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Used to be, keeping weight on was no problem. In the last couple of months I have gone from being between 120-125 (which is where Duke wanted me) to 109. Not really sure how that happened, but my breathing has sucked most of the time and I think I am just burning tons of calories just trying...

I have a Microlife that gives you FEV1 and FVC, its around $44. I also have a Piko-6 digital lunge function meter, which gives FEV1 and FVC and is about $115. I personally like the Piko-6 a little bit better. I have found it immensely useful to take my readings first thing in the AM...

Brewz, I take advair and it never gives me a problem unless I am concurrently on IV antibiotics. Then I get a nasty case of thrush. I have found, that at least in my case, scrubbing my mouth with Listerine worked really well to get rid of it. But a 3 year old probably wouldnt react well to...

Hi Julie. My FEV1 ranges from 18% on a very bad day to 27% on a great day. It can make that jump quickly in my case because I have a strong asthmatic component. When it is below about 24% I am on 2-3L at rest, 3L at night, and 6-8 for exercise. When I am closer to 27% I can get away with...

Gammaw I posed my question because most of these devices come with a caveat that if you cannot move a lot of air, they will not work properly, or at all. That is why I asked feedback from people with low FEV1 who had actually tried it. Not all airway clearance is created equal and I dont...

Id be interested in its effectiveness for people with very low FEV1 who cant move much air to begin with. Does it still work decently? I supposed you "get out" what you "put in", so let me rephrase- does it work at all for people with low FEV1 and low FVC?

Mike, I am PI, has been confirmed many times throughout my life. When I take enzymes, I get severe stomach cramps, loose nasty stools, horrible gas. With them, I have trouble maintaining weight. Without them, I am fine and maintain weight, and no GI issues as long as I stay away from fat...

Another thing, make sure you're avoiding foods that tend to constipate like bananas, rice, lots of low fiber carbs.

As an update, the IV meds never really did help my FEV1 or FVC. They stayed fairly stationary for weeks until I started on Cayston and then they did the usual immediate jump upward from about 21% FEV1 to about 26%. The increase in sats dropped almost immediately after I stopped the IV. My...

wow, 14 years old. Science REALLY needs to figure out what makes his double delta f508 situation different from other ddf508's who make it much longer. Clearly there are mitigating factors/interactive genes which have not been ID'd. Orkambi works great for some, is seriously harmful to...

Thanks everyone for the feedback. In the past, I've always felt better within a few days of starting the IV's, so this is a whole new ball-o-wax for me. It's reassuring to hear that progress can lag. I wont fret so much about it now! LIttlelab- yes! It does seem like my asthma is worse the...

hey there. So about a week ago I started on IV Meropenem and oral Levaquin. Levaquin didn't agree with me and I spend the first two days with waterfall diarrhea and the next couple of days after that vomiting. Joy and rupture. I switched to IV Levaquin and all was well. So.....I am a...

Boy, I'd sure like to see a study of people who had to stop Orkambi due to severe side-effects and how it negatively effected THEIR outcomes. I never recovered from taking that drug. My Orkambi journey will end with a transplant, if I am lucky.

krickett, I have moderate to severe CF. When children came up, I was 30 and in pretty good health (FEV1 about 85%). My husband and I were on the same page with this; neither of us wanted me to be pregnant and have to potentially chose between my health and that of the baby. So we grew our...

I've used them too, and they do work. They are extra effective if you shower first and put them on right after. A heating pad, depending on the type of pain, can also be useful. Hope you feel better soon!

melissa, my regular eye doc has picked up damage on my scans that he attributes to violent coughing. Just yesterday they found 3 retinal tears and part of my retina was starting to detach. I had no idea anything was even going on! No pain, no floaters, nothing. (but double vision when they...