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Author Topic: Texas Nurse Rethinks Kidney Care  (Read 1598 times)
okarol
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« on: November 17, 2008, 04:34:02 PM »

Texas Nurse Rethinks Kidney Care

By Wendy Bonifazi
Monday November 17, 2008

The car accident that laid Cindy Barclay, RN, flat on her back for a year also laid the groundwork for an innovative nursing service that takes renal dialysis out of hospitals and outpatient centers and into Texas patients' homes. Her latest innovation is educating patients through what she calls a "medical novel."

Barclay, then a clinical nurse manager at M.D. Anderson's acute dialysis unit, was called in one night to stabilize a critical transplant patient. She remembers stopping at a traffic light en route home, then regaining consciousness hours later with a broken back, two daughters to support and no other local family.

"The medical profession actually does stick together, and you're recognized and appreciated if you do your best," says Barclay. Physicians she'd worked with stayed in touch, and one told her about a Department of Health program to start medical businesses.

"Since outpatient facilities wouldn't take patients with trachs, cancer and other special needs, they stayed in hospitals, adding to devastation and despair as well as costs," she says. "At the time, Texas permitted technicians to provide home dialysis, but they weren't equipped to take these patients either."

Barclay founded Quality Dialysis One, with offices in Dallas and Houston, to meet the needs of clinically complex patients as well as those with cancer, other critical conditions and debilitated elders. It allows patients from Austin to Dallas to stay home with family and friends, and is less expensive than hospitalization and ambulance trips.

"After we initiated home dialysis with nurses, several companies followed suit. Texas now requires nurses for home dialysis, although some states still permit technicians," she says. "Nurses can push drugs and keep patients going if they code. Our nurses stay there throughout the three to five hour dialysis treatment, and afterwards until patients are hemodynamically stable."

Each patient has their own dialysis machine, carbon tanks and reverse osmosis tanks, covered by Medicare and other insurance for durable medical equipment. It remains unless they decide to terminate treatment, have a transplant or die. Patients can receive treatment wherever they live, including assisted living and skilled nursing facilities.

"Since it's one to one care, they have plenty of time for patient education about their disease, dialysis and possible transplant," she says. And unlike clinic training for those doing self peritoneal dialysis, nurse teach patients in their home environment, where they know what's available and where it is. "Everyone isn't teachable, but many are competent to do peritoneal dialysis on their own at home if we invest enough time in education."

Barclay invested two years in her 200-page book, "That Damn Dialysis." "There's a real education deficit among patients, including the newly diagnosed and transplant patients I saw in the hospital," she says. "They needed something at their own level, in layman's terms, to understand the kidney disease, failure and treatment. Transplant is not a cure-after an average of five years, they need another. The disease process is very serious, and I wanted to add fun."

She added the entertainment to education by writing in the "first-person" of the fun-loving fifty-something Cledus B. Washington, Jr., who pulls no punches whether he's talking about his gym routine, love life, or the fears and frustrations of his disease.

"It's a project of love for community education, not profit," she says. "All Quality Dialysis One patients receive a free copy, and I drill them on it. Otherwise it's sold online, but if someone can't afford it, we'll send it."

She wanted the book to be representative and all-inclusive, so designed Cledus and his friends to represent the epidemic of kidney disease among African Americans and Latinos. Thanks to Cledus' curiosity, we learn the home countries of a virtual United Nations of nurses from Jamaica, Canada, the Philippines, a black man from Holland and other countries, including dialysis nurses she met in Germany and Switzerland. Other characters are composites of people she knows, including Drs. Killjoy, Quickslaver, and one Cledus nicknames "Eye-Candy."

When patients ask if the people are real, "I leave the mystery to them," says Barclay, including whether or not she's Cledus' love interest, dialysis nurse Cynthia Jones. Their story will continue in the sequel she's writing for publication in mid-2009. That's when she's opening additional offices in outside Texas. "I want to show different states how to do this," she says. "It's important to share wisdom and knowledge."

http://include.nurse.com/article/20081117/SC02/111170098
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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
David13
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« Reply #1 on: November 17, 2008, 04:36:35 PM »

Great idea!
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Meinuk
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« Reply #2 on: November 17, 2008, 04:41:21 PM »

Dialysis with Nurses at home???  Can anyone say NxStage???  Welcome to the 21st Century, come and join us!

Good idea on the Novel though...
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Research Dialysis Units:  http://projects.propublica.org/dialysis/

52 with PKD
deceased donor transplant 11/2/08
nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

“To doubt everything or to believe everything are two equally convenient solutions; both dispense with the necessity of thought.” - Henri Poincare
jbeany
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« Reply #3 on: November 17, 2008, 09:13:23 PM »

I think it would be great for those who want to do it at home but don't have a partner available to have this option.  One of NxStage's questionnaires asked about the need for "respite" care for the partner to be able to take time off.  It would also be great for people like my friend Dan from my center.  He would love to do dialysis at home, and stop the long drive to center.  He's seen how much better I feel, and would like that as well.  Even though he's reasonably young, and would be mentally able to do what was needed, he's partially blind, and couldn't do everything needed by himself.  His wife is equally willing to help, but has arthritis in her hands to the point where helping with needles and small vials of meds would be impossible.
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.

Meinuk
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« Reply #4 on: November 18, 2008, 04:53:02 AM »

I agree with you Jbeany, using NxStage, but the Texas program is not using the simple portable machines, they are retrofitting RO tanks and the big in center machines.  My question is WHY?  Seems like a waste of money to me.
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Research Dialysis Units:  http://projects.propublica.org/dialysis/

52 with PKD
deceased donor transplant 11/2/08
nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

“To doubt everything or to believe everything are two equally convenient solutions; both dispense with the necessity of thought.” - Henri Poincare
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