Cystic Fibrosis Forum (EXP)

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    Frustration with friends and family

    You have to change the pattern make them get used to it. They say you look healthy. You say im tired. They say cook. You say im on ivs. Turn your phone off while at hospital. Make them go your way. Dont take no for an answer!
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    Interested in e flow...

    I have been using it for 7 years or more! its amazing! Fast silent portable! The neb parts are kinda sensitive and need attention in sterilizing but arent we used to this? Id say go for it. I do Pulmozyme and Tobi. They made me use a traditional nebulizer with a mask at the hospital to do Pulmo...
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    Frustration with friends and family

    If i were you i would act like a spoiled child. I would not cook. Order out. I wouldnt do dishes id ask my kid to do it. I would go and sleep and if theyd wake me up id fall back to sleep. I would make myself my priority! Let others say whatever they want! Do your own thing! Do as many things as...
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    Creon question

    Im taking 2-3 Creon (10,000) with every meal since i was little! I mean 9-10 a day. Everyone has their own pattern. Give your body some time and monitor the reactions. PS Why the hell stomachaches (upper stomach) kick in, in the morning? I will never understand.
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    HELP - Daughter can't breath after 2.5 minute competitive cheer routine-what to do?

    I think 2roses pretty much covered the issue! Just dont panic! Talk to your doctors! Maybe she need a broncholidator and this makes the whole thing go away! Exercise is so important! Oh one last thing! A stress test would be a very efficient way for her doctors to check her body during exercise...
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    Starting the process for transplant... get listed or wait for Kalydeco/VX-809?

    Well i postponed replying here because i was trying to think this over. Again and i again. What would i do if it was me we were talking about? New drugs give us hope. Proven and accepted. Transplant is always an option. -I would start exercising to get my pfts up. I would start exersising to...
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    Altera Nebulizer with White Film

    Guyz im an expert here! I use those stuff every day! So listen! Take them all, put them on a saucer pan or whatever. Add water and vinegar lets say a spoon of it. Let them boil 3-4 mins. Theyll be brand new!
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    Floating stools

    Sometimes i need Zantac to help me with stomach issues. It hurts some time but i know its due to acid and coughing etc. It really cuts down my appetite when im in this situtation so Zantac helps. Would you think some baking soda on a little water would substitute? I had never thought it before...
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    TOBI/TOBI Podhaler

    greatbay Ι had to do the same with my doc too. She prescribed Aerolin inhaler before Bramitob. She agreed its hard for me to tolerate and its causing me a lot of cough but i need to stay on it. So we tried to monitor if there is any side affects between tobramycin and Budesonide/formoterol i...
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    Tired

    Welcome to my world! I work part time and im tired, i go out with friends and im tired. If i dont get 9 hours of proper sleep im a mess.
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    Fall over tired, and have no energy. Kind of scaring me

    I think you shouldnt worry! The first few days are hard! Help your body by resting!
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    Getting Bronchitol in the US?

    Is anyone on this drug right now?
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    Getting Bronchitol in the US?

    I accidentally came up to this today! http://www.pharmatimes.com/article/12-10-26/Pharmaxis_Bronchitol_next_cystic_fibrosis_drug_to_get_the_nod.aspx
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    So tired of antibiotics...

    "WE do a lot to keep the boys from getting sick and it seems to be working..." Plz share some tricks with us!
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    TOBI/TOBI Podhaler

    Ask your doctor about Bramitob, it is a generic medicine of Tobi. Same thing but it works differenlty for me. Its less thick, more easily tolerated, shorter treatments. Cayston is also available!
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    Is there ANYTHING in development to cure PA once and for all ?

    http://www.polyphor.com/pol7080.html They are in Phase I but it sounds promising and revolutionary! News about Intercell. It is approaching Phase 3. If it works its not that faraway http://www.intercell.com/main/forvaccperts/product-pipeline/pseudomonas-vaccine/
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    Is there ANYTHING in development to cure PA once and for all ?

    Look! Thats how i get it! Pa stays in our lungs and grows back just because we are a hospitable environment (mucus, not well ventilated lungs). So im thinking if took drugs that treat the underlying cause of CF it will give us less mucus. So a not that hospitable environment. So anti PA drugs...
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    Taking Pulmozyme? Yes or No.

    Im 23 and i take Pulmozyme 3 times a week before physio.
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    Europeans vote down dry powder mannitol

    Is anyone here using Bronchitol?
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