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I am 61 yrs old. and was dx with late stage emphysema about 3 yrs ago, was told I had a 20% chance of being alive in 4 years. I have been on continuous oxygen since that time and 30 mill of prednisone daily. In the last 2 years I continued to decline, and I retain co2, being on higher oxygen saturation made my breathing worse, we lowered it to 1 and I did a little better but still bad, My oxygen saturation has always dropped down in the 5o's highest it gets most times is around 77 which I am comfortable with at that. I was told to get my affairs in order by my pulminologist and pc Dr. So I went on hospice, Hospice takes very good care of me and glad I decided to go on it, except I was told that after so much time i had to show a decline ( with medicare) I can't get out of bed hardly but to walk a few feet to bathroom then it takes me 20 minutes or so to get enough air to go back to bed, have not been out of the house or got dressed in months bedridden and taking small doses of morphine, Although bad, I kind of plateaued. Does any one know if I don't continue to decline even with my symptoms can medicare require I end hospice? I also had a catheter because of incontince now too. Any help or ideas would be helpful. I live in Oregon and can't find a good forum other than here in the UK.
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