Choosing Home Dialysis Proves Tricky

Choosing Home Dialysis Proves Tricky
By SYDNEY LUPKIN
Sept. 20, 2012—
abcnews.go.com
Home Dialysis Health Stats Not Tracked Nationwide

Vanessa Evans spent 10 years driving to and from a dialysis clinic three days a week to spend four hours in a chair, hooked up to a machine that hummed as it cleaned her body of toxic fluids to keep her alive.

She's one of more than 398,000 Americans who depend on dialysis to survive, according to the United States Renal Data System's 2010 figures, which came out this morning. Of those, only about 35,000 do dialysis at home, and just 5,500 of them do home hemodialyisis -- the treatment Evans decided to do in which she sticks two needles into her arm and connects herself to a machine that filters wastes, salts and other fluid from her blood because her kidneys can no longer do the job.

Making the Switch

When Evans, a part-time high school teacher, and her husband decided to have a baby through a surrogate, they decided enough was enough. Although Evans's doctor never told her about home dialysis in the hours he spent with her for more than a decade, she conducted months of internet research to find a center that had what she was looking for.

Evans, now 40, has two boys and says her NxStage home hemodialysis machine allows her to be a mom because she can do shorter treatments whenever she likes. Six years have passed, and she now uses the time she's dialyzing to read to her sons, watch movies with them or just talk.

"From a lifestyle standpoint, it's better," said Dr. Deidra Crews, a nephrologist and professor at Johns Hopkins University School of Medicine. "A lot of patients say home hemodialysis gives them more options."

Evans does two-hour treatments for five days a week and says her health has improved. Beyond simply feeling better, she no longer needs to take pills to regulate her blood pressure, which most dialysis patients need to do because high blood pressure is often linked to kidney failure.

The move to home dialysis wasn't easy, she said. More than 30 percent of dialysis patients reported that they weren't presented with all dialysis options, such as in-center hemodialysis, home hemodialysis or peritoneal dialysis (another home dialyisis that uses blood vessels in the abdominal lining), "equally or fairly," an American Association of Kidney Patients Survey revealed last year. Almost 70 percent said their doctors never mentioned home hemodialyisis.

"I was still scared to switch over," she said, thinking back to before her sons were born.

Instead of having a nurse stick two needles into her arm in the center, she had to learn how to do it herself and prepare for any alarms that might go off on the machine. But she's anchored to a center in Beverly, Mass., where she was trained, and she sees a nephrologist monthly and calls if her machine tells her anything is wrong.

Choosing a Center: What do the stats tell us?

But as ProPublica revealed two years ago with its investigation of centers with poor conditions and high mortality rates, not all dialysis facilities are equal.

Evans's old center, which didn't offer home treatment, had a 24 percent mortality rate, and her new one had a 25 percent mortality rate, according to ProPublica's Dialysis Facility Tracker, which uses mortality data collected by the Centers for Medicare and Medicaid (CMS) for 2007 through 2010. CMS has paid for dialysis treatments since a 1972 change to the Social Security Act made it available to anyone that needed it.

Could it mean that the home patients are dragging her new center's health statistics down that one percentage point?

An ABC News analysis of the nationwide facility data revealed that centers with home dialysis had lower first-year mortality rates per 100 patients on average than those that didn't. Unfortunately, although home patients are included in the mortality data, it's not clear how many of each center's patients are on treatments because CMS doesn't keep track, making the analysis virtually useless.

CMS doesn't tease out how patients on home dialysis fare compared to those who visit centers for treatment. A report on the subject is due out in January of next year.

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

When Sheryl Adkinson 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," Adkinson 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, Adkinson 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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