Cystic Fibrosis Forum (EXP)

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  1. J

    Compressor for nebulizer

    I'm hoping someone has a brilliant idea to help me out. I'm looking for a quieter compressor to use with my nebbed drugs at work. Right now I have the ProNeb Ultra, and I find myself not doing treatments that I should because I don't want to create the noise. Now, yes I do realize that it's...
  2. J

    What does this mean???

    I'm not sure how it works in canada, but I'd say insist on getting the test done at the actual children's hospital, because that's the test which has been thoroughly developed and examined and has been developed through peer-reviewed processes. On the "normal" sweat test, regardless of which...
  3. J

    What does this mean???

    I'm not sure how it works in canada, but I'd say insist on getting the test done at the actual children's hospital, because that's the test which has been thoroughly developed and examined and has been developed through peer-reviewed processes. On the "normal" sweat test, regardless of which...
  4. J

    What does this mean???

    I'm not sure how it works in canada, but I'd say insist on getting the test done at the actual children's hospital, because that's the test which has been thoroughly developed and examined and has been developed through peer-reviewed processes. On the "normal" sweat test, regardless of which...
  5. J

    Welcome Ambry Genetics

    Steve, two bonus question. 1. How are polymorphisms considered in the ambry amplified? 2. The ambry amplified exams all of the exons on the CFTR gene along with the borders of the exons with neighboring introns right? Does it also look at the promoter region of the gene...
  6. J

    Welcome Ambry Genetics

    I'm definitely curious about this. Given a 99% probability of success in identifying a mutation if one is present, it seems that the probability of the test not detecting a single mutation in an individual who has cystic fibrosis should be around .01% or one-hundredth of one percent. The Ambry...
  7. J

    tobramycin for sinuses

    My pulmonologist recommended that I talk to my ENT about what he thinks of treating my sinuses wtih serial tobramycin. However, when I was reading up on this on the internet, I came across two ways this is done: using tobi in a nebulizer with a sinus attachment or using iv form tobramycin for...
  8. J

    tobramycin for sinuses

    My pulmonologist recommended that I talk to my ENT about what he thinks of treating my sinuses wtih serial tobramycin. However, when I was reading up on this on the internet, I came across two ways this is done: using tobi in a nebulizer with a sinus attachment or using iv form tobramycin for...
  9. J

    tobramycin for sinuses

    My pulmonologist recommended that I talk to my ENT about what he thinks of treating my sinuses wtih serial tobramycin. However, when I was reading up on this on the internet, I came across two ways this is done: using tobi in a nebulizer with a sinus attachment or using iv form tobramycin for...
  10. J

    mucopurulent rhinorrhea

    Hoping someone more medical than me can confirm if I'm understanding this term correctly.
  11. J

    mucopurulent rhinorrhea

    Hoping someone more medical than me can confirm if I'm understanding this term correctly.
  12. J

    mucopurulent rhinorrhea

    Hoping someone more medical than me can confirm if I'm understanding this term correctly.
  13. J

    Searchingforanswers

    Any more progress on the getting medical treatment, testing, etc front?
  14. J

    Searchingforanswers

    Any more progress on the getting medical treatment, testing, etc front?
  15. J

    Searchingforanswers

    Any more progress on the getting medical treatment, testing, etc front?
  16. J

    Welcome Ambry Genetics

    Genetics testing I was recently diagnosed at the age of 25 as having cystic fibrosis. This diagnosis was based on three definitely positive sweat tests. After seeing the cf clinic for a while, they sent my bloodwork off for analysis at Ambry through the full mutation analysis. I'm not sure...
  17. J

    Amy

    One thought regarding Amy.   I think those parents who have objected to Amy in the past should take a moment and think about their own child with CF.  How would you like your child treated by others?  Even if they were being a little tactless or perhaps juvenile?  It seems likely that you...
  18. J

    Amy

    One thought regarding Amy.   I think those parents who have objected to Amy in the past should take a moment and think about their own child with CF.  How would you like your child treated by others?  Even if they were being a little tactless or perhaps juvenile?  It seems likely that you...
  19. J

    Amy

    One thought regarding Amy.   I think those parents who have objected to Amy in the past should take a moment and think about their own child with CF.  How would you like your child treated by others?  Even if they were being a little tactless or perhaps juvenile?  It seems likely that you...
  20. J

    Enzymes ...

    I'm wondering what people's experiences have been with not taking their enzymes.  What symptoms occur?  What foods are particularly bad?  Before I was diagnosed, the doctors had taken me off of milk products, so I'm guessing that's a big trigger, but I'm wondering about other peoples...
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