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Author Topic: Anyone out there with Goodpastures Syndrome?  (Read 2927 times)
msleeter
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« on: January 13, 2009, 02:18:44 PM »
I was diagnosed with Goodpastures Syndrome in October 2008 and apparently it is pretty rare.  Many of the medical staff I have interacted with have never worked with anyone with it.  Just wondering if anyone else has any experience with it.  Other than the standard information I have found on various sites (and it all says the same things), it would be good to connect with someone who actually has it.

-Mark
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Hospitalized October 6, 2008 (kidney biopsy October 9)
Diagnosed with Goodpastures Syndrome October 13, 2008
Started on chemotherapy & plasmapheresis October 13, 2008
Started on hemodialysis October 18, 2008 in hospital
Hemodialysis in center October 31, 2008
Re-hospitalized November 19, 2008 for more plasmapheresis treatments
Re-re-hospitalized December 3, 2008 - 2nd kidney biopsy done
kitkatz
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« Reply #1 on: January 13, 2009, 02:23:50 PM »
http://ihatedialysis.com/forum/index.php?topic=3152.0    Try this link.
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
G-Ma
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« Reply #2 on: January 13, 2009, 04:04:13 PM »
Or type Goodpastures into the search line and all posts about it will come up for you to look at.
Ann
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
Sunny
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Sunny
« Reply #3 on: January 14, 2009, 12:05:32 AM »
Welcome to the rare Goodpasture's Disease Club. You are not alone. 1 in 1 million get it and nobody knows where it comes from.
I had Goodpasture's Disease in 2001 and live to tell the tale. You can too. Hope your treatment is going well. I'm happy to answer any questions.
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Sunny, 49 year old female
 pre-dialysis with GoodPastures
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