Judy, 56, learned about home dialysis from online research she did while she had a kidney transplant. "Home Dialysis Central was one site I'd visit, because I liked reading about people on home treatment," explains Judy. A few years ago, Judy's research came full circle. She started at home herself, and couldn't be happier about it. "If I hadn't gone home, I probably wouldn't be alive," she asserts. "Home treatment has given me a sense of self-control and mastery of my life."

Early symptoms

In the late 1980s, 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. Then I lost my job," she relates. "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 just didn't feel well. She went to a family doctor who prescribed antidepressants and ran tests. "The test results showed blood in my urine and I was told to come back in 6 months," recalls Judy.

In 1992, after 2 years of doctor visits and tests, Judy was sent to a nephrologist. "With his back turned to me, he 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 3 years." (Judy had a biopsy done to look for the cause of her kidney disease. The results were unclear, though FSGS is suspected.)

In 1996, Judy started in-center hemodialysis (HD). "I couldn't do peritoneal dialysis (PD) because of abdominal surgeries. I didn't know about any other types of treatment back then," says Judy. She stayed on in-center HD for 19 months, until she got a kidney transplant.

Expanded donor transplant

At the time, transplant centers were trying out "expanded" donors. These were donors who don't fit the "ideal" donor profile due to older age or health. "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, this transplant was a bad choice. The donor was older and died from a stroke. And, the kidneys had to be flown cross-country—all of these could lessen the function of the kidney."

The kidneys worked right away, but Judy was greatly affected by the transplant medicines. "I was on a pretty high dose and they are nasty drugs," explains Judy. "It made life difficult. I had mood swings, weight gain... Because my immune system was suppressed, I had a lot of colds, infections, and some skin cancers. I was really at the mercy of the drugs." After more than 6 years, Judy's transplant failed.

Starting home HD

"This time, I knew I wanted to do home HD, and told my doctor. He agreed, but first I had to commit to some post-transplant adjustment time," recalls Judy. "It took a year to get everything in place mentally and physically. Then I started training with Baby K—a large, complex, and stressful machine."

Judy found the staff to be supportive of all her requests and needs. One nurse, Gina, was very helpful. "I told Gina about the Buttonhole technique! No one had heard of it but Gina researched it and started an arterial and venous Buttonhole," Judy relates. "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 a NxStage machine?'"

Judy did start home dialysis with a NxStage System One, 5 days a week for 2.5 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, and get the machine ready. When my husband comes home I hook up to the machine and we eat dinner and watch TV or chat."

Benefits and challenges

Overall, Judy loves home HD, saying, "Home dialysis grants me more freedom than I ever had in-center. I can dialyze any time I want, more often, 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 lets Judy and her husband, Ray, enjoy active lives, full of travel. She hopes to do extended treatments as soon as the FDA approves the machine for overnight use. "I think Ray sometimes feels a bit restricted. In the summer, he'd like to ride his motorcycle in the early evenings," shares Judy. "Nighttime treatments would give him more freedom. Ray is my rock and his kindness and devotion is extraordinary. I'm so grateful that he is on this journey with me."