The In the Gap: Voices from the Health Divide audio series is a partnership with 900 AM WURD. Taunya will discuss this story on WURD’s HealthQuest Live show on Tuesday, July 26 at noon.
African-Americans are nearly four times more likely than white Americans to develop kidney failure. That means tens of thousands of black Americans are waiting for a transplant and relying on dialysis while they wait.
Most go to a medical center or hospital for dialysis treatment but there’s a push to get more patients to try treatment at home. WHYY/Newsworks joined a West Philadelphia grandmother to find out how home dialysis works.
Margaret Burns, 64, has two sons and two grandchildren. When her kidneys failed, Burns opted for peritoneal dialysis. A machine about the size of an old VCR sits on small cart beside her bed.
“The machine does the work, it will take the fluid out, it empties the drain bag, then it gives me some fluid back, and it does this five times during the night,” Burns said.For people with end-stage renal disease, dialysis acts like replacement kidneys, filtering and cleaning the blood of toxins and excess fluid.A permanent catheter carries dialysis fluid into Burns’ stomach, then the chemical and sugar solution pulls wastes from the blood into the abdominal cavity. The body’s own blood vessels act as a filter.
“I unscrew a little cap on my belly tube. Hook up, screw another cap. That’s it,” said Burns. “I don’t have no needles going in me.” Later, used solution passes out of the body through another long tube down the hall to the bathroom and into the toilet. “If it’s not clear, then you have an infection. It’s like clear spring water with nothing in it. That’s what you are looking for,” she said.Burns does her dialysis for eight hours every night, while she sleeps. That’s different from the hemodialysis that most Americans get at a medical center or hospital.Burns tried hemodialysis for a few months when she first started treatment.
“With the hemodialysis, the only thing I was good for after I came home was to lay on this couch. I’m not sure if it was just happening to me or if it happens to everybody but it really zaps you,” Burns said.During hemo treatment, blood travels from the body through a needle into a machine and into a filter. The machine cleans the blood and returns it with a better balance of fluid and electrolytes. Most people go in for treatment three times a week. That regimen can be physically tough says Thomas Jefferson University nephrologist Stephanie DeLoach.
“Trying to drain three or four liters from the body in just three hours. That’s an intense fluid shift for the body. Versus doing it overnight, or over six or eight hours. That gives the body a little more time to adjust and there are less drastic changes,” DeLoach said.DeLoach says early studies suggest that home dialysis patients may be healthier than people who get their treatment at a center. She and other doctors are encouraging more patients to try peritoneal treatment at home.”Our kidneys work 24 hours a day, seven days a week, versus dialysis you just get spurts of kidney function three of four times a week at a spell. So if you could do it everyday, or if you could do it for six or eight hours that gives you more kidney function, and the better you feel,” DeLoach said.Managing dialysis at home is less expensive, so Medicare now offers incentives to dialysis companies that help patients make the shift.Ideally, dialysis is a bridge to a kidney transplant, but many people, especially African-Americans, can wait years for an organ match. Margaret Burns says at home treatment keeps her on track. “To me it’s freedom, OK. It just takes a routine. It takes somebody willing to say to themselves: ‘I like being on this earth, and this is what I have to do,'” she said.
Still, DeLoach says any kind of dialysis is a hard sell. “A lot of African-Americans have kidney disease so a lot of us know somebody in our family who’s been on dialysis, had a transplant, or had some other issue related to kidney disease or hypertension,” DeLoach said. “Whereas a generation ago, it seemed like a death sentence people are increasingly aware of options for treatment.”
DeLoach remembers one patient who said he’d “rather die” than do dialysis.”Then one visit he mentioned that his son was getting ready to finish medical school. We had a very somber conversation, and I said there’s no way you want to miss your son finishing medical school. Why don’t you give the dialysis a try, if you decide you don’t like it you can just end it. But at least you can be there for something that sounded like a very important day for his family,” DeLoach said.The man tried peritoneal dialysis at home. Fast forward several years, the patient is doing well, his son is now a doctor in training.