Hmmm...that's a good question as I have only been recently been diagnosed with CF. I believe that I started having issues when I was younger, school age when I tried to run in track, I just couldn't keep up with the other kids. I felt out of breath. As I got older I was diagnosed with asthma and hospitialized at least once a year with asthma and or pneumonia. What finally got the docs suspicous was when I started culturing bugs like pseudomonas, cepacia, staph and even maltophilia as well as intolerance to fatty foods at all. Not to mention the sweat tests. I am 33 years old right now. For those who don't know me, I am vent dependent because of a rare type of muscular dystrophy that led to early respiratory failure (lucky me, this is also inherited) At first, the docs believed that the pathogens were related to the ventilator itself, but then these other pieces of the puzzle started to come up. So...now they are finally treating the pancreatic insufficiency as well as using supressive therapy on me (TOBI) 3 years ago, my PFT's started to drop, prior to that, they were decent, 80-90 I believe. Prior to being vented, I was below 20%, unfortunately I am not eligible for a lung transplant because of my neuro disease. My CF disease isn't really that bad, what really caused my pulmonary decline was the neuro disease, it literally caused my respiratory muscles to weaken to the point where I couldn't breathe on my own. Having the two together makes it like a double whammy. I have been in the hospital alot over the last 3 years, especially this year for IV's and such, the cepacia usually is the one that wreaks havok on me. But, I just hang in there...if it is a good day, then I take full advantage of it.
Hugs Jenn (Cepaciagal)
33 years old
