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I really cannot speak to the MDS but I'm sorry to hear about the doctor's poor bedside manner. Is there not another hematologist in his HMO? I think it's very important for your healthcare team to provide a reasonable level of hope and offer solutions.
Is he off all treatment except transfusions? Can you go to his appointments with him to address specific issues with the doctor. We kept copies of all lab results pre-diagnosis and post. This way you can see trends, see exactly what they tested for and see the results first hand.
A second opinion is in order and I would not hesitate to get one even if you have to go out of network for it. I think this doctor made up his mind early on that your Dad was not going to improve and is not giving him the full attention he's entitled to.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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