DIY dialysis
Home dialysis giving kidney patients their lives back.
FOR Chuck Letner, there really is no place like home. Letner, who has undergone three failed transplants, has no kidneys and has lived nearly half of his life on dialysis.
But instead of having to go into a clinic three times a week for three to four hours each session, Letner, 49, cleans his blood while sitting in his easy chair at home in Alpharetta, Georgia.
“The level of independence it provides is very empowering,” Letner said recently. “It changed my life.”
Although home dialysis has been available at least since the 1970s, its use has yet to become widespread, said Charlotte Frasier, a registered nurse and home therapy manager for Fresenius Dialysis Center in Marietta, Georgia.
In fact, according to Home Dialysis Central, an online resource developed by the Medical Education Institute to raise awareness about in-home dialysis, more than 400,000 Americans need dialysis, but just more than 1% of them use home hemodialysis.
In Georgia, there were 16,646 dialysis patients last year, and of those, 1.6% were using home hemodialysis.
Dialysis can be physically draining and requires a significant time commitment, so many patients are unable to work and find taking extended overnight trips can be difficult because dialysis requires scheduling.
With in-home dialysis, though, patients can do dialysis whenever it is convenient to them. It’s important, Frasier said, that patients talk to their physician to determine whether they are mentally and physically able before they proceed.
“Home is fantastic,” said Dr Stephen Pastan, a nephrologist and medical director of Emory’s kidney transplant programme. “Patients love it.”
Frasier said the option, has been slow to catch on because of “a lack of knowledge”. Plus, Dr Pastan said, a lot of people find sticking themselves with needles frightening and are reluctant to do the self-care even though home dialysis is easy to do.
“A lot of people get renal disease, start doing in-centre dialysis, and no one ever tells them they can do it in the comfort of their own homes,” she said.
Unlike dialysis care, where patients must go to a outpatient clinic, those who elect to be treated at home must be able to stick themselves with the needles and have a spouse or other helper in case of problems.
Letner, a retired computational biochemist, is one of nearly 100 patients Frasier has trained to perform in-home hemodialysis.
Patients, she said, are required to come into the clinic at least once a month to check blood levels and manage medications and dialysis prescriptions.
“In between visits, we have a nurse on call 24 hours a day to help with any concerns,” Frasier said.
According to Frasier, your entire blood supply flows through your kidneys every two minutes. In addition to removing waste and fluids from the bloodstream, the organs also produce hormones that help make red blood cells that carry oxygen to other organs, control blood pressure and build strong bones.
When kidneys fail, most likely due to hypertension, diabetes or both, dialysis performs that work, she said.
Fresenius, which has about 1,800 clinics in the US, recently launched what it calls the “TOPS” programme to help raise awareness about the different dialysis options available to patients and the advantages to doing the procedure at home.
“Fresenius’ mission statement is ‘Improving the quality of life of every patient, every treatment,’” Frasier said.
“By almost all measures, patients who do home hemodialysis do better than those who don’t,” said Pastan, the medical director of Emory’s kidney transplant program.
“They feel better, their appetites are better, their energy level is better and they live longer,” he said.
Dr Pastan said that could be because those patients are self-sufficient, organised and willing to be in charge of their health care, so they’d probably do better anyway.
“But any time a patient can take responsibility for their own care, it’s a good thing,” he said.
Letner, who was diagnosed with renal dysplasia at age six, first went on dialysis in 1979 soon after he rejected the second of two donor kidneys, including one given him by his father.
He was 16 and in high school then, trying desperately to maintain his quality of life. Even though he would undergo more than 50 surgeries, including one more transplant, he said he managed to live a normal life.
“I went to football games and parties with friends, and I even learned to scuba dive and ski,” he said. “I had friends who’d come with me to dialysis from time to time.” He dreamed of graduating from high school and college, and he did.
Letner was in graduate school studying to become a computational biochemist when, he said, he decided the dialysis clinic was too confining. “The biggest obstacle was the scheduling,” he said. “I had to be there at 5pm even though I wasn’t getting in until around 6:15pm. It made no sense to go there and wait.
“I walked into the charge nurse’s office and said I have to go home now. I can’t do the units anymore.”
That was in 1995, the year Letner began home dialysis.
“It was hands down the best decision of my life,” he said.
And so on a recent Wednesday evening, there Letner was, hooked to the machine that was cleaning his blood while he relaxed in an easy chair watching old episodes of Cheers. He said he liked evenings because dialysis can leave you feeling like you have a hangover.
“This way, I get to sleep it off,” he said, smiling. – The Atlanta Journal-Constitution/ McClatchy Tribune Information Services