Patient stories: Bob Gibbs
Some people might consider Bob Gibbs an "unusual" peritoneal dialysis (PD) patient. He's a large man—weighing in at over 200 pounds—and he has been taking oral diabetes medications for more than 20 years. Yet, Bob has been doing fine on PD for more than a year and is glad his nephrologist recommended CCPD. "I wouldn't want to go to a center three times a week for hemodialysis," says Bob, "especially with those needles!"
Part of a plan
As someone with diabetes and heart problems, Bob has been under the regular care of physicians for a long time. After bypass surgery a few years ago, Bob's cardiologist told him to see a kidney specialist because his lab tests showed signs of kidney damage.
The nephrologist tried to help Bob keep his kidneys working, but they also talked about the fact that Bob would probably need dialysis some day. Bob had several years to get used to the idea of kidney failure and to learn more about it. In April of 2004, Bob's blood tests showed high BUN and creatinine levels. The time had come to begin preparations for starting dialysis.
Getting ready
Bob's nephrologist recommended CCPD, in part because Bob still has some kidney function. Bob liked the idea of CCPD because he would be able to manage his own dialysis at home, and because he'd have more flexibility in his diet—which was already limited due to his diabetes.
The first step was getting a PD catheter. "I had two surgeries," explains Bob. "The first operation wasn't bad at all; they didn't even put me out completely." Unfortunately, the catheter opening was blocked by Bob's intestines and he needed a second surgery to get it working. "That surgery was harder," recalls Bob. "It was really tough coming out of the anesthesia."
Once the catheter was working, Bob and his wife, Suzie, began training. "The school was set up for two weeks of training," notes Bob. "You'd go every morning for hands-on practice, and the training nurses would watch you do an exchange." From Bob's point of view, "learning the procedure was pretty straightforward." In fact, they let him go home early because he "didn't need the whole two weeks to get the hang of it."
One year later
After a year at home, Bob has settled into a routine that fits his lifestyle. "I do one manual exchange at about 7 pm," he explains. "Then, at about 10:30 or 11 pm, I hook up and drain and start my night-time cycling." Bob uses a Baxter HomeChoicePRO™ cycler and does four exchanges over a 10-hour period. He's ready to disconnect at about 8:30 or 9 am the next day.
"Of course, I'm not sleeping all that time," says Bob. "I have to stay in the room with the cycler, but I have a 40-foot leash," he jokes. "I can do a lot of things before I'm ready to go to bed, or if I get up before the cycles are complete."
Bob follows his dialysis routine every night. "Occasionally I skip the manual exchange if I have something to do in the evening that gets me home a little later than usual," he adds. Since his labs are good, he allows himself the flexibility to skip that exchange once in a while.
Bob handles all the set-up, connecting, and running of the daily dialysis on his own, even though Suzie trained with him and knows how to run the equipment. "Every two or three months we have a little practice session," says Bob, "to keep Suzie fresh on what she learned, just in case."
Making adjustments
Things run pretty smoothly for Bob now that he's stabilized and has a routine, but he acknowledges that he had to make adjustments. For example, it took time to get used to sleeping with the cycler running at night. "Usually, I don't notice that it's there," says Bob, "but it took some getting used to. Even now, once in awhile I'll have a bad night when the cycler seems to bother me and I can't sleep."
He also had to get used to managing all the supplies. "It's hard to imagine just how many supplies you have to deal with," admits Bob. "There's a considerable amount." He uses one of two walk-in closets to store the supplies he needs on-hand in his bedroom. The rest stay in the garage, but he built a special rack to keep them off the ground. "I carefully move supplies when I need to," Bob says. His son and grandson also help him move the supplies as needed.
Body changes were another area of adjustment for Bob. "I'm not too worried about the way the catheter looks," he notes, "but it was placed right below my waist so it is hard for me to wear a belt. Now, I wear extra big pants and hold them up with suspenders. It's not a big deal, but it's a change." He's also gained some weight, so he watches his food intake to keep additional weight gains in check.
Perhaps one of the biggest adjustments Bob made was choosing to retire early—at age 60—and leave his job as an electrical lineman for Pacific Gas and Electric. "It was pretty hard physical work," he says, "and I didn't want to be climbing poles with a catheter in me." Instead, Bob decided to take long-term disability; his wife works part-time.
More changes
Recently, Bob and Suzie moved several hours away from the dialysis center where he trained. So, in the next few months, Bob will be going back into training to learn how to use a different cycler—the one supported by the clinic closest to his new home.
In the past few months, Bob has started to talk about his dialysis with other patients via the Internet. "I joined an online group at dialysissupport@yahoogroups.com," says Bob. "Privacy laws made it hard for my dialysis nurse to put me in touch with other patients, but I can do it myself online." He enjoys the opportunity to trade experiences with others, but has to reconcile the sometimes differing opinions he gets from other patients. "One person will say, 'You can go swimming in the ocean,' and another one will say, 'salt water is terrible,'" he reports. "You have to use common sense and check things out with the doctor."
Finally, on the advice of his nephrologist, Bob has had a fistula created in his arm as a safety precaution in case he needs to switch to hemodialysis. "I'd hate to do that," says Bob, "because I have more freedom with CCPD. It fits in well with my social life and I don't have to be as careful with my diet as you do if you're on hemodialysis."
Happy at home
Bob is glad that his medical condition(s) and his living situation make it possible for him to do his own dialysis at home. "I try to work dialysis into my life, not the other way around," he says. "CCPD lets me do that, and as long as my labs are good I'm sticking with it."