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...everything you need to know about doing dialysis at home.
The comforts of home, treatment times that fit her work schedule, getting lots of dialysis, feeling good. For all these reasons, Carol chose home hemodialysis. “It’s a totally different experience than in-center dialysis,” says Carol. “I would recommend it to anyone!”
Diagnosed with kidney disease at age 12, Carol (now 48) has faced the prospect of dialysis for a long time. “My doctors told me to learn everything I could about dialysis,” says Carol. “Once I did, I knew that I wanted to do my dialysis at home.”
When her second transplant failed in 1996, Carol started planning for home dialysis. First, she had to find a center that would accept and train a home patient. The closest one she could find was a 2-hour drive from her then-home in Omaha, Nebraska. So, Carol took time off from her job and spent 2 months commuting to Sioux City, Iowa, 3 days a week for training and dialysis treatments. “It was inconvenient,” admits Carol, “but now I will never have to take another day off of work because of dialysis.”
In the 12 years since she began home dialysis, Carol has been under the care of 4 different dialysis centers. She now resides in Los Angeles, CA and her current center is in nearby Glendale, CA—a center that offers NxStage, which fits her lifestyle best. (For her first 10+ years on home hemodialysis Carol utilized a Fresenius 2008H machine.)
“Doing your own dialysis is kind of scary when you start,” says Carol, “but once you’re trained, it’s easy.” To help herself remember all the steps during her first few months, Carol designed process flow charts and checklists as Carol analyzes and redesigns processes for a living. She also had home visits from a home health care nurse. Now, Carol is completely comfortable with the dialysis procedure. She feels able to handle any emergency, and has been in two California earthquakes during treatment without any problems.
For Carol, the benefits of home dialysis make all the effort worthwhile. She has her machine in a spare bedroom used just for dialysis. There is a dresser with divided drawers used for smaller supplies such as syringes and needles, with larger items placed in the closet. She has a cordless phone, a TV with VCR and DVD player, and a computer next to her dialysis machine that she can use during treatments. “I can talk on the phone, pay bills, watch TV or a movie, work, have friends over to visit, do whatever I want while I dialyze.” The room is decorated with lots of art and photos to make it cozy.
“I don’t use a dialysis chair; I have a bed with lots of pillows and blankets,” says Carol. “I can sit, lie down, and move around so my back doesn’t get stiff. I can set the room temperature just right, and I can order the masks I like and the gloves I like. It’s all set up just for me!”
Carol does her dialysis five times a week. Because she works full-time as a health care administrator for the Department of Veterans Affairs, she dialyzes in the evening. “Start to finish, it takes about 4 1/2 hours total for set-up, treatment, and clean-up.” A night owl, Carol doesn’t mind staying up late at night to do her dialysis as she usually works late and then comes home to have dialysis, relax, and watch favorite late night TV shows.
Having treatments five times a week gives Carol lots of dialysis each week. As a result, she feels good, and has no diet and fluid limits. “It makes my life more normal,” she says. She can go out to eat and loves to cook for friends at home, too. Cooking is one of her passions and as a community volunteer she has helped write and edit 3 award-winning cookbooks.
“I have been taking care of myself for 37 years,” Carol says, “and along the way I have made choices that made it possible for me to have a good life.” What choices? A good education. A desk job that is not physically strenuous and provides great health insurance and other benefits such as a flexible schedule. A dialysis modality that permits her to work full time, and even travel. With the NxStage machine, Carol travels frequently, just packing the machine and supplies in her car or taking it to the airport. The convenience of travel with dialysis, instead of going to a unit, provides freedom whether the travel is for business or pleasure. “The choices I’ve made let me be in charge of my life.”
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