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Old 01-08-2009, 08:15 AM   #16
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Re: Possible to Raise GFR?

sorry it took me so long to get back here,been busy on other boards here. ya know,this is STILL something that they have never ever been able to explain to us or i don;t think they even actually know or knew,as to how in the heck CHF which he DID definitely have,somehow turned into PSC along just a matter of months. believe me here,you are not the only oe who is confused about this. we have never known that answer. but when they first told us what he had,the PKD and the CHF which can just happen,i did look up the CHF myself in the merck manual and it was dead on target for what symptoms he had,he definitely did have it then. this was oct 99 when we had that blood vomiting episode at school that day and the the Dx of what had been going on and what he had then,but from that oct 99 to may 19th 2000,just months later,he somehow ended up with PSC. about two months after the original nightmare in oct,he started developing some pretty severe left sided pain which his stupid doc just kept saying it should not be that bad,or he should not be having that but never checked into it?? hellooo? she never bothered to just check out his pancreatic enzymes which would have Dxed the dang pancreatitits at least,so he was left to suffer thru this hell. once that pancreatitis set in it was only THEN that he showed ANY signs of actual jaundice too. very strange to me as i had always assumed with ANY liver issues,jaundice would just "be there" ya know? it wasn't at Dx,even as bad as things were at that time. it was that may 19 when we brought him back to the U just becasue he was doing sooo badly at that point. they admitted him on that night and he did not come out til the 1rst of july,thankfully transplanted and doing well.

no he never ever had any other real GI problems which i too had read are usually there with having PSC. this whole thing was just sooo over the top insane,with everything really. when they admitted him,he just was found to,besides having everything else,a really really horrid bile duct infection. this is what eventually led them to that PSC dx. even today,he has never(knock on wood here) had any other GI issues what so ever.

he does have the charachteristic polyglobs of cysts in his kidneys too,but no where NEAR where mine are at right now. mine are loaded inside and out. my right kidney got so freaking huge back in 05 and this was after starting on lyrica(lyrica just made my already enlarged kidneys swell) for my many pain syndromes from my SCI,that my right kidney actually popped out of my back and has been residing in the front of my body running along side my ribcage ever since. its about three times the norm size and i am a very small framed person. ouch.

this has all been one hell of a freaky ride let me tell ya. but my son is doing amazingly well still after all these years with that amazing liver. i DO remeber them saying something about the PSC 'could' possibly come back at some point? didn;t know that one either. i still have to go back into all the research i did and do some updating. as far i know they really don;t have a clue,even now as to what actually is the true "cause" of PSC. it still states it as a rare disease? they got ME hangin anyways. thanks for listening gran. Marcia
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3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
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