Calling All Kidneys

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Calling All Kidneys
Local woman seeks living kidney donor with some help from Facebook.
By Michelle Gilliss | Email the author | May 17, 2011

Mike Skinner is a loving father and husband. But when his wife of 16 years, Anne Casale-Skinner, received her latest bloodwork results, he became an advocate for a living donor transplant as well.

Skinner is making a public appeal via social media outlets, primarily Facebook, to spread the word about the need for living donors, with the hope of finding someone who can donate a kidney to Anne, who suffers from polycystic kidney disease (PKD).

“My wife is a successful Realtor and was a little uneasy with reaching out like this, but we decided that her health was more important,” said Mike Skinner. “I saw the potential in other stories out there, and that people have used Facebook and other social media outlets to get donors. I saw the power of social media to do some good.”

It’s true that social media outlets such as Facebook and Twitter have changed the landscape of information sharing. Skinner references an incredible example in the case of a New Kids On The Block fan who found a kidney donor after Donnie Wahlberg of NKOTB heard about her case via Twitter.

“Donny Wahlberg got a kidney for a fan on Twitter with a few clicks, 140 characters to be exact. The power that people have is incredible,” said Mike Skinner, amazed. “That started my fire. I’m not going to get anything done just sitting here.”

He was further driven to his call for action when his wife’s kidney function levels dropped three levels. Her kidney fuction is currently at 10 percent, which is the critical point. Anything below 10 percent will require Anne to begin dialysis treatments.

“The goal for us is to find a suitable match before she has to go on dialysis; her  prognosis is much better if a donor can be found before then and dialysis is no way to live,” Mike Skinner said. “It’s a commitment of three to four days a week, and the treatments last three to four hours each time.”

“I’ve had to educate myself about how to go about getting a kidney through Mass. General Hospital; I’m just trying to get the word out,” he said.

Tapping into the social network
Skinner decided to use Facebook primarily due to the fact that he is a frequent user. Networking through his personal page, however, did not initially pick up steam, as he had hoped.

“It was frustrating for me. I would put something funny up and get 35,000 comments, but when I put that my wife was sick, I  heard crickets. Nobody knew what to say,” Mike Skinner said.

“I even threatened my Facebook friends that I wasn’t going to be funny anymore until I got a kidney for my wife; I’m just at the point where I can tell people what I want — I want people to share...the story,” he said.

He developed a Facebook group for his brother-in-law a year ago, called Kidney, Kidney, Kidney...we’re not kidding you, we really need a Kidney!, which has since been used as a vehicle to share his wife’s story. Mike Skinner has also created an additional Facebook page, Share Your Spare: Calling All Kidneys, which is packed with information about Anne and their family, with links to information from several living donation blogs and Web sites.

Skinner, a devoted Red Sox fan, has even posted links to Anne’s story on the pages of his favorite team, hoping they can help in some way.

“I like to tell people about our big Sox story — my wife was actually in the movie Fever Pitch, which was shot at Fenway (in 2004). In the ‘Opening Day’ scene, Mark Belhorn hit the ball and it goes into the green monster — my wife caught that ball! She carried it around with her for the rest of the season,” Mike Skinner said.

“I found Remdog, David Ortiz and Jonathan Papelbon [on Facebook] and posted on each of their pages. Sometimes you need help from people who have that celebrity to really get people’s attention. So I'm asking The Red Sox for help with this, too,” he said.

An inherited disease
Anne inherited PKD from her father, who passed away due to complications from his own kidney transplant in 1974. Her two brothers also have the disease, one of which underwent a successful kidney transplant last year. The living donor was his wife, who was a perfect match.

Mike Skinner was heartbroken to discover that he was medically disqualified from donating, and there are no matches within the family.

“It was difficult being ruled out because I always thought I would be the one to put a kidney on the table,” he said. “There’s a program called NEPKE, New England Paired Kidney Exchange, run by the New England Organ Bank, where basically, if you give a kidney you get a kidney. It’s like an exchange program for living donation; I was ready to do it.”

Of the four Skinner children, the Skinners’ two daughters have also been diagnosed with the disease, however their two sons have not.

“We had my oldest screened when she was 15-years-old and found out that she had it. When my youngest was one-year-old, her ultrasound detected cysts...one-third of the size of her kidney. By the next year, her kidney had grown,” he said.

“Typically a kidney is about the size of your fist, but with the disease they will grow to the size of a football and will be loaded with cysts,” he said.

Who can be a kidney donor?
According to The Living Kidney Donors Network, there are over 80,000 people on the waiting list for a kidney transplant and many people wait more than five years for a kidney from a deceased donor. The need for living donation is greater than ever before, as the number of people requiring these donations has doubled in the past 10 years and continues to grow.

A good living donor candidate is someone who is healthy, well-informed and makes a voluntary decision to donate one of their kidneys. Living donors must be over 18 and usually under 70 years of age. They must be in good general health with no evidence of significant high blood pressure, diabetes, cancer, kidney disease, heart disease or hepatitis.

Skinner’s main objective is clear: find a suitable match to save his wife’s life. But he knows that asking for a body part is a difficult thing to ask for.

“People always say, ‘I’d do anything for you,’ but you can’t really walk up and say, ‘Can I have a kidney?’ It’s not fair to them, and when it comes down to it, you know psychologically or medically, they find that they just can’t, for whatever reasons,” Skinner said.

Instead Skinner is focused on getting Anne’s story, and her need for a living kidney donor, out to as many people as possible.

“Somebody out there has been thinking about donation, or has wanted to help out in this way. Through the power of social media and by people being touched enough by this story that they help us by sharing it...that will connect us to the right donor,” he said.

He is asking for the public’s help. “Just keep liking our pages and clicking ‘Share,’” he said.

‘Can’t stop living’
To date, Anne has been managing fairly well. She’s still working full-time and gets weekly injections, given to her by her husband, in an effort to keep her white blood cell count up. Although she gets tired and run down, Skinner describes the toll on his wife as being more emotional than physical, for now.

“People see her laughing or having a good time, and think, ‘Wow, I thought you were sick.’ It’s a silent killer,” he said.

“If she does nothing about it, her kidneys will shut down and she’ll die. So as long as she keeps on top of it, keeps her potassium levels and blood pressure down, sees her doctor regularly and takes really good care of herself, she’s OK,” Mike Skinner said. “We just can’t stop living.”

http://danvers.patch.com/articles/calling-all-kidneys