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Old Thu Jul 6, 2017, 05:30 PM
Francisb Francisb is offline
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Join Date: May 2015
Posts: 14
Hanging in there

It's been a rough year to say the least, it seems like I held together while my husband was sick, and fell apart afterwards. About 3 days before he passed, I woke up with the most severe pain in my thumb. I went from there till first of May and not having the use of my right hand before really getting any relief. In between got in to see a neurologist, carporal tunnel in both hands on top of arthritis. The months of March and April I took Revlimid for the MDS. It didn't work. I am disappointed in my Dr. I was in the hospital first of May for fever which turned out to be pneumonia, low platelets, low red blood cells, pseudo gout, this is where I finally got some relief for the pain. A doctor that took care of me when I was in the hospital was the one who came told me there was nothing else they could do for me (She talked to my Doctor). She was very compassionate, but I felt like the Dr. that had taken care of me for 2 years should have been the one to tell me. They talked hospice and home health, of course I took home health because I feel I can live a while getting transfusions. I have done great these last 2 months till last week my platelets got down to 15, first transfusion since May. I am in the process of getting a second opinion. My Dr. has not called me in for a office visit, I have not seen her since before I was in hospital. I have not had another BMB, don't know how they know where I am at without it. Hopefully this new Dr. will do one. I know my diagnoses will not change but hope there is a new treatment out there. And want someone who seems to care. I have not and will not give up. I just live for today and thank God each night for giving me another day. I have never lost my appetite and if it wasn't for the fatigue I wouldn't even know I was sick. Do other people feel this way? My home health nurses are wonderful. I just needed to vent. LOL Thanks for listening to me.
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