Cystic Fibrosis Forum (EXP)

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  1. K

    IV side effects

    I'd call just to make sure. They may want to switch out something if that's possible. I get numbness with colisitin, which makes me drop stuff all the time, so I only use it if I can't use something else.
  2. K

    IV side effects

    I'd call just to make sure. They may want to switch out something if that's possible. I get numbness with colisitin, which makes me drop stuff all the time, so I only use it if I can't use something else.
  3. K

    Interested Student

    A survey is definitely a good idea! I think the responses you'd get w/out one are going to be all over the place. It's easier to respond to very specific questions.
  4. K

    Interested Student

    A survey is definitely a good idea! I think the responses you'd get w/out one are going to be all over the place. It's easier to respond to very specific questions.
  5. K

    Silver and CF

    MY friend was actually just telling me something he had read about silver. However, he mentioned how a couple had all the doorknobs and such in their house -- pretty much everything you touch all the time --made of silver and how they never get sick because of it. Completely different from...
  6. K

    Silver and CF

    MY friend was actually just telling me something he had read about silver. However, he mentioned how a couple had all the doorknobs and such in their house -- pretty much everything you touch all the time --made of silver and how they never get sick because of it. Completely different from...
  7. K

    Need Reccommendations

    I agree with Jennifer. Definitely might want to try and see a specialist. The easiest thing would be adjusting/changing your enzymes - I hope it turns out to be that simple! I know some of the drug companies that provide the enzymes also offer complimentary supplements. I don't do well with milk...
  8. K

    Need Reccommendations

    I agree with Jennifer. Definitely might want to try and see a specialist. The easiest thing would be adjusting/changing your enzymes - I hope it turns out to be that simple! I know some of the drug companies that provide the enzymes also offer complimentary supplements. I don't do well with milk...
  9. K

    What is the best way for a non-CFer to react to you and/or CF?

    Can't argue with all the above, but here are some things I appreciate: -When I have a coughing fit in public, my friends/family will often tell passerby "don't worry, she's fine" or the like. This prevents me having to tell well-meaning strangers that I"m fine while I can't breathe. Also, since...
  10. K

    What is the best way for a non-CFer to react to you and/or CF?

    Can't argue with all the above, but here are some things I appreciate: -When I have a coughing fit in public, my friends/family will often tell passerby "don't worry, she's fine" or the like. This prevents me having to tell well-meaning strangers that I"m fine while I can't breathe. Also, since...
  11. K

    Resistant Strains

    I was just curious if anyone else had this problem/had any suggestions besides increasing treaments. Luckily I'm not culturing this right now, but my achromabactor (sp??) is literally resistant to everything. Not even an "I" on that list of medicines the docs use. They look at it and go, hmmm...
  12. K

    Resistant Strains

    I was just curious if anyone else had this problem/had any suggestions besides increasing treaments. Luckily I'm not culturing this right now, but my achromabactor (sp??) is literally resistant to everything. Not even an "I" on that list of medicines the docs use. They look at it and go, hmmm...
  13. K

    What is your FEV1 Score?

    Last visit I was about 36% following xopenex. Before xopenex I'm at about 32%. My previous baseline was lower 40s, but I crashed pretty hard last summer, so I'm still working on getting it back up. I'm on 2L of O2 full time. Resting that puts me at 97% and during exercise around 94% if I'm good...
  14. K

    What is your FEV1 Score?

    Last visit I was about 36% following xopenex. Before xopenex I'm at about 32%. My previous baseline was lower 40s, but I crashed pretty hard last summer, so I'm still working on getting it back up. I'm on 2L of O2 full time. Resting that puts me at 97% and during exercise around 94% if I'm good...
  15. K

    Question for those with ports or considering a port

    My first port was actually in my arm. I had it for nearly ten years before it literally started to disintegrate. I actually still have a piece of it that is stuck in my arm. I now have one in my chest. I don't self access, but I do de-access. (Which I was able to do fine with the arm port) The...
  16. K

    Question for those with ports or considering a port

    My first port was actually in my arm. I had it for nearly ten years before it literally started to disintegrate. I actually still have a piece of it that is stuck in my arm. I now have one in my chest. I don't self access, but I do de-access. (Which I was able to do fine with the arm port) The...
  17. K

    PICC line

    This happened to me before. I was in the hospital and nurses kept bolting in my room to see if everything was okay. The doc realized it was the picc, they pulled it back and the heart palpitations stopped.
  18. K

    PICC line

    This happened to me before. I was in the hospital and nurses kept bolting in my room to see if everything was okay. The doc realized it was the picc, they pulled it back and the heart palpitations stopped.
  19. K

    cannula keeps coming out at night

    You could try wearing it "backwards". So it would go over your ears and around the back of your head instead of hanging in the front. Cinch it up so it's not loose, that may help it from falling off.
  20. K

    cannula keeps coming out at night

    You could try wearing it "backwards". So it would go over your ears and around the back of your head instead of hanging in the front. Cinch it up so it's not loose, that may help it from falling off.
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