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  1. J

    Oxygen Concentrator Question

    I would have someone from the rental company come out and check it to make sure the concentrator is accurate, they have a device that does just this. I think it has to read at least 96% accuracy....that is what my DME company requires, it could be different with yours . I too have a...
  2. J

    Tigacycline IV

    No, I haven't with this drug....just terrible nausea and vomiting for me. I would let your doc know about this though, just in case something needs to be tweaked. Hope you feel better soon! Jenn 40 wCF
  3. J

    Tigacycline IV

    No, I haven't with this drug....just terrible nausea and vomiting for me. I would let your doc know about this though, just in case something needs to be tweaked. Hope you feel better soon! Jenn 40 wCF
  4. J

    Other daughter is getting tested.

    Keeping you in my thoughts......this must be very difficult for your whole family. Jenn 40 wCF
  5. J

    Other daughter is getting tested.

    Keeping you in my thoughts......this must be very difficult for your whole family. Jenn 40 wCF
  6. J

    2 children possible cf

    With sweat tests ranging from intermediate to positive in both kids, I would absolutely push for the full genetic sequencing (which tests for all known mutations). Also, kids don't have to be failure to thrive in order to have CF. In a small percentage of CF'ers, their pancreas is functioning...
  7. J

    2 children possible cf

    With sweat tests ranging from intermediate to positive in both kids, I would absolutely push for the full genetic sequencing (which tests for all known mutations). Also, kids don't have to be failure to thrive in order to have CF. In a small percentage of CF'ers, their pancreas is functioning...
  8. J

    Boarderline

    I have borderline sweats (50 last time it was checked) and I have CF. There is always a possibility of CF even if the sweats aren't distinctly positive. I was finally diagnosed at 33, I am 40 now after years of symptoms. I hope the genetics can give you guys a more definitive answer. Mine showed...
  9. J

    Boarderline

    I have borderline sweats (50 last time it was checked) and I have CF. There is always a possibility of CF even if the sweats aren't distinctly positive. I was finally diagnosed at 33, I am 40 now after years of symptoms. I hope the genetics can give you guys a more definitive answer. Mine showed...
  10. J

    Feel Like He's Killing Himself- Please Please Help

    It has to be hard to be on the sidelines and feel helpless when it comes to medications etc.....How are his sugars? Being that he is on transplant meds (probably includes steroids of sorts), his sugar levels are at risk of being high....If they remain high, I don't need to tell you that his...
  11. J

    Feel Like He's Killing Himself- Please Please Help

    It has to be hard to be on the sidelines and feel helpless when it comes to medications etc.....How are his sugars? Being that he is on transplant meds (probably includes steroids of sorts), his sugar levels are at risk of being high....If they remain high, I don't need to tell you that his...
  12. J

    Starting Oxygen at Night

    I would say any time you are sleeping, you should wear your O2 as your levels drop when you are snoozing. Even if it is for a hour, it is still beneficial to you! Heating blankets I think are okay, the big thing was always never use any fire near O2 or cook over a gas stove with it. Common sense...
  13. J

    Starting Oxygen at Night

    I would say any time you are sleeping, you should wear your O2 as your levels drop when you are snoozing. Even if it is for a hour, it is still beneficial to you! Heating blankets I think are okay, the big thing was always never use any fire near O2 or cook over a gas stove with it. Common sense...
  14. J

    Anyone on inhaled or IV colistion?

    I am on nebbed colistin every day, thankfully my part D insurance (mediare) picks it up. I get mine through foundation care. I don't remember if you have insurance or not...if not, then there may be programs out there that can help. Jenn 40 w/CF
  15. J

    Anyone on inhaled or IV colistion?

    I am on nebbed colistin every day, thankfully my part D insurance (mediare) picks it up. I get mine through foundation care. I don't remember if you have insurance or not...if not, then there may be programs out there that can help. Jenn 40 w/CF
  16. J

    Bacterial crowding?

    Wow, Incomudrux.....you just described my current plight with bugs. I too have MSSA and PA (along with other gram neg bugs) but usually the staph is what is the most predominant bacteria in my cultures. The funny thing is, whenever I am treated JUST for the staph, the PA and other bugs take hold...
  17. J

    Bacterial crowding?

    Wow, Incomudrux.....you just described my current plight with bugs. I too have MSSA and PA (along with other gram neg bugs) but usually the staph is what is the most predominant bacteria in my cultures. The funny thing is, whenever I am treated JUST for the staph, the PA and other bugs take hold...
  18. J

    Barriers to your care?

    Some meds that my doctor wants me on, I am not covered for or I would have to pay a huge amount for them. Cayston is one such med. I have been on Colistin for a few years now, does well but my doc wants to alternate that with Cayston to get good PA coverage and I haven't been able to. Enzymes...
  19. J

    Barriers to your care?

    Some meds that my doctor wants me on, I am not covered for or I would have to pay a huge amount for them. Cayston is one such med. I have been on Colistin for a few years now, does well but my doc wants to alternate that with Cayston to get good PA coverage and I haven't been able to. Enzymes...
  20. J

    Starting Oxygen at Night

    Nasal irritation is the most bothersome as Jane said.....I wouldn't put vaseline in my nostrils though, anything petroleum based is a no no as it can be aspirated into the lungs and cause a funky pneumonia. I suggest Ayr (water based lubricant), even K Y Jelly (fragrance free).....as long as it...
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