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...everything you need to know about doing dialysis at home.
Photo courtesy Dave Weatherall.
To say that Marie-Eve is enthusiastic about nocturnal home hemodialysis would be an understatement. “I couldn’t do the things I do—nursing school, a part-time job, and training as a high jumper—if it weren’t for nocturnal dialysis,” she claims. “It gave me my life back!” Now, Marie-Eve wants to tell others about the benefits of nocturnal dialysis. Here’s her story.
Marie-Eve went to Spain as an 18-year old student in September 2001. She planned to pursue language studies and continue her training as an elite high jumper. When she started to gain weight, she blamed it on changes in her eating habits. But when she got so dizzy she had to be hospitalized, she learned the real reason. She had a blood disease that was causing clots, and the clots had destroyed her kidneys.
After a month of every-other-day dialysis and plasmapheresis treatments, she was stable enough to fly home to Canada. “My new reality hit me on the plane,” she remembers. “They were giving out chocolates, but I had to say ‘no’ because chocolate is not OK on a renal diet. My life had been changed forever.”
Back in Ottawa, Marie-Eve met with her nephrologist to talk about treatment options and decided to try peritoneal dialysis (PD). “I liked the more relaxed diet, and I didn’t want a fistula,” she recalls. “I was 19 years old! I didn’t want my arm to look like that.” She liked PD and would still be doing it today, if a bad case of peritonitis had not reduced the effectiveness of her PD exchanges. “I was doing 9 hours a night on the cycler plus 5 exchanges each day, and still not getting enough dialysis; I had to make a change.” She went back to in-center hemodialysis.
A nurse from the hospital’s home dialysis unit suggested that Marie-Eve try nocturnal home hemodialysis. Marie-Eve was so determined to get her independence back that she said “yes.” But, she had to overcome her fears.
Marie-Eve had fistula surgery in January 2003. “If I kept a catheter, I couldn’t swim, couldn’t shower or do home dialysis; I had to do it,” she says.
Using her fistula meant putting in needles—Marie-Eve’s next hurdle. “I was so afraid,” she recalls, but she was determined. Her mother helped her get over her fear by working with her during the learning process. “She’d bring pieces of my favorite cheese, and I could have one if I got the needle in,” she explained. Today, Marie-Eve has a buttonhole and does her own needle placement without a second thought. “Anyone can do this if they want it badly enough,” she explained.
Marie-Eve was wait-listed for a nocturnal home hemodialysis training spot. She waited 7 months. In the meantime, she did her treatments in the hospital and trained for short daily hemodialysis. She started short daily hemodialysis in the summer of 2003. Then, in early 2004, a nocturnal spot opened up.
Marie-Eve was so determined to get back on her feet, that she insisted on doing her home hemodialysis treatments on her own. No helpers. She has a Lifeline alert button that she can press in case of emergency, but she does everything else on her own.
After just one week of nocturnal home hemodialysis, Marie-Eve was starting to feel better. “In 2002-2003, I was in a wheelchair,” she recalled. “I was too weak to wash my own hair.” But, after that first week of nocturnal treatments, Marie took a shower and washed her hair, “My mother spent the whole day on the phone telling people,” she laughed.
These days, Marie-Eve is very much the active, independent young woman. She shares an apartment with her brother in Ottawa. She attends nursing school, works part-time as a personal trainer, and—best of all—is once again training for the sport she loves: high jump. She joined the University track and field team and began training with them in earnest in fall 2010.
She does her nocturnal treatments for 8-9 hours/night, 6 nights a week. “You have to have a day off,” she said, “but I don’t like my off day. I feel better when I dialyze.” Her daily prescription pill count has dropped from 32 to 7 per day, and she can eat the foods she loves. “I haven’t been in hospital for years,” she added, “before it was three to four times a year.”
Marie-Eve also devotes her time to telling other dialysis patients about the benefits of nocturnal home hemodialysis. In the summer of 2010, she worked with the Shad Ireland Foundation Canada to organize a 1-kilometer walk/run for dialysis patients in Ottawa. “We had 300 participants,” she reported, “and we hope it will be even bigger in 2011.”
“Anyone can do home hemodialysis if you want it enough,” she claimed. “I was afraid of needles, I was afraid of the alarms, I couldn’t sleep at first because of the sound of the machine, but I got over all that because I wanted my life back.” She urges others to have the courage and confidence to try it for themselves.
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