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Jay, I have had the feeling my husband's doctor dismisses him as being old so it doesn't matter. Not that bad but we feel it sort of when we ask too many questions. Anyway, let your husband know that there are many other people with his illness and each of us has it differently. When my husband's red blood cells are around 8, he feels lower and they do a transfusion of 2 units. I let him decide when it's time to do it.
And we asked for a second opinion and we were refered to Seattle Cancer Care Alliance. We were there in December and slight changes in his regimen. We will be sent there again in coming months in case there is something new for him.
We also attended the AAMDS meeting there a couple of months ago where the great minds researching MDS spoke and we had opportunities to meet others with MDS. A very worthwhile day. These all day meetings are held around the country so check that for more info. Marrowforums is part of AAMDS. At some point I will also call and ask to talk to a volunteer for more info.
Keep reading. It helps. And speak up here. People are very helpful.
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Caregiver for husband
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