Patient perseveres after kidneys unexpectedly fail

? John Matheny is in the kitchen, a box of plastic wrap in one hand, a tube of numbing cream in the other. He smears the white paste over his slightly bruised left forearm, then wraps it to keep his shirt clean.

He makes some toast, pours coffee and swallows the first of 20 pills he will take today. Then he waits for the cream to numb the area where needles will be inserted under the skin to help cleanse his blood.

He does a lot of waiting these days. It is one of the hardships of living with kidney disease.

An hour later, peanut butter crackers tucked into a shirt pocket and a blanket under one arm, he swings open the door to the Morgantown Dialysis Center, a five-minute drive from his home. It’s only 5 a.m., but “the regulars,” as he calls them, shout cheerful greetings.

“We’re just like one big family,” Matheny says. “We spend a lot of time together.”

This isn’t the way Matheny planned to spend his retirement. At 73, he thought he would be relaxing with friends and family. Taking it easy.

The failure of his kidneys changed all that. Now, his life follows an unvarying pattern: He rises early three days a week and waits nearly four hours as machines remove, clean and return his blood  one pint at a time. He battles exhaustion. He sleeps a lot.

He doesn’t make plans: He never knows how he will feel.

“Some days, he’s lucky to get to that bed,” says Colleen, married to John for 51 of her 71 years. “And some days, we go to Kmart.”

Matheny had been sick for more than a year. His skin itched constantly. Twice, he coughed up blood. He lost his appetite, then 30 pounds. He was tired. Dark blotches appeared on his scalp.

Tests were inconclusive, so in July 1998, he went in for more. Hours later, he was summoned to the hospital, where he got a transfusion and shocking news: His kidneys had quit working, and without dialysis, he would die.

“I assumed my days were numbered,” Matheny says. “I had friends who’d been on dialysis, and they died. … I sold my car, gave my guns to my son, made a will.”

After the first few treatments, “I’d go home and cry,” he recalls. “I said to my wife, ‘I’m not going to go.”‘

Such depression is common, social worker Greg Sanders says. “People think of dialysis as a death sentence.”

Often, they know someone who died while going through treatment. They don’t question what other, complicating health factors that person might have had.

Patients like Matheny, first treated in an emergency, have less information and less time to adjust to the idea of life on dialysis. They don’t realize that patients are living longer and better, often for many years.

“The less information you have before you start, the harder it is to adjust,” Sanders says. “And depression is like the grief process: You work through it in stages.”

Painful treatment

Matheny’s free hand suddenly clamps down on the arm of the gray vinyl recliner. He grimaces. A technician who’s still in training is trying to insert a 15-gauge needle into his fistula, the passage on his forearm where vein and artery have been surgically attached to form a larger opening. Although the fistula leaves a visible lump on his arm, the technician must still find the opening to accept the needle.

He sneers at the young woman, rolls his eyes and silently mouths comments about her lack of skill.

Did the numbing cream work?

“Not too good this time,” he mutters.

Two needles go into his arm, each “big enough to suck a soda through,” Matheny says.

One removes the blood; the other returns it. In between, the blood circulates through an artificial kidney, a long, transparent cylinder filled with what looks like a white rope, unraveled and combed straight.

The fibers are ultra-thin membranes with microscopic holes that are large enough to let molecules of water and chemicals pass, but not blood cells. On one side of the membrane is a clear liquid called dialysate, a solution of sodium, calcium, potassium and glucose. On the other, blood.

As they pass each other, toxins and extra fluid in the blood move into the dialysate. A machine the size of a refrigerator measures and checks the fluid removal, adjusting to match the numbers the technician has programmed in.

Healthy kidneys stimulate the production of red blood cells and release hormones that regulate growth and blood pressure; Matheny relies on medication.

Healthy kidneys filter the entire blood supply every two minutes; Matheny waits three hours and 45 minutes.

Halfway through, hunger makes him rip open the crackers. The room is cold to minimize risk of infection, so he pulls the blanket over his shoulders.

Donors few and far between

“I’ve been nursing for 27 years, and I had no idea the large numbers of people on dialysis,” says Marcia Deusenberry, who works at the Morgantown facility.

According to the National Kidney Foundation, each year nearly 60,000 people die of kidney disease.

Another 260,000 rely on dialysis for survival.

With the shortage of organ donors, only about 11,000 people  fewer than one-third of the 45,000 who are waiting for a transplant  will get one.

And for many, it’s not even an option.

Matheny will never be a transplant candidate. He has a history of heart problems and ulcers, and he suffers from high blood pressure, which caused his kidney failure.