Hi Everybody,
I have been lurking on your board for the past couple of weeks because there is evidently a chance I have CF.
I am in my 40s and have had pneumonia 5 times. The last time was 3 years ago, and it knocked me out for several months and I even broke a rib from the coughing. Ever since then I have had problems with chronic sinusitis, shortness of breath, chest pain, and in general feel horrible most of the time. I cough but don't usually bring up phlegm, except when I have an acute illness - bronchitis or sinusitis.
My doctors (including a leading pulmonologies where I live) have tested me for zillions of things but have found nothing except bronchiectasis and chronic sinusitis. Nebulizer treatments and 7 months of antibiotics didn't resolve the situation. Out of frustration I stopped taking all meds for 6 months and my FEV1 dropped from 89% to 78%. Now I am on seretide (diskus) and flixonase and have gotten the FEV1 up to 85%. I walk 3 or 4 times a week for more than an hour except for the times when I feel too terrible to move. My hope is that whatever I have this is helping.
A couple of weeks ago a friend of mine who is a pediatrician saw me with shortness of breath so bad that I could hardly talk, and insisted that I get someone to test me for CF. I had the sweat test (conductivity test actually) and got a result of 36, which I was told is normal. Is it?
I insisted on genetic testing, and am now waiting for the results of that. Since I don't live in the US I doubt that they are doing the Ambry. However, since I am an Ashkenazi Jew is the Ambry really necessary?
Thanks in advance to all of you. I have learned a lot from your posts, and take my hat off to you all. I would be greatful for you thoughts on whether you think this might be CF, and any other advise you can give!
I have been lurking on your board for the past couple of weeks because there is evidently a chance I have CF.
I am in my 40s and have had pneumonia 5 times. The last time was 3 years ago, and it knocked me out for several months and I even broke a rib from the coughing. Ever since then I have had problems with chronic sinusitis, shortness of breath, chest pain, and in general feel horrible most of the time. I cough but don't usually bring up phlegm, except when I have an acute illness - bronchitis or sinusitis.
My doctors (including a leading pulmonologies where I live) have tested me for zillions of things but have found nothing except bronchiectasis and chronic sinusitis. Nebulizer treatments and 7 months of antibiotics didn't resolve the situation. Out of frustration I stopped taking all meds for 6 months and my FEV1 dropped from 89% to 78%. Now I am on seretide (diskus) and flixonase and have gotten the FEV1 up to 85%. I walk 3 or 4 times a week for more than an hour except for the times when I feel too terrible to move. My hope is that whatever I have this is helping.
A couple of weeks ago a friend of mine who is a pediatrician saw me with shortness of breath so bad that I could hardly talk, and insisted that I get someone to test me for CF. I had the sweat test (conductivity test actually) and got a result of 36, which I was told is normal. Is it?
I insisted on genetic testing, and am now waiting for the results of that. Since I don't live in the US I doubt that they are doing the Ambry. However, since I am an Ashkenazi Jew is the Ambry really necessary?
Thanks in advance to all of you. I have learned a lot from your posts, and take my hat off to you all. I would be greatful for you thoughts on whether you think this might be CF, and any other advise you can give!