Oct. 4, 2012 at 6:21 PM ET
When Denise Atkinson and her husband Mike wanted to take a cruise to the Bahamas last January, they knew they could only do it if Cindy came along. But that wasn’t a major problem – after all, Cindy fits nicely into a small roll-along.
“Cindy” is Denise Atkinson’s home dialysis machine. Thanks to her, Atkinson, a 54-year-old polycystic kidney disease patient, has never had to undergo dialysis at a clinic.
“You may have to take a few more things with you than theaverage traveler but it is easy to plan a vacation,” says Atkinson, who works fulltime as an administrative assistant at the University of Maryland Baltimore County.
“You don’t have to cart supplies, needles, gauze, bandages, water. The company helps you with that. They will ship your supplies to you so it will be there in your hotel when you get there and you just take your machine,” she says. “That way you don’t feel like your life is over.”
Dialysis keeps hundreds of thousands of kidney patients alive. According to Home Dialysis Central, more than 400,000 Americans need dialysis, but just over 1 percent of them use home hemodialysis.
Dialysis can be gruelling. One catheter takes the blood out, circulating it through a filter, and another returns it to the body.
“You feel like you are drained, like you are having all your air taken away and it takes about five hours to bounce back,” says 31-year-old Brian Hess, an Oklahoma lab courier who has switched from clinic to home dialysis. The process can take three to four hours, three times a week, not including commute time. It cuts into a patient’s ability to work, let alone to enjoy life.
Many need a whole day off in between dialysis treatments to recover.
Home dialysis, in contrast, can be done more often in shorter bursts, cutting less into a patient’s time and making for a less-exhausting regimen.
"There is virtually no other disease that requires patients to make such considerable changes in their lifestyle as a diagnosis of end-stage renal disease and the need for dialysis therapy does," said Dr. Rajnish Mehrotra of the University of Washington, Seattle. "To ease the challenge associated with such a diagnosis, offering patients choice allows them to select a dialysis therapy that best fits into their lifestyle and their expectations."
Writing in the Clinical Journal of the American Society of Nephrology, Mehrotra and colleagues said there were enough easy-to-use products now to make home hemodialysis a viable option.
Right now, fewer than 2 percent of U.S. dialysis patients use home hemodialysis, the researchers said. It takes weeks of training, nursing education, and a relationship with a specialist home dialysis center to pull it off. Patients need a home helper, and they need a doctor who supports the choice.
"Home hemodialysis has been successfully used by thousands of patients and should be available to everyone on or initiating dialysis,” said Dr. Bessie Young of the University of Washington, who worked on the study.
This could be a big change in kidney treatment in the United States, where doctors, patients and insurers are all used to the standard regime of visiting a stand-alone dialysis clinic. But the home option is cheaper and evidence is beginning to suggest that patients who can stick to the regime are healthier, the researchers said.
Atkinson has known for years that she had polycystic kidney disease, a condition in which benign growths interfere with kidney function. Patients can keep kidney failure at bay with careful low-salt, low-protein diets that take the pressure off their kidneys, but kidney function often fails despite their best efforts. Atkinson knew this and saw a kidney specialist called a nephrologist regularly.
She was in her 40s when she realized she was in trouble. “My husband loves Home Depot. Eventually, I couldn’t walk the store with him. I had to wait in the garden section, where there was a chair or a bench,” she said.
She despaired at the idea of having to carve out time three or four times a week to spend half a day or more doing dialysis. “I am 54 and I still need to work,” she said. “We wanted to do things. We had grandchildren. I wanted to help with their lives. I am not ready to stop working.”
There is an option for home dialysis that’s been around for years called peritoneal dialysis. Patients fill their abdomens with special fluid and let it soak up the toxins. About 7 percent of dialysis patients use this approach. But it can cause water retention and other problems. Atkinson wasn’t keen. Her doctor suggested home hemodialysis – using a small, portable machine to filter the blood.
Because patients can do home hemodialysis most days a week, the process is less stressful, both for the patients and for their bodies. Atkinson does hers five days a week.
“You just carve out three hours to do it,” Atkinson said. “There is not a lot of down time. People who go to a center may be sick afterwards and may want to go home and go to sleep. I am fine after about 20-30 minutes.”
Both Atkinson and her husband went through weeks of training to make sure they could use the equipment safely. The needle that takes her blood in and out must be kept sterile and her skin must be clean. The blood comes out under a great deal of pressure and she could bleed badly if the needle were not secure. Blood pressure can fluctuate and patients must be watched while dialyzing to ensure they don’t faint.
It worked for Atkinson. “Two or three weeks after I started dialysis, I could walk the store with my husband again,” she said. A combination of employer-provided health insurance and disability insurance pays for it all. Done right, there is usually a lower risk of infection, as only one patient is using the equipment. Atkinson and Hess both say they've never had an infection.
Atkinson usually starts dialysis after dinner. She can settle down in front of the television, talk on the phone, or read. “I get out of a lot of chores because I have to do it,” she said, laughing. “My husband has picked up a lot of the chores. My son does the laundry. He washes the dishes at night.”
Her husband takes a baby monitor if he leaves to room to make sure she is all right.
Husband Mike and son Mikey,28, also lift the heavy boxes of supplies Atkinson needs.
“My machine, I gave it a name. Her name is Cindy. Every day Cindy gets primed by my son,” Atkinson said.
Two needles go into her arm. “Yes, it hurts,” she admits. “In the beginning, when I was new, it was just the grossest thing ever. But now you create something called a buttonhole, which is similar to a pierced ear. You go into that one hole. I wouldn’t say it is the most comfortable thing to do but you get over it.”
Hess, who started home hemodialysis in February, would never go back to the old technology. When peritoneal dialysis stopped working for him, he was reluctant to start going to a dialysis center.
“I didn’t want to give up treatment at home,” said Hess, whose parents help him during his treatments four times a week. Hess, who developed a type of kidney disease called nephrotic syndrome when he was 6, has needed dialysis since he was 12. Home dialysis allows him not only to work, but to volunteer with the American Association of Kidney Patients.
Both Hess and Atkinson stress that home dialysis is not necessarily the easy option. “It requires a strong commitment by the patient and their caregivers,” Atkinson said. “Everything revolves around when I am going to do my treatment. Also, there are days when I get home from work and hate the fact that I have to dialyze, but I still have to. I want to give credit for my success to my husband and son. I get though this because of their loving support.”