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I second what Printer said. My daughter remains in CF diagnostic limbo, but her FEV1 has gone from 55% Jan 2011 to 100% Jan 2012 with CF treatment. I stayed with the same pulmonologist for 8 years and regret it because my daughter age 12 does have permanent lung damage and lungs colonized with...

I second what Printer said. My daughter remains in CF diagnostic limbo, but her FEV1 has gone from 55% Jan 2011 to 100% Jan 2012 with CF treatment. I stayed with the same pulmonologist for 8 years and regret it because my daughter age 12 does have permanent lung damage and lungs colonized with...

Annomie, I read your post how do you manage multiple medicines with only 1 nebulizer. I think you may be confusing the nebulizer's compressor with the nebulizer cups. The "neb" people write about are the nubulizer cups you put the medicine into and the compressors are the engines so to speak...

Annomie, I read your post how do you manage multiple medicines with only 1 nebulizer. I think you may be confusing the nebulizer's compressor with the nebulizer cups. The "neb" people write about are the nubulizer cups you put the medicine into and the compressors are the engines so to speak...

We received our daughter's sweat test results the same day the test was done. Was the test done at an accredited CF center? The wait must be very painful. As for the genetic tests one of my daughter's was done by quest and took months and the other daughter's genetics was done by Ambry and we...

We received our daughter's sweat test results the same day the test was done. Was the test done at an accredited CF center? The wait must be very painful. As for the genetic tests one of my daughter's was done by quest and took months and the other daughter's genetics was done by Ambry and we...

I posted a similar question to Steve at Ambry on this site. I am not a medical person, but my understanding is that 7T and 9T are thought to NOT be disease causing. A 5T variant with a disease causing genetic mutation is thought to cause a mild CF. If you have one CF causing gene and 7T/9T...

I posted a similar question to Steve at Ambry on this site. I am not a medical person, but my understanding is that 7T and 9T are thought to NOT be disease causing. A 5T variant with a disease causing genetic mutation is thought to cause a mild CF. If you have one CF causing gene and 7T/9T...

I have been trying to become a more knowledgable advocate for my daughter and came across this website. It is not a .edu .gov etc. website. Can anyone with a better understanding of PFTs tell me if this worksheet makes sense to them? <a...

I have been trying to become a more knowledgable advocate for my daughter and came across this website. It is not a .edu .gov etc. website. Can anyone with a better understanding of PFTs tell me if this worksheet makes sense to them? <a...

Tom, my thoughts and preyers are with you and your family. Jen

Tom, my thoughts and preyers are with you and your family. Jen

My 12 year old uses 7% hypertonic saline and can't stand it if the vapor gets in her eyes. She wears contacts and sometimes glassses. When she wears her contacts we have to flush her eyes with tons of contact rewetting drops or the contacts get glued to her eyes after the neb with hypertonic...

My 12 year old uses 7% hypertonic saline and can't stand it if the vapor gets in her eyes. She wears contacts and sometimes glassses. When she wears her contacts we have to flush her eyes with tons of contact rewetting drops or the contacts get glued to her eyes after the neb with hypertonic...

I am not a doctor, but my understanding is that you inherit one Poly T from each parent so your son got a 7T from you and a 7T from his father. I am told that 7T and 9T are not disease causing, but 5T with a known disease causing mutation can cause mild CF symtoms. I posted a similar question...

I am not a doctor, but my understanding is that you inherit one Poly T from each parent so your son got a 7T from you and a 7T from his father. I am told that 7T and 9T are not disease causing, but 5T with a known disease causing mutation can cause mild CF symtoms. I posted a similar question...

I was wondering how his sweat test came back positive after all these years. My daughter has Ehlers Danlos Syndrome which is a connective tissue disorder that affects the skin and joints. Her sweat test is negative, her nasal potential difference test 1 positive adn 1 negative, and she has 1...

I was wondering how his sweat test came back positive after all these years. My daughter has Ehlers Danlos Syndrome which is a connective tissue disorder that affects the skin and joints. Her sweat test is negative, her nasal potential difference test 1 positive adn 1 negative, and she has 1...

We have traveled within the United States with my daughter's Hill Rom 105 vest and we want to travel to Japan for Spring break. I read many of the travel postings and I am confident that the vest will fit on the plane. Has anyone taken the Hill Rom 105 vest on a bullet train in Japan. I read...

We have traveled within the United States with my daughter's Hill Rom 105 vest and we want to travel to Japan for Spring break. I read many of the travel postings and I am confident that the vest will fit on the plane. Has anyone taken the Hill Rom 105 vest on a bullet train in Japan. I read...