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Author Topic: Texas man visits Palm Harbor to demonstrate home dialysis system (Harvey!)  (Read 1503 times)
okarol
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Photo is Jenna - after Disneyland - 1988

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« on: December 17, 2010, 12:29:10 AM »

Texas man visits Palm Harbor to demonstrate home dialysis system

By Theodora Aggeles, Times Correspondent
In Print: Friday, December 17, 2010
   
[Special to the Times]

By Theodora Aggeles

PALM HARBOR — Harvey Wells had every reason to become bitter.

At age 42, chronic kidney disease threatened his life. At 50, the kidney he'd received in a transplant failed.

He wasn't sure the trips he'd hoped to take with his grandsons would ever happen until a portable, 70-pound dialysis machine gave him new hope.

"My wife gave me one of her kidneys, but now she's being selfish and won't give me her other one," Wells said, with a grin. "I'm back on the transplant list, but don't care if I get another transplant, because this machine is doing such a good job."

These days, Wells, 59, travels the country in his RV taking along a sense of humor and his NxStage System One portable dialysis machine. He uses it six days a week, which means toxins have less time to build up in his bloodstream.

On Tuesday, Wells visited Renal Advantage Inc. North Clearwater/Palm Harbor. He used his portable dialysis machine in the lobby while speaking to people coming and going from the dialysis center.

"I got here at 6:30 this morning," Jake Gadson, 54, of Tarpon Springs told Wells. "I've been here five hours. I've been on dialysis two years and haven't thought about home dialysis because I don't like needles."

Wells understood. He doesn't like needle sticks either, but they are a part of any dialysis. To him, the advantages of not driving to or sitting in a dialysis center for hours are worth the tradeoff.

More than 500,000 Americans suffer from kidney failure, including about 21,000 in Florida. The North Clearwater/Palm Harbor facility serves about 60 patients who come to the center for dialysis treatments three times a week and another 22 who use the home dialysis machine daily.

Hemodialysis involves filtering blood removing impurities and returning it to the body. It takes hours. Wells had to quit his job as a computer programmer for Neiman-Marcus when chronic kidney disease dictated he undergo dialysis.

A relative, who is a nurse, educated Wells about the alternative to dialysis at a center. Wells liked that the machine used standard 110 current and tap water. He also liked feeling in charge of his schedule again.

In March 2007, Wells and his wife, Peggy, spent three weeks in training to do home dialysis.

Dan Jeffers, 50, of Orlando, area manager at NxStage Medical, says with a physician's order, the machine and its supplies are covered by Medicare and most insurance plans.

"Training for home dialysis means people learn to set up and run the machine by themselves," said Shannon Castillo, 38, who lives in Trinity and is a registered nurse at Renal Advantage Inc. of North Clearwater/Palm Harbor. "It's less complex than what we use at the center, but a trained partner should be there, too."

With the training complete, Wells planned to take his two grandsons on a road trip in his conversion van. He packed the machine and supplies.

"We started in Texas," said Wells, who lives in Euless, Texas, near Fort Worth. "Drove to Florida and up the East Coast. If I'd had to sit in a center five hours, three days a week, I couldn't have made that trip."

The next time Wells planned a road trip, he contacted NxStage to see if the company would consider paying him to speak with dialysis patients about the benefits of home treatments.

"The machine has given me a better quality of life," Wells said. "I'd talk about it whether I was paid or not. I didn't know if NxStage would answer me, but I got an e-mail from the company's vice president."

Wells said NxStage offered a $4,500 stipend, which he said helped pay for diesel fuel in his RV. That was two years ago. Now he combines traveling for fun with educating people on the benefits of home dialysis.

"I took another road trip last year and met my wife, Peggy, and my grandsons, Jared, 14, and Chase, 12, in Washington, D.C.," Wells said. "I enjoy being active, having control over my life. With any chronic illness, you want to live life as normal as you can."

. Fast facts

To learn more

For more information on NxStage System One portable dialysis machines, visit www.nxstage.com/chronic_renal_care/products/index.cfm

• For more information on Renal Advantage Inc. North Clearwater/Palm Harbor, visit www.renaladvantage.com/locations/florida/

[Last modified: Dec 16, 2010 07:48 PM]

http://www.tampabay.com/news/health/texas-man-visits-palm-harbor-to-demonstrate-home-dialysis-system/1140483
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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
Desert Dancer
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« Reply #1 on: December 17, 2010, 05:44:35 AM »

Tap water??! The NXstage uses tap water??! How does that work? I thought the NXstage used pre-packaged bags of dialysate.  ???
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August 1980: Diagnosed with Familial Juvenile Hyperurecemic Nephropathy (FJHN)
8.22.10:   Began dialysis through central venous catheter
8.25.10:   AV fistula created
9.28.10:   Began training for Home Nocturnal Hemodialysis on a Fresenius Baby K
10.21.10: Began creating buttonholes with 15ga needles
11.13.10: Our first nocturnal home treatment!

Good health is just the slowest possible rate at which you can die.

The glass is neither half-full nor half-empty. The glass is just twice as large as it needs to be.

The early bird may get the worm but the second mouse gets the cheese.
greg10
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« Reply #2 on: December 17, 2010, 06:33:07 AM »

Tap water??! The NXstage uses tap water??! How does that work? I thought the NXstage used pre-packaged bags of dialysate.  ???
One advantage of NxStage is that the water demand is much less than traditional machines.  The NxStage Pureflow system can use tap water to manufacture 50 to 60 liters of dialysate in about 7 hours.  The tap water is initially purified by a replaceable "PAK" which as 6 or 7 filters in series to deionize and purify the water.  The PAK lasts about 2 months under normal operating condition and is good for about 550 liters of dialysate.  Each treatment typically uses about 25 liters of dialysate for the average patient.  The PAK also needs to be primed and flushed for 2.5 hours the first time it is installed, using about 150 liters of water.  Therefore the water consumption for two months of treatment using Pureflow is at least 700 liters of water, which from what I have read is about 10 to 20x lower than the typical Fresenius system.

http://www.nxstage.com/chronic_renal_care/products/PureFlow_SL.htm
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Newbie caretaker, so I may not know what I am talking about :)
Caretaker for my elderly father who has his first and current graft in March, 2010.
Previously in-center hemodialysis in national chain, now doing NxStage home dialysis training.
End of September 2010: after twelve days of training, we were asked to start dialyzing on our own at home, reluctantly, we agreed.
If you are on HD, did you know that Rapid fluid removal (UF = ultrafiltration) during dialysis is associated with cardiovascular morbidity?  http://ihatedialysis.com/forum/index.php?topic=20596
We follow a modified version: UF limit = (weight in kg)  *  10 ml/kg/hr * (130 - age)/100

How do you know you are getting sufficient hemodialysis?  Know your HDP!  Scribner, B. H. and D. G. Oreopoulos (2002). "The Hemodialysis Product (HDP): A Better Index of Dialysis Adequacy than Kt/V." Dialysis & Transplantation 31(1).   http://www.therenalnetwork.org/qi/resources/HDP.pdf
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