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Member
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Join Date: Oct 2020
Posts: 180
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Member
Join Date: Oct 2020
Posts: 180
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Home from Mayo
Home few hours ago. He showed me X-rays from last year March and this year. My lungs are growing smaller and the last year has been a lot worse. He said my nonfunctional diaphragm is pushing up making them smaller. It frightened both me and my daughter. Now information is appreciated but then he kinda started a big confrontation that I still don’t understand. I finally said after several tries I would leave the room if he did not stop. He wanted me to tell him what final messages were given from my last Mayo Pulmo . I did not understand why really but tried to guess what he was after. None of my answers were suitable per him. He honestly seemed to try to make similar points the pulmo I tried once locally. This was after X-ray info. And then he ordered testing but said To stay on Mestinon. At that point it was a circus. I said my senior pulmo at Mayo wouldn’t do that. I realized I had to come home at least to recover. I was getting worse fast. After the X-ray. View he did mention ALS. I have to regroup. Honestly he liked my daughter more than me. My genius pulmo I had last 2 times at Mayo was always the key to things being sorted and moved forward in a very good way. Like the messed up biopsy thing I spoke of before. He good heartedly said oh I know what happened and he set about fixing it with neuro at Mayo. They did a new more thorough biopsy at my right hip. They learned a lot! I fought for my original pulmo but was told his his lung replacements are his only work now. Sculptor44
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