Transfusion Dependent
Hello all,
I have been transfusion dependent since my diagnosis is September. I have had 10 Red blood transfusions and more platelets than I can can keep track of. At least one a week on average since my VSAA diagnosis.
I started with Horse ATG in September and have been on cylcosporin since. We are at about 80 days since treatment began. My WBC count is holding strong but my I am still getting Red Blood every 2-4 weeks and plates every 1-2 weeks.
It seems like I am trending less though as my Reds have hung on for 3 weeks (though trending down now) and plates have lasted almost 2 weeks. But my numbers are still in the gutter. 8.6 RBC and 18k plates.
I don't have a related donor but have lots of early non-related matches for BMT. All of these transfusions are making me concerned about my chances with BMT. My doctor will not even consider BMT and is not recommending any next steps right now. He seems like a good doctor but refuses to give me any timeline preferring to say "we just need to see how you are responding to the first treatment".
What do you think? Should I be pressing harder for Rabbit ATG or BMT or am I being premature? It looks like most cases wait for around 6 mos before moving to the next treatment but all these transfusions make me concerned.
I appreciate your input to my case.
Ken R.
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