Hi all...I know what you mean Emily, sometimes I just want to throw my arms up and say just admit me, I think I would have done that if I had 3 or 4 different IV's going in me, I would never sleep then!
Rebekah, I was just diagnosed at 33, now am 34 but when I look back, I believe that I had problems with breathing even in my childhood years and chalked it up to just being a slow runner or just having allergies, which explains why I hated track. As I got older, my symptoms got worse and the docs finally officially diagnosed me with "asthma" and started to treat it. I also got pneumonia at least once a year, this was in my twenties. When I hit 30, my breathing problems changed, I knew that my shortness of breath wasn't run of the milll asthma, but the docs kept loading me with steroids despite my pleas that this wasn't asthma, it felt differnent. I was finally diagnosed with neuromuscular disease, no real name to it but I came home on O2 and was on that for a few years. Meanwhile, I still got all of the respiratory infections, I think I was on antibiotics at least once a month. I did have to go on BiPAP, over a few years, the use went to 24/7 and my quality of life really sucked, I didn't tolerate coming off, my diaphragm was non functional at that time so I was vented. Fast forward to now, I began to get wierd infections of my lungs, uncommon bugs even for a person on a vent and my doc really began to suspect CF at that point. So..got my sweat test and it came back high borderline with more chloride than sodium in my sweat, it was repeated and the same result came back. My pancreas doesn't function like it should, doesn't produce enough of its own enzymes and so now I wait for the extensive panel to come back. Also, I have always had extremely thick sputum, even prior to the vent. Because of my symptoms and such, I was diagnosed with CF, atypical. I am also B. cepacia positive, very resistant strain. So, that's me in a nut shell.
Hugs to all of my friends here who have and continue to support me...still tired, but hanging in there! Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
Rebekah, I was just diagnosed at 33, now am 34 but when I look back, I believe that I had problems with breathing even in my childhood years and chalked it up to just being a slow runner or just having allergies, which explains why I hated track. As I got older, my symptoms got worse and the docs finally officially diagnosed me with "asthma" and started to treat it. I also got pneumonia at least once a year, this was in my twenties. When I hit 30, my breathing problems changed, I knew that my shortness of breath wasn't run of the milll asthma, but the docs kept loading me with steroids despite my pleas that this wasn't asthma, it felt differnent. I was finally diagnosed with neuromuscular disease, no real name to it but I came home on O2 and was on that for a few years. Meanwhile, I still got all of the respiratory infections, I think I was on antibiotics at least once a month. I did have to go on BiPAP, over a few years, the use went to 24/7 and my quality of life really sucked, I didn't tolerate coming off, my diaphragm was non functional at that time so I was vented. Fast forward to now, I began to get wierd infections of my lungs, uncommon bugs even for a person on a vent and my doc really began to suspect CF at that point. So..got my sweat test and it came back high borderline with more chloride than sodium in my sweat, it was repeated and the same result came back. My pancreas doesn't function like it should, doesn't produce enough of its own enzymes and so now I wait for the extensive panel to come back. Also, I have always had extremely thick sputum, even prior to the vent. Because of my symptoms and such, I was diagnosed with CF, atypical. I am also B. cepacia positive, very resistant strain. So, that's me in a nut shell.
Hugs to all of my friends here who have and continue to support me...still tired, but hanging in there! Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">