Patient stories: Judy
Judy, 56, learned about home dialysis from Internet research she did while she had a kidney transplant. "The Home Dialysis Central site was one I'd visit, because I liked reading about people on home dialysis," explains Judy. Four years ago, Judy's research came full circle—she started home dialysis, and couldn't be happier about it. "If I didn't do home dialysis, I probably wouldn't be alive," she reports. "Home dialysis has given me a sense of self-control and mastery of my life."
Early symptoms
In the late 80s, Judy led a busy life as a wife and mother of two, and worked full-time at a stressful job. "There were a lot of stressors in my life at that time, and then I lost my job," recalls Judy. "I started having back and lower abdominal pain. I assumed it was a 'female' problem and went to my gynecologist. He couldn't find anything wrong, though no urine samples were ever taken."
Then Judy started to feel depressed and generally wasn't feeling well. She went to a family doctor who prescribed antidepressants and ran a series of tests. "The test results showed blood in my urine and I was told to come back in 6 months," explains Judy.
In 1992, after two years of back-and-forth doctor visits and tests, Judy was sent to a nephrologist. Judy remembers, "With his back turned to me, the nephrologist said, 'How long have you known you have had kidney disease.' Of course I didn't know I had kidney disease! He said I'd be on dialysis within three years." (Judy had a kidney biopsy done to determine the cause of her kidney disease; results were inconclusive, though FSGS is suspected.)
In 1996, Judy started in-center hemodialysis. "I couldn't do PD because of previous abdominal surgeries and I didn't know about any other type of dialysis back then," says Judy. She remained on in-center hemodialysis for 19 months, until a kidney transplant became available.
Expanded donor transplant
At the time, transplant centers were experimenting with the idea of expanded donors—donors who don't quite fit the "ideal" donor profile due to factors like older age or health issues. "My transplant center called with two kidneys from a 70-year-old woman who was a 6-antigen match—as good as it gets!" says Judy. "In the long-run, the bilateral transplant was a bad decision for a variety of reasons. The donor was older and died from a stroke, and the kidneys had to be flown cross-country—all factors that could lessen the function of the kidney."
The transplanted kidneys worked right away, but Judy was greatly affected by the anti-rejection medications. "I was on a pretty high dose and they are nasty drugs," explains Judy. "It made life difficult—I had mood swings, weight gain, and because my immune system was being suppressed, I had a lot of colds, infections, as well as several cancerous skin lesions. I was really at the mercy of the drugs." After more than six years, Judy's transplant failed.
Starting home hemodialysis
"This time, I knew I wanted to do home dialysis and told my doctor. He agreed, but first I had to commit to some post-transplant adjustment time," remembers Judy. "It took one year to get everything in place mentally and physically, and then I started training with Baby K—a large, complicated, and stressful machine."
Judy found the staff to be supportive of all her requests and needs. One dialysis nurse, Gina, was especially helpful. "I told Gina about the Buttonhole technique. No one had heard of it but Gina researched it and started an arterial and venus Buttonhole," Judy recalls. "If not for all these people I would not have a very good life and I have that because of them. DaVita has never said no to me about anything—their philosophy is open to what the patient needs." In fact, while Judy was training on Baby K, the Regional Director of DaVita came to see how Judy was doing. "She asked me if there was anything she could do for me and I said, 'Yes, can you get me the NxStage machine?'"
In the Fall of 2005, Judy started home dialysis with the NxStage System One, five days a week for two-and-a-half hours. "I work in a real estate office Monday through Thursday in the mornings—just enough to keep busy," says Judy. "When I get home, I do housework, get dinner ready, get the machine ready, and when my husband comes home I hook up to the machine and we eat dinner and watch television or chat."
Benefits and challenges
Overall, Judy loves home dialysis, saying, "Home dialysis grants me more freedom than I ever had in-center—I can dialyze any time I want, more frequently, and I don't have to depend on the center to schedule me if I want to travel." Judy's health is better, too. "My lab values are really good and I don't even think about potassium or phosphorus. I feel better now than when I had a transplant!" she reports. "Because I have better, more frequent dialysis I feel I can live a healthier and longer life."
Home dialysis allows Judy and her husband Ray to enjoy an active lifestyle, full of traveling. However, she does hope to do extended treatments as soon as the FDA approves the machine for longer overnight treatments. "I think my husband sometimes feels a bit restricted with the home dialysis, especially in the summer when he'd like to ride his motorcycle," shares Judy. "The extended treatments would give him more freedom during the day and early evenings. Ray is my rock and his kindness and devotion is extraordinary. I'm filled with gratitude that he is on this journey with me."