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...everything you need to know about doing dialysis at home.
It’s been 30 years since Dwain had his first dialysis treatment—and it was one of the few treatments he did not do himself. For most of his 30 years on dialysis, Dwain has been doing his dialysis at home. These days home dialysis is a lot easier than it was back in 1975, but even then it was Dwain’s first choice.
Dialysis—of any kind—was not available to all people with kidney failure in 1975. Dwain was one of the lucky few who were approved by the hospital’s medical committee to qualify for the life-saving treatment when his kidneys failed as a result of a birth defect in his bladder. “I had two young children and a working farm,” remembers Dwain, “and I got in just under the wire.”
For the first 3 months, Dwain got his dialysis treatments in the hospital, like most other patients. “We were in beds—there were no dialysis chairs—and they fed us our meals while we were on,” recalls Dwain. “They’d even bring you an orange and peel it for you,” he says.
But Dwain had a dialysis nurse who encouraged him to reclaim his independence. “She told me that I had to choose between living to dialyze and dialyzing to live.” Dwain made his choice: to live a full, normal life with dialysis. “She helped me adjust my attitude about dialysis,” Dwain explains. Just one month after he started dialysis, he started training to do his treatments at home.
“My wife and I trained together for 2 months,” Dwain reports. “Back then, we had to train for dialysis, re-use, and machine maintenance. There were no technical people to help.” His first machine wasn’t too dependable, and had separate pumps for blood, heparin, and dialysate. “We had bloodlines everywhere!” he laughs.
There was no ultrafiltration adjustment either. “Every run ended in cramping and a kind of shock,” remembers Dwain. “The measurement for fluid removal was really crude; when you passed out, you were dry.”
Dwain’s original dialysis prescription called for 3 treatments per week, but he dialyzed every other day. “I never took a weekend,” he asserts, “because I didn’t like the shock of Mondays after 2 days without dialysis.” So, Dwain dialyzed for 6 hours at a time, every other day. Set-up took about an hour; tear down took about 2 hours. “It was really quite difficult,” recalls Dwain, “but I did well and stayed healthy.” The time and effort involved, however, meant that Dwain had to let go of his hog-farming operation.
In 1980, Dwain and Marilyn decided it was time to leave their Michigan farm. “We just couldn’t afford to live on the land if we weren’t farming,” he admits. So, Dwain got a new dialysis machine—a Redi machine—that would run on tap water. They packed up their new baby, the kids, and the new dialysis machine and got in the car to check out other states. First they went to Florida, but they didn’t think they’d like living there. They went back to Michigan. En route, they dialyzed in motels. After a brief rest at home in Michigan, they tried New Mexico, but that didn’t suit them either. Once again, they headed home to Michigan. On the way, they made the decision to settle on a small “farmette” they found in Mountain Grove, Missouri.
They returned to Michigan one last time to sell their farm. And, sell they did. They sold all their furniture, farm equipment, everything—except the farm itself. “It took a little longer to find a buyer,” recounts Dwain, “so we camped in an empty house for 6 months and I did my dialysis in a lawn chair.” When the farm did sell in 1981, Dwain and Marilyn bought a travel trailer and headed for Missouri.
Unfortunately, the tap water Dwain used for dialysis with the Redi machine exposed him to high levels of aluminum, and he developed serious complications. Aluminum accumulation in his brain caused mental symptoms that Dwain likens to Alzheimer’s disease. “I lost all my short term memory and was really confused,” he says. And his bones developed painful cracks that put him in a wheelchair.
Today these signs and symptoms of aluminum-related illness are well-known, but in the early 1980’s the condition was rare. Few nephrologists had the experience to recognize and treat aluminum-related conditions. Luckily, Dwain found an Australian nephrologist who knew what to do: the doctor prescribed deferoxamine (DFO) therapy to remove the aluminum from Dwain’s blood. “I had to stop using the tap water dialysis machine and go back to a regular dialysis center,” Dwain recalls. “Three times a week, I drove to Springfield, Missouri. In the dialysis center, I had 4 hours of dialysis, and then 4 more hours for the IV drip of DFO to take out the aluminum.”
Dwain realized that he would not be able to keep up a schedule that required 8 hours of treatment 3 times a week, so he began looking for alternatives. What he found was a new nephrologist with experience in continuous ambulatory peritoneal dialysis (CAPD). Dwain had a PD catheter put in and went back to home treatments. “It took 6 more weeks to remove enough aluminum that I could walk again,” he relates. After that, he continued doing CAPD for 5 more years.
A serious illness sent Dwain back to in-center hemodialysis at a unit in Columbia, Missouri. Once he was stabilized, however, Dwain wanted to get back home. This time, his doctors prescribed a Baxter home hemodialysis machine. “Everything went great for me,” reports Dwain, “and I used that machine for years.”
Once again, Dwain got the urge to move. “I asked about putting my dialysis machine into a travel trailer,” he says, “and the techs in my unit put a water purifier and a dialysis machine into a trailer so I could take a trip.” Once they were ready, Dwain and Marilyn hit the road and ended up in Arkansas. “We liked it,” advises Dwain, “and decided to stay.” If he had a problem with his dialysis machine, the techs from Columbia would travel—about 400 miles—to take care of it.
After a few years, Dwain moved back to Missouri, but he and Marilyn are thinking about moving yet again. “We’ve been back in Missouri since 1998,” says Dwain, “and I’m getting restless!”
Right now, Dwain does dialysis for 2 hours every day except Sunday. With modern equipment (a Fresenius 2008)—and lots of practice—he and Marilyn have the set-up time down to about 1/2 hour. Tear-down takes only 3-4 minutes, because the machine rinses automatically.
Dwain dialyzes in the late afternoon or early evening, and times his treatments to go along with his evening meal. “I make a big production out of my dinner,” he says, “with 4-5 courses.” Because he takes his time eating, he’s through with dialysis at about the same time that he’s done with his meal.
Marilyn helps Dwain with dialysis and does all his needle sticks. “Even when I go to the unit for dialysis, she puts the needles in,” says Dwain. The rest of the treatment is all Dwain’s, however. “I take responsibility for all the settings and adjustments,” he explains, “dialysis is my job and Marilyn follows my orders so she doesn’t have to worry about making a mistake.”
Dwain is proud of the fact that he has never let dialysis dominate his life. “Dialysis is not the decisive factor in what we do,” he comments, “we make our choices and then we fit the dialysis in.”
“If you’re going to dialyze,” advises Dwain, “home is the way to go.” Dwain believes that attitude and self-discipline are the keys to success with home dialysis. “You do have to be disciplined,” he notes, “you cannot skip your treatments or cut the time. If you’re at home, no one will know—but you will pay for it later.”
Neither he nor Marilyn had any medical training before they started doing home dialysis, but they did have the attitude that they could adjust to any adversity if they put their minds to it. “I’ve had kidney disease all my life,” said Dwain, “and I grew up learning that I could do anything, it just takes me longer.”
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