Thread: help?
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Old Tue Mar 20, 2012, 08:40 AM
misscakes misscakes is offline
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Join Date: Nov 2011
Location: Savannah, Georgia
Posts: 17
Unhappy help?

had ATG the first week of january. it was the absolute worst experience of my life. had a heart attack-the Medical Emergency Team had to rush in to monitor me. had these horrible horrible headaches that left me sobbing for hours that often required multiple doses of morphine to allow me to sleep thru.
anywho, i know it can take up to 6 months to show improvement. but at this point i'm not sure i even know what improvement is! my doctor has never done ATG again and told me recently that he would never do it again. he cant answer any of my questions. we kept playing musical dosages with my cyclosphorine. first it was 300 a day. then my kidneys and galbladder stopped working so we cut it down to 250. then once i left the hospital they called and told me not to take it again for three days and then only take 100. then we moved it back up to 200. then two weeks ago we went back up to 300. then it started again with the horrible cramps, chest pains and return of the headaches. sooo...i stopped taking it. at my next doctor's appointment i told him i had stopped (i assumed he would be furious) but he just said "oh, ok. are you just not going to take it anymore?" i asked him if it was absolutely necessary and he said to be honest, he had no idea why i'm supposed to take it. that he had tried to look it up online and couldnt find any answers for me. he says he'll call a lady at emory in atlanta and get back to me but in the meantime just dont take it.
i see all the classifications of VSAA,SAA,MAA and i have no idea which one i am. and obviously my doctor is not familiar enough with any of it to help me out. right now i just feel exhausted all the time. i work 55+ hours a week and dont have energy for anything else. i'm beginning to feel like i'm wasting away. this past week i've just been on autopilot. my husband is worried about me. my bones hurt all the time.
i just dont see a light at the end of the tunnel anymore.
__________________
Kimberly; AA patient; diagnosed 10/11; ATG 01/12 with cyclosporine
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