Search results

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    scared for my future

    Hello chrissy, I can relate to u, its a difficult routine to keep up It takes time and effort to do all these medicine. I think its a good thing that u regonize your own behavior of not doing ur meds, like u said u know urself, and u see how its a problem and u should change this behavior...
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    Anyone knows?

    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...
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    Orkambi Success

    Hey, Good to hear ur positive results with the drug. With my lung function shot up 14 points, u mean 14% fev1 increase? What was your lungfunction before you started orkambi? And how long did it take to start feeling a positive difference? Did u also go through that first "hell week" of...
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    other inhaled antibiotics?

    inhaled ceftazidime is also possible, ask your doc about it. ive used that before.
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    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...
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    Mystery illness - seeking opinions

    U could have cystic fibrosis along with CFRD which is diabetes as a complication of cf. Yes u should get tested pretty soon. Heart problems could also explain ur fatigue and shit but that doesnt really explain your digestive issues and your lung problems. Cf however does explain all the...
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    Orkambi is approved!

    Hello guys, Great news! For the people in the us atleast! How about people in europe? Is it approved there yet? Or we have to wait?? Hope anyone can tell me
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    Help with CFRD

    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...
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    Cystic Fibrosis teen drop out?

    Hello, I like to disagree with most people on here saying school is a big deal. Its not. Unless ofcourse you have some profession as a goal, and need your get your degree for it. But it sounds like you dont, in fact u dont like school and probably dont really know what you want. So quitting...
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    Doing meds

    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...
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    Just so tiredzzzzzzzzzzzz

    YeS! You should definitly get an exteneded diabetes test asap. I have been very tired and fatigued for a year. Then my lung functions and weight started dropping They didnt know why. Then i went to a different hospital for a second opinion and they did an extended diabetes test with an Ipro2...
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    International Travel

    Hey stephan, My lungfunction at this moment is 65% I know its best to avoid any risk factors but i wanna live aswell, and see places... How are you doing since kalydeco? What differences do you feel? Hope it be here soon for my mutation as well!
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    Online Contact

    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...
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    International Travel

    @melissa75 @stephan @jakeS @Katarzyna-Antosz Thanks for replies and tips! I now have one more concern about traveling to big cities... Poluttion! Pollution in rio de janeiro is super high. How have guys expierenced pollution? Did u feel it effecting your lungs alot? I really dont want this...
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    Keeping healthy balance

    Hey aboveall Thanks for the reply Its a good tip, to try and be lazy in other areas. Ill have to think about it. I find that cf takes up alot of time and things u have to do. Sometimes i just feel like **** it, like i want a break. But there is no room for that. But maybe in other areas there...
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    Keeping healthy balance

    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...
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    International Travel

    hey thanks for the replies! thanks for the great tips. I wont go to unpopulated areas. im planning to go to rio de janeiro my plan is also just to use wifi while im there. I knew going to public hospital wont be good idea, but im just wondering, what if I get sick? should I just make a plan...
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    International Travel

    Hey Twistofchaos, Thanks for your reply! my saturation is always between 93% 98 % so that should probably not be a problem, but ill disguss it with my doc aswell! the flight will be about 11 hours long, I love flying too. its so relaxing and if the plane shakes, it only excites me for some...
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    International Travel

    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...
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    Fda to have hearing on combo

    Sounds awesome, finally progress, i thought it would take atleast another year, maybe two. But now we might have acces to the med this summer? With a bit of lick ofcourse! It would be awesome