Patient stories: Penny
Forty-year-old Penny was first diagnosed with kidney disease in 1991, after the birth of her daughter. During her pregnancy, Penny, who has type 1 diabetes, also had preeclampsia. Over the next 4 years, tests continued to show protein in Penny's urine, and in 1995, she went on the transplant list. Two weeks later, she was approached to be the first person in Oklahoma to have a kidney/pancreas transplant. "I was still at 24% kidney function, but they wanted someone who was in decent shape so my odds of doing well would be better," recalls Penny. The transplant surgery was a success!
A move brings changes
Ten years later, the Air Force moved Penny's family to Washington. Penny started having toxic lab results and lost her kidney due to chronic rejection in December of 2005. "I started in-center dialysis right away, and after 6 months just didn't feel any healthier," reports Penny. "I weighed 85 pounds and had no appetite or energy." One year after starting in-center dialysis, Penny lost her pancreas, too.
Penny's doctors at the University of Washington told her that if she didn't receive a kidney in the next 2 years, she would not survive. "In-center dialysis was taking its toll on my body, but I was told I was too small to survive transplant surgery and therefore could not be put on the list."
The toll of in-center dialysis also impacted Penny's day-to-day life—she had a difficult time home-schooling her 16-year-old daughter. "Home-schooling is an all day process, like a job," explains Penny. "I found that I couldn't think straight and I was tired all the time. My 19-year-old son would fill in for me sometimes while I took a nap."
Finding a better option
Penny decided that in order to get on the transplant list, as well as survive the wait, she had to take matters into her own hands and "become proactive." She started looking at her options, and heard from her nurse that the clinic was starting a home dialysis program. "I asked her about it and knew right away that it would be a better choice for me and my family," says Penny. "I started training in July of 2006, and started short daily home hemodialysis on the NxStage machine 3 weeks later."
Penny's husband and two children all trained to do home dialysis, and take turns helping her. "My husband was stationed oversees for over 4 months and my kids helped me during that time," remembers Penny. "Overall, there is a lot more independence with home dialysis. I do 80% of the setup myself, put my needles in, connect the lines, and do all of the paperwork." Penny also feels safer doing dialysis at home. "In the northwest, there are a lot of storms and I feel safer at home if there is a power outage—I can dialyze with a generator or do my treatment the following morning."
Dialyzing 5 days a week for 2 hours and 12 minutes a day had an immediate, positive impact on Penny. "I noticed my appetite came back, and I wasn't dizzy—I felt normal. Within 6 months, my hemoglobin went up from 7 to 12 and all my labs improved," recalls Penny. "Plus, I was able to be at home with my husband and kids, which was an emotional boost, as well."
With a newly-found appetite, exercise, and weight-lifting, Penny's weight climbed from 85 to 150 pounds. "I was healthy enough to be put on the transplant list and could live a normal life. I now go on 1.5-hour forest hikes every day, plus stay active with my family," shares Penny. "I'm really trying to make sure my mind, body, and spirit are prepared to endure the 8-hour pancreas/transplant surgery."
A good choice
It's been 3 years since Penny started short daily home hemodialysis, and she is happy she made the switch. "I made the right move to dialyze at home, and I'm at the point that if I don't get a transplant it's not horrifying—I know I could do really well on home dialysis for life," she explains. "Home dialysis may not be for everyone—it requires compliance and a sense of responsibility. But for those who want a tighter grip on the preservation of their own lives, this is the right thing to do."