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Your symptoms with the runny mucous sound familiar to me; You might be getting acid reflux into your lungs. I had chronic lung inflammation that got worse and worse over a 3 year period til we figured out it might be acid from tummy causing it. So now I take Omeprazole/Losec every day. Its...

Mmm, just that I've read quite a few books on body building, always talking about the steroid induced complications and deaths. I wonder if there are health benefits or would having that much extra muscle on-board put extra pressure on the lungs to power it all.

I take between 8 and 12 creon25k with meals depending on how fatty the meal is

Hey Twist, that CF guy is massive. Is he on the roids I wonder?

Yes its possible. Here's a CF mum who had a heart and lung transplant 17 years ago. She just had her second child aged 36! http://www.independent.ie/irish-news/organ-recipient-defied-the-odds-30130011.html

Bill is right about the full sequence scan. That will pick up all possible mutations. The Ambry CF Full Panel picks up about 100 mutations out of the possible 1800. I will try to explain about 7T/7T. 7T is normal. So the result you've got is just reporting that at that particular site along the...

no problem. sent you a PM!

Hi Emer, Went to University and all that and have worked full time 40 hours a week for the last 15 years. I'm aged 38, lung function is 40%, culture P.aeruginosa, and I go on IVs every couple of months. I'm pancreatic insufficient. I reckon if you're well enough to complete a university...

This is a good point, if the FEV1 drop is sudden, it could be an allergy. Has anything changed in your home? New pet? Mould in the bedroom? Change of season? Also, reflux is another good point of call. You should investigate this. Silent reflux can cause lung inflammation and reduce FEV1. No...

Hi laneyb, Just to let you know we did 8 rounds of IVF and we have two sons to show for it. It was the male side of things that was the problem for us as well. So the fact that you got a positive early test is excellent news. We had about 4 or 5 of those and you just need a bit of luck for one...

It's definitely not Class IV as it is known to be a severe mutation.

I think I have replied to you before, but anyway... ...I also have have DF508/V520F. I'm aged 38, pancreatic insufficient, had meconium ileus as a baby and my lung function is now about 40%. From the little data I've seen, kalydeco, on its own, doesn't work for V520F. But who knows, it might...

CF mutations are ranked into different "Classes" depending upon a number of factors including functionality (how well they function). To get you started: Class I, II or III are usually associated with more severe forms of CF. Example of a Class II mutation is DF508; example of a Class III is...

Simplest answer is maybe its a sinus drip, causing the cough and him trying to move secretions up the trachea by grunting. I kind of do this myself especially when lying in bed at night. It kind of feels like the mucous is below your throat but not in your lungs. He'll know what I mean if I'm...

Thanks for that Dave. Doesn't sound too bad after all. Its good you get to go home and lead a normal life pretty quickly. Note to self: Why didn't I get a port-a-cath sooner and save my veins for all these blood tests? Good luck with the Golf. It would probably be a good way to get fit come...

Dave, congrats, great news. If you get the time, could you let us know what a day in the life of Dave is now like. I'm staring at transplant down the track and I want to know the ins and outs of living with new lungs. How many hospital visits, how many tablets you now take. What things you now...

This is happening because your "suppressors" (i.e. oral antibiotics and/or nebulised antibiotics) aren't working as well as they used to between IVs. Basically you need to control and suppress the pseudomonas between IVs (I'm guessing you culture pseudomonas). This is something you'll have to...

Doing weights can be a reasonable alternative, if you can't face pounding the streets/treadmill. It can be addictive enough and you get a bit of an aerobic workout, especially if you join a gym with all the machines. Plus you see results in about 2 weeks cos you get this nerve learning thing...

Exact same thing happened to me. I had a bowel blockage and I found the NG tube so uncomfortable that I actually puked it up. Yep, loop out my nose, loop out my mouth. And some junk from my stomach all mixed in. I was not a happy bunny. I nearly cried when the nurse said it had to go back in...

I've noticed a big difference since I started Cayston, although I'm taking double the dose (6 vials a day) because I wasn't getting any effect at the lower dose (3 vials a day). My lung function has stabilised and inflammation and tightness have reduced. I've literally gone from puffing hard...