- Treatment Type
- Extended (Nocturnal) Home Hemodialysis
- Marital Status
- Not at Home
- Work Status
- Poor Vision
Sarah has been doing hemodialysis (HD) at home 5 nights a week since October of 2002. During that time, her attitude—and comfort level with home treatments—has changed a lot.
No more fear
Although doing home HD was her idea, Sarah admits that she was "terrified of the machine" when she started. Not any more! Now she thinks of her machine as "a good friend." She has also stopped worrying about "what could go wrong." Instead, she feels completely comfortable. "I've done hundreds of treatments at home," says Sarah. "Doing my own dialysis has become so routine, it's second nature to me."
Sarah has also overcome her fear of needles. "The biggest problem for me was learning to needle myself," she says. Now, she is used to putting in her own needles. "I won't say that I like it," says Sarah, "but I know how to do it." She also thinks that the extra care she takes putting in her own needles has helped keep her access trouble-free.
Switching from in-center
Like most patients, Sarah started dialysis with in-center HD. Her time slot was Monday, Wednesday, and Friday, 3rd shift. "I started my treatments at 4 pm," says Sarah, "so I didn't get home until 9:30 or 10 pm. That was 3 nights a week that I couldn't do anything fun."
To get more free time, Sarah began to look into other options. She asked her nephrologist, Dr. Walter Bender of Kidney Associates, Kansas City, Missouri about home dialysis. He told her she could start training for it right away.
"Training takes 8–12 weeks," notes Sarah. During that time, each patient goes to the center for training—and dialysis—3 times a week. "The first week, they put you on and you watch," reports Sarah. "In week 2, I had to put my needles in," she recalls. "After that, you have to do everything yourself." The training staff carefully observes new patients and helps them when they need it, but "they want you to do it yourself," Sarah explains. "That's how you learn."
By the time patients go home with a Fresenius H machine, they've done 25–35 sessions in the training center. A nurse visits to watch the first in-home session, and a nurse is on call 24 hours a day. The center has lots of "cheat sheets" to help patients recall each step of the treatment.
Sarah does an 8-hour treatment almost every night. (She dialyzes for 4 nights, takes a night off, does the next 4, etc.) Since she is a night owl, she starts her set-up at about 10:30 pm. "It takes me about an hour to get ready and hooked up," explains Sarah. Then, she reads or watches TV for a while. "You need to check pressures, chambers, make sure your transducers are dry..." she says. "There are things to do before you can fall asleep." Most patients have a partner (often a spouse) to lend a hand, but Sarah lives alone and does it all herself.
After 8 hours, the machine alarms and Sarah wakes up to start her day. "You want to be sure to turn the ultrafiltration off," she laughs, "but after I do that, I sometimes fall back to sleep and get a little extra treatment." When she is ready to get up, Sarah takes 15–20 minutes to unhook and start the disinfecting process. "I don't pull my needles right away," notes Sarah, "because I don't like to hold my sites. I leave them in while I have coffee and breakfast. Then, when I do remove them, I only have to put pressure on for 5 minutes or less."
Doing nocturnal home hemodialysis has made a world of difference for Sarah. She feels great, her lab values are excellent, and she has control over her life. "The long, slow HD works so well, you just feel better," she says. She doesn't have the ups and downs she had when she did in-center HD. When she looks at her lab reports, she can see why. "My last creatinine was 1.4," she reports, "and my phosphorus is almost too low." Sarah explains these results by pointing out that in-center HD is equivalent to just 15% of normal kidney function—while extended hours home HD is nearly 50%.
For Sarah, the best thing about extended hours home HD is the diet. "When I was in-center, I felt like I was in prison," she recalls. "I couldn't eat a tomato, eat cheese, or drink milk." Now Sarah enjoys all the foods she likes. "I love Chinese hot and sour soup," she says, "and now I can have it, fluid, tofu, and all!"
Doing extended hours home HD is not without its challenges, of course. There are nights when Sarah has a hard time sleeping with the machine on. And, she still has to watch her fluids a little and put in her own needles. She stores the water purification tanks she needs (all 6) in the bathroom near her bedroom. Still, Sarah would not trade her schedule, carefree diet, and sense of well-being for anything.
"You have control," she says. "You have your life back." In fact, Sarah is such a fan that she volunteers to tell new patients about extended hours home HD at patient education sessions run by the Missouri Kidney Program.