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“I knew I was at risk,” begins Amy, “because my father and grandmother and many aunts and uncles had PKD (polycystic kidney disease).” Amy remembers watching while her dad did his dialysis treatments at home “back in the day before there were dialysis centers” and do-it-yourself dialysis was the only treatment option. “I would sit and watch my father and we’d talk,” recalls Amy. “Those are times I cherish.”
Amy was diagnosed with PKD at age 21, and so for years, Amy was mentally preparing herself for dialysis by doing research and talking to other patients online. Even so, things took her by surprise. Here’s what happened.
“My kidney function was around 23% and I thought it would be several years before I needed dialysis, hoping I would never need it. Then I had an abscessed tooth pulled—without antibiotics. And, I never did recover. My urine output had dramatically dropped, so I went in to be checked. The results of a 24-hour urine test showed that my kidney function had fallen to less than 10% in just 3 weeks. I needed to start dialysis right away.”
Because Amy had watched her dad, she wasn’t too nervous about dialysis itself, but was terrified of the needles. “My dad used a shunt, but they don’t do that anymore,” she explains, and her doctor wanted her to have a fistula. Amy remembers thinking to herself, “I can’t do this, not with needles.”
Amy started dialysis with a catheter in April 2002, just the day after she turned 44. She also had a fistula created in her arm. Her first fistula failed right away, so she had another created in her upper arm. Since it was found to be too deep to adequately access, she continued to use a catheter.
Because Amy lives, as she says, “out in the boonies,” she would drive the 60-mile round trip three days a week to her dialysis center for treatment. But, she didn’t like her experiences at the clinic. “I found my clinic was one of the better ones, but I always came home worn out and too tired to do much of anything.” To cut down on time and travel, and to get more control of her schedule, Amy was determined to try home dialysis. She had a problem, however: the catheter. She could not find a doctor who would support her on home hemodialysis using a catheter.
Amy began calling dialysis centers all across Missouri, some even in Kansas and Nebraska, looking for a home program that would train her with a catheter. Then, she remembered seeing a TV news segment about a nephrologist who had a growing home program in Kansas City. She called for an appointment and went to see Dr. Bender and his team at the DCI Clinic in Kansas City. “We drove to Kansas City and talked to them for an hour or more,” says Amy, “and we set up a time to start training for home hemodialysis. I was ecstatic.”
The process to get started was lengthy, though. While she saw Dr. Bender and his team in September, there was the initial home visit by the nurses and social worker, and all the paperwork. Amy didn’t start training until November 2, 2002. Three days a week, she and her husband drove 110 miles each way to the clinic for their training and dialysis sessions. “We were told to plan on minimum of 12 weeks of training,” recalls Amy, “but by week 5 we were ready to go home.” She and her husband had the water treatment system installed in their house, had Amy’s new dialysis machine (a Fresenius 2008H) delivered and calibrated, and started doing dialysis in the comfort of their own home just days before Christmas that same year.
Even though Amy was successfully using a catheter, she and her doctor still wanted her to convert to a fistula.1 So, Amy tried again. She had a transposition surgery in early January 2003 to bring a deep vein closer to the surface. Three months later, once the fistula was maturing, Amy began to work on establishing buttonholes.2 She and her husband once again traveled back and forth to her support clinic three days a week to have staff guide her in creating buttonholes.
Once the buttonholes were established and Amy was in a good treatment routine, she opted for yet another change: Amy wanted to try nocturnal hemodialysis. “My dad was doing nocturnal in 1968-70,” said Amy, “and he felt pretty good—and that was before EPO!” Amy had also heard from other patients how good they felt on nocturnal dialysis. If that wasn’t enough, Amy also knew that doing her treatments at night would leave her days free for kids, family and work. At the time, Amy and her husband were home schooling three of their five children.
Amy began nocturnal home hemo the first week of July 2003. “It was amazing,” she reports. “My creatinine went from 9 to 3. I quit taking my binders and my phosphorus went from 6 to 1.2 with just one week of nocturnal treatments. They actually talked of adding phosphorus to my dialysate!” Amy also laughs about the fact that her renal dietitian encouraged Amy to eat more dairy and potassium-rich foods.
“The change was a real shock to me in many ways,” adds Amy, “because you get used to feeling a certain way, a certain level of ‘blah,’ and thinking it is okay and normal, not realizing you can feel better.” She found, instead, that with her nocturnal treatments, she had newfound energy, mental clarity and vigor to do many more things she’d simply written off as undoable. She even found work at Wal-Mart, where she works part-time.
To fit all her activities into the day, Amy has settled on a unique schedule—but one that works for her. Four to six nights per week, Amy’s husband, Jeff, helps her hook up to the dialysis machine around 8-9PM. Although she used to sleep right through the night with her dialysis, she has had some problems with the machine, pressures, and sensitivity to the dialyzer itself and now finds herself awake most nights. So, she watches TV, movies, plays games, or reads until about 4-5 AM. Then, she ends her treatment and climbs into bed for 4-5 hours. When she awakens around 9 AM, she’s ready to head off to work, do chores around their small farm, or tackle housework. “If I get really tired, I might take an extra night off,” she admits, “to get some solid sleep time.”
Amy is proud that she was able to overcome her fear of needles to do home dialysis. “The fear is usually much worse than the actual event anyway,” she claims. She had heard the quotation “feel the fear and do it anyway.” “I just went headlong into using the needles without any numbing agent, just cold turkey. It wasn’t nearly as bad as the fear I was harboring.” Unfortunately, Amy is now back to a catheter. Her buttonhole sites worked for about a year. After multiple angioplasties to open up the repeated narrowing in her fistula, she was given a graft. She then acquired a serious blood infection that put her in the hospital for 5 weeks, and the graft was removed. After two more attempts with fistulas that failed she has exhausted her fistula and graft possibilities, and relies on the catheter for permanent access to treatments.
“For me, home dialysis has been a great choice,” says Amy. She likes the fact that she has more freedom in her treatments and more control, especially if the weather gets bad.
Amy is comforted by the fact that her support clinic and nurses are just a phone call away. “The nurses who trained us were by far the most superior professionals I’ve met, truly dedicated to the patient being in control, the patient calling the shots. With staff changes only one of the original nurses of the program remains. If we have a problem, they are there to walk us through any difficulties,” she notes. “If it is something that cannot be resolved, we have the flexibility to just disconnect and handle it in the morning. Getting more hours of dialysis gives us the ability to disconnect early without any real adverse circumstances. With conventional dialysis, you don’t have that luxury.”
She also believes that getting 32-48 hours of dialysis each week instead of 12 is the reason she feels so good. “Sure, I have my down days, but that’s no different than anyone “not” on dialysis. I would recommend it to anyone willing to give it a hearty try. The work is so worth the rewards.”
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