De uitdagingen van thuisdialys

De uitdagingen van thuisdialys

augustus 27, 2019 0 Door admin


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Dialysis at home takes discipline, skill, will and support.

CreditCreditKaiser Health News

Mary Epp awoke from a deep sleep to the shrill sound of her dialysis machine’s alarm. Something was wrong.

It was 1 a.m. and Mrs. Epp, 89, was alone at home in Marion Junction, Ala. No matter. Mrs. Epp has been on home dialysis since 2012, and she knew what to do: Check the machine, then call the 24/7 help line at her dialysis clinic in Birmingham to talk to a nurse.

The issue: Hours before, a woman who helps her had put up two small bags of dialysis solution instead of the large ones. The solution had run out.

The nurse reassured Mrs. Epp that she’d had enough dialysis. So, Mrs. Epp tried to unhook from the machine, but she couldn’t remove a cassette, a key part. A man on another 24/7 help line run by the machine’s manufacturer helped with that.

Was the troubleshooting difficult? “Not really. I’m used to it,” Mrs. Epp said, although she didn’t sleep soundly again that night.

If Washington policymakers have their way, a growing number of older adults with serious, irreversible kidney disease will do home dialysis. In July, the Trump administration made that clear in an executive order meant to alter how patients with kidney disease are managed in the United States.

Changing care for the sickest — about 726,000 people with end-stage kidney disease — is a top priority. Of these patients, 88 percent receive treatment at centers and 12 percent get home dialysis.

By 2025, officials say, 80 percent of end-stage kidney disease patients should receive home dialysis or kidney transplants. Older adults are sure to be affected: Half of the 125,000 people diagnosed with kidney failure each year are 65 or older.

Home dialysis has potential benefits: It’s convenient; recovery times are shorter; therapy can be delivered more often and individualized; and “quality of life tends to be much better,” said Dr. Frank Liu, director of home hemodialysis at the Rogosin Institute in New York City.

But it isn’t right for everyone. Seniors with bad eyesight, poor fine-motor coordination, depression or cognitive impairment generally can’t undertake this therapy, specialists note. Similarly, frail older adults with conditions such as diabetes, arthritis and cardiovascular disease may need significant assistance at home.

How do seniors cope with home dialysis? Several who are doing well on home-based therapies were willing to discuss this, but they’re a select group. Up to a third of patients who try home dialysis end up switching to dialysis centers.

Jack Reynolds, 89, prides himself on being disciplined, which has helped him do peritoneal dialysis at home in Dublin, Ohio, seven days a week for three-and-a-half years.

With this treatment, a fluid called dialysate (water, electrolytes and salts) is flushed into a patient’s abdomen through a surgically implanted catheter. There, it absorbs waste products and excess fluids over several hours before being drained away.

About 10 percent of patients on dialysis choose peritoneal therapy, including 18,500 older adults, according to federal data.

Mr. Reynolds does this while he sleeps — a popular option. His routine: After dinner, he sets out two bags of dialysate, ointments, sterile solutions, gauze bandages and a fresh cassette for his dialysis machine with four tubes attached.

It takes him 23 minutes to gather everything, clean the area around his catheter and sterilize equipment; and about the same to take things down in the morning. (Yes, he has timed it.) Just before going to sleep, Mr. Reynolds hooks up to his dialysis machine, which runs for seven-and-a-half hours.

“I live a normal, productive life,” Mr. Reynolds said, “and I’m determined to make this work.”

It took five operations to implant a catheter on his left side because of scarring from previous abdominal surgeries. He has had to replace three malfunctioning dialysis machines and learn how to sleep on his right side, so the tube connected to his catheter isn’t compressed.

In the morning, his wife, Norma, cleans around his catheter, applies a gauze bandage and tapes an 18-inch extender attached to the catheter to his chest. He could do this, Mr. Reynolds said, but “I wanted her to have some part in all this.”

In December 2003, when Letisha Wadsworth started home hemodialysis in Brooklyn, N.Y., she was working at a social service agency and wanted to keep her job. Doing dialysis in the evening made that possible.

CreditKaiser Health News

This therapy requires one to two months of education and training for the patient and, usually, a care partner. With each treatment, two needles are stuck in an access point, usually in a vein in a patient’s arm. Through lines connected to the needles, blood is pumped out of the patient and through a machine, where it’s cleansed and waste products are removed, before being pumped back into the body.

The training was “rigorous” and “pretty scary for both of us,” said Mrs. Wadsworth, now 70, whose husband, Damon, accompanied her. “We learned a lot, but we still didn’t know about issues that could arise.”

For instance, Mrs. Wadsworth had to learn what to do if air got into one of the lines and when to adjust the rate at which her blood was pumped and flowed through the machine.

Another issue: finding space for 30 large boxes of supplies (fluids, filters, needles, syringes and more) that arrive each month.

Her husband, 73, helps her set up. The routine: Dialysis starts around 8 p.m. and goes for five hours, four days a week. She passes the time eating dinner, watching TV, talking on the phone or playing Scrabble with her spouse.

Mrs. Wadsworth gets blood tests once a month and then visits her nephrologist to review how she’s doing. A nurse, dietitian and social worker are also on her team at the Rogosin Institute.

Her husband, a psychotherapist, admits it isn’t easy to stick his wife with needles. “It hurts her, and it’s not fun for me to be the person doing that,” he said. “But it’s just part of my life now. We’re thankful that home dialysis exists.”

Sharon Sanders, 76, thought she had the flu last year when she landed in the hospital. Instead, doctors told her that her kidneys were shutting down.

Mrs. Sanders, who lives in Gold Canyon, Ariz., began her nightly routine of six hours of peritoneal dialysis, five days a week, last August.

She doesn’t pay anything for the therapy, which is covered by Medicare and Tricare insurance, a benefit from her husband’s military service. (He died in 2017.) Medicare Part B pays 80 percent of the cost of dialysis at home, and supplemental coverage (including, for instance, a Medigap policy, a retiree policy from an employer or Medicaid) generally picks up the rest.

Mrs. Sanders is a frequent visitor to Home Dialyzors United Facebook support group and Home Dialysis Central. Another site, My Dialysis Choice, is another resource.

Mrs. Sanders, who has arthritis of the spine, doesn’t find her dialysis especially burdensome, but she sometimes gets overwhelmed.

“I don’t have any energy too much of the time,” she said. “I find myself thinking, What’s my purpose for doing this? Is it worth it if we’re all going to die anyway?’”

Until November, when her husband of 68 years died, Mary Epp relied on him to get her ready for dialysis, which she receives every night while she sleeps for nine hours.

Now an aide comes in at 7 p.m. to help her bathe and start dialysis. Another woman comes in at 5 a.m. to take her off dialysis, clean up and fix her breakfast.

“I’ve gotten a lot more feeble than I was” when this began in 2012, said Mrs. Epp, who was “terrified” when a physician diagnosed her with kidney failure.

But home therapy remains worth it, she said: “You just go to bed and wake up the next morning and you’re ready to go and meet the day.”

Kaiser Health News (KHN) is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation that is not affiliated with Kaiser Permanente.

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