Genetic screening is a wonderful thing, however, it wasn't even offered to myself and my ex when we were trying to conceive. Why? We were both young and healthy and there was no family history of CF at all. We were shocked when my dd was diagnosed at four months.
As to prognosis, there are MANY people with CF that have a wonderful prognosis because they have a mild mutation. The problem with now having over a 1,000 known mutations is that people are being diagnosed with the milder mutations as teenagers, and even well into adulthood. These are people that never would have been diagnosed twenty years ago, and are living normal life spans, for the most part. This has painted a rosy glow around life expectancy, when in fact, there are still way too many children and young adults with the "classic" presentation of CF dying much too early.
Fortunately, there is one drug approved, and one in the pipeline, designed for certain mutations, that are doing wonders by actually altering the way the salt-water transfers happen on a cellular level. My goal right now is to keep dd's lung function as high as possible, so when something promising comes around the bend, she can see real benefit from it. Otherwise, with her history, she will be lucky to make 30 without a transplant.
Something else to keep in mind when looking at transplant success, a person can be listed for a lung transplant more than once, and there have been many people who have received more than one.
