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  1. M

    D508/R117 mutations

    just wanted to drop a quick thought. I am W1282X and R117H. when I was diagnosed at 14 the CF doc said I was mild. Well, I am 42 and I have 30% lung function. I cannot even go into all the hospitalizations and surgeries I have had. Just keep that in mind. Mild does not stay mild forever...
  2. M

    When cf will no longer be an incurable disease??

    Printer, I lived in a fantasy for many years thinking, hoping, and begging god for a cure. I fully expect that this disease will kill me. God bless you for surviving till 72. JennyC, yes, I do know about the Kalydeco trial for my mutation and I also know Marci. I am trying to get into the...
  3. M

    When cf will no longer be an incurable disease??

    Hi, I just want to answer your question. I am 42 years old. I will die from CF. There will never be a cure in my lifetime or for anyone reading this. There will be drugs..yes. I get frustrated when I see others write how fortunate we are in the last 20 years with the developement of drugs...
  4. M

    Advair and high heart rate

    I switched from Albuterol to Xopenex because of heart rate problems. The xopenex can make your heart race but much less then albuterol....as with me it only happens sometimes. Tell your DR to write you the script.
  5. M

    Interpretation of Ataluren Press Release

    yes, great question Anien. I have asked my Dr about sweat levels and they told me that "just because a level goes down it doesnt mean your body is working normal". what EXACTELY is the significance of the sweat test?
  6. M

    Interpretation of Ataluren Press Release

    I heard that it worked better on some mutations then others. does anyone know which?
  7. M

    Weight

    Hi Katie, Im in the same boat as you. I recently lost 15 lbs off a skinny body and I am trying everything to gain it back. I have gained back 10 lbs but it took me about 8 months. People were commenting daily about my weight loss--so I know how you feel. I did a few things to help gain it...
  8. M

    Weight

    Hi Katie, Im in the same boat as you. I recently lost 15 lbs off a skinny body and I am trying everything to gain it back. I have gained back 10 lbs but it took me about 8 months. People were commenting daily about my weight loss--so I know how you feel. I did a few things to help gain it...
  9. M

    IMPORTANT!..Need to know what you people have had done to help your pnuemathoraxes!

    Ok, I read your 2nd post. A lung collapse happens for many reasons...one being massive infection that is brewing in your lung...that is what caused my collapse. My lung re-inflated on its own in 7 days. The only other option is to have your lung basically glued to your chest wall and yes, it...
  10. M

    IMPORTANT!..Need to know what you people have had done to help your pnuemathoraxes!

    Ok, I read your 2nd post. A lung collapse happens for many reasons...one being massive infection that is brewing in your lung...that is what caused my collapse. My lung re-inflated on its own in 7 days. The only other option is to have your lung basically glued to your chest wall and yes, it...
  11. M

    IMPORTANT!..Need to know what you people have had done to help your pnuemathoraxes!

    Carly, many of the things you said do not make sense at all. I had a lung entirely collapse and no one was prepping me for transplant. Also,you say you have a "microscopic lung collapse"...that cant be right because then you wouldnt have a chest tube in. Some small collapses heal on their own...
  12. M

    IMPORTANT!..Need to know what you people have had done to help your pnuemathoraxes!

    Carly, many of the things you said do not make sense at all. I had a lung entirely collapse and no one was prepping me for transplant. Also,you say you have a "microscopic lung collapse"...that cant be right because then you wouldnt have a chest tube in. Some small collapses heal on their own...
  13. M

    ataluren

    I cannot say that anything is changed.....we really should wait for the data. Also, I am almost 42 with pretty severe lung damage. The data might be different for those who started with better Fev1's.
  14. M

    ataluren

    I cannot say that anything is changed.....we really should wait for the data. Also, I am almost 42 with pretty severe lung damage. The data might be different for those who started with better Fev1's.
  15. M

    ataluren

    Hi All, I am still in the study and I found out from another Ataluren CFer that the data should be out in 4-6 weeks. I hope this is true. I cant say that I have heard the same excitement as Kalydeco. That should say it all.
  16. M

    ataluren

    Hi All, I am still in the study and I found out from another Ataluren CFer that the data should be out in 4-6 weeks. I hope this is true. I cant say that I have heard the same excitement as Kalydeco. That should say it all.
  17. M

    Just so frustrated! *Vent*

    Hi, I have Blue Cross/Blue shield too. I am one of the "fiddling around" people. I just wanted to say--we are all in the same boat--we all have CF--and all of us are DESPERATE for ANYTHING that will give us relief. I dont have the G551D mutation but I also feel your frustration. We all want the...
  18. M

    help GAINING WEIGHT

    just wanted to say that Im in the same boat. I lost 15 lbs and I cannot gain it back. Its so hard cause I do eat but just not that much. My appetite is not huge. Its a very hard thing for me because I get so many comments about it. Someone had suggested peanut butter sandwiches between meals...
  19. M

    Hearing loss

    Can I ask what meds you took during your pregnancy? May God give you and your little girl strength. I cant imagine what you must be feeling. sending healing vibes.
  20. M

    Pancreatic sufficient

    Hi, I am 42 years old and have been panc suff my entire life. I have never had to take enzymes or anything like that. I just had a big drop in weight (like 15 lbs) and went to a gastro dr thinking that it was a pancreas issue...turned out not to be. It was my due to stress and my good old...
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