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  1. J

    Tummy problems!

    Just wondering if people out there are the same as me and are having/had children? Im only 17 so no plans yet but i just like to know these things for future! :p My lungs are resonably good and iv only had IV antibiotics once so from that side of things I think iv a good chance of hopefully...
  2. J

    Anybody else like this :(

    So basically Im hating the way I look at the moment....problem is because of the whole cf thing Iv a really enlarged spleen its huge and it makes my stomach stick out and I hate it so much I also get really bad bloating which makes things even worse! Are any of you guys out there the same as me...
  3. J

    Pep mask physio

    Hi, Just wondering if any of you guys know where I could by a new AD belt to use with my pepmask? Mine is getting old! Thanks :)
  4. J

    Kalydeco

    Thanks so much for that rosesixtyfive :) Hope your sons doing well!
  5. J

    Kalydeco

    Hey guys, Wondering if any of you know about kalydeco for ddf508 patients. Iv read so many things about when its coming, that it isn't happening, that it wont work and its hard to know what to believe! :( I hear of so many people on it and are doing amazing, I just need it so bad now and hope...
  6. J

    My you tube channel!

    Hey guys, Im Aileen and Im 17 years old living in Ireland with ddf508. I spend alot of my time singing and playing guitar, I love it so much and I find its great for my lungs! I would love if you could check out my you tube channel http://www.youtube.com/user/AileenMusic1696 I also have a...
  7. J

    Looking for people to talk with :)

    Heyy, Im Aileen 17 years old. I was diagnosed at 3 years old, and happy to help anyone who wants to talk! :)
  8. J

    Tobi podhaler

    Thanks guys for the replies! Im month on toni month on cayston and I love cayston. Im due to go on Tobi again soon though :'( oh it drives me nuts because I do loads of singing and I sound like a man when Im on tobi! so maybe ill try it this time and see how it goes and if its really bad I might...
  9. J

    Therapies: What do you do each day?

    Im 17 years old with DDF508. I do month on tobi month on cayston so both months are different :) Tobi Month! Morning: ventolin + Saline neb + Tobi podhaler Afternoon: maybe exercise! Evening: Ventolin + Saline Neb + Physio (Pep mask) Night: Ventolin + Tobi Cayston month! Morning: ventolin +...
  10. J

    Tobi podhaler

    For people on tobi podhaler! Have any of you had the side effect where it makes you really tight all the time and makes your voice go really hoarse! No matter how much ventolin I take I'm still tight and I feel worse when I'm on my month on it but doctor had advised not to change :(
  11. J

    excessive underarm perspiration

    Yessss and its driving me insane because I get excessive sweating on my hands and in the process of trying to find something that will work (failed so far :p )
  12. J

    Nothing coming up!

    Is there anyone out there like this or is it just me! I'm not very productive at all! I bring tiny amounts up a day even after physio etc and I'm not sure weather this is good or bad and my lung functions around 55-58% so somethings wrong somewhere. My doctor always asks if I bring a...
  13. J

    Cf and yellow teeth

    I had huge problems with my teeth it was called 'pitted enamel' and it was to do with being malnourished and having lots of sugary supplements to help with my weight. This all resulted in really bad brown staining on my teeth and I ended up having a major whitening job done on them when I was 13...
  14. J

    Fev1 question

    Does he do a saline neb? There suppose to help with lung function alot!
  15. J

    How do YOU clean your nebulizer?

    What I do for cleaning is I wash them every time I use them. I wash them in soapy water rinse them and then I use a steriliser (like the baby bottle ones) there really quick to use and that way your killing any germs and making sure there super clean before you use them again :)
  16. J

    pseudomonas

    Thanks for your replies! Was just curious :)
  17. J

    How long does it take you to get sick?

    Hiya, I get tightness too and can tell when I'm about to get sick. I normally do a saline nebuliser most days but when I feel I'm getting something I try and boost that up to twice a day. If its a chest infection that's coming its pretty hard to try and avoid it and I end up on oral antibiotics...
  18. J

    pseudomonas

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  19. J

    Sweaty hands!

    Hey, wondering if anyone else out there is having the same problems as me! Iv always had clammy hot hands but recently they've gotten really bad! They get really really sweaty I can see the wetness on them and its getting really annoying because I play guitar and piano and its not so easy with...
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