family,” she says. “But I’ve seen many patients extend that to their personal blogs and Facebook sites.”

Currently, more than 85,000 people in the United States are on the UNOS (United Network for Organ Sharing) waiting list for a kidney. In Minnesota, more than 1,700 people are waiting. The average waiting time for a kidney depends on a number of factors. At Hennepin County Medical Center, for instance, it ranges between three and five years. “The reality is that there is still a great need for transplants,” Mau Larson says, “and we need more people to say yes to donation.”

For that reason, organizations such as LifeSource and the University of Minnesota Medical Center-Fairview also are turning to social networking to try to spread the word about the need for donors. In November 2009, the University of Minnesota’s kidney transplant program started a blog about living donation. “We were getting people asking about it, and we set up the blog to encourage that kind of talk with experts—people who had the answers,” says Cathy Garvey, R.N., director of the solid organ transplantation program at the University of Minnesota Medical Center-Fairview. The blog has addressed issues such as who is eligible to be a living donor, how to become a donor, the risks of living donation, the financial considerations for donors, and the paired exchange program. Garvey, Arthur Matas, M.D., who directs the living donor program, and the center’s donor coordinator and social worker have made postings and moderated discussions, including an extensive one on why kidney donation has declined. “Any way you can educate people is good,” Garvey says.

Last August, LifeSource, which runs Donate Life Minnesota, a website that allows people to register online as organ and tissue donors, launched a campaign to encourage more men to sign on. The campaign, called “Half the Men” in recognition of the fact that fewer than half the men in Minnesota are registered as organ donors, made use of Twitter, Facebook, and YouTube to share stories and messages from men whose lives have been touched by organ donation. “People can see these stories and connect to these individuals,” Mau Larson says. “They may know them or know someone who knows them or they may feel they know them after hearing their story. That’s a level of engagement you don’t get any other way.”

She admits that although the three-month campaign did not garner a lot of new donors, Donate Life Minnesota has seen its Twitter followers grow to more than 200 and its Facebook fans to more than 1,000. “We’re continuing to build our fan base and put stories out there and connect people with some of the other work we’re doing,” she says.

The Message, Not the Medium

Chris Strouth has experienced firsthand the benefits of social networking. Diagnosed with IGA nephropathy three years ago, Strouth occasionally talked about his disease, which he named Harold, in posts on his blog, Twitter, and Facebook. When he learned from a Mayo Clinic expert in January that his creatinine level was over 3 mg/dL and that he would need a transplant, the first thing he did was call his wife and the second, put the word out on Twitter. “Hundreds of messages started pouring in,” he recalls. “The first people I heard from weren’t people I knew. They were people who were following me on Twitter. On Facebook, people started making a list with blood types.”

He says about 50 people called the University of Minnesota, where he eventually had surgery. Nineteen were tested. “I think they overtaxed the U’s system a little,” he says. One of Strouth’s Twitter followers, Scott Pakudaitis, turned out to be a match. Strouth had once worked with him as a stage manager for a band.

The match is thought to have been the first one arranged entirely via Twitter and Facebook. In fact, Strouth and Pakudaitis didn’t talk face to face until just four days before their surgeries in December of 2009. Both kept their followers up to date through Twitter feeds during and after the procedures. (Strouth currently has around 600 Twitter followers—up from about 200 when he first started talking about his disease—and more than 1,500 Facebook friends.) “The deal I made with Scott is that I’ll talk about this and spread the information. It’s an inspiring and cool story. … He made a sacrifice that I don’t know if I could have.”

Strouth, who has shared his experience of living with the disease, learning he needed a kidney, going through dialysis, and having a transplant in the Notes section of his Facebook page and on his blog (Talesoftheidiot.com), sees social networking as just one more way to get his story out there. “Social media is like the telephone or telegraph. It’s a form of communication,” he says. “But just saying you need a kidney isn’t enough. You need to tell your story and you need to document it. That’s what’s powerful.”

Garvey says that social networking is starting to be taken more seriously in the transplant community. She notes that it has come up in presentations at meetings of the American Transplant Congress; NATCO, The Organization for Transplant Professionals; and the International Transplant Nurses Society. In addition, Michigan State University researchers earlier this year received a $340,000 grant from the U.S. Health Resources and Services Administration’s Division of Transplantation to study ways to use social networking sites—in particular Facebook—to increase the number of college students and their friends who register as organ and tissue donors.

“With Facebook and blogs, it’s just the way people, especially younger people, are communicating,” Garvey says. “Why shouldn’t we expect that’s a way to ask for donors?”—Kim Kiser