Miriam Blum of Tuscon, Ariz., should have died in 2001. Or at least that's what doctors told her before she started home hemodialysis.
For many, at-home treatment has provided a new lease on life. But it's used by less than 10 percent of dialysis patients, according to the U.S. Renal Data System (USRDS), which collects and distributes data about end-stage renal disease in the United States.
At-home hemodialysis is used by less than 1 percent of dialysis patients, according to the USRDS's 2008 year-end study. But the mortality rate for that 1 percent is almost 20 percent lower than that of in-center patients. Though this difference may be due in part to the fact that patients who use at-home hemodialysis are usually younger and healthier than their in-center counterparts, past research has suggested that even when taking these factors into account, these patients still have lower mortality rates.
Blum, now 48, was diagnosed with Type I diabetes at 10. Because she was afflicted so young, complications were likely and did occur; her right leg is amputated below the knee. As a result, she's been on hemodialysis for the past 15 years.
"There are two types of dialysis," says Dr. Jonathan Lorch, medical director at The Rogosin Institute Manhattan Dialysis Center, "peritoneal, where the blood is filtered through the peritoneum, which is a membrane in the abdominal cavity, and hemodialysis, where blood is filtered through a machine."
Peritoneal dialysis can be done alone and doesn't necessarily require a partner, but it's still not for everyone. It creates the opportunity for peritonitis, an infection at the site of dialysis where fluids are pumped into the stomach, and increases the chances of hernia.
"I was on peritoneal dialysis for six years. I worked full time, and my husband and I traveled," said Blum. But complications again ensued. Heart complications are common in diabetes patients on dialysis; Blum suffered a major heart attack in 2001, and has had three open-heart surgeries. She was forced into hemodialysis, beginning with "in-center" treatment.
In-home treatment allows for more frequent sessions, which replicates healthy kidneys better than a three-times-a-week in-center schedule. While healthy kidneys work 24/7, dialysis patients have to rely on their treatment to rid their bodies of toxins all at once. In turn, longer times between sessions mean more toxin buildup.
"I never felt good when I was doing 'in-center' treatment," says Blum. "I couldn't travel. Arranging to go to other centers was tough. Organizing my own holidays was difficult because the center's schedule wasn't flexible."
But at-home treatment gave Blum more flexibility in her life -- and better health. "I dialyze six days a week and it's still time consuming, but I can organize my own time and switch a day if I want to."
Rich Berkowitz, 62, freed up even more of his time by switching to nocturnal hemodialysis in 2008. Though many fear some sort of complication with at-home dialysis, Berkowitz says he has had no such problem.
"I've found that with self-care people they learn more about their disease. They're definitely more active in their own care. It's like they become better consumers," says Berkowitz, who started at-home hemodialysis in 2006.
Like Blum, Berkowitz uses a relatively small dialysis machine called NxStage, which weighs about 75 pounds and has all the functionality of an in-center system. However, it's still not widely used.
There are those who simply want to keep their medical matters out of the house. Blum says that though she could do nocturnal hemodialysis if she wanted to, she does her treatment in the evenings because she doesn't want to bring her medical matters into her and her husband's bedroom.
But the use of at-home machines is largely limited, despite being covered by Medicare and health-care programs, because of personal fears. Some go as far as to think they could "bleed out" in their sleep if they were on nocturnal dialysis.
"There's not enough education," says Berkowitz. "People don't think they can do it."
Lorch, who also runs the at-home nocturnal dialysis program at the Rogosin Center, says it's an entirely safe way to undergo dialysis.
"New York State requires electronic monitoring, so if something goes wrong, there's someone watching. We give it about a two-minute period, and if the alarm hasn't shut off by then, we call them," says Lorch. "If they don't respond we call again shortly after, and if they still don't respond, we call 911. The problem is there's really no incentive for people to do it."
Lorch also believes that physicians are hesitant to suggest at-home treatments because they don't want to lose their patients. In-center dialysis clinics might also have similar motivations, despite the tremendous improvement that has been seen in at-home hemodialysis patients.
Patients who switch to at-home hemodialysis have even reported better general health as a result.
Bill Peckham, 45, of Seattle, says that home dialysis has given him more energy and a clear mentality.
Since starting home dialysis in 2001, Peckham hasn't been hospitalized once, something that occurred relatively frequently while he was on in-center treatment.
"I've been able to cut down on medications," Peckham says. "It's given me more energy and even gotten my blood pressure under control. It's been a dramatic improvement."
He added, "With in-center treatment, you forget what feeling good feels like."