Patient stories: Lori
Forty-one-year-old Lori was diagnosed with kidney disease in 1988—cause unknown. Since that time, Lori has been on in-center hemodialysis, received two transplants (one lasting 15 years), and currently has been on continuous cycling peritoneal dialysis (CCPD) for 9 months.
Treatment history
Lori started in-center hemodialysis 1 month after being diagnosed with kidney disease. "I did in-center hemodialysis for 1 week, but I really didn't like the needles in my arm," she remembers. "I also had bad cramping, and generally didn't feel well." Lori had surgery to put in a peritoneal catheter and started CCPD.
After doing CCPD for over 1 year, Lori received a deceased donor kidney that lasted 72 hours. Lori was put back on the transplant list and returned to doing CCPD. Four months later, Lori received her second deceased donor kidney; it lasted for 15 years. When that transplant failed, Lori again returned to CCPD, and has been doing it for the past 9 months.
"I do my treatments from around midnight until about 7 am, with a 20-minute pause [exchange] at 7:30 pm," says Lori. "I'm also doing 2-3 manual exchanges a week to get better dialysis since my lab values haven't been that good."
Struggles
When she first started CCPD, Lori had a problem getting comfortable with the large amount of fluid in her abdomen. "Sometimes, I'd end up laying on the tubes and the alarm would go off," she remembers. "Otherwise, the noise from the machine doesn't really bother me."
For Lori, restless leg syndrome (RLS) has been a big struggle in her life with kidney failure—so much so, that, despite her young age, Lori quit her full-time job as an interior designer. "One of the reasons I'm not working is RLS—I'm very tired because I can't sleep at nights," reports Lori. "Also, I'd have to be home by 7:30 pm, which makes it hard to work retail." Lori also found that it was hard to smile and work with people when she was nauseated. "I am thinking of volunteering now, to keep busy," says Lori.
Lori watches television standing up when she is having symptoms of RLS. "It screws up my whole schedule," says Lori. Initially, Lori tried taking medication for the RLS, but felt really nauseated and stopped. Later, Lori found the true reason for her nausea: a problem with one of her kidneys. "I had surgery to remove my bad kidney, and the pain medicine they put me on really helped me sleep!" Since then, Lori has tried the RLS medication again, and her RLS symptoms seem to have improved.
Being informed
Lori decided to learn more about RLS and has gone to the Internet for information. "I found an article linking salt intake to RLS, so I try to limit salt. I've tried relaxation tapes, too, which sometimes worked and sometimes didn't. I've also heard that a pillow with lavender in it helps with relaxation."
Since reducing her salt intake and adding manual exchanges to her dialysis routine, Lori's lab values have improved and her RLS symptoms have gotten a bit better. "You have to get information to ask your doctor questions and make changes that will help you feel better," Lori explains. "Most importantly, know that you are not alone."