Thread: Losing it
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  #9  
Old Tue Nov 22, 2011, 10:33 PM
evansmom evansmom is offline
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Join Date: Nov 2007
Location: Ontario, Canada
Posts: 203
First line treatment without sibling match is ATG, not BMT. Your quality of life is suffering and if you're having low grade fevers, you have the potential to get really sick really quick. You need to bring it up at your next appt. that you have informed yourself and that you now know it is ridiculous to be in limbo like this and that if you are starting to need transfusions and all your counts are low and you are suffering that you insist they find some protocol that describes the proper application of ATG, with prednisone and cyclosporin afterwards etc. etc. You'll have to step up and become a strong advocate. If you are tired, maybe a family member or good friend could be with you at your appts. and bolster you in your efforts to get them to start taking proper care of you.

Tell your docs you're done with the "ignoring the problem plan" and that you need to move on to the "let's do something to fix this plan".
Have an "enough is enough" attitude with them.
__________________
Nicole, mom to Evan (20); diagnosed SAA November 2007, hATG mid-November 2007, no response after 6 months, unrelated 9/10 BMT June 2008, no GVH, health completely restored thanks to our beloved donor Bryan from Tennessee.

www.caringbridge.org/visit/evanmacneil
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