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Author Topic: EVERYONE Should watch: Video Presentation from UK Home Hemodialysis Patient  (Read 3028 times)
Zach
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"Still crazy after all these years."
« on: August 13, 2015, 07:21:38 AM »
Queen of Dialysis describes her dependence on a machine | Maddy Warren | TEDxRoyalTunbridgeWells
https://www.youtube.com/watch?v=wxhbkn4H02U

Maddy was a trustee of Kidney Research UK and has been a lay advisor to the London Strategic Clinical Network for Renal Medicine and a member of the national Kidney Health 2032 future strategy initiative. She volunteers as a peer supporter for dialysis patients at Guy’s Hospital and is a passionate advocate for promoting home dialysis and patient independence.
She's been on dialysis for over 16 years.

 :beer1;
« Last Edit: August 13, 2015, 07:28:47 AM by Zach » Logged
Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
cassandra
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When all else fails run in circles, shout loudly
« Reply #1 on: August 13, 2015, 02:37:57 PM »
Thanx Zach

         :cheer:
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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
Vt Big Rig
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« Reply #2 on: August 13, 2015, 03:55:28 PM »
Her attitude is inspiring. Thanks for posting.
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VT Big Rig
Diagnosed - October 2012
Started with NxStage - April 2015
6 Fistula grams in 5 months,  New upper fistula Oct 2015, But now old one working fine, until August 2016 and it stopped, tried an angio, still no good
Started on new fistula .
God Bless my wife and care partner for her help
PrimeTimer
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« Reply #3 on: August 13, 2015, 06:43:39 PM »
Thinking of Maddy Warren will give me a boost and help me help my husband do our next home-hemo session. 
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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
Hootie
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« Reply #4 on: August 13, 2015, 07:34:41 PM »
Great message! We feel same way at our house. Thanks for sharing Zach!
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Caregiver for wife with ESRD and type Type 1 diabetes (almost 50 years).  HHD with NxStage machine January 2015.
Transplanted  December 7, 2016
JW77
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WWW
« Reply #5 on: September 04, 2015, 01:32:45 AM »
Brief touch on 'diet and lifestyle changes'  THAT needs to change internationally to have any effect of slowing/reducing CKD  . Oddly KR doesn't do much to research that.

Nice bit of inspiration porn:)

Still a lot of issues around heamo, you can't travel easily (most units are at full capacity), and privatisation often results in reduced patient care..:)
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Creator of London Kidney Social: https://www.facebook.com/groups/LondonKidneySocial/

Medical stuff, includes 3 kidneys, cancer, meningitis, 1 heart attack and its long and not that interesting! Maybe one day I'll write a book.! `

I have an eclectic taste in music, I fly kites, I read, write, tog, blog and have a bit of a passion for multicellular eukaryotes, and kites.

Founder of Kites4Kidneys - Start making your kites for WKD 2015..
https://www.facebook.com/kites4kidneys
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