http://www.bostonglobe.com/metro/regionals/north/2013/12/22/melrose-man-turns-social-media-find-kidney-donor/Taking plea online
By Kathy Shiels Tully
One click could change David Shakespeare’s life.
Or it could be a ping, a like, a tweet, or the swoosh of an e-mail. Even the old-fashioned ring of a phone call.
Shakespeare, 54, a Melrose resident, has polycystic kidney disease, an incurable genetic condition that affects 600,000 people nationwide. It took the lives of his mother and brother. Now it’s threatening to shorten his life.
In the past year, the function of both of his kidneys has dropped significantly, Shakespeare said. Finding a living donor — a healthy person willing to donate a kidney to be transplanted in his body — is the best chance he has to stop the disease.
Shakespeare’s wife of 14 years and his remaining brother immediately volunteered to donate, but both were disqualified for medical reasons.
Shakespeare is on a list for a kidney from a deceased person. But a kidney from a living donor frequently lasts longer — often 20 or more years, Shakespeare said — while one from a deceased donor, while still “great,” might last half that time.
Dialysis is another treatment option, but one he’s trying to avoid, as it could compromise any future kidney transplant.
In mid-June, Shakespeare launched a full-out campaign to find a living donor. Meshing social media with old-fashioned networking, he’s blasting his urgent plea — “Shakespeare needs a kidney” — across the country and into cyberspace.
People both well-known and unknown are rallying around him.
His neighbor, Glenn Blackburn, a professional designer, created a website, Shakespeare Needs a Kidney, with links to Facebook, Twitter, and Google, as well as a flier that visitors can print out and post.
Local businesses on Melrose’s Main Street have plastered the fliers on their front doors. Friend Howie Newman, a Melrose musician, assumed the role of publicist to reach out to local newspapers.
At the Massachusetts Department of Environmental Protection in Boston, where Shakespeare has worked almost 20 years, the union he belongs to wrote an article in its newsletter. In the Philadelphia area, his high school alumni magazine featured another. A young woman who declined any payment is posting “hundreds of fliers,” Shakespeare said, around Boston’s colleges.
In September, Shakespeare appeared on WCVB-TV news in a story about would-be transplant patients using social media to find donors.
All the publicity is a bit jarring to the soft-spoken Shakespeare. “I’m not a terribly outgoing person, so being this visible is not comfortable for me.”
He is also uncomfortable “talking about a serious medical condition. It feels like I’m wanting people to feel sorry for me, so it’s awkward that way.”
Managing social media is new to him, but Shakespeare’s trying to embrace it, on top of work, doctor appointments, and life with his wife.
“I have friends and family who use social media all the time,” he said, “but it’s not something I’d normally be that active with.”
The trend for those in Shakespeare’s situation to use social media is growing. “Before the computer or Internet,” said Anne Seaward-Hersh, donor coordinator at Massachusetts General Hospital, “people would put an ad in the church bulletin or a club, and only reach a certain number of people.
“Now with the Internet and social media, look how many people you can reach, around the world,” she said. “It gives more opportunities to find donors, for sure.”
His Facebook page, Shakespeare reports, has close to 200 “likes.” Only two responses have requested money in exchange for a kidney. Most messages, however, offer prayers to promises to donate a kidney.
A typical message is like this recent one from a hospice nurse: “Saw a flier in a Starbucks and learned of your illness. I am type A- and live in Gloucester, MA. Can I help?”
Shakespeare’s reply included contact information for the MGH donor coordinator, with this added note. “I realize donation isn’t for everyone, so it that doesn’t work out, anything you can do to spread the work about my situation is greatly appreciated. Thanks.”
His campaign has generated potential donors, he said, though not everyone is a match or medically suitable. Privacy laws prevent him from knowing exactly who and how many potential donors have stepped forward.
Robin Messing of Watertown, a kidney recipient herself, has met with Shakespeare to help him brainstorm his appeal. After her own transplant experience, Messing founded KidneyforU.com to help people find donors, because the need is so great.
“If you were to fill Fenway Park, [Gillette] Stadium, and TD Garden,” she said, “it would not come close to the need for donors.”
Asking for an organ donation isn’t easy, she said. “First, you learn to start talking about it. Next, you learn to send it out in a letter.’’
Social media is a great way to connect to many people at once, she said.
“What people don’t get, due to a lack of education or awareness, is that while a transplant is a major surgery, the risks are minimal,’’ she said. “A donor is in the hospital two days. Recouping might take about two weeks.”
The recipient feels improvement immediately after the transplant, she said. And for most donors, she added, the feeling of saving a person’s life is life-changing.
After a nine-month search, in which her sister was ruled out as a match, Messing found a donor when Charles “Boz” Boswell of Weymouth, a member of her ski club, stepped forward.
Donate Life Melrose, a local chapter of the national organization, also is helping Shakespeare.
The volunteer advocacy group is planning an awareness campaign on the immediate need for organ donors, of which Shakespeare’s story will be a part.
They’ve tapped another Melrosian, Tug Yourgrau, cofounder of the Somerville-based Powderhouse Productions, an independent producer of television programs, to help produce YouTube videos.
Ann Linehan, a Donate Life Melrose member, knows the value of an organ donation all too well.
In 2008, her daughter Laura’s well-publicized plea for a liver donation helped raise awareness of the need for organ donations. Born with tyrosinemia, a rare disorder that prevents the body from breaking down an amino acid, Laura had her first liver transplant at age 2, only to learn at age 12 she had been infected with hepatitis C during the transplant surgery.
After a desperate search for a liver, Laura died at age 20 on the day a match was finally found, her mother said.
Ann Linehan’s voice breaks at the memory of her daughter’s search and struggle.
“I can’t think of anything more rewarding than to save someone’s life,” she said.
Topic: Melrose, Massachusetts: Taking plea online (Read 3032 times)