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  1. H

    CFF logo with no background

    Can you load an image of the CFF logo (white background) onto your computer, crop the edges just a little so it looks like it's 'floating' on just the white in the dimension/proportion of his flyer, open it with a program like Paint and use the fill (or whatever it's called) feature to turn the...
  2. H

    We can't put it off any longer <sigh>

    I would ask if any of the surgeons in the dept do the buttons ...some did and some did not in ours so it could just be that the one particular dr you are using may not. It's often a matter of preference and what they are used to more than what is medically necessary. Some place them...
  3. H

    We can't put it off any longer <sigh>

    I would ask if any of the surgeons in the dept do the buttons ...some did and some did not in ours so it could just be that the one particular dr you are using may not. It's often a matter of preference and what they are used to more than what is medically necessary. Some place them...
  4. H

    We can't put it off any longer <sigh>

    I would ask if any of the surgeons in the dept do the buttons ...some did and some did not in ours so it could just be that the one particular dr you are using may not. It's often a matter of preference and what they are used to more than what is medically necessary. Some place them...
  5. H

    Diagnosed at age 50

    I'd ask for them to do at least a throat swab then. It's worth a try. It will often turn up things like pseudomonas or other bugs in asymptomatic children who never cough up sputum, so it's worth a try! Worst it can do is come back normal flora and you are no worse off than you are right now...
  6. H

    Diagnosed at age 50

    I'd ask for them to do at least a throat swab then. It's worth a try. It will often turn up things like pseudomonas or other bugs in asymptomatic children who never cough up sputum, so it's worth a try! Worst it can do is come back normal flora and you are no worse off than you are right now...
  7. H

    Diagnosed at age 50

    I'd ask for them to do at least a throat swab then. It's worth a try. It will often turn up things like pseudomonas or other bugs in asymptomatic children who never cough up sputum, so it's worth a try! Worst it can do is come back normal flora and you are no worse off than you are right now...
  8. H

    colon tissue test used to dx CF, maybe next year

    I can see this being of special benefit with those who may have strong digestive symptoms but who may still have normal/near normal respiratory function. For example, when sweat tests are inconclusive, a test one can turn to is the NPD- but without respiratory involvement I wonder if that is...
  9. H

    colon tissue test used to dx CF, maybe next year

    I can see this being of special benefit with those who may have strong digestive symptoms but who may still have normal/near normal respiratory function. For example, when sweat tests are inconclusive, a test one can turn to is the NPD- but without respiratory involvement I wonder if that is...
  10. H

    colon tissue test used to dx CF, maybe next year

    I can see this being of special benefit with those who may have strong digestive symptoms but who may still have normal/near normal respiratory function. For example, when sweat tests are inconclusive, a test one can turn to is the NPD- but without respiratory involvement I wonder if that is...
  11. H

    We can't put it off any longer <sigh>

    Emily was only restricted from water activities for 2wks- I am shocked that you are being told that he can't swim! For tubing, maybe tape something over it to cover it to help keep it in place and wear one of those spf tops that they sell now to match all the bathing suits if he's afraid he'll...
  12. H

    We can't put it off any longer <sigh>

    Emily was only restricted from water activities for 2wks- I am shocked that you are being told that he can't swim! For tubing, maybe tape something over it to cover it to help keep it in place and wear one of those spf tops that they sell now to match all the bathing suits if he's afraid he'll...
  13. H

    We can't put it off any longer <sigh>

    Emily was only restricted from water activities for 2wks- I am shocked that you are being told that he can't swim! For tubing, maybe tape something over it to cover it to help keep it in place and wear one of those spf tops that they sell now to match all the bathing suits if he's afraid he'll...
  14. H

    Quirky Question

    Emily's social worker asks on a regular basis what kind of support system I have when it comes to dealing with CF and i have told her about this website. I've told her how much (reputable) online resources have been able to help in becoming informed about CF and in coping with it- since CF is...
  15. H

    Quirky Question

    Emily's social worker asks on a regular basis what kind of support system I have when it comes to dealing with CF and i have told her about this website. I've told her how much (reputable) online resources have been able to help in becoming informed about CF and in coping with it- since CF is...
  16. H

    Quirky Question

    Emily's social worker asks on a regular basis what kind of support system I have when it comes to dealing with CF and i have told her about this website. I've told her how much (reputable) online resources have been able to help in becoming informed about CF and in coping with it- since CF is...
  17. H

    cf in ten years?

    After reading the posts following mine, it made me think a little more- when my daughter was born in 2001, the projected median age was just over 32. Ten years later it's 37. Most of the treatments available now were available then- with the notable exception of Cayston. Vertex (and hopefully...
  18. H

    cf in ten years?

    After reading the posts following mine, it made me think a little more- when my daughter was born in 2001, the projected median age was just over 32. Ten years later it's 37. Most of the treatments available now were available then- with the notable exception of Cayston. Vertex (and hopefully...
  19. H

    cf in ten years?

    After reading the posts following mine, it made me think a little more- when my daughter was born in 2001, the projected median age was just over 32. Ten years later it's 37. <br /> <br />Most of the treatments available now were available then- with the notable exception of Cayston. Vertex...
  20. H

    cf in ten years?

    I see the daily burden of care still being about the same, but if the Vertex drugs 'work', this care will accomplish more and result in better QOL for longer.
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