Cystic Fibrosis Forum (EXP)

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  1. J

    No A.C. at work!

    You have to make your own decision. I worked in an indoor/outdoor dirt lab (literally) for 3 years. I back and forth between the best health in my life because of the physical work to having issues with the dust. Maybe some regular sinus appointments will aleve you of your issues, maybe not. <br...
  2. J

    can we talk poop?

    Bright green, for me, means too much cheese/dairy without enough enzymes. Try Miralax with the same enzymes and increase enzymes if things get crazy then. Constipation doesn't happen to me, only blockages. Too many/too few enzymes both create looseness for me.
  3. J

    can we talk poop?

    Bright green, for me, means too much cheese/dairy without enough enzymes. Try Miralax with the same enzymes and increase enzymes if things get crazy then. Constipation doesn't happen to me, only blockages. Too many/too few enzymes both create looseness for me.
  4. J

    can we talk poop?

    Bright green, for me, means too much cheese/dairy without enough enzymes. Try Miralax with the same enzymes and increase enzymes if things get crazy then. Constipation doesn't happen to me, only blockages. Too many/too few enzymes both create looseness for me.
  5. J

    CF Vest used?

    There aren't any on eBay at the moment... They are Rx only, I believe. You should be able to donate it for a tax receipt.
  6. J

    CF Vest used?

    There aren't any on eBay at the moment... They are Rx only, I believe. You should be able to donate it for a tax receipt.
  7. J

    CF Vest used?

    There aren't any on eBay at the moment... They are Rx only, I believe. You should be able to donate it for a tax receipt.
  8. J

    STARTING CAYSTON

    They say 4 hours apart. That was also the rule during the trial. I usually do about a 5 hour gap and a 7 or 8 hour gap. For me, off months are the drop. Never put it in alcohol. This document came from my CF team: <a target=_blank class=ftalternatingbarlinklarge...
  9. J

    STARTING CAYSTON

    They say 4 hours apart. That was also the rule during the trial. I usually do about a 5 hour gap and a 7 or 8 hour gap. For me, off months are the drop. Never put it in alcohol. This document came from my CF team: <a target=_blank class=ftalternatingbarlinklarge...
  10. J

    STARTING CAYSTON

    They say 4 hours apart. That was also the rule during the trial. I usually do about a 5 hour gap and a 7 or 8 hour gap. <br /> <br />For me, off months are the drop. <br /> <br />Never put it in alcohol. This document came from my CF team: <a target=_blank class=ftalternatingbarlinklarge...
  11. J

    how to know if i have bowel blockage

    If the pain comes in waves on a consistent basis, you need to get the CF doc to notify the ER that you're coming or just go to the ER. They will do x-rays at the least and a contrast CT scan and/or gastrografin enema at the most. For me, a WARM gastrografin enema always clears me out because I...
  12. J

    how to know if i have bowel blockage

    If the pain comes in waves on a consistent basis, you need to get the CF doc to notify the ER that you're coming or just go to the ER. They will do x-rays at the least and a contrast CT scan and/or gastrografin enema at the most. For me, a WARM gastrografin enema always clears me out because I...
  13. J

    how to know if i have bowel blockage

    If the pain comes in waves on a consistent basis, you need to get the CF doc to notify the ER that you're coming or just go to the ER. They will do x-rays at the least and a contrast CT scan and/or gastrografin enema at the most. For me, a WARM gastrografin enema always clears me out because I...
  14. J

    I wish I could do something

    Is she compliant in every other way if their income is so low? Perhaps there are some medical support systems there in S.A. that can get her Cayston or TOBI/tobra that will help when not in the hospital. Another thing to consider is the situation in the hospital - private room? Good standards to...
  15. J

    I wish I could do something

    Is she compliant in every other way if their income is so low? Perhaps there are some medical support systems there in S.A. that can get her Cayston or TOBI/tobra that will help when not in the hospital. Another thing to consider is the situation in the hospital - private room? Good standards to...
  16. J

    I wish I could do something

    Is she compliant in every other way if their income is so low? Perhaps there are some medical support systems there in S.A. that can get her Cayston or TOBI/tobra that will help when not in the hospital. Another thing to consider is the situation in the hospital - private room? Good standards to...
  17. J

    CONFUSED ABOUT CAYSTON

    My staff says to always use sterile water, not tap water.
  18. J

    CONFUSED ABOUT CAYSTON

    My staff says to always use sterile water, not tap water.
  19. J

    CONFUSED ABOUT CAYSTON

    My staff says to always use sterile water, not tap water.
  20. J

    Okay, almost in tears-frustrated

    I'm 31 and have had pseudomonas my whole life. There is no guarantee that it will ever get eradicated. Just being in the hospital or clinc is a risk of getting it or getting a worse form. Perhaps ask about home IVs to rid it. Tobramyacin and another antibiotic in conjunction just might do it, so...
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