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Author Topic: Life on Dialysis: A Lived Experience  (Read 2969 times)
okarol
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Photo is Jenna - after Disneyland - 1988

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« on: February 22, 2010, 12:07:49 PM »

Life on Dialysis: A Lived Experience

The objective of this study was to explore the lived experience of patients with ESRD to
determine if they are adequately educated about their illness so as to avoid the possible
complications associated with the disease. Three pertinent conceptual categories emerged
that described the concern in the life of patients on dialysis: 1) life changes on dialysis
with sub-themes of restricted life, limitations, and hard on body; 2) coping; and 3) areas
lacking with sub-themes of health management, education, and preparing the next generation.
Identified deficits among this study group will help healthcare professionals fill
in the gaps in the delivery of healthcare service, which when addressed, would ultimately
ease the burden of this disease on patients and their families.

View the entire 7 page PDF file here: http://www.annanurse.org/download/reference/journal/JF2010/372935.pdf
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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
Bill Peckham
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« Reply #1 on: February 22, 2010, 06:10:13 PM »


I found this article pretty irritating. If you read this in conjunction with the comments about the bundle (http://www.billpeckham.com/from_the_sharp_end_of_the/2010/01/higher-dialysis-doses-for-better-health.html) from people using NxStage, you'd think they were talking about two different diseases but in both cases people are talking about managing their CKD with dialysis.  I need to read the whole paper but from the initial skim I think they're talking about the members of a support group in their community- so I'd say the paper says more about the dialysis in north Texas than it does about the procedure generally.

You can read a lot of the same thing on the discussion boards (see IHD), the thing missing in the paper is the perceived indifference of providers to do anything to improve the situation, something that is underlined when you read people's accounts on the discussion boards. The authors imagine that the docs could improve the situation or holistic nursing,  but they're seeing the shadows instead of the real problem - the dialysis. These dialyzors (aside maybe those on PD) are not getting enough dialysis and have been infantilized by the incenter system.
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http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
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