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  1. J

    The Best Exercise to Raise PFT scores

    Here is what I do at 51 yrs of age (DD f508): High intensity interval training, 2-3 days per week, 10-20 minutes max. (the good news about this is that "high intensity" is subjective...go as hard as you can, safely--if this means wear an O2 sat device or even use O2, so be it). Weight training...
  2. J

    I have CF and I lost my older brother from CF

    LFP: I have lost both a sister (Kathy) and a brother (Tom) to CF. I am the last of the three of seven kids in our family with CF. I know exactly what you are feeling. It is sad and scary and it probably seems like no one else can possibly understand. I do. There is no describing the feeling...
  3. J

    Anybody try a dairy-free, gluten-free, sugar free diet?

    I am very interested in this thread because I have been eating mostly paleo for about 2 months and am amazed at how much better I feel. I say "mostly" because I still eat grass fed butter and some GF raw cream and I have cheated a few times with a glass of wine. I've been doing a lot of...
  4. J

    Anybody try a dairy-free, gluten-free, sugar free diet?

    I am very interested in this thread because I have been eating mostly paleo for about 2 months and am amazed at how much better I feel. I say "mostly" because I still eat grass fed butter and some GF raw cream and I have cheated a few times with a glass of wine. I've been doing a lot of...
  5. J

    Off Label Kalydeco-My follow up Appt.

    Holy Cow! That is amazing...the sweat chloride value is so exciting! So happy for you, and in advance for those of us waiting for the magic combination cocktail:-)
  6. J

    Off Label Kalydeco-My follow up Appt.

    Holy Cow! That is amazing...the sweat chloride value is so exciting! So happy for you, and in advance for those of us waiting for the magic combination cocktail:-)
  7. J

    DF508ers who participated in VX-770 trials

    <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Gammaw</b></i> Has Vertex ever indicated why the current trials include VX770 in combination with the other two drugs in development for DF508? If VX770 (Kalydeco) has no effect on DF508, then why bother. They must feel some potential...
  8. J

    DF508ers who participated in VX-770 trials

    <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Gammaw</b></i> Has Vertex ever indicated why the current trials include VX770 in combination with the other two drugs in development for DF508? If VX770 (Kalydeco) has no effect on DF508, then why bother. They must feel some potential...
  9. J

    DF508ers who participated in VX-770 trials

    <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kwcf50</b></i> I am interested in finding out if phase 2 clinical trial for 770/809 will be open to those with only one df508. The current study is for double df508s only. If anyone knows....please post. My doc says they don't...
  10. J

    DF508ers who participated in VX-770 trials

    <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kwcf50</b></i> I am interested in finding out if phase 2 clinical trial for 770/809 will be open to those with only one df508. The current study is for double df508s only. If anyone knows....please post. My doc says they don't...
  11. J

    Can somebody give me some answers, please!

    I would definitely look into ABPA (allergic bronchopulmonary aspergillosis). To do this, they look at your IgE levels (sky high in ABPA) and specific IgG antibodies to aspergillus. I had ABPA and when it is active, it really leads to shortness of breath. Tell your doctor you need to have this...
  12. J

    Can somebody give me some answers, please!

    I would definitely look into ABPA (allergic bronchopulmonary aspergillosis). To do this, they look at your IgE levels (sky high in ABPA) and specific IgG antibodies to aspergillus. I had ABPA and when it is active, it really leads to shortness of breath. Tell your doctor you need to have this...
  13. J

    New Exercise Coaching Program

    Hi everyone.  Ronnie Sharpe over at CysticLife and I are starting up a new program where we will personally coach 10 people (in the first round) for three months with weekly phone calls or Skype chats.  Our goals is to encourage the beginning and maintenance of a personalized exercise program...
  14. J

    New Exercise Coaching Program

    Hi everyone. Ronnie Sharpe over at CysticLife and I are starting up a new program where we will personally coach 10 people (in the first round) for three months with weekly phone calls or Skype chats. Our goals is to encourage the beginning and maintenance of a personalized exercise program...
  15. J

    New Exercise Coaching Program

    Hi everyone. Ronnie Sharpe over at CysticLife and I are starting up a new program where we will personally coach 10 people (in the first round) for three months with weekly phone calls or Skype chats. Our goals is to encourage the beginning and maintenance of a personalized exercise program...
  16. J

    Question for the runners out there

    Becki,<div>I can completely relate to absolutely everything.  Don't panic!  I'm 50 now, and although I'm not currently running, I've done a lot in the past.  First, listen to your body and don't let yourself get to the point where you are so winded, you need to stop.  Stop before that, and walk...
  17. J

    Question for the runners out there

    Becki,I can completely relate to absolutely everything. Don't panic! I'm 50 now, and although I'm not currently running, I've done a lot in the past. First, listen to your body and don't let yourself get to the point where you are so winded, you need to stop. Stop before that, and walk until you...
  18. J

    Question for the runners out there

    Becki,I can completely relate to absolutely everything. Don't panic! I'm 50 now, and although I'm not currently running, I've done a lot in the past. First, listen to your body and don't let yourself get to the point where you are so winded, you need to stop. Stop before that, and walk until you...
  19. J

    The perfect workout

    Hi everyone.  I am writing a series of articles on my blog about exercise, and about what I think are the key components of a great workout.  Can't seem to add a blog post to this site, so here is the link: <a target="" title="" href="<A...
  20. J

    The perfect workout

    Hi everyone. I am writing a series of articles on my blog about exercise, and about what I think are the key components of a great workout. Can't seem to add a blog post to this site, so here is the link: <a target="" title="" href="<A...
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