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Educate yourself
Writer,
What is your H/H pre and post transfusion? Yes, living with MDS can be very frustrating. But if your frustrated now I don't see you dealing with the days, weeks and months of GVHD or other issues caused by the medication you will need to take after a SCT.
Supportive care:transfusion dependency and cleation therapy for as long as possible and watch and wait isn't the worst thing.
I suggest you really TALK and READ about the true experience of SCT. It is not a panacea. My husband is 30months out. He is finally back to the strength and vitality he had 10 years ago. His experience was a walk in the park compared to most and we know it. Often with SCT you are trading one set of medical concerns for another set of chronic life issues ranging from annoying to life threatening. He did not go into SCT lightly. We knew the odds of long term illnesses and possibility of death. But when all three lines are finally affected, Hgb 4-6.0 and other comorbidities are starting to set in then you know you need to roll the dice.
I am sorry you are so frustrated.
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Kris, wife of Rick. DX; MDS/ Ringed Siderblast 5/2006. Supportive care, then Vidaza x 25 mo. HSCT 11//1/11 doing GREAT!
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