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Author Topic: Who's got EPS?  (Read 1743 times)
carson
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« on: July 29, 2011, 10:09:23 AM »
Encapsulating Peritoneal Sclerosis. Anybody have it? I was just diagnosed with it, in it's very, very early stages (thankfully!!) I'm curious to know how many PD patients on here developed it as the information I've gathered says something like 3% do. I'm being treated with Tamoxifen and prednisone, supposedly this combination helps prevent further damage.
Love to hear from anyone who has it. Thanks
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2009 infection treated with Vancomycin and had permacath replaced
2009 septic infection that wouldn't go away
2007 began Nocturnal Home Hemo with Permacath
1997 began Peritoneal Dialysis
1982 had cadaver transplant
1981 diagnosed with GN2 and began Peritoneal Dialysis
carson
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« Reply #1 on: July 29, 2011, 12:08:58 PM »
Nobody? This kills people and nobody on this forum knows anything about it? Wow, I'm shocked!
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2009 infection treated with Vancomycin and had permacath replaced
2009 septic infection that wouldn't go away
2007 began Nocturnal Home Hemo with Permacath
1997 began Peritoneal Dialysis
1982 had cadaver transplant
1981 diagnosed with GN2 and began Peritoneal Dialysis
*kana*
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« Reply #2 on: July 29, 2011, 01:58:55 PM »
Sorry to hear that you have one more thing to worry about.  I have never heard of it.

I'm going to go look it up......
« Last Edit: July 29, 2011, 02:06:45 PM by *kana* » Logged
PD started 09/08
PKD kidneys removed 06/17/09

Failed donor transplant-donor kidney removed,
suspected cancer so not used 06/17/09

Hemo 06/2009-08/2009

Liberty Cycler-11/09-5/13
Nx Stage-current tx
Diagnosed with SEP 2014
MooseMom
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« Reply #3 on: July 29, 2011, 02:05:23 PM »
I read about this on Renal Fellow Network several months ago.  Here's the link...

http://renalfellow.blogspot.com/2011/03/failure-to-thrive-on-pd.html
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
jeannea
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« Reply #4 on: July 29, 2011, 02:55:53 PM »
Wow. I'm stumped. Nobody ever mentioned it to me. I'm on PD.
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Riki
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« Reply #5 on: July 29, 2011, 07:51:05 PM »
I've never heard of it either.. I was on PD for years

Ohhhhh... *after reading MooseMom's link*  thickening of the membraine.. I was told of that.. never happened to me, though.  I just developed a nasty infection that scarred the crap out of it
« Last Edit: July 29, 2011, 07:53:49 PM by Riki » Logged
Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
dialysis - May 2004-present
PD - May 2004-Dec 2008
HD - Dec 2008-present
cariad
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What's past is prologue
« Reply #6 on: July 29, 2011, 08:03:42 PM »
Someone on here has had it because I know I have read about this. It was someone British, someone who said that if he had known about this possibility, he never would have allowed them to place another Tenckhoff and would have just gone straight to hemo. I think he spent almost a year in hospital from this. I would do a search on the site and see if it comes up.
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

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AguynamedKim
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« Reply #7 on: August 10, 2011, 07:37:34 PM »
Carson, been thinking about you. How are you doing?
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