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David79
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« on: November 14, 2015, 11:39:19 AM »
Well I guess I'm supposed to introduce myself here. I'm 36 with stage 4 ckd my kidney disease is kinda rare as in my family is the only one with it. It's called UMOD  or umak. It's a protein that's built wrong pretty much. I'm glad I found a place for questions as I have a ton.
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PrimeTimer
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« Reply #1 on: November 14, 2015, 11:45:28 AM »
 :welcomesign; Welcome to ihd, David79! Pick a topic or create a new "thread" and ask away! There is always someone on here. Best site there is for questions and good company.
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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.
Darthvadar
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« Reply #2 on: November 14, 2015, 11:50:48 AM »
Hello David.....  :welcomesign; to our community.....

Yes, start a thread, and let's get communicating... We LOVE talkers here!.....

Hope to see lots of you...

Darth... Moderator...
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Cared for my late mum, Elsie who had Kidney Failure... Darling mum died on July 15th 2014... May her gentle soul rest in peace....
Vt Big Rig
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« Reply #3 on: November 15, 2015, 05:20:05 AM »
Welcome to the site. Questions,  ask away.
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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
SooMK
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« Reply #4 on: November 15, 2015, 05:35:22 AM »
Hi David, welcome! I also have UKD (it has quite a few names). I'm a year and a half post transplant and doing well. I have two sisters recently diagnosed and there's the worry for the next generation. Hopefully you have been in contact with Dr. Bleyer at Wake Forest Baptist. Pretty much all UKD roads lead to him.
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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 #5 on: November 15, 2015, 10:48:47 AM »
Welcome to the site David

    :welcomesign;


Take care, Cas
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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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