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SHEPHERDSTOWN, W.Va. (AP) — Nieltge Gedney, a Shepherdstown resident, has been advocating for others her whole life, but when doctors told her she had less than a year to live, Gedney knew if she didn't advocate for health, she'd run the risk of being "treated" like everyone else.
Twenty-six million Americans suffer from kidney disease — that's one in 10 — and West Virginia has the highest per capita rate in the country of patients with kidney failure starting dialysis.
Gedney has been living with kidney disease since 1997, but it wasn't until 2007 she came face to face with a life altering decision.
"They said I needed to start dialysis or a transplant within a year, and I said well ... thanks very much, but I'm going to Ecuador," she said.
Gedney shocked family and doctors when she said no to dialysis and moved to Ecuador. Many said it was a death sentence, but Gedney said treatment looked even worse.
"I had seen dialysis clinics and it was like a sea of comatose bodies, so decided I was never ever going to do dialysis. I was fine. So I had plenty of time to make peace ... and I had decided to go peacefully," she said.
After spending a year abroad, Gedney's kidney disease had improved by 50 percent, a miracle she credits to the clean living in Ecuador.
"My health improved dramatically, because they don't have chemicals. Their water had no chemicals in it, it's untreated, processed right from the mountains. It's some of the purest water in the world," she said.
After moving back to Shepherdstown, Gedney did everything in her power to stay healthy, but said her deteriorating health was sadly the product of her environment.
"Environmental toxins in your food, in the water and in the air are some of the biggest contributors, because they can't be purified out of the kidneys. So they destroy it," she said.
Unlike those with healthy kidneys, Gedney said people that suffer from kidney disease are incapable of removing harmful phosphorus from the blood stream.
"One of things that triggered my kidney disease was the chemicals in the water here ... because phosphates aren't regulated in the water. They were absorbed through my skin and I was literally poisoning myself from the inside out," she said.
In 2014, Gedney spent three months on dialysis, in and out of treatment centers and it was then she decided if she wanted to "own her illness," she'd have to "own her treatment."
Later that summer, Gedney spent six weeks training on home dialysis, and now treats herself at home with The NxStage System One, a portable hemodialysis system for home use.
Jeff Burbank, founder and CEO of NxStage Medical, Inc., said the device was designed to give kidney sufferers ownership of their treatment.
"With the System One, patients are able to perform their therapy where they want and when they want — at home, while traveling, during the day or at night while sleeping," he said.
Gedney now advocates for home dialysis, and says her home treatment is akin to brushing her teeth. It's just another part of her daily routine.
"I call it the new normal. It's changed my life, but I don't let it impact it," she said.
In 2015, after receiving a chance email from Home Dialyzors United, Gedney became a board member, and found herself sitting in New Orleans at the Annual Dialysis conference weeks later.
Gedney has since become vice president of the nonprofit organization and said she strives to improve the quality of care for home dialysis patients everywhere.
"There's an FDA regulation that says home dialysis patients must be observed by a care partner and it has severely limited the number of people that can train at home ... people that live alone, younger people ... it's very discriminating," she said.
Gedney said that is a regulation she strives to change, because studies have shown people who dialyze at home have less infection, less medication and the death rate is lower.
"Not one dialysis patient is a one size fits all, and (doctors) are treating the disease, not the person. So I tell people, if you want to feel better, own your own treatment," she said.
Information from: The Journal, http://journal-news.net/
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