Cystic Fibrosis Forum (EXP)

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  1. N

    Moving to Florida from the Rockies, Need Advice.

    I live in Colorado and I really struggle in the humid air anywhere in the south and Midwest. I have a lot of health issues when I visit family and friends out there and try to plan my visits for immediately following hospital stays, so I'll be in the best of shape. I still end up struggling to...
  2. N

    Pulmonary MRSA and Cystic Fibrosis

    Yes. I contracted it July of last year. I've been on IVs and oral antibiotics ever since, and we've barely got it controlled. As it stands right now, I'm right on the edge if needing to go back on IVs.
  3. N

    19 year old CF son not taking care of himself

    Lucy, I also mentioned having someone else ask him about depression. I did not tell my close family or friends that I was depressed. If they asked, I rolled my eyes and told them to "quit being ridiculous." It took my cousin's girlfriend/fiancé asking me before I could even tell anyone that I...
  4. N

    19 year old CF son not taking care of himself

    I went through the exact same thing. Around 18/19, I stopped doing everything except taking enzymes. Nothing my parents or doctors said could get me to do them again. Nothing. If he's anything like me, he has to start them on his own. He will have a moment that makes him examine how he is...
  5. N

    Coughing alot but no need for hospital. need tips/ advice on how to control it.

    I wear it all night long. An added benefit is you'll have the softest feet of everyone you know, haha
  6. N

    Coughing alot but no need for hospital. need tips/ advice on how to control it.

    This is going to sound really weird. I put Vaseline on the soles of my feet, then cover them with socks. This usually gets rid of any cough that isn't productive. I don't understand it (beyond basic reflexology), but it's worked for me.
  7. N

    Dirty Stethscopes

    I completely agree, LL. I always made sure my docs used an alcohol wipe on the stethoscope, but NJH's new policy is amazing. I've even taken one of the disposable stethoscopes home and given it to the little boy I take care of, after wiping every little part down with alcohol (he wants to be a...
  8. N

    Effectiveness of inhaled antibiotics after months of use?

    I've found the neb albuterol is much more effective than the puffer. On the antibiotics without it, I would struggle to breathe after only a couple inhalations. As soon as I switched over, I could go the entire treatment without a problem and after the treatment, there were no residual effects...
  9. N

    Effectiveness of inhaled antibiotics after months of use?

    Have you tried inhaled albuterol (as in through a neb, not a little puffer/aero chamber) or a similar med? I have reactive airways, but if I do inhaled albuterol about 15 minutes beforehand, I'm fine.
  10. N

    People with Cf can make a wish at make a wish foundation?!?

    As far as I know, as long as you have a terminal illness and are under the age of 18, you can get a wish. I don't believe they will pay for culinary school, but for international trips you will have to go with a different charity. Last I knew, Make A Wish is only for US wishes.
  11. N

    mom of a 16 yr old daughter

    Bill, I mean in comparison to treatments that are not invasive and do not require anesthesia. Obviously a colonoscopy is not a large operation compared to major lung surgery, but when compared with something like a diet change, it is.
  12. N

    mom of a 16 yr old daughter

    In my opinion, it can't hurt to ask for another opinion. It might also be a a good idea to talk with your current specialists about other things your daughter could try before the colonoscopy. Maybe 3-4 weeks of breakfast and a better lunch. If things improve, great! If not, try something else...
  13. N

    How bad is smoking pot?

    I'm just confused. In many of your past posts, you want to lose weight. You ask about supplements, the best ways to lose weight, how easy it is for you to gain weight. And now you want MM for a dietary stimulant? I'm sorry, but based on past posts of yours, it sounds like you just want a reason...
  14. N

    Questions about CF in an infant...

    I was a false negative in my newborn screening and had no symptoms if the disease, except no weight gain. It is possible. A person with CF is born with the disease. It's genetic, so it is determined my the same factors that determine eye color, hair color, etc.
  15. N

    Should I send my 18mth old to a preschool or keep him home?

    My parents sent me to preschool as soon as they could. I was kept home if there was something going around in the class, more than 7 people in the class of 16. Other than that, I went to school and loved it.
  16. N

    Generic Pulmozyme

    As far as I know, Dornase Alfa is the "generic" of pulmozyme. Because pulmozyme is made with live cells or organisms, a generic form can't be made. There's rules against it. However, the solution you named is, I think, part of the same mucolytic family. I'm not 100% sure if the law against...
  17. N

    embolisation

    I had a low fever with both of mine, however it didn't worry the doctors. It was only around 99.5 or so, never broke the 100s.
  18. N

    Feeding Tube Concern

    I had a feeding tube from age 11 to 17. I hated it at the time I got it. Absolutely hated it. Hated the feedings, hated the look, hated that I couldn't gain weight on my own. I even hated my parents a little bit for making me get it. My feelings began to change after a while. I no longer had to...
  19. N

    lip cuts

    I had this happen a lot, but taking zinc has helped tremendously. I really wish I could remember why, but I started taking it when I was 11 and that was 12 years ago, haha.
  20. N

    Is really cold weather bad for cf'ers

    Like Red9928, when I was a kid cold didn't bother me at all. I'd love to go out and play until my fingers and toes were frozen. Now that I've had several years of difficult health, anything below 55 degrees starts to bother me and anything below 30 degrees is extremely hard to breathe in.
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