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Old Sat Oct 8, 2011, 05:32 AM
Karenish Karenish is offline
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Join Date: Feb 2011
Location: Stafford, United Kingdom
Posts: 100
Hi Pvinod,
no I am still needing transfusions unfortunately but I believe that these are becoming less frequent. for example platelets once every two weeks. and blood once a month. However my iron levels are very high and I took exjade for a month and have developed a blind spot on the eye so have had to stop until i see the eye specialist (i am self prescribing green tea extract and wheatgrass - natural iron chelators).
Sometimes I believe that the bone marrow can be slow and all of a sudden increases the blood production but the correct protocol is for the doctors to do a second bone marrow biopsy to see if the marrow has changed its cellular activity in any way which is why you must insist they have a look for your lovely daughter!! If there is no change at all that it can be assumed that the atg has not worked and they then normally will give another atg or go for transplant if your daughter has an exact match.
Unfortunately for me I have many things going against me, my brother was not a match, I am nearly 52 years old!!! I know you may feel you are bullying the doctors but this is your right! you are the customer! If it helps take some prints off the internet of the protocols when treating AA. Good luck and god bless xx
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