Cystic Fibrosis Forum (EXP)

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  1. P

    New novel with heroine with CF coming out in August

    I might look into buying this, well see tho, sounds good and interesting.
  2. P

    Sean D says hi!

    Its good hear he that he is not banned, hopefully he will start posting again as soon as he knows his not banned. Say hey to him for me. I dont have yahoo messenger, so I wont be able to chat with him.
  3. P

    Come back lines that you are proud of

    I cant think of any off the top of my head right now, but if I do Ill tell ya guys. Im sure I had some good ones.
  4. P

    have i missed something?

    One thing I dont like about not being anon, is I have to sign on at work when I want to post, and I hate having to sign on, but if I want to post I have to now.
  5. P

    Come back lines that you are proud of

    yes it is a good one, did he have a reply after that?
  6. P

    Piercings

    I only have my ears peirced 1 peircing in each. I dont wear earings anymore unless its a special occasion, because my ears get really itchy and I dont think they like earings any more, like they get infected or something.
  7. P

    Traveling

    and the machine, vest , pedal and tubes ALL fit into that bag. That would be a handy thing if everything fits in it.
  8. P

    Traveling

    I have a quick question for you all, when you go on vacation for a week or two, do you tug your vest around? I was just wondering, I dont think I will tug my vest around on vaca. but I will bring an old massager that I have had since I was little , I use that and have hubby do my back for me. My...
  9. P

    what would be different if you were rich?

    I dont think my health would be any different. I get the the meds/machines I need without a problem. I would just upgrade to a bigger house and furnish the house with nice things.
  10. P

    HS

    Sometimes I can go threw the whole thing without coughing but sometimes I make myself cough, and especially when I do my vest after Hs, then I try and huff or cough a little just to help move stuff around in there. Eventhough the HS doesnt make me cough all the time.
  11. P

    Psshhhh Cooler Club Here!

    Ill join but mine arent interesting they're both the same and they are G542X
  12. P

    How do you Cough?

    Thanks for sharing your techniques, I dont have any special technique when coughing, I just sit up straight and huff or cough. I try not to cough too much because it will put a strain on my vocal cords, and well then Id be hoarse for a week or two. I use to cough until the loose cough went away...
  13. P

    Tobi = Death. WHAT???!!!

    I know when I was on the iv tobramycin, the doc always done blood work once a week to monitor the levels on Tobi, because of that I cant take tobi in the iv form anymore, because it started to affect my liver, I believe, but I do inhale Tobi 28 on and 28off, and my doc always asks me if I ever...
  14. P

    my genes

    Both of my mutations are the same G542X.
  15. P

    Terrible teeth

    sorry I cant help ya out, maybe someone else can.
  16. P

    new information about CF "ideal weight"

    new information about CF "ideal weight Im normal wieght, mine was 24.2. Yes it does help to know.
  17. P

    John Hopkins Lab Scientists Tame Overactive CF Protien

    Sounds great, hope it passes all the tests and such.
  18. P

    salt

    I use a lot of salt also, infact my husband cant believe how much salt I eat. I do get the all of a sudden empy stomach feeling and then I get to where Im either weak or I feel fainty. Not sure what it is exactly but I try to eat something or lay down until it passes, it doesnt happen often...
  19. P

    salt

    I use a lot of salt also, infact my husband cant believe how much salt I eat. I do get the all of a sudden empy stomach feeling and then I get to where Im either weak or I feel fainty. Not sure what it is exactly but I try to eat something or lay down until it passes, it doesnt happen often...
  20. P

    Improving your PFT score

    I always stand up, I dont think I will be able to sit down. When I stand I always go up on my tippy toes, that seems to help me, but I've noticed that when I do my last treatment for the day, before going to drs it helps too! Thanks for the advice.
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