Hi Nikole. Wow, this thread is a bit charged! My story goes as follows. My daughter was not diagnosed until 3.5. She is now just over 5. She actually had zero symptoms before diagnosis. I had changed OB/GYNs and she had me tested for various stuff because she knew I was trying to have another baby. CF carrier status came back positive for both my husband and I and so had I my daughter sweat tested just to rule it out. Well, she came back borderline, so I had her tested for the genes and the rest is history. She is fully pancreatic sufficient and had 3 - 4 colds tops prior to diagnosis, all which resolved in a normal time period and none of which went to her lungs. She did, indeed, have runny noses, all without mucolytics. Her genes are df508 and a class V (3849+10kbc->t). I searched down every single 3849+10kbc->t adult I could find. In general, they had milder presentations, were diagnosed mostly as late teens or adults, but they were mostly pancreatic sufficient, and had some mild to major lung involvement prior to diagnosis.
Now I am sure this is going to get a hefty response, but I am curious what others think anyway. I sat in on a donor's dinner with some execs from the CFF and asked a pointed question...."How long do pancreatic sufficient patients live on average". The answer was 1-2 decades longer than those who are not pancreatic sufficient. In addition, although definitely not the rule, I believe that the sweat chloride results do somewhat predict outcome. Otherwise, why would pancreatic sufficiency generally show up under 70? In addition, why is it measured with the Vertex drugs?
Have you had all the usual tests done? I.E. lung xray, sweat test, vitamin levels, etc.? This whole "mild" mutation speak is definitely charged, but usually it does mean something....That said, we do treatments 2x/day, 4x if sick.