Hi Everybody,
This past summer I was in the process of being evaluated for CF and I posted several times to these boards. First of all, I want to thank you all. You helped me get through a very rough time and you provided lots of important information. Your support for each other, and for perfect strangers like me, is incredible. It meant a lot to me. I take my hat off to all of you for your approach to your lives in general and to this difficult disease.
Just to remind you of my story, I am in my 40s and have had pneumonia 5 times and countless cases of bronchitis and sinusitis. 4 years ago I had pneumonia that knocked me out for several months (included a partially collapsed lung) 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 a lot of the time. I cough but don't usually bring up phlegm, except when I have an acute illness - bronchitis or sinusitis. I am and have alway been extremely thin, but have never had any digestive problems.
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% (while feeling bad) to 78%. Now I am on seretide (diskus) and flixonase and have gotten the FEV1 up to 88%. 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.
Last summer 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. To make a long story short, the results of the genetic testing were negative and the leading CF center where I live categorically said I do not have CF because of the negative tests (genetic panel for European Jewish origins and sweat test) and not enough lung damage on the CT scan. I asked about being tested for PCD and they refused because - 1) not enough lung damage 2) there is no cure/treatment anyway for PCD. So, I remain with no clear diagnosis.
So what am I doing back on your boards? I am thankful that I do not have CF and I know that what I am going through is nothing compared to many of you.
However, I hope to learn from both your medical insight and how you cope with these types of symptoms if you are willing to accept me here. You are the first group of people who seemed to understand the symptoms I describe and you are a very supportive group.
Happy Holidays to all of you!!!
This past summer I was in the process of being evaluated for CF and I posted several times to these boards. First of all, I want to thank you all. You helped me get through a very rough time and you provided lots of important information. Your support for each other, and for perfect strangers like me, is incredible. It meant a lot to me. I take my hat off to all of you for your approach to your lives in general and to this difficult disease.
Just to remind you of my story, I am in my 40s and have had pneumonia 5 times and countless cases of bronchitis and sinusitis. 4 years ago I had pneumonia that knocked me out for several months (included a partially collapsed lung) 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 a lot of the time. I cough but don't usually bring up phlegm, except when I have an acute illness - bronchitis or sinusitis. I am and have alway been extremely thin, but have never had any digestive problems.
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% (while feeling bad) to 78%. Now I am on seretide (diskus) and flixonase and have gotten the FEV1 up to 88%. 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.
Last summer 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. To make a long story short, the results of the genetic testing were negative and the leading CF center where I live categorically said I do not have CF because of the negative tests (genetic panel for European Jewish origins and sweat test) and not enough lung damage on the CT scan. I asked about being tested for PCD and they refused because - 1) not enough lung damage 2) there is no cure/treatment anyway for PCD. So, I remain with no clear diagnosis.
So what am I doing back on your boards? I am thankful that I do not have CF and I know that what I am going through is nothing compared to many of you.
However, I hope to learn from both your medical insight and how you cope with these types of symptoms if you are willing to accept me here. You are the first group of people who seemed to understand the symptoms I describe and you are a very supportive group.
Happy Holidays to all of you!!!