Technology and training are helping
"I feel so much better. I can eat whatever I want.
Miller believes that perhaps as many as half of all dialysis patients ultimately will choose the new procedure.
THEY WERE STRIKINGLY DIFFERENT from typical end-stage kidney disease patients who go to dialysis centers three times a week to have their blood removed, cleansed and returned to their bodies. These people were remarkably healthy for people on dialysis. They looked normal, they felt good, they were involved with their families, they could do what they wanted.
That was the impression of Brent W. Miller, MD, upon first meeting nocturnal dialysis patients in Toronto in October 2000. Miller knew immediately that he wanted to offer this new procedure and its dramatic benefits to his own renal patients at Washington University Medical Center.
Miller, an assistant professor of medicine, had gone to Toronto to meet nocturnal dialysis pioneer Andreas Pierratos, MD, who introduced Miller to eight of his patients. He was stunned by their robust health. I came away from that meeting thinking, I dont know how were going to do this, but we need to move forward, Miller recalls.
For people with healthy kidneys, cleansing of the blood is a continuous process; toxins dont build up to dangerous levels. Dialysis patients have malfunctioning or nonfunctioning kidneys and, even with dialysis three times a week, toxins have an opportunity to accumulate in the blood between treatments and cause a variety of damaging effects from high blood pressure to fatigue to reduced cognitive function.
Nocturnal, or in-home, dialysis revolutionizes the process.
Patients prepare for the procedure at bedtime and dialysis occurs overnight
while they sleep, using the same equipment found in dialysis centers.
And because its done more frequently, the cleansing is more thorough,
eliminating between-treatment peaks and valleys.
Its very close to having normal kidneys,
says Pam Lurkins, one of Millers patients, who has been performing
the procedure at home since September 2001.
I feel so much better, she says. I can eat whatever I want. My blood work is fabulous, Im off all dialysis medications, and I have more energy.
She also has more free time. A resident of Pocahontas IL, Lurkins had to spend two hours on the road, in addition to three-plus hours at the dialysis center each time she had a traditional dialysis treatment.
Additionally, many in-center dialysis patients experience vomiting, agonizing cramps and other symptoms while on the machines. At best, the procedure leaves patients feeling drained and weary. They typically need to allot an entire day for a treatment and its aftermath.
And because the procedure is so hard on the system, the typical patient has more doctors appointments, more hospitalizations, and more need for medication. For all these reasons, very few in-center dialysis patients are able to work full time.
Nocturnal dialysis patients, on the other hand, show dramatic improvement in these quality-of-life issues as well as in their health. Just ask Krista Havlin, a dialysis patient who holds a demanding assistant nurse manager position at the universitys General Clinical Research Center (GCRC).
It was Havlins unique combination of nursing education, research involvement and kidney disease that made her the ideal first candidate for the nocturnal dialysis program here. She has had two kidney transplants, one from her brother and one from her mother. Both failed. Because transplants sensitize a patient, prompting the development of antibodies against foreign tissue and making future transplants problematic, Havlin will not be a good candidate for another transplant for many years to come. She was looking ahead to a long period of in-center dialysis.
As her second kidney began to fail in 1999, Havlin went
to the Internet, where she discovered nocturnal dialysis in articles from
Europe. She took the idea to Miller, her new doctor. He was awesome,
she says. Ive never met anyone who is such a patient advocate
and someone who was truly looking for the best treatment for the patient.
For his part, Miller gives much of the credit for the new program to Havlin. Shes very spunky, Miller says. She kept pushing for things to be done. Thats what you want in a first patient to try a new procedure.
Havlin began nocturnal dialysis training in January 2001. Two months later, she took the procedure home.
Havlin trained with Lisa Koester, a nurse practitioner with experience in both acute and chronic dialysis and another key player in the programs development.
Developing the program has been truly a team effort, according to Koester, involving social workers who make home visits and conduct psychological screening assessments and the technical support staff who keep the machinery humming and help to train patients.
The training is critical. Home dialysis requires medical knowledge, an understanding of the equipment, a commitment to complying fully with the procedure, and a real measure of courage.
Candidates for nocturnal dialysis undergo four to six weeks training. They learn to set up the machine, to tape down the tubing securely to prevent disconnection during sleep, to understand the fail-safe devices and respond to warnings, to break down and clean the equipment in the morning, and to draw their own blood. For the final week of training, patients spend each night at the GCRC performing dialysis themselves under Koesters watchful eye.
I would never send anyone home unless I knew that they were completely safe, Koester says.
The benefits are well worth the effort. In nocturnal dialysis patients, Koester a night-and-day transformation. It gives patients so much autonomythey regain control over their lives.
Miller believes that perhaps as many as half of all dialysis patients ultimately will choose the new procedure. Those who dont will have a variety of reasons: They might be intimidated by the equipment, or concerned about undergoing dialysis without supervision. A few might be unable to master the procedure.
But within 20 years, with the development of advanced equipment and better software, Miller expects 50 percent of end-stage kidney disease patients to be using nocturnal dialysis at home. Havlin agrees; she expects Washington University to become a major center for nocturnal dialysis in the region.
Currently, four of Millers patients are on nocturnal dialysis. He hopes to add 10 more in the coming year, perhaps 40 to 50 more in the year after that. Does he believe this procedure will replace transplants? Miller, a transplant physician himself, wont go that far. The nocturnal dialysis patients I have, he explains, are all sensitizedtheyve all had transplants. They want to stay as healthy as possible until transplant techniques are better. Still, he notes that only 30 percent of all dialysis patients ever get referred for transplant, and of those, only a third actually receive new kidneys.
For her part, Havlin is so enthusiastic about nocturnal dialysis that she doesnt rule out substituting the procedure for another transplant. This would not be a horrible thing to do for the rest of my life, she observes.
Are there disadvantages? I have two concerns,
Miller acknowledges. First, any procedure involves risks, so when
you go from three times a week to six youve doubled the risks. Second,
we dont really know why dialysis works. We dont know which
toxins are critical. So we wonder, Are we taking off good substances?
Krista Havlin sums it up: There really isnt much of a downside.