Patient stories: Lisa
In 1978, 12-year old Lisa and her family sought medical help because she had a rash and stomach pain; they suspected allergies. Instead, they learned that Lisa had a condition called Henoch-Schonlein purpura (HSP). Medical science has yet to uncover the cause of HSP, but the disease usually lasts only a short time and most patients recover on their own. In very rare cases—like Lisa's—HSP can cause kidney failure.
Dialysis at a young age
Lisa, a very athletic young teen, was at volleyball practice when her parents brought her the news that her kidneys had failed and she would need to start dialysis. Not long after, Lisa started on peritoneal dialysis (PD). "Back then, you went to the hospital for dialysis, even PD," Lisa recalled. "I would go from 6 am to 6 pm every other day. The idea was to do one PD exchange every hour."
"I felt right at home," she remembered. "My dad painted murals of Snoopy and Woodstock doing dialysis on the hospital walls, and the nurses were all so nice to me." Although Lisa spent a lot of time in the hospital, she continued to attend school.
After 6 months of PD therapy, Lisa had a fistula put in and switched to hemodialysis. She still went to the hospital for her dialysis, however. Her new schedule was 3 evenings a week for a 3-4 hour treatments. During the day, she attended school. Lisa also started to take on some of her own dialysis care. "I learned to set up my own machine and put in my own needles," Lisa said proudly. "Back then that was very unusual...especially for a kid."
Multiple transplants
In 1979, Lisa got a living-related transplant from her mother; the transplant lasted for 10 years. During that time, Lisa graduated from University with a Bachelor's in Science and traveled the world. "When my transplant began to reject I knew it was only a matter of time before I'd be back on dialysis," Lisa recalled, "so I went to Australia." Lisa was there for almost a year before her transplant failed; when it did, she returned home to Winnipeg (Canada) to begin dialysis again.
Lisa's return to dialysis was short-lived. Just one month later (in 1989), she received her 2nd transplant. She enrolled in a Bachelor of Nursing program and during one summer she traveled to South East Asia. In 1994, Lisa moved to Vancouver to attend the University of British Columbia, where she earned a Masters degree in Nursing Education and Research. In 1995, the summer after the first year of her Master's program, while she was working full-time and taking an evening statistics course, her second transplant failed. To continue working, Lisa scheduled her in-center dialysis sessions in the evening and weekends. She maintained her full-time work/dialysis schedule for seven years until she got the call for her third transplant in late 2002. Unfortunately, that transplant survived only 12 hours due to a technical complication.
Home training program
For almost 11 years, Lisa worked while on in-center hemodialysis. During this time, in 2001, Lisa and a group of dialysis caregivers formed a dragon boat racing team to raise awareness of kidney disease and encourage organ donation for transplants. The 22-person team rows their boat—called "Oh-2-P"—in competitions around the Vancouver area.
In 2005, Lisa learned that Vancouver General Hospital was starting a nocturnal home hemodialysis program, and she applied. She was accepted in September, 2005. "The timing of the training classes was a big obstacle to overcome," Lisa reported, "because they were during the day, three days a week, and I was working full-time." Still, Lisa made the time in her workday. "I was determined," she added, "to do home dialysis." She started her work day early around 6 am, put in a full day's work, and then went to home dialysis training at 1 pm. Because Lisa had so many years of dialysis experience, in addition to her nursing background, her training went very quickly. "It only took me 3 weeks," she noted.
Preparing her home for dialysis was easy, too. "The only modifications I needed were two electrical outlets and a water hook-up in my bedroom," she reported. Now, Lisa does her dialysis at home using a Gambro AK95. She dialyzes 5-6 nights a week, and usually takes a day off on the weekends. "I usually run about 7 hours per treatment," she said, "so I am getting at least 35 hours of dialysis a week, and I feel great!"
Lots of advantages
For Lisa, feeling great is the biggest advantage of home dialysis. "You don't have the highs and lows you get with every-other-day treatment," she said. And, she finds the treatments themselves are gentler. "The blood flow rates are so low that I never get cramps during dialysis," she added. Lisa's blood pressure is normal for the first time in years, and her friends and coworkers have noticed a difference in her skin and her hair. "There are so many medical benefits," Lisa reported.
Daily nocturnal hemodialysis also enables Lisa to eat and drink whatever she wants. "I've had to add phosphorus to my diet," she declared, "because I wasn't getting enough!"
Lisa especially likes the freedom she has to plan her own days. "I feel like I have my life back," she said. "I actually get to spend time at home or going out in the evenings. Before, I was always at work or the dialysis unit. Now I can spend my evenings at home or out with friends." Lisa sets up her dialysis machine about 10 pm, watches TV for a while, and then goes to bed. "My cat sits on the warm machine or snuggles with me when I sleep. She likes the hum of the machine."
Overcoming fears
Based on her own positive experience, Lisa encourages other dialysis patients to give nocturnal home dialysis a try. "Anyone can do it," she claimed. "They just need to get over the fear of the unknown."
When it comes to more specific fears, Lisa has a rebuttal for every one. Afraid of needling? Lisa admits that the first one or two cannulations were nerve-wracking, but now she uses the buttonhole technique and thinks, "it's a piece of cake." She uses a topical anesthetic if she needs to start a new buttonhole site.
Worried about emergencies? "There's nothing you can't handle," claimed Lisa. "There is 24-hour technical support and nursing staff on call. The pump speed is low so a serious bleed is much less likely, and the training teaches you what to do." Even people who live alone—like Lisa—can do home dialysis safely if they follow what they're taught and don't take shortcuts.
Even though Lisa thinks the machine is easy to use and has no problems at all with doing things for herself, she does acknowledge that home dialysis is a big step for many patients. "Just remember, they won't send you home until you're ready," she advised. "Take that leap of faith and try it. The results are so worth it."