En español | 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 Epp, 89, was alone at home in Marion Junction, Alabama. 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, Alabama, 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 Epp that she'd had enough dialysis. So 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,” 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 U.S.
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 are expected to 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 age 65 or older.
There are two types of dialysis that most kidney patients have: peritoneal, which requires an implanted catheter, or hemodialysis, which involves drawing blood and cleansing it with a special machine.
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 nephrologist 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 handle this therapy, specialists note. And frail older adults with conditions such as diabetes, arthritis and cardiovascular disease may need significant assistance at home. Up to a third of patients who try home dialysis end up switching to dialysis centers, Liu said.
It takes determination
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 3 1/2 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.
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. Just before going to sleep, Reynolds hooks up to his dialysis machine, which runs for 7 1/2 hours.
"I live a normal, productive life,” Reynolds said, “and I'm determined to make this work."
Training is demanding
In December 2003, when Letisha Wadsworth started home hemodialysis in Brooklyn, New York, she was working at a social service agency and wanted to keep her job. Doing dialysis in the evening made that possible.
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 most often stuck in a vein in a patient's arm. 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,” says 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, 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.
Damon, 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 husband.
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.
Dialysis can be overwhelming
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.
Sanders, who lives in Gold Canyon, Arizona, 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 late husband's military service. Medicare Part B pays 80 percent of the cost of dialysis at home, and supplemental coverage generally picks up the rest.
Sanders frequently visits Home Dialyzors United, a Facebook support group and Home Dialysis Central. Another site, My Dialysis Choice, is another resource.
She does sometimes gets overwhelmed by the treatments.
"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, Epp, the Alabama resident, 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 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.”