Dialysis keeps kidney patients alive, but takes a toll

Posted on Fri, Oct. 05, 2007

Dialysis keeps kidney patients alive, but takes a toll

By JEFF STRAIT Special to the Star

Ed Young and Steve Gregg agree that the worst thing about dialysis is how you feel after it’s over.

Gregg’s voice is so thin and airy people have a hard time understanding what he’s saying. He has to lie on the couch at home for a few hours just to recharge.

Young, who at 71 says he’s an old man, says he really feels like an old man after the three-day-a-week treatment.

“The rest of the day I feel so lousy I don’t want to do anything,” said Young. “I’m just zapped.”

But both agree the treatment beats the alternative.

“Quite frankly if you don’t do it you’re going to die,” said Young about the machines that help filter toxins from his blood, the job healthy kidneys normally do. “So it’s not a real hard decision to make.”

Gregg and Young, who receive treatment at outpatient dialysis facility Olathe DaVita, are two of around 2,300 Kansas patients being treated for kidney failure. And though the treatment may be a no-brainer, finding ways to pay for it may soon be a different story.

With more than 300,000 patients nationwide depending on Medicare for dialysis treatment, the prospect of congressional cuts to the program this fall could have far-reaching implications for patients needing it to survive.

With dialysis treatments costing as much as $26,000 a month, even a small cut could mean thousands in medical payments for some patients.

“Even a 10 percent cut is $2,600 per month,” said Young. “That’s more than some people make.”

Many dialysis patients began worrying when they heard about a piece of legislation passed by the House of Representatives in August.

The Children’s Health and Medicare Protection Act (CHAMP) was passed to reauthorize and expand the State Children’s Health Insurance Program (S-CHIP). But what was aimed as a way to provide health coverage to unprivileged children also included cuts of about $3.5 billion for Medicare beneficiaries suffering from kidney failure.

The Senate ultimately decided not to dip into the Medicare money set aside for dialysis treatment, and passed a smaller S-CHIP package on Sept. 27. But that doesn’t mean that provisions from the CHAMP bill won’t be resurrected as part of a Medicare package this fall.

“We expect to see a Medicare package go through this fall,” said Eric Berger, Senior Vice-President for Public Policy for DaVita, which provides care for people with kidney disease in more than 1,300 outpatient facilities and 800 hospitals nationwide. “The question is, will there be anything about the kidney-care benefit in it, and if so, what will it be?”

The clamor over cuts is one reason U.S. Congressman Dennis Moore recently stopped into Olathe DaVita, which currently treats 48 area patients.

Moore, a member of the Congressional Kidney Caucus, met with several patients receiving dialysis.

They’re effects that 45-year-old Gregg can describe in detail.

Gregg was just 17 when doctors first detected the initial signs of kidney failure. He went on to receive a kidney transplant at age 32, but his health problems didn’t end.

“I really had no clue of all the multiple things that can go wrong,” said Gregg, who was only on the waiting list for a kidney for six weeks before a match came up.

Among the problems were side-effects from the anti-rejection medication that caused his hands to shake and kept his body from fending off maladies it usually protected him from.

During a two-year period, he was hospitalized five times for pneumonia, he said.

“I’d get a paper cut and it’d turn into a major infection,” he said. “I’d get a common cold and it’d turn into something, too.”

After two years it became clear Gregg’s body wasn’t going to accept the organ. And, compared with all the problems he had with it, dialysis was almost something of a relief.

“I immediately felt better,” he said.

Young was 60 when he first heard his kidneys weren’t working the way they should. He was in the hospital for a heart procedure and as part of the tests he received he learned his kidneys were only working at about 50 percent.

Every few months, they’d drop a percentage point or two until last year when doctors found that his kidneys were working at around 15 percent of their nomal effectiveness. It was about time, doctors said, to try dialysis.

Of course by then he pretty much knew it. Even a trip out to the mailbox would wear him out.

“You just run out of gas,” he said.

Because of his age and weight, Young was advised against getting a transplant, and so for the past 14 months its been a matter of getting used to 12 hours a week of dialysis, and the hours of unmitigated boredom that that often entails.

The lucky ones can take a nap. Gregg admits he stays up later on the nights before his dialysis in the hope of sleeping through most of his 6-to-10 a.m. treatment time.

Unfortunately Young isn’t the type to doze off.

“There’s too much activity going on,” Young says about the large, open dialysis room where alarms go off if someone’s blood pressure dips too low. “You’d think getting up at 4 a.m. I’d be able to zap right out, but I can’t.”

But the boredom of sitting for four hours at a time is nothing compared to the uncertainty that the prospect of Medicare cuts instills in many patients.

“I don’t think there’s a person in there (at Olathe DaVita) that doesn’t have that worry,” said Gregg, the transplant recipient.

He was in his 33rd month of anti-rejection medication when he learned that Medicare would only pay for it for 35 months. He ultimately moved to Missouri, where the Missouri Kidney Foundation helped him get the medication he needed.

“I was in my 33rd month thinking ‘Oh my God, what am I going to do?’” said Gregg. “I don’t ever want to be put in that position again.”

Kidney Care providers like DaVita hope it doesn’t come to that either — and there is hope on the horizon.

One piece of legislation that the kidney community enthusiastically backs — the Kidney Care Quality and Education Act of 2007 — emphasizes the importance of funding educational efforts to prevent kidney disease and steers away from the deeper cuts in the CHAMP package.

It already has some backers in Congress, though whatever ultimately passes will likely be a combination of the two legislative proposals.

“We hope whatever they do will strengthen patient access,” Berger said.

In the meantime, the staff at Olathe DaVita says it can only continue doing its best with whatever resources it has.

“Our goal is to continue to be able to provide the standard of care that we provide to our patients,” said facility administrator Jayne Clarkson. “And we will continue to strive to do that.”

Learn more
To learn more about kidney disease, dialysis, kidney transplants and legislative issues, go to the National Kidney Foundation Web site at www.kidney.org.
Write Jeff Strait at OLnews@kcstar.com.

http://www.kansascity.com/news/neighborhood/olathe/story/303800.html