Patient stories: Debbie
Can a single mom of a 5-year-old do daily home hemodialysis (HHD)? You bet! "Forty-some-year-old" Debbie wouldn't have it any other way. "I no longer have to build my life around in-center dialysis treatments," she explains. "Dialysis used to run my life, now I run my life!"
How it all started...
In May of 2005 Debbie went to see her doctor about a hurt leg; a blood test showed that she had kidney failure. "It was a shock—a head-spinning experience. I thought I was going to die and leave my son," recalls Debbie. "Then I thought to myself, 'I'm a strong person and if I could go through the loss of my 6-year-old daughter [from a brain stem tumor]—which was the worse thing I could go through—I could go through anything.'"
The cause of Debbie's kidney failure was type 2 diabetes, diagnosed 17 years ago during her first pregnancy. Debbie started in-center hemodialysis right away. "After I'd come home from a treatment I had to just sit down," remembers Debbie. "I was so tired that it was hard for me to pick up my son. Sometimes I could only muster enough energy to make him lunch."
Debbie was on in-center hemodialysis for over a year when she learned about HHD options. "I was being evaluated for a transplant and was looking online for financial support when I stumbled across the Home Dialysis Central web site," recalls Debbie. "I started reading and realized that there were all of these home therapy options!" Debbie went to her doctor with the information she discovered. "He thought it would be a great option for me because I was young and active and because I like to be in control of my life." Debbie got on the HHD wait list at her center and started training in October of 2006; by November, she had started daily HHD.
Daily HHD routine
Debbie knew she needed a responsible partner while she did her daily HHD, in case something went wrong, and to keep an eye on her young son. "My ex-husband is a good friend and father and he volunteered to be my partner," explains Debbie. "I do my daily HHD 6 days a week for about 2.75-3 hours a day. The timing depends a bit on his schedule because he has full-time job."
For Debbie, scheduling daily HHD into her life hasn't been an issue. In fact, she finds it easier than in-center hemodialysis. "There is no getting around the schedule when you're on in-center dialysis. That, combined with spending several hours a day driving, takes 3 full days out of the week," says Debbie. "I am a busy single mom with chores and a child to care for. I can now adjust my schedule if I need to and go do what I have to do."
Loving daily HHD
In addition to the flexible schedule, Debbie has other reasons to sing the praises of her treatment choice. "I feel so good now—I have no cramping, I don't feel sick, and I can pick up my son from school and go out for the day," says Debbie. "My potassium and phosphorus are lower and even my nephrologist said I don't have the typical skin color of someone on dialysis."
The added freedom with her diet on daily HHD is another plus of daily HHD for Debbie. "I don't go crazy, but because I dialyze more often now, I'm a bit freer with my diet," she explains. "I also have a much better appetite because I feel better and I'm not as weak. Before HHD, going to the grocery store was hard because I felt like I was going to throw up all the time!" The portability of her dialysis machine is another big plus for Debbie. "I live in California and my family lives 5 hours away. With daily HHD, I have the freedom to travel—and I do, a lot!"
Debbie feels that being at home is a more comfortable environment than being in a dialysis center. "Most people feel better and recover better at home. Being in a center with 20 or more people, passing germs around, is not the best place to be," she says. "I also notice that my access is so much more attractive now that I don't have different people sticking it!" Debbie feels HHD is a better choice for mental health, too. "It is very depressing to see all these people on gurneys and in wheelchairs. You think to yourself, 'Am I going to be like that?'" remembers Debbie. "At home, once I'm under a blanket watching television, I think it's worth the work to be at home!"
The only fault Debbie can find with daily HHD is the time it takes to set up the machine. "Priming the filter takes about 20 minutes, then another 30 minutes or so to get the machine ready, and clean-up runs about 10-15 minutes," says Debbie. "But the good far outweighs the bad!"
Looking back and ahead
Debbie wishes she would have known sooner about HHD options. "I think that people new to dialysis should ask someone about all of the treatment options," shares Debbie. "Home dialysis is not for everyone—you have to be disciplined and can't skip treatment days—but if you can do it, realize how important dialysis is, and know that your body depends on it, HHD is great."
Currently, Debbie is on the waiting list for a transplant. With that she's taken on a new "job." "My doctor just told me that the life expectancy for someone on HHD is twice as long as for someone on in-center dialysis," she explains. "So, until a kidney becomes available, my job is to stay as healthy as possible for as long as possible."