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Patients awaiting organ transplants start their own searches

April 6, 2018

ST. LOUIS (AP) — Elizabeth Barton’s kidneys have failed her.

The Hillsboro mother has end-stage renal disease, and in order to survive she’s on dialysis 18 hours a day. Fluid pumped into her veins through a tube in her stomach cleans her blood as a kidney should.

Barton, 38, is among the roughly 1,000 St. Louis-area residents who are waiting for a kidney transplant, a wait that can last years.

In a trend that’s being encouraged and supported by transplant coordinators, she, her friends and her family have launched their own campaign to find a willing donor.

Despite the pain and exhaustion caused by her disease, Barton still works full time as a first responder treatment consultant and coaches her 6-year-old daughter’s softball team.

Barton said she “cannot and will not let my daughter see this disease defeat me.”

“I want her to know that no matter what life throws in front of us, you fight and keep moving,” she told the St. Louis Post-Dispatch .

Her case is particularly tricky because, due to previous miscarriages, Barton’s body carries a lot of antibodies that reject other tissue, making it difficult for doctors to find her the perfect matching donor.

Dozens of people have already tested to see if they’re a match for Barton, but she’s had no luck so far — not from family or friends.

Barton’s best friend, April Smith-Hynes, thought up one approach after finding out she wasn’t a match for Barton a few months ago.

Around Christmas, Smith-Hynes created a car magnet with a picture of Barton and a phone number that reads, “My friend needs a kidney transplant to survive! To be a living donor, please call.”

In a show of support, dozens of other people, some in other counties and other states, put similar magnets on their own cars in the hopes of finding a match for Barton. Barton and her family also post to a Facebook page about her urgent need for a kidney.

“Now the whole magnet thing has become this movement,” Smith-Hynes said. ”(But) if she doesn’t get her kidney, none of it matters.”

At Barnes-Jewish Hospital’s transplant center, a person in need of an organ can wait three to four years, depending on blood type. In other parts of the country, the wait can be years longer.

While an organ from a deceased donor gives a recipient a higher likelihood of survival than they would have on dialysis, an organ given by a living donor will likely perform better and last longer, transplant experts say.

“It’s a good idea for patients who need a kidney to do everything they can to find a living donor,” BJC Transplant Director Gene Ridolfi said. “The wait is not as long, and it’s a scheduled event versus a kidney possibly becoming available in the middle of the night. And they have a better long-term outcome of survival.”

Of the 243 kidney transplants performed at the hospital last year, roughly one in four came from living donors. The need for more living donors has prompted BJC officials to explore joining a Johns Hopkins Medicine pilot program for a Facebook app directed at people in need of an organ donation.

The app is designed to give users a way to talk about their need for an organ. It prompts them to describe what it’s like to be on dialysis, how they feel about their disease, and what opportunities they’ll have if they get the organ they need. The app then puts the information into a video format that users and their families and friends can share on Facebook.

“They can say, ‘I need a kidney so I can see my grandchildren grow up,’ and this puts it in a way that they otherwise wouldn’t be able to do,” said Heather Wertin, BJC abdominal transplant program manager.

An initial trial of the app at Johns Hopkins Medicine yielded promising results, said Andrew Cameron, transplantation division chief at Johns Hopkins and one of the people who created and tested the app.

The app, called Donor, is meant to make life-saving connections while solving some emotional and ethical concerns that are unique to organ donation.

“I think we all love the story of a billboard or a T-shirt or a bumper sticker that results in a lifesaving organ transplant,” Cameron said. “At the same time, I think we have concerns in the transplant community that when we encourage donation that we do it appropriately — that we’re doing it in a way that doesn’t risk pressure or coercion, (and) there’s good information in the donation process and the risks are conveyed.”

Cameron was also part of a team of medical professionals who worked with Facebook to add a feature allowing people to specify on their profiles if they are organ donors, with a link encouraging others to donate.

Katrina Bramstedt, a transplant ethicist and professor at Bond University in Queensland, Australia, who studied the ethics behind the app, calls it “a communication tool and an education tool.”

“The app has a guided approach which helps patients shape their communications with others — it is not simply an advertisement of need, but rather a narrative of the patient’s experience,” Bramstedt said.

BJC isn’t the only local transplant center or organization that has started initiatives to encourage more organ donation. SSM Health has a marketing campaign aimed at potential donors. The National Kidney Foundation launched The Big Ask, The Big Give campaign, and hosted a workshop in St. Louis to coach patients and their families about how to make a pitch for potential donors.

The ultimate goal of these initiatives is to save the 13 people, on average, who die every day while waiting for a kidney transplant, according to the Kidney Foundation.

Like Barton, Maria Boyle, 48, of Webster Groves, put a sticker on her car to broadcast her need for a kidney, in addition to setting up a Facebook page dedicated to the subject.

Voicemails from potential donors poured in after a local news station aired her story, she said. But she also encountered a lot of fear and misconceptions about what she calls “an extremely easy surgery.”

“There are so many people out there who need a transplant, and if everybody donated one there wouldn’t be a list of 100,000 people out there,” Boyle said.

Boyle eventually got a kidney from a deceased donor, and she is chronicling her continued challenges with the new kidney on her Facebook page.

Transplant experts say people suffering from kidney failure often are reluctant to ask for something as drastic as a donated organ.

Peter Williams, 57, is among them. The Central West End resident spends nine hours a day on dialysis, but he isn’t the type to ask for help.

“I felt embarrassed,” Williams said. “I didn’t want to ask anybody for help. I was raised, ‘Work hard and you get what you’re supposed to get.’ But as my wife reminds me, a closed mouth doesn’t get fed. You never know how many people might be able to help, and people can’t help what they don’t know.”

Fortunately, Williams’ wife and children advocate on his behalf. When the family heads out on vacation in a few months, they plan to wear matching T-shirts letting the world know about Williams’ dire need for a kidney.

As she waits for a donor to step forward for her friend Barton, Smith-Hynes keeps her hopes up that her efforts will help.

“It takes two seconds out of your day to share a Facebook post, two minutes to call Barnes for information, two hours to fill out the information,” Smith-Hynes said. “And if you proceed with the surgery, it’s two days out of your life, and you’re giving her 20 years . she deserves to be here.”

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Information from: St. Louis Post-Dispatch, http://www.stltoday.com

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