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Hello So im declining fast, my lungs function dropped from 90% to 45% fev 1 within a few months No antibiotics are working/recovering anything. Also weight is going down fast. I never had any issues witj cf before, not much atleast Its really weird. Its since a year or so. Im thinking ive...

Hey Over one year i have lost 10 kilos (22 lbs) And about 30-40% of. Lung function. Earlier this year i was diagnosed with cfrd and my cf doctors expected an incline in both lungfunction and weight gain because now im gonna be treated with insulin. They basically thought the weight loss and...

Hey everyone, A month or so ago i have been diagnosed with CFRD, I have been walking around with it for 1-2 years without knowing it. It left me really tired and fatigued for those 1-2 years. It also caused me to lose alot of weight withing a year, and a huge lungfunction drop of about 30% fev1...

Hey guys, I always use a noisy and bulky "Porta-Neb" for doing my inhaling medicine, like pulmozyme etc. My neighbours and parents love it when they try to sleep! Also when ill travel it would be nice to have something smaller and easy to carry arround kinda thing. Though Its extremely noisy...

Hey everyone I would love to have contact with any other cf patient. I never have. I love the support from family, friends. But they cant relate to the struggle like another pantient could. I think it will be very useful to have contact with someone whos going through the same battle...

Hey everyone I feel like its super normal to have a lazy ass day, but if u have cf you pay a price for it. I feel like i cant really have a lazy ass day without feeling like shit the next day. I try to workout alot and i do, and then when I take just one, lazy day, one day of being a little...

Hello everyone, im 20 years old, cultured with B.cepacia, and diagnosed with CFRD. I would love to travel to alot of places, my goal is to travel to Brazil this year, I would love to visit the country, though I wanna prepare right. does anyone here have expierence with traveling...

Hey everyone, Im 20 from the netherlands, male I always used to have good lungfunction 90%+ Though at times it would drop and i would get anti biotics and it would recover. Im just out of the hospital. I been there for three weeks. Because my lungsfunction was dropping since half a year ago...

Hey, Im 20 years old and currently in the hospital because my longfunction plus weight declined over a period of 6 months by 30-40% Fev1 and about 8 kilos. Im faced with a rather tough dicision. Basically, after I leave this hospital, my doctor wants me to go to a Rehabilitation center. Where...

Hello people, I read some odd articals on the internet about a doctor called Dr.Joel D. Wallach. He said to have discovered the cause cured and prevention cystic fibrosis in 1978. He says that cystic fibrosis more caused by deficiency of selenium. He said to have proven this, and the experts...

Hey guys, A few days ago I read an artical about clearing techniques to clear out the mucus from the lungs. I never really knew about these techniques. i never really knew that there were breathing techniques that could help you clear your lungs if you have cystic fibrosis. I always used to...

Hey guys, Im 20 years old Normally have good lungfunction of 90%+ Lately my lungfunction is going up and down alot. I dont workout as much as i used to cuz i find it hard to find the motivation to keep at it for some reason. I used to be very persistent with my working out. Now my lung...

Hello guys, Im Rick, 19 from the netherlands I have cf, most common mutation, double DF508. Infected with B.cepacia. I recently saw that Vertex asked for Approval for Kalydeco in eu and Us for the most common mutation. Great news! Hope it will be approved and be available soon! Im wondering...

Hey guys So im wondering, how do you live? Since I feel like im just surviving lately and not able to really live at all since my desease always keeps getting in the way of what ever I do. I dont know how to deal with it. I feel frustrated because all these knew medicines are comming out...

Hey everyone, So I have been infected by the Burkholderia cepacia for a while now. Like a decade. And always it was stable and I was doing good. Just sometimes some drop in health but then just take some anti biotics and I was good again. Now treating this infection is getting increasingly...