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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.

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.

I found a GREAT link describing the NPD test, comparing how normal vs. CF results would look. It was SO interesting to compare this with Shawn's NPD test results. Oh and BTW my son's results also say that a baseline of -30 to -75 is typically seen in those with CF. By comparison- my son has had...

I found a GREAT link describing the NPD test, comparing how normal vs. CF results would look. It was SO interesting to compare this with Shawn's NPD test results. Oh and BTW my son's results also say that a baseline of -30 to -75 is typically seen in those with CF. By comparison- my son has had...

I found a GREAT link describing the NPD test, comparing how normal vs. CF results would look. It was SO interesting to compare this with Shawn's NPD test results. Oh and BTW my son's results also say that a baseline of -30 to -75 is typically seen in those with CF. By comparison- my son has had...

I agree with Lauren above on the potential pitfalls of getting a CRMS dx vs. CF. Even if it hasn't happened yet, I believe insurance will start using this difference between the dx'es in deciding what they will and won't cover in treatments, to the potential detriment of those with the CRMS dx...

I agree with Lauren above on the potential pitfalls of getting a CRMS dx vs. CF. Even if it hasn't happened yet, I believe insurance will start using this difference between the dx'es in deciding what they will and won't cover in treatments, to the potential detriment of those with the CRMS dx...

I agree with Lauren above on the potential pitfalls of getting a CRMS dx vs. CF. Even if it hasn't happened yet, I believe insurance will start using this difference between the dx'es in deciding what they will and won't cover in treatments, to the potential detriment of those with the CRMS dx...

Some of the kids cannot cough up mucus very well either. On occasion they are given a dose of hypertonic saline to neb, which induces coughing and bringing up sputum. They also (more commonly) have the kids huff and cough a few times and then without swallowing swab as far back in the throat as...

Some of the kids cannot cough up mucus very well either. On occasion they are given a dose of hypertonic saline to neb, which induces coughing and bringing up sputum. They also (more commonly) have the kids huff and cough a few times and then without swallowing swab as far back in the throat as...

Some of the kids cannot cough up mucus very well either. On occasion they are given a dose of hypertonic saline to neb, which induces coughing and bringing up sputum. They also (more commonly) have the kids huff and cough a few times and then without swallowing swab as far back in the throat as...

I don't know the answer to your question... I just wanted to post and let you know I empathize with your wait for answers! I wish someone here could help you~ I think I've only heard of someone having this test once here and it was a long time ago. :-( I will see if I can dig anything up for...

I don't know the answer to your question... I just wanted to post and let you know I empathize with your wait for answers! I wish someone here could help you~ I think I've only heard of someone having this test once here and it was a long time ago. :-( I will see if I can dig anything up for...

I don't know the answer to your question... I just wanted to post and let you know I empathize with your wait for answers! I wish someone here could help you~ I think I've only heard of someone having this test once here and it was a long time ago. :-( <br /> <br />I will see if I can dig...

PA= pseudomonas aeruginosa. The lungs of those with CF can become colonized with many different pathogens. PA is the most common and most with CF eventually become colonized with it. Depending on your health at the time, it is treated with various combinations of antibiotics. Did you give a...

PA= pseudomonas aeruginosa. The lungs of those with CF can become colonized with many different pathogens. PA is the most common and most with CF eventually become colonized with it. Depending on your health at the time, it is treated with various combinations of antibiotics. Did you give a...

PA= pseudomonas aeruginosa. <br /> <br />The lungs of those with CF can become colonized with many different pathogens. PA is the most common and most with CF eventually become colonized with it. Depending on your health at the time, it is treated with various combinations of antibiotics. Did...

Sarah~ to get this straight~ all the kids sit out in a huge shared waiting room for an indeterminate amount of time (so for all you know, you could have someone else with cf right next to you and at the least many in the room are sick with varied illnesses), and then no one that comes in to care...

Sarah~ to get this straight~ all the kids sit out in a huge shared waiting room for an indeterminate amount of time (so for all you know, you could have someone else with cf right next to you and at the least many in the room are sick with varied illnesses), and then no one that comes in to care...

Sarah~ to get this straight~ all the kids sit out in a huge shared waiting room for an indeterminate amount of time (so for all you know, you could have someone else with cf right next to you and at the least many in the room are sick with varied illnesses), and then no one that comes in to care...