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  1. O

    Pseudos exacerbation :(

    I'd say at least finish the month for the Cayston first. I don't typically see the results of it until about the third-fourth week, but that's just me. Of course, when in doubt call the doctor. Also if you're running fevers, call the doctor.
  2. O

    What does yoga do for you?

    The few times I did yoga, it didn't do much for me. It was a nice stretch and got my heart and breathing rate up, but not really enough for what I'd consider a workout. Might be good for a cooldown after a workout, if you have the energy, though.
  3. O

    Cellgevity..sounds amazing anyone taking it??

    It helps me get some good globs of stuff up. I also notice having a little better appetite, I guess from insulin sensitivity from reduced inflammation. Can't speak to infection frequency. I've been admitted once since starting it, but it was because I caught the flu. Doubt it could've...
  4. O

    Cellgevity..sounds amazing anyone taking it??

    I use Now 600mg NAC supplement, personally. It's about $30 for a 250 cap bottle on amazon.
  5. O

    Need perspective

    Not to make light of things, but if you just got diagnosed at 28 and your FEV1 is over 100%, you're probably fine for a while. Keep doing what you've been doing, listen to your doctor when you see them, and take it easy. Cross bridges when they need to be.
  6. O

    Pulmonary MRSA a problem for CFers?

    I started culturing it in 2009. It's never really been a significant problem for me. My lung function's declined since then, but no more than one would expect from 5 years of normal CF decline. I have been in the hospital more often since, but my FEV1 also in the 20-30% range and has been...
  7. O

    Anyone using a hand held percusser like the Foredom or Flimm Flighter?

    I used the Flimm Fighter growing up. It was kinda hard to use on my own. The handle was only maybe 8-9 inches long, so I couldn't get everywhere on my back comfortably. I guess it's nice if you know where you're junky and want to do some targeted percussion. It also helps that you can do...
  8. O

    scholarships

    If you're low income, look into a pell grant. I got a 100% through college on them. Even got about $800-1000 extra per semester for whatever.
  9. O

    PharmaNac and Clear Lungs

    Can't help you on Clear Lungs, never tried it. If you're thinking of trying PharmaNac, though, know there are much cheaper options for N-acetyl Cysteine as Pharmanac can run near $40/box which is half a month at the recommended dosage.
  10. O

    Blood streaked mucus and chest pain

    Blood can be the result of a lot of things, and you sort of get used to it. It can be as simple as inflammation, doing one's vest too vigorously, an infection, or as Stephen said, from bronchiectasis. Normally it's just something to take note of and bring up at your next appointment unless...
  11. O

    itchy cough & trachea

    Could be post-nasal drip. Got any sinus problems?
  12. O

    Aerobika- has anyone used this yet?

    I use an acapella device that I got from an RT in the hospital. Seems to be the same idea. Works pretty well, especially when I'm really congested.
  13. O

    IV antibiotics just for sinus issues?

    I've never had them specifically for sinus purposes. However, my last hospital stay a month or so ago, it started with a sinus infection that started draining down my throat. That led to a couple big infections in my lungs requiring the hospital stay. So I wouldn't be surprised by a course of...
  14. O

    N-Acetyl Cysteine, useless or useful?

    I've done the PharmaNAC supplement for a month. It never really did much for me. I know I've read that some people have had positive results, though.
  15. O

    How do you find pulmozyme?

    Laying down while you get chest PT, sometimes done on an incline. Letting gravity make mucus drain up from your lower lobes.
  16. O

    How do you find pulmozyme?

    If you're not doing postural drainage during your clearance, try it. I know when I'm in the hospital I usually have to insist, otherwise they just beat on me while I sit up which isn't always productive. As for the original question, never had a problem with pulmozyme.
  17. O

    First Hospitalization

    If it's like my visits, the first day or two is an onslaught of blood work, chest xrays, and other tests. This is followed by 12-13 days of sitting in a bed getting antibiotics watching reruns on television. Bring things to do.
  18. O

    Any advice!?

    It happens. It's usually nothing and you get used to it. Call your CF doctor on Monday and see what they want you to do. If it keeps happening over the weekend then go to the emergency room. Also if you're just coughing up blood outright, no phlegm, then go to the emergency room. More often...
  19. O

    how well does cayston work for you?

    SoB, shortness of breath. Basically, I notice myself getting winded a little easier after doing stupid things like taking a shower or taking the garbage out. It should probably be noted that I'm at a fairly low lung function; around 25%. It's a minor annoyance that's far outweighed by what...
  20. O

    how well does cayston work for you?

    Works pretty well. I have a little more SoB on it than off it, though. Not bad, just enough to notice. By the end of the month I usually notice a real difference in the amount and color of stuff I cough up, and the first couple weeks off of it are fantastic.
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