I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: celtic warrior on May 10, 2008, 01:45:28 PM
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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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How frustrating Tony!!! I'd want to do this :Kit n Stik; and I bet you do too.
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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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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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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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Find a new doctor ASAP!!! They clearly have no interest in helping. :cuddle; :cuddle; :cuddle;