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Yes, fatigue can be a major part, at least for me. I sleep from about 10pm-7am, then usually take a 1-2 hour nap during the day. Often I am still quite tired. Granted, my sats have dropped recently and my FEV (59 to low 40's) so I'm sure that plays a major part. But starting about 6 months...

Leah, have them be ready with a glucagon kit in case you start feeling funky. Thats the best for severe hypogycemia. I carry an emergency pen with me.

Shay, that certainly makes sense. I was just curious, since I always thought a good manual PT beat everything else (and I cant tolerate the vest). That's a nice approach, to break it up, so to speak (FART2)

Hey, hows the nutrition challenge going for you?

Yes, I too can understand it both ways. I had to give up going to symphonic concerts years ago because I could not control my coughing adequately enough to be there (and WHY do people feel they need to bathe in perfume to attend symphony?, but thats another topic). Anyhow, I take pretty...

Tag away nmw0615!!!!!! The more, the merrier :D

That was lovely!!!! I find it interesting that you were doing manual CPT, instead of vest. May I ask why?

Hi. I'm going to be traveling a fair amount this year and need a portable oxygen concentrator that MUST go up to 3L continuous, preferable 5L if that's possible. Also looking for lightweight and durable. I'd love it if folks would chime in with advice!!! Thanks so much. ;)

I had a very bad case of pseudomonas A. as a child for years and then after hyperal did not test positive for it for the next 30 years-- up until this year when I started on a chemo drug that majorly beat down my immune system. To me, that says that people with CF can fight off PA in certain...

The dot. yes, I agree that the vest is probably superior to manual CPT, but not everyone can use the vest. The times in my life where I have tried, my ribs kept breaking, even with it turned way down. They didnt actually break while using the vest, but vesting really seemed to weaken them...

I havent been in the hospital in decades (I refuse to stay "in-house") but when I was, I remember the RT's often being literally hours late for our scheduled time. Meaning, of course, that the nebbbie had completely worn off. Often after a few complaints to the head nurse and my doc, they...

I've been using 02 at night and I definitely sleep better and have a lot more energy during the day. The downside is that since I'm not getting up every hour or two, when I wake up in the morning, my lungs are a LOT more congested since I havent been doing as much hacking during the night. I...

OK, thanks. I'll look up marinol. :)

Kenna2 I'd like to hear more about this MJ pill..... I have always used hydrocodone (chewed it up to make it work faster) for coughing fits. Does the MJ pill work better? faster? any basis for comparison? Any side-effects?

Yeah, I hear you. Smokers piss me off. A LOT. Folks often seem to think I carry the plague. I set them straight.

I get my vitamin D via the sun and vitamin D lamp. Seems to be working since my D has been hanging out around 50 and before I started consciously getting sun and using the lamp it was too low.

I was very sick as a child, then at about age 10, started to do a little bit better. Had another bad phase around 14-17, then did much better. Kept my FEV around 80-85 until late 20's, when I started breaking ribs from coughing. Also became a parent then. Over the next 5 years or so, there...

Beccamom. I was a very well known CF center and they did NOT catch it since my A1C was fairly normal. My bimonthy glucose test was also normal, but it was because I always had my appt around 1 pm and hadnt eaten since 7 that morning.......so it never tested high since it had close to 6 hours...

Yes, I had CFRD, and needed at least 3 insulin shots per day immediately. Good luck figuring it all out!

I presented with similar symptoms with I was developing CFRD. High WBC too, SOB, serious fatigue, low-grade fever, no obvious infection, oral and IV antibiotics didnt really seem to help much, nothing in sputum to explain it, and a big drop in FEV1 in short time and a big drop in sats. My...