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...everything you need to know about doing dialysis at home.
“I don’t want dialysis to control my life,” says Rick. “I’d rather control the dialysis.” The desire to be “in control” prompted Rick to start doing his dialysis at home in 1998—and it has motivated him to do what it takes to stay at home in spite of some obstacles over the years.
In late 1997, Rick was under the care of a nephrologist for chronic kidney disease, and was planning to get a transplant before he needed to start dialysis. Those plans went by the wayside when a blood clot caused his kidneys to suddenly shut down, and he needed to start dialysis right away.
Like so many patients who have to start dialysis in a crisis situation, he had a catheter placed in his neck and had his first treatments in the hospital. “It was overwhelming,” remembers Rick. “On the first day, so many people came by to tell me about different things: the diet, the treatments, and everything that was going to happen. At the end of the day, I just looked at my wife and said, ‘what were they all talking about?’”
Rick did remember one thing from that first day—someone said that dialysis could be done at home. Rick and his wife agreed to try home dialysis. For his first six months, however, Rick did his dialysis in-center on Monday, Wednesday, and Friday each week. During that time, he kept his job as a Customer Service Supervisor, and talked to his doctor about training for home dialysis. When the school year ended in June, and his wife had time off, they started the 6-week home hemodialysis training program.
Rick and his wife learned how to operate the hemodialysis machine, and how to put in the dialysis needles. They converted their grown son’s old bedroom into a “medical room,” and did dialysis treatments there 3 days each week. Then, they got some bad news about their water supply. “Somehow the well that supplied our whole neighborhood got contaminated,” reports Rick, “and the city black-flagged our water.” So, Rick decided to try another form of home dialysis—peritoneal dialysis (PD).
Rick trained to do peritoneal dialysis, and did his PD exchanges at home for several months. During that time, he did both manual and cycler-assisted exchanges so he could get enough dialysis and continue to work. “I’d do an exchange in the morning and go to work, then come home at lunch to do another exchange,” he says. In the evening, he’d do one more exchange and then use the cycler at night. Unfortunately, Rick developed a problem with his colon and had to have his PD catheter removed.
Once again, Rick had to make a change, and this time it was back to the clinic for in-center hemodialysis treatments. Not only did he not like the rigid scheduling of in-center treatments, he also had problems with his access at the clinic. “They infiltrated my graft often,” he reports, “and one time it was so bad that my access was completely clotted off.” That unfortunate episode convinced Rick to make 2 more changes: (1) to do all his own needlesticks, and (2) to return to home hemodialysis.
Fortunately, by this time, the city of Indianapolis had fixed his water problem and he was able to start home hemo again. He used a Baxter 1550 (an upgraded model of his old Baxter 550 machine), and followed a schedule of 3 treatments per week for several years.
In 2004, Rick heard about an Indiana University study of a new home dialysis machine. He decided to enroll and began training on the NxStage home dialysis equipment in April of that year. “They scheduled the training for 10 weeks,” recalls Rick, “but everyone knew how to set up the machine by the third day. It was pretty easy.”
Although the study has been over for months, Rick continues to use the NxStage machine at home. Now he does his dialysis 6 days a week, for about 2 hours each day. And, he likes the shorter, more frequent dialysis. “I think if you added up all the hours, it would be about equal to doing home hemodialysis 3 days a week, but I’m only in the chair a couple hours each day.” Rick also likes the fact that he can fit his 2-hour dialysis treatment into his schedule each day. “If we want to go out to dinner with friends,” he comments, “I might do my treatment in the morning or after I get home.” The shorter timeframe allows lots of flexibility. “We’ve got control back now,” he adds.
Rick also likes the fact that he feels so good with daily treatments. “I don’t think of myself as a sick person,” he claims, “because I just don’t feel sick.” The biggest thing he notices is the lack of swings in fluid levels. “Your weight is stable,” he points out, “and you don’t get that washed out feeling after a dialysis treatment.” Rick has found such a difference in fluid management on daily dialysis that he actually has to remind himself to drink more water! “Over the years I got so used to watching my fluids, and now they want me to drink,” he says. “Sometimes I have to drink a glass of water before I start my treatment!”
In the first week of daily treatments, Rick was able to stop all his blood pressure medicines. He also experiences few, if any, leg cramps as part of his treatments. Daily dialysis has also improved Rick’s appetite. In fact, his appetite is so good that he needs to take 6 phosphate binders instead of 4 with each meal.
“I’ve done every kind of dialysis there is,” he comments, “and none comes close to making me feel the way this one does. It’s pretty close to having a kidney.”
Since Rick has been doing daily home hemodialysis, he has taken several trips—and he likes being able to take his own machine with him. All you need to run the machine is electricity and the bags of dialysate. He can do his dialysis almost anywhere.
Over the Christmas holiday, Rick and his wife took a cruise—and it wasn’t a special dialysis cruise. “I called the cruise line’s special needs office and told them I would be doing hemodialysis. They didn’t believe I could do it myself,” he chuckles. “I had to get a letter from the machine manufacturer stating that the equipment was, indeed, portable. I also had to get a letter from my doctor saying that I was trained and wouldn’t need medical help,” he adds. “Once they got the proof, they were very helpful,” he explains. “My dialysate bags were delivered right to the ship and put in our room, and we brought the machine with us.” Rick and his wife did the daily treatments in their cabin after a full day’s activities.
Rick has also taken his machine on trips to visit relatives and friends. “One time I just did my dialysis in the game room,” he admits. “Everyone was watching a movie, eating popcorn and doing things that families do, and I was doing my dialysis. When the movie was over, I was done with my treatment.” The ease of travel now contrasts sharply with Rick’s previous travel experiences.
“When I traveled on conventional hemodialysis, I had to call ahead and schedule a treatment time in a center. They always give you a time in the middle of the day. And, then you’re so tired after your treatment that you don’t feel like doing anything. So, you lose 3 days of your vacation,” he remembers. Now, he can fit his treatments into his vacation plans.
For Rick, home dialysis is the way to go. “I didn’t like someone telling me when I had to be someplace—with no choice about it,” he recalls. “I like to be in charge of the situation, and now I am.” His flexible schedule has enabled him to return to part-time work in merchandising and marketing, and he plans to stay active.
“Nobody wants to have kidney failure,” admits Rick, “including me, but I decided several years ago that I could handle this thing two ways. I could feel sorry for myself, or I could be the best patient I can be. I decided to be the best patient…and that’s what I’m trying to be.”
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