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Author Topic: UPDATE!!  (Read 1664 times)
celtic warrior
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« on: May 10, 2008, 01:45:28 PM »

Just a quick update for those of you that know about Maria`s condition.

After a rather IRATE phone call to the center, they phoned us back the next morning with the following reply. Please understand that this is a very shortened version of the reply.

"YES we know Maria has Goodpastures,,YES we know that the tests have shown negative for Months,,,,YES we know that it has now increased X15 ,,, YES we know you are concerned,,,,YES we are monitoring it" NO we aren`t going to do anything, WHY should we? It is a Kidney specific disease,,, and as you know, she has no Kidneys left!! , so why bother?"  Knowing the facts about the mortality
rate with Goodpastures,, I think there is a DAMN good reason to bother.  :rant;
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monrein
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Might as well smile

« Reply #1 on: May 10, 2008, 01:53:13 PM »

How frustrating Tony!!! I'd want to do this :Kit n Stik; and I bet you do too. 
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
stauffenberg
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« Reply #2 on: May 10, 2008, 03:25:12 PM »

The statement that Goodpasture's Disease is "a kidney-specific disease" is absurd, since its hallmark is that it attacks TWO organs, the kidneys and the LUNGS.  A flare-up of the auto-immune response in Goodpasture's requires either plasmaphoresis to reduce the anti-body level in the blood or additional immunosuppression, or both, but not passive watching and waiting.  I hope you are not just letting the nephrologists handle this case, but have immunologists working on it as well, since the latter take a broader and more accurate view of the problem.
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David13
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A meow massages the heart.

« Reply #3 on: May 10, 2008, 04:33:30 PM »

Seems as though you need to find medical help from a provider who actually wants to do something about assisting the patient.  When all they can give you is excuses, it is time to move on.  Having an illness is enough of a burden without having to fight your medical provider every step of the way as you go.
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“The first human being who hurled an insult instead of a stone was the founder of civilization” - Sigmund Freud
Sluff
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« Reply #4 on: May 10, 2008, 09:06:19 PM »

To be frank about it, to hell with them there must be better healthcare providers out there. I agree with Stauffenberg on this one.
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paddbear0000
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Dogs & IHDer's are always glad to see you!

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« Reply #5 on: May 10, 2008, 09:21:30 PM »

Find a new doctor ASAP!!! They clearly have no interest in helping.  :cuddle; :cuddle; :cuddle;
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Diagnosed type 1 diabetic at age 6, CKD (stage 3) diagnosed at 28 after hospital error a year before, started dialysis February '09. Listed for kidney/pancreas transplant at Ohio State & Univ. of Cincinnati.
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