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WELL... I'm glad you asked. My husband is one of those guys who always "feels great" when he sees the doctor. Mr Cheer and Joy. Don't want anyone to see that you nap every day and your appetite is waning.
He lives for Hockey, so he told the specialist he wanted to play and was told he could play as long as his platelets are above 40. So he gets monthly blood work now.
Interestingly enough, he has a 100% bone marrow match with his brother. I thought that meant he would do a transplant, but the specialist and my husband decided that "if he's feeling fine, why bother", plus there is a 20% chance he could die from the transplant.
My thinking is that I feel like he is driving around on bald tires and they are just waiting for him to have a major blowout before they will do anything. And then at that point, he'll be so sick, how will he survive a transplant?
I don't like that AT ALL, but my husband is very stubborn and thinks he can just go along like this forever. Even though I see him getting thinner, and more frail every day.
What causes MDS to transform to AML? I've googled everything I can, he has had chronically low platelets (44-94) since he had a crisis in 2008, but wasn't diagnosed with MDS until 2015 with Biopsy because I insisted. I notice a few signs lately, he looks "drawn" and fragile to me, he eats waaaay smaller portions, but spleen doesn't seem to be swollen, but I read that it doesn't always swell (outward).
I'm trying very hard to be supportive, but I have to respect his wishes and he doesn't want to go to transplant because he feels "fine".
That being said, the Specialist called him a few weeks ago out of the blue and said he wants to see us in Vancouver in February. So maybe he's going to suggest we proceed with transplant. Who knows?
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