Choosing Home Dialysis Proves Tricky

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Out of more than 5,700 dialysis centers nationwide, about 1,400 provide home hemodialysis training.

When Sheryl Adkisson was 21 years old and her body rejected her first kidney transplant, she was shocked. Sixteen years and two kidneys later, she began seeing blood in her urine again and knew dialysis would have to become a permanent, time-consuming part of her life.

She was chained to a dialysis center for 16 years, forcing her to work only part-time as a labor and delivery nurse and sexual assault nurse examiner, her dream job.

"Being in the center, I'd say probably during all my times of dialysis and transplant that that was probably the roughest," Adkisson said.

But as a nurse, she didn't have a hard time learning how to do home hemodialysis. In fact, her nephrologist invited her to be the first to train on the then new home hemodialysis system.

"Before I wasn't as at ease," she said of the early days of home treatment. "Now, it's definitely like brushing my teeth."

Four years later, Adkisson says she's "completely accepting" of her dialysis, and often works 12-hour days as a nurse, using the time she's dialyzing to make calls for work.

Though she's at ease now, she said just about every alarm that the machine has to offer has gone off in the last four years, and she doesn't always know what to do.

Having a good anchor center can be crucial.

Although home hemodialysis has been available since 1980, according to a United States Renal Data System Annual Report, its patients are only included in three of the CMS database's more than 20 health benchmarks, making it difficult for prospective home treatment patients to chose an anchor center, which they need for training, monthly check-ups with a nephrologist, and emergencies.

"The measures are intended to distinguish facility performances, not assess differences at the patient level," Medicare spokesman Donald McLeod explained to ABCNews.com.

Dori Schatell, the executive director of Home Dialysis Central, a nonprofit created by the Medical Education Institute, said her organization's website (which features Dorothy and Toto because "There's no place like home") now includes a home dialysis look-up for the various home dialysis options, but there's no survival or infection data.

Why Doesn't Everyone Choose Home Treatment?

The lack of Medicare or nonprofit data on the success of home hemodialysis treatment could be because it is still not particularly popular nationwide. According to the USRDS report, only .6 percent of patients used it in 2010.

Dr. Tejas Desai, a nephrologist and professor at East Carolina University, said less than 10 percent of his patients choose home options, including peritoneal dialysis and nocturnal dialysis (yet another dialysis option that involves being hooked up to a machine at night).

"There are a lot of people who don't want the headache of doing this on their own," he said. "The patient has to be motivated, and has to have a partner that's motivated."

In North Carolina, many of his patients can't do dialysis at home because they don't have reliable electricity or plumbing, which is needed to make the machine run properly. Since renal failure is often caused by diabetes, which leads to eye disease, many patients also can't see well enough to stick themselves with the dialysis needles, he said.

Schatell said the numbers for home dialysis treatments overall – including but not limited to home hemodialysis -- are slowly rising. Instead of 6.75 percent of dialysis patients using all home options overall in 2009, the number has risen to 7.4 percent in 2010. Like most health data, it's two years behind, so it's possible those numbers have risen even more, she said.

"Dialysis is sort of like a really like a big ship," Schatell said. "It takes a lot of communication to change it, and we're changing it."

Therapy's Given Me A Lot of My Life Back

Although Evans's dialysis is "just part of life" to her two sons, she had to bring them to her dialysis facility for her check-up Tuesday because they didn't have school.

They had never seen a dialysis facility or the big machines before, so she explained that this is what Mommy used to have to do.

"They were like, 'Thank god for the machine at home, I like that one much better,'" she said.

Evans said home dialysis has given her the time to be a mom, a wife and a friend. "This new therapy has given me a lot of my life back."

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