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Hi, Bailie!
I'm so, so sorry to hear the latest turn of events. I wish you the best of luck on your upcoming BMB.
One size does not fit with advice so I will tell you what I would be thinking in your situation. For me quality of life is much more important than quantity of life. If I were told I could extend my life a couple of months if I would repeat my 2 months in the hospital, I would go home and fight as best as I could. "Death with Dignity" would be the last thing on my mind. I am too much of a fighter. I would only consider it if they were sure the end is near and I was in un-treatable pain. I would not take any medication that dramatically increased discomfort. I would investigate a hospice. I understand many people have positive experience with that form of care. Fortunately MDS is not a really painful disease. Treatment and infections cause most of the discomfort.
I would not give up without a fight. Have they ruled out DLI or another transplant?
Ray
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