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Author Topic: Opinion: The nightmare of dialysis  (Read 849 times)
okarol
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Photo is Jenna - after Disneyland - 1988

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« on: January 30, 2023, 02:19:19 AM »

Opinion: The nightmare of dialysis
https://pantagraph.com/opinion/columnists/hale-the-nightmare-of-dialysis/article_ef9ad77a-990e-11ed-8102-273272cb66e9.html

Edited: link corrected
okarol, admin
« Last Edit: January 30, 2023, 11:14:32 PM by okarol » Logged


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
SooMK
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« Reply #1 on: January 30, 2023, 01:08:16 PM »

This link got a 404 error but I found it here:
https://pantagraph.com/opinion/columnists/hale-the-nightmare-of-dialysis/article_ef9ad77a-990e-11ed-8102-273272cb66e9.html

It took maybe three minutes to read and it is frightening and heartbreaking. I think of my Mom and what she went through. I'm thinking of my family members and what they may have in their future and I think what I have avoided, so far.

Thank you for posting.

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SooMK
Diagnosed with Uromodulin Kidney Disease (ADTKD/UMOD) 2009
Transplant from my wonderful friend, April 2014
Volunteering with Rare Kidney Disease Foundation 2022. rarekidney.org
Focused on treatment and cure for ADTKD/UMOD and MUC1 mutations.
cassandra
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When all else fails run in circles, shout loudly

« Reply #2 on: February 01, 2023, 06:44:27 AM »

Thanx for posting Okarol. I forwarded the link to some family members and friends  :angel;
Just because I can. I’ve been doing this nonsense for 27 years now, and that’s besides the 13 years I enjoyed my dad’s kidney.


Too late for me for a TX, but Home D (peritoneal and hemo) really are a (not as horrific ) alternative.
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
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