Cystic Fibrosis Forum (EXP)

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  1. R

    OH NO! They are closing my CF clinic!

    Diane, I've had a few new doctors since all my hemoptysis problems, you know your body best, tell them what the other doctors have done, and most importantly tell them what you think works for your body! And maybe new ideas will help too.
  2. R

    What are your addictions?

    Wonder if we love salt because we sweat it out? I love pretzels, really salty pretzels!
  3. R

    Who here is on long term dissability and...

    I am on disability have been for 4 years now, I think my FEV1 was around the 70's but I couldn't work full-time or I would get sick, so there one big question is can you support yourself? I did get denied twice and got Beth Sufian (I'm sure you've heard of her) and finally I was able to get it...
  4. R

    Cool new site!

    Looks great!<img src="i/expressions/face-icon-small-happy.gif" border="0">
  5. R

    Hemoptysis

    Donovan-Thanks for sharing, that's exactly what it feels like! Glad to know others feel the same way. And I don't know about others but it usually happens when I lay down, I haven't laid flat in bed in years!!!! I'm kinda scared to really, besides incline helps me breathe better. One of my Dr.'s...
  6. R

    Hemoptysis

    Donovan-Thanks for sharing, that's exactly what it feels like! Glad to know others feel the same way. And I don't know about others but it usually happens when I lay down, I haven't laid flat in bed in years!!!! I'm kinda scared to really, besides incline helps me breathe better. One of my Dr.'s...
  7. R

    Hemoptysis

    Same with me, totally out of the blue, that's what worries me! I left work one day and had to pull over and coughed up about a cup and a half of blood! It's always when I've feeling good! We joke about that, "I feel good! Watch out!" The Dr. did a lung scan and both my upper lobes are really...
  8. R

    Hemoptysis

    Same with me, totally out of the blue, that's what worries me! I left work one day and had to pull over and coughed up about a cup and a half of blood! It's always when I've feeling good! We joke about that, "I feel good! Watch out!" The Dr. did a lung scan and both my upper lobes are really...
  9. R

    has oregano oil changed your routine?

    Any suggestions on where to buy and exactly what to buy? I would like to give it a try.
  10. R

    has oregano oil changed your routine?

    Any suggestions on where to buy and exactly what to buy? I would like to give it a try.
  11. R

    Hemoptysis

    I was on Tobi and Pulmozyme but three years ago when I had all the massive hemoptysis they took me off. I have tried a few times to go back on but I would always have an episode. So I haven't been on them since. My hemoptysis episodes seem to happen when there's an infection, they put me on IV...
  12. R

    Hemoptysis

    I was on Tobi and Pulmozyme but three years ago when I had all the massive hemoptysis they took me off. I have tried a few times to go back on but I would always have an episode. So I haven't been on them since. My hemoptysis episodes seem to happen when there's an infection, they put me on IV...
  13. R

    National CF Awareness Month...

    I think we should email Oprah and others who raise money for Cancer research and let them know about CF awareness month!!!!! And get them to raise money!
  14. R

    National CF Awareness Month...

    I think we should email Oprah and others who raise money for Cancer research and let them know about CF awareness month!!!!! And get them to raise money!
  15. R

    zithromax

    I'm on it as an anti-inflammatory and nothing else.
  16. R

    zithromax

    I'm on it as an anti-inflammatory and nothing else.
  17. R

    Hemoptysis

    What are your experiences with Hemoptysis? I've been having major problems with hemoptysis for the past 3 years. I've had several embolizations, had to be on a ventilator twice, but in the past year or so I've been doing better, hope it continues!
  18. R

    Hemoptysis

    What are your experiences with Hemoptysis? I've been having major problems with hemoptysis for the past 3 years. I've had several embolizations, had to be on a ventilator twice, but in the past year or so I've been doing better, hope it continues!
  19. R

    saline

    I found that if I did my albuterol first the irritation in the throat wasn't as bad, and doing it every other day to start out. I have major problems with hemoptysis and I haven't seen that it makes it worse.
  20. R

    saline

    I found that if I did my albuterol first the irritation in the throat wasn't as bad, and doing it every other day to start out. I have major problems with hemoptysis and I haven't seen that it makes it worse.
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