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Author Topic: News Story: Not your ordinary dialysis  (Read 1925 times)
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Photo is Jenna - after Disneyland - 1988

« on: November 03, 2006, 01:52:49 PM »

Not your ordinary dialysis

By Cynthia T. Pegram

Wednesday, November 1, 2006

Most people never really think about their kidneys.

   But when the organs fail, their absence dominates life with unrelenting demands.

When transplant isn’t an option, dialysis is a requirement.

An effort is under way to prove there’s a better way to live on dialysis than most people have experienced. And it puts patients where they want to be.

At home.

“It’s been a lifesaver for me. It’s given me back my energy to do things,” said Lynchburg resident Fred Giles, a father of three who does dialysis in his home five days a week, seven hours each day.

Giles is part of a National Institute of Health/Center for Medicare & Medicaid Services study to obtain data on nightly home-based treatment compared to three-times-a-week treatment.

The study may help change national policy on how Medicare covers dialysis costs - and boost the quality of life for many more people who need a machine to filter their blood.

The UVa Lynchburg Dialysis Facility is one of eight dialysis centers - four in the U.S. and four in Canada - participating in the Frequent Nocturnal Hemodialysis trial in Virginia. More than 10 patients from Lynchburg are in the study.

About 350,000 people in the U.S. are on dialysis. Of that number, about 1,500 receive the treatment at home, and less than 200 undergo nightly home hemodialysis.

Medicare currently reimburses for three dialysis treatments a week.

The in-home dialysis program in Lynchburg is one of the oldest in the nation, said Dr. Robert S. Lockridge Jr., medical director of the Lynchburg dialysis program.

“We’ve been doing this since 1997,” said Lockridge. That’s data on about 50,000 treatments. Lynchburg resident Joyce Cagle was the first patient in the nation to try it, said Lockridge.

“We feel it’s a safe, a better procedure. Even though it is an additional burden to undertake, they feel so much better, it’s worth the burden.”

Better quality of life for people without kidneys is one of the reasons for the study, which is under way but on hold for new enrollment as protocol changes are made.

“CMS (Center for Medicare and Medicaid Services) has put up $3 million to support the study, NIH another $10 million,” said Lockridge.

Nightly home hemodialysis doesn’t just keep life going.

“It’s almost like it used to be,” said John Evers, whose success with nightly home dialysis since 2003 boosts the rationale for the national study.

“During the day he can do anything he wants, because it operates while he’s sleeping,” said his wife, Sarah.

Both Giles, 45, and Evers, 84, have used facility-based dialysis, which provides the security of nurses and doctors on hand, but takes a huge chunk out of a day.

Patients are scheduled for a time slot - usually four hours - on a dialysis machine in a center, three days a week. Normal kidneys filter blood 24 hours a day.

Giles described the difference this way:

“I felt sluggish, tired with the four hours,” he said. “I could feel I wasn’t getting the right dialysis. With the home dialysis, I’m dialyzing five days a week, seven hours a day.

“I’m working out, starting back playing golf again. I feel great.”

The machines used at home are almost the same as those patients use at the centers. Patients have an access port directly into a blood vessel. For Giles, it’s in his left arm. For Evers, directly into the jugular vein catheter leading to his heart.

The blood flows into the machine through tubing. A “dialysate” fluid is also present, as is water. The filtering occurs as specific kinds of waste products from the blood move through a microfiber membrane. The blood flows out, cleansed of its burden of by-products, and back into the body.

The dialysis machine is equipped with alarms for a formidable array of possibilities.

When professionals enter the field, they spend several months in orientation to learn what patients who want to do home hemodialysis learn in six weeks, said Maureen Lockridge, one of the center’s three home training nurses.

Their achievement does not rely on their educational levels, she said. “The desire to learn this is what makes them succeed. It is very difficult, and a lot of responsibility for a patient to take this on.”

The payback is the freedom and the quality of life.

Giles had a kidney transplant at age 23. It lasted 19 years. But he had to return to dialysis.

He saw his life absorbed in hours away from home, time spent on in-center dialysis. When NIH study coordinator Mary Pipkin told him about the study on Nocturnal Nightly Home Dialysis, he didn’t hesitate to enroll.

Training is intense - five days a week, six to seven hours a day and often one-to-one.

“We teach all patients according to how they learn. And some learn much better and more easily as visual learners,” said Maureen Lockridge.

“Some learn by doing. The best teacher is repetition - they set up machine four or five times a week.”

Patients quickly see what happens with a mistake and what they must do to keep themselves safe.

Giles has a thick notebook of training materials, including a list of 49 steps he must go through at home. He has the help of his wife Jessica. “She’s my partner; she’s there for me.”

Part of what they learn is machine maintenance, part is lab work, and part is the nature of dialysis.

“We want them to succeed, we talk them through the procedure and we practice it,” said Maureen Lockridge. Each skill and competency is checked and rechecked. When the patients can complete all the procedures without assistance, they are approved for starting dialysis at home.

Now at night, during dialysis, Giles sits in a super-sized comfortable chair in a dedicated room in his home, watches TV, reads or sleeps.

He is on the transplant list, but until that happens, “This is the next best thing to a kidney transplant.”

This story can be found at: http://www.newsadvance.com/servlet/Satellite?pagename=LNA/MGArticle/LNA_BasicArticle&c=MGArticle&cid=1149191469566&path=

Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
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