Emily, LOL...you made me laugh with your Oscar the grouch comment! Hahaha...You think I am more like Elmo then LOL!! No wait, maybe Big Bird...the back of my head looks like a rooster, kind of birdly like because I have been in bed for a bit now. Thank you for being you <img src="i/expressions/face-icon-small-smile.gif" border="0">
Hi Catherine...I had that problem about a few years back, my diaphragm is non functional so my CO2 levels were climbing, I was on BiPAP and O2 at that time. Ultimately, I really declined (Nov 2004) and was on BiPAP 24/7 without improvement so the docs decided to vent me...this was prior to my CF diagnosis, I have a rare type of muscular dystrophy and since I couldn't breathe on my own, they as well as I thought this was the best course of action.Talk about a wild coincidence...a neuro disease and then the CF diagnosis. Since the vent however, I have been doing well with oxygenation as well as my CO2 levels, when I get really sick, my O2 levels drop but the CO2 levels remain fairly stable. When I first went to a CF center, the staff looked at me like I had five heads...CF folks usually aren't living on vents but they understood once I told them about the neuro problems. I sure hope you get well and get out of that hospital soon, I am pulling for you! I know I used to feel extremely crappy if my CO2 levels were rising, I was sensitive to those changes. My docs at this time feel it is the infection that is making me feel so tired and worn out. I am just fighting all of the time, which I know all of you can identify with....it would be nice to get a vacation from this, even just for a little while. But, I just keep telling myself that this too shall pass and it will and I will feel better, I just have to be patient and let time do its thing. If I continue to feel crappy despite IV's at home, the docs will admit which I do not want, so I am thinking positively.
Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">