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...everything you need to know about doing dialysis at home.
Melissa was only 24 years old when she was diagnosed with chronic kidney disease caused by a condition called Immunoglubulin A (IgA) nephropathy. Protein deposits were clogging the “working” cells of her kidneys, and she was losing kidney function. Because IgA nephropathy usually progresses slowly, Melissa and her doctor planned to manage her kidney disease with diet and blood pressure medications. She was optimistic that she would be able to put off kidney failure—and the need for dialysis—for many years.
Everything changed when Melissa got pregnant. Although she had a 6-year-old daughter and an uneventful first pregnancy, “my doctor was worried,” she recalled, “that this pregnancy would put a serious strain on my kidneys.” As things turned out, he was right. Melissa spent most of her second pregnancy in and out of the hospital, and her creatinine levels kept going up. She gave birth to a healthy baby girl—8 weeks early—on July 16, 2001, but Melissa lost much of her remaining kidney function.
After a third pregnancy, Melissa’s kidneys failed. Her son was born 15 weeks premature, and Melissa had become severely uremic. She was on her way to visit her new baby in the neonatal intensive care unit when she passed out in the hospital elevator. “That’s when they told me I needed to start dialysis right away,” Melissa remembered. Within three days she had a catheter put in; she had her first dialysis treatment on June 6, 2002. “I felt a noticeable difference,” she said, “and I even tried to convince myself that just a few treatments would be sufficient.”
Melissa soon realized, of course, that she would need regular dialysis treatments to stay healthy. She had surgery to create a fistula and began a regimen of Tuesday, Thursday, and Saturday dialysis treatments. As soon as she started maintenance dialysis, Melissa wanted to take an active role in her own care. After just six months, she began to insert her own needles. “It only took one infiltration to convince me that I’d be better off placing the needles myself,” she said.
For two years, Melissa kept up with an exhausting schedule of dialysis, full-time work as a Project Coordinator and caring for her three young children. Her infant son, who is legally blind, came home from the hospital just five months after Melissa started dialysis. He was on oxygen and needed daily nursing care. “It was stressful,” Melissa admitted, but she got through that difficult time with assistance and support from family and friends.
The dialysis nurses who took care of Melissa at the DCI, Inc., clinic in Kansas City suggested that she think about trying home dialysis. Melissa realized right away that home dialysis would make it easier for her to manage her busy schedule. “I wouldn’t have to rely on family members to watch my kids so much if I could do my treatments at home,” she explained. So, she applied to the home program and was accepted. “Ideally, they like home patients to have a partner,” she said, “but they accepted me even without one because they had confidence in me.”
Melissa began home training in September 2004, and she trained for six weeks. “My employer has been very understanding of my health needs,” she noted. “They worked with me so I could do home dialysis training.” With her employer’s permission, Melissa adjusted her schedule. She worked from 7:30 am to 2:30 pm every day, then went for training from 2:30 pm to 8:30 pm. “It was hard,” she acknowledged, “but I was determined to get the training out of the way so I could go home.”
Melissa did go home in November of 2004. “The first thing I remember thinking was ‘I can eat a real Thanksgiving dinner,’” Melissa recalled.
According to Melissa, the flexibility she has gained with home dialysis is “absolutely wonderful.” “Now, I am able to work full time and fit my treatments into my life,” she declared. She is also able to eat a much more liberal diet. “My biggest adjustment to in-center hemodialysis was the diet,” she admitted. “I love food and I had to cut back on so many things. Now, I can eat what I want. I still watch potatoes, tomatoes and oranges, but I can have iced tea and even Pepsi since I take it off.”
Melissa has her Fresenius H machine set up in her bedroom, right next to her bed. She dialyzes every other night for 8 hours. “I know that most home dialysis patients run 6 days a week, but that doesn’t work for me,” she claimed. “I’m the exception to every rule and if I dialyze too much, it throws off my lab results.”
Her two older kids (ages 11 and 4) help Melissa with equipment set-up and monitoring. “They are so familiar with all this medical stuff,” Melissa joked, “that I call them my nursing staff.”
Even though home dialysis is a lot of work, Melissa has no doubt that it’s worth the effort. “You need a lot of dedication and self-discipline,” claimed Melissa, “but it has great benefits.”
Melissa credits her dialysis caregivers at DCI, Dr. Walter Bender and nurse Sandra Copeland, with giving her the opportunity and skills to make home dialysis a success. “They believed I could do it, and they helped me achieve my goal.”
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