This is how bad diabetes can be

ELKINS, W.Va. --  For four hours, Bill Hall used to lie on a padded vinyl recliner, one arm stretched out, two thick needles sticking out of it. One needle drained the blood from his body. The other put it back.

 

His blood ran through a humming kidney dialysis machine. The machine cleaned it of toxins. His kidney used to do that before it quit working.

Hall, 65, fought in Vietnam. One of his legs was amputated at the knee. He didn't lose it to the war. He lost it to diabetes, which cut off the circulation to his foot. His leg had to be amputated so gangrene wouldn't infect his whole body.

"Diabetes is not for sissies," he half-joked in December.

Some days, he showed up at the Elkins kidney dialysis clinic in the dark, at 5 a.m. Three days a week, so do about a dozen others. Before the sun came up, they all lay on the vinyl recliners, each doing the same thing.

Lona Kittle, who used to run a diner in Belington, can't see out of one eye. Diabetes blinded it. She hopes to save the other. She likes the recliner in the corner.

Linton Wright, a retired Forest Service soil scientist, used to maintain an active schedule as a Jehovah's Witness minister. He can't do that anymore. He doesn't have any energy after running his blood through the machine.

Three days a week, patients come to the clinic and attach themselves to a machine for four hours. "After you're finished, you go back home and recover," Wright said. "The day is shot."

They're all in Stage 4 kidney failure. Usually, it could have been prevented, says nurse practitioner Barbara Weaner.

"We have people in their 20s coming to this clinic," Weaner said. "It's happening earlier and earlier. People don't understand until it's too late that they can prevent it. It's sad."

Hall lost his job after his kidneys shut down, because he had to be on dialysis three days a week. He used to travel a lot for his job. "I loved to go places," he said in November. But he couldn't skip treatments.

He went on disability. "I didn't have much choice," he said. The toxins kill a person if they stay in the blood.

"They've got mobile units you can take home, but people get infections from that," he said. He lived on an isolated Barbour County farm, "so far out, I don't want to risk it."

In December, he was hoping for a kidney transplant. "As long as he stays on dialysis, he probably won't die of kidney failure," Weaner said then. "Ninety percent of people on dialysis die of heart attack or stroke."

In early January, at age 64, Bill Hall died of heart failure. "It was heartbreaking," Weaner said.

Dialysis in W.Va. costs $147 million a year and counting

In 2009, 1,897 West Virginians were on dialysis, according to the National Renal Data System.  Their dialysis treatment cost more than $147 million. Taxpayers pay much of that.

Hundreds more West Virginians go on dialysis every year. The number has doubled since 1993, when there were 929. "Dialysis clinics are popping up everywhere in West Virginia," said Gina Wood, director of the West Virginia Diabetes Prevention and Control Program.

Nobody knows exactly how many clinics there are, since existing health care facilities don't have to get a certificate of need from the state Health Care Authority if they open one. But as of this spring, 35 clinics have certificates of need, compared with 24 in 2006. So the number of clinics has increased by at least 45 percent in the past six years.

Dialysis costs about $77,000 per year per person, including medication, according to the National Kidney Foundation. 

"It's a lot cheaper to prevent it," said Dr. Rebecca Schmidt, a West Virginia University professor who has been instrumental in making kidney screening and treatment available in West Virginia's rural areas.

West Virginia leads the nation in percent of people in kidney failure who start dialysis. The Elkins clinic's 40 patients alone cost about $3 million a year.

Many dialysis patients are on disability after the bills wipe out their resources. Taxpayers pay a lot of the bill.

People on dialysis have advanced chronic kidney disease, called CKD. The disease can be reversed before the person reaches dialysis, but it gives the patient very few physical warnings, so a lot of people don't know they have it till it's too late, Schmidt said.

Many doctors do not know how to diagnose CKD, she said. "We need a statewide education campaign."

Several years ago, at Schmidt's instigation, state lawmakers required the state Department of Health and Human Resources to provide all doctors with CKD diagnosis training, so they could spot it before it was too late.

However, the Legislature provided no money to pay for the campaign. "The best we could do was put a CKD module on our online education program," said Gina Wood, diabetes program manager.

"It's not yet a lost cause," Schmidt said. "But it soon could be, if we don't get on the ball."

West Virginia leads the nation in diabetes and high blood pressure, the two main causes of kidney disease.

Why not laugh? I'm not afraid to die.

Kittle, 77, remembers the Belington diner she used to own. "People always had a good time at my diner, and I never let a person go away hungry," she said.

Now she can't walk by herself. Diabetes has wrecked the blood vessels in her legs.

She laughs a lot. "There's nothing I can do, so why not laugh?" she says. "I'm a Christian. I'm not afraid to die."

Kittle and her husband took in a disabled man when he was a child. Now that man helps care for her at home. Home health aides come every day. That costs too. Diabetes is not cheap.

She resisted dialysis till the last minute, when she was being hauled to the hospital in kidney failure. "When I knew I was going to die, that's when I started coming."

Wright, 63, the former Forest Service scientist, had to give up his job and most of his pastoring. "All I pastor now is my group at Huttonsville prison, and sometimes I'm so sick, I can't go to that."

He carries non-sugar candy in his pocket. "It's too late, but I try anyhow," he said.

"I was sitting all day."

Hall said in November that, when he was young, his doctor told him, "'Bill, there's diabetes all through your family, so you'll probably get it. It isn't going to get you for a long time, so you might as well go ahead and have a good time.' So I took his advice on that."

"Bad advice," Weaner said.

Wright, on the other hand, knew he shouldn't be eating sugary things. "It didn't seem to hurt me," he said, "as long as I had a job out in the field, where I could be walking around all day and burn off the sugar. But soon as they promoted me to a desk job and I was sitting all day, I started to go downhill. I was still eating the sugar, but I wasn't burning it off. It didn't balance anymore."

Kittle knew she had diabetes years before she did anything about it, she said. She says she never tried to eat a non-diabetic diet. "I was running a diner! I just figured God would decide when I'd die, and there was nothing I could do about that."

"If a patient believes it's going to happen, no matter what, why would they try to prevent it?" asked Dr. Frank Schwartz, director of the Appalachian Regional Health Institute Diabetes Center in Athens, Ohio.

"We have these cultural beliefs in Appalachia that, once you get diabetes, there's nothing that you can do to prevent losing your leg or going blind and your kidneys shutting down. That's the dominant story that's out there, that those things are inevitable, once you get sugar."

 "We've got to find a way to reverse the belief that there's nothing you can do," he said. "We're not going to make real headway till we do."

About 25 West Virginia health clinic and public health departments offer American Diabetes Association-approved diabetes coaching, aimed at preventing dialysis and other complications, but there are more programs. All 28 community health centers and most hospitals also have health-coaching programs.

Kittle, Hall and Wright never got solid, detailed advice, much less a coach.

"I wish I had had one," Wright said. "I want to see my grandkids grow up."