Patient stories: Sarah Taxman
Sarah Taxman has been doing hemodialysis treatments at home 5 nights a week since October of 2002. During those 2 1/2 years, her attitude—and comfort level with home dialysis—has changed a great deal.
No more fear
Although doing home dialysis was her own idea, Sarah admits that she was "terrified of the machine" when she first started. Not any more! After 2 1/2 years, she considers her dialysis machine to be "a good friend." She has also stopped worrying about "what could go wrong." Instead, she feels completely comfortable with home dialysis. "I figure I've done about 650 treatments at home," says Sarah. "Doing my own dialysis has become so routine, it's second nature to me."
Sarah has also overcome her fears about handling the dialysis needles. "The biggest problem for me was learning to stick myself," she says. Now, she is used to doing her own sticks. "I won't say that I like it," says Sarah, "but I know how to get a good stick." 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 her dialysis with in-center treatments. She was scheduled Monday, Wednesday, and Friday on the 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 about using a portable "home" dialysis machine, and he told her that she could start a training program for home dialysis right away. Dr. Walter Bender of Kidney Associates, Kansas City, Missouri, had a home dialysis program. So, Sarah signed up for training.
"The training takes 8-12 weeks," notes Sarah. During that time, each patient goes to the dialysis center for training—and dialysis treatments—3 times a week. "The first week, they put you on and you watch," reports Sarah. "During week 2, I had to put my own needles in," she recalls, "and after that you have to do everything yourself." The training staff carefully observes new patients and helps them when they need assistance, but "they want you to do it yourself," Sarah explains. "That's how you learn."
By the time patients go home with their own Fresenius H machines, they've done 25-35 dialysis sessions in the training center. A dialysis nurse visits each patient's home to watch the first in-home dialysis session, and there is a nurse on-call 24 hours a day if there is a problem. The dialysis center also provides plenty of "cheat sheets" to help patients remember each and every step of the procedure.
New routine
Now, Sarah does an 8-hour dialysis treatment almost every night. (She dialyzes for 4 nights, takes one night off, dialyzes the next 4 nights, etc.) Because she's a night owl, she starts her set-up 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 at least a half hour. "You need to check pressures, chambers, make sure your transducers are dry," she says. "There are several things to do before you can fall asleep." Most patients have a dialysis partner (usually a spouse) to lend a hand at home, but Sarah lives alone and does everything herself.
After 8 hours of dialysis, the machine alarms and Sarah wakes up to begin her day. "You want to be sure to turn the ultrafiltration (UF) off," she laughs, "but after I do that, I sometimes fall back to sleep and get a little extra dialysis." When she is ready to get up, Sarah takes 15-20 minutes to disconnect and start the disinfecting process. "I don't pull my needles right away," notes Sarah, "because I don't like to hold my stick sites. So, 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."
Feeling great
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 dialysis works so well, you just feel better," she says. She doesn't have the ups and downs she had when she did in-center hemodialysis. 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 dialysis is equivalent to just 15% of normal kidney function, while nocturnal home hemo is nearly 50%.
For Sarah, the best thing about nocturnal home hemodialysis, however, is the diet. "When I was on in-center dialysis, 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!"
Not perfect
Doing nocturnal home hemodialysis is not without some problems, 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 do her own needle sticks. She also has to store the water purification tanks she needs (all 6 of them) in the bathroom near her bedroom. Still, Sarah would not trade her flexible 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 her experience with nocturnal home hemodialysis at patient education sessions run by the Missouri Kidney Program.