Patient stories: Linda
Linda first learned that it was possible to do dialysis at home from a friend she met on the Internet. "I belong to an Internet chat group for the blind," said Linda, "and a good friend from the group was the first one to tell me about home dialysis. At the time, I didn't know that I would ever need dialysis myself, but I'm glad I paid attention when my friend told me about her husband doing peritoneal dialysis (PD) at home!"
Her choice
Linda has been blind from birth, and does not have a history of kidney problems. To this day, she is not sure why her kidneys failed, although she suspects that a reaction to anti-inflammatory drugs she took for foot pain may have caused kidney damage.
Linda began to have signs of kidney problems in 1998, but her condition did not progress to kidney failure until 2004. When she needed to start dialysis, Linda remembered what she'd learned from her friend on the Internet, and decided to train for home therapy. "I chose home dialysis because I thought it would be more natural," said Linda, "and a lot more convenient. Just the transportation—using the special paratransit bus to get to and from the dialysis center 3 times a week—would have taken a lot of my time."
Special circumstances
Getting started with home dialysis presented special challenges for Linda, however. "The fact that I'm blind was a unique situation for my unit," noted Linda. "They were very supportive of my decision, but they had never trained a blind person to do home dialysis before."
As a result, Linda's training included some extra steps. She brought 2 helpers—her husband and one of her grown daughters—to CAPD training sessions. "The training nurse at the unit showed them what to do," Linda explained. "I decided to trust my husband and daughter to learn the procedure; then I could learn from them."
When Linda went home after several days of training, her husband did all her exchanges for her. Gradually, she learned how to do them herself. "In the beginning my husband was always with me watching me to make sure I did things right." After just a few weeks, Linda was confident enough to handle all her exchanges on her own.
Switching to a cycler
Although Linda started doing PD manually, she trained on a cycler after about 2 months. Using the cycler allows Linda to dialyze at night, freeing her daytime hours for other things, like her part-time job as a braille proofreader. "I work 2 days a week," said Linda, "and using the cycler for dialysis at night makes it a lot easier."
"I like to be independent," Linda relates, "and I always do as much as I can." For example, she made Braille cards and taped them to the boxes of dialysate so she can find the right solution for each dialysis session. She is also trying to get a talking scale so she can weigh herself without relying on others.
Settling in
After 5 months, Linda and her family have adjusted to her dialysis routine. The Fresenius cycler and exchange supplies are set up in her bedroom; luckily, there is a bathroom in the master bedroom. "We had to do a little furniture moving," said Linda, "but no other modifications were needed."
A bout of peritonitis during her first month of dialysis has made Linda extra cautious about following sterile technique for her exchanges. In fact, she uses hospital wipes to clean her hands, in addition to washing them, as an added precaution. And, she makes sure to keep the family dog out of the bedroom.
Now that the initial period of adjustment is over, Linda is getting back to a regular routine. "I feel good enough to work a couple of days a week, and I go to the gym whenever I can."
More independence
Being blind has not stopped Linda from doing many things in life, including home dialysis. In fact, she would like to see dialysis equipment made easier for blind people to use—so she can be as independent as possible. "I really cannot do everything on my own," explains Linda. "If I get up at night, I can't tell where I am in my cycle because I can't read the displays. I need to ask my husband to read the machine for me. I could do more for myself if the machine had different textures, or an audible voice message when it alarms," she suggests. "I think if the equipment was set up a little differently, more blind people could give home dialysis a try."