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Gender: Female
Hometown: Miami, FL
Member since: Wed Nov 10, 2004, 10:15 PM
Number of posts: 3,073

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In a pretty purgatory (update)

Home now for just about 8 weeks. My living room/bedroom suite that my amazing friends created (I can see the bay and the birds) has worked out perfectly. Most days are filled with delicious food and wonderful visitors which can be overwhelming but I'm grateful for every visit. I'm either in bed or in my lounge chair (I have to get there by a special lift because of the paralysis). I don't go out really except for a weekly trips to the hospital for a blood transfusion. 24/7 care now needless to say.

The thing is, I'm not getting better. I'm worried that the transfusions going to start coming more often which could mean eventually, they're just not working at all. They're barely working now. My red blood count drops from eight or 9 to 5 or six within a week.
I'm coughing a lot from- well actually I don't know where the coughing comes from but it can be relentless not to mention annoying when it happens just after eating or taking medication.
And then there are the fevers, which come every day usually in the afternoon and they are furious-102 or 103, barely responsive to Tylenol so usually I am being iced down a few times a day to bring it down to normal range. Between the transfusions and the fever it's all totally exhausting.
No idea how long I can go on like this which shoe will drop next, what to expect etc. Hospice is being great although I'm still hoping we can find something to try some treatment just to prolong my remission since cure is impossible at this point. It may be too late.
Anyway thanks to you all for being there and listening. I'm not done fighting but I'm get definitely getting tired..
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