Recent content by Cubs fan Brian

Just one week left in my second month on Orkambi and the really bad side effects have died down but I'm having a hard time with activity. I have to go pretty much in slow motion or else I end up getting light headed and need to sit down ASAP. At least once a week the digestive issues come back...

Ever so slight increase for me with the FEV1% today. I made it up to 34%, which isn't very good but I'll take it for now. I was at 33% back on July 20 and the doc had me come in for a 11-day "tune-up" session. I am definitely still breathing better today than I had been the past couple of...

I'm feeling closer to "normal" today than I have since I began taking Orkambi one day shy of 3 weeks ago. Still need to take things slowly but haven't had the constant shortness of breath and fatigue nearly as badly today. Fingers crossed that it stays like this for tomorrow when I have my...

I've got to say, that your story does give me a bit of hope, cjones. I'm 2 and a half weeks in on the Orkambi myself and it is still just kicking my butt. The fatigue and shortness of breath are what have been the worst for me. I haven't been able to go to my pulmonary rehab workouts because...

Thanks for the encouragement. It's definitely an odd road this stuff has sent us all down. I wake up in the morning and the first thing I think of is, "Well, what's it going to be that is kicking my butt today?" Well, unless it's obvious that it's going to be the GI issues, then I high tail...

I'm still trying to stay positive but I've been on Orkambi for two weeks today and it is still just kicking my butt. Fatigue, very light headed, pretty much an every other day bout of the runs and my pulse seems to want to really race whenever I make a move that is even close to out of the...

That is a great idea! Got the same dilemma here with these things.

I've noticed that I haven't been eating as much but I think it's more because of the fatigue than anything else, for me anyway.

I was diagnosed as an infant, Julie. They couldn't figure out what was wrong with me and an intern asked my mom if she could think of anything at all that was odd. She told him I tasted salty when she'd kiss my forehead and that triggered them to do the salt test and get the diagnosis that...

I'm right there with you, Julie. Not really expecting a huge improvement in my FEV1 but to be able to at least stay stable would work for me right now. I was diagnosed in 1968 and grew up hearing how I'd probably be fortunate to make it to my teen years, adulthood, etc. so I'd like to see just...

Wyoming, Iowa here. Very small town, probably 500 people or so.

I started taking Orkambi on 8-14 and so far it's been a rough trip, just like that many others have posted. The runs something awful, shortness of breath and absolutely dead dog tired pretty much constantly. Those effects are gradually getting better but it's still at the point where I sort of...

Gender: Male Age: 46 Weight: 167 Height: 5'10"

I don't really have a set sleep pattern. Well, other than I have to get up at around 3am because the kitty wants lovins....... that's ok, usually have to go pee then too. I guess I probably get 6 or 7 hours a night. Sometimes I end up taking a nap during the day too, that's usually on days...

Mine was 36% at my last testing, in April. It's stayed relatively stable for the last couple of years. I'm not on oxygen, my saturation is usually in the 93-95 range. I just have to take things really slow anymore or else I completely run out of breath and have to use the nebulizer or...