So here we are on the verge of a potential cure for CF. Its the thing that I've been hearing is 10 years away for my entire life. And I don't know how to feel about it. Assuming this works would I want it? Now, before half of you out there in blogger land read that and flip out let me explain.
I can't seem to decide how I feel about remaining exactly where I am for the rest of my life. If this works I'm looking at potentially 50 years of THIS. By this I mean mid-50s lung function. Sure I could regain some function back without having mucus plugging up my airways but the damage that has been done isn't going anywhere. Do I want another 50 years of struggling up a flight of stairs, panting while doing laundry, and walking a step behind everyone because I just can't keep up. I might complain about my health but I've never been angry about it because there was always the option of a transplant somewhere on my horizon. I would think "I might feel like crap now, but someday I'll have new lungs and it will be worth it." Would I like to live another 50 or so years? Sure. But do I want to live another 50 years feeling like crap? I'm not so sure that I do.
I'm doing this study for all the CF kids who might benefit from it. For the ones that haven't been born yet. This drug might not do a thing, but if it does work there are some kids somewhere down the line that will never have to ask themselves if they want to live the rest of their lives with half their lung function. They'll just live, and CF won't take away their dreams, or their lives.