Recent content by CrisDopher

You look like you lift, but are your running? Doing core strength exercises? Planks? When I was in my best shape, doing all that, I had a great abdomen at all times.

Yeah, I'm generally gas-free these days, though that took a lot of experimenting to find out what foods to avoid. I don't want to miss out on calories, you know. And my bowel movements still turn the walls brown, but at least I'm not gassing my coworkers anymore.

The only things I didn't do with PICCs in were swimming and climbing. Beyond that, anything goes. (Docs may recommend against weightlifting with that arm). I even ran half-marathons with my PICCs in!

I have declined fairly quickly. From being a runner with FEV1 in the 50s to being unable to run, FEV1 under 20, and on oxygen full-time has been less than a year. In fact, I was still doing "fine" at my birthday last September, but a few months and a couple of bad exacerbations later, and I...

I'm in the transplant boat, too, and finding exercise more and more difficult to sustain, but I am keeping active. Right now I get the most activity commuting, which involves quite a bit of walking, even with bus and subways factored in. It IS hard, but I feel proud I can still do it. I...

Extremely well-said Steve. You encapsulated a lot of my thoughts exactly, especially as concerns the court decision. As for you, Albino15, the fact that you would bring such flaming and unhelpful rhetoric to this forum disgusts me.

People w/ Cystic Fibrosis Related Metabolic Disorder have at least one CF mutation, sometimes (not always) two. The CFTR protein doesn't function perfectly in them, or seems to function fine in some areas, not fine in others. This is a new area between CF and carriers that is only just now...

Fantastic! Keep up the good work! You'll be running 5Ks in no time.

I took the day off and slept most of the day.

I am alarmed that your doctors are not taking action on this quickly or effectively. Your first phone call Monday morning should be to your CF clinic and ask for a blood glucose stress test to be set up, or some other confirmation diagnostic test. They CANNOT tell from a single blood test...

Well, if he's so far got normal lungs and doesn't seem like every cold turns into two weeks of hospital (they didn't for me in childhood and still don't BTW), and has a normal immune system, then I say throw him in with the other kids w/ sniffles. You do him no favors by over-protecting now...

This sounds like CFTR-related metabolic syndrome. If you can get this diagnosis, then you should be seen regularly at a CF center to help handle the CF-like aspects.

I'm sorry, I may have missed something here, Heidi, but does your baby have a suppressed or weakened immune system in actuality? Does she have pronounced lung involvement or a history of chest infections? If not...if you're just being proactive because she has CF, then you may be...

I haven't, though that doesn't mean such a thing isn't currently transpiring. Generally, only patients who will benefit from Kalydeco are on it. Also, Kalydeco isn't going to reverse previous lung damage. If your PFTs are within transplant range, Kalydeco is unlikely to boost them much...

Hi! Welcome to the world of cystic fibrosis and to one of the tightest, most knowledgeable communities in the world. If you'd like to join an email list, I'm the moderator of the cystic-l google group. You can track us down and apply for membership at...