My chronic MDS journey, symptom managment
I thought I'd follow suit & start my own thread. The brief run down of my story is in my signature below. Thought to start a journal type thread, might help someone else, but I'm doing it for me too. I haven't been here for a while, trying to forget about my intruding MDS but it doesn't seem to go away! Grrrr...
Fevers right now. Long week of trying to stay out of hospital this time. I get them a couple times a year. Unknown cause. Except for once when I developed a nasty pneumonia in my digestive system. Strange thing is my neutrophils are at an ok level, but I've been told they are just not working well.
Anyway, today is day 5 of fevers & I'm still here at home. Have more tests & appts on Monday. Hope I can sleep better tonight. Nights are worst, waking up feeling ill & cold & drenched in sweat. Not a nice feeling but it's a common experience for me. May have to live with this a while longer, no sure. Looking fwd to my specialist appt to see if transplant is a good thing to plan for in the near future. I just want my life back.
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Julie (38yrs); dx AA 1996 & treated w/ATG, cyclosporine & G-CSF; 2010 dx int-1 secondary MDS, low platelets, on prevention antibiotics, fevers of unknown origin, MUD found for BMT when the time is right, which is now! MDS transformed to AML after many infections.
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