Cystic Fibrosis is a rather complicated disease, but if you could put numbers to it, those numbers would be in the form of the FEV1. The FEV1 is the number the doctors pay most attention to off of the routine breathing tests, because it is the best indicator of how a patient is doing lung-wise. It best shows how the lungs are functioning, how open the airways are, how much air is available when the breather most needs it. (The FEV1 measures how much air you can force out in one second after taking a deep breath. This diminishes as the lungs become inflamed, scarred, or fill with mucus).
I am a person who is very motivated by good marks. I think I did so well in school not because I loved learning so much, but because I was motivated by grades. I always wanted to get As. I still really, REALLY want to get an “A” when I go in for my breathing tests, but they aren’t forthcoming anymore. That pesky little FEV1 score can make or break my day. It’s scary to see it moving down. If it pops up, it’s like Christmas has come early!
Really, the FEV1 is only part of the story. What is more important, what that paper tells me or how I am feeling and what I am able to do each day? I talk to my mom about this all the time. She reassures me. She tells me I am living fully and doing well. I know she is right but I sometimes feel like a slave to that FEV1 number.
I think this is a multilayer issue for me. For so many years I prided myself on being “normal” in spite of my CF diagnosis. No one could ever tell I had a disease and that made me feel good; it made me feel safe. I knew first hand what CF could be like because I watched my sister Sheri struggle. I knew the good (yes there is good! More on that later…), I knew the bad, I knew the ugly. I knew I was fortunate. I didn’t want to lose my foothold. But a progressive lung disease is just that – progressive. And I slipped. I know there are a few people out there with CF that will enjoy the health I had until my mid twenties all through life, but barring a miracle or a medical breakthrough (which I hope and pray for), that is no longer my path.
Are you wondering what my FEV1 is? I’m planning to share it with you. But it’s hard for me. It’s not something I’ve ever publicized. I think sharing it is a good step in helping me to not be bound by it. It’s not an “A.” It’s not a “B” either. But it’s where I’m at. I thought about waiting until my next appointment to see if it had risen at all because I’d rather share a better number……
At my last appointment it was 47%. That means 47% of predicted. I should be able to get out roughly 3 Liters of air in that first second but I can only get out about 1.5. Yeah, my cystic fibrosis is not mild anymore. But God gives me strength for today and BRIGHT HOPE for tomorrow!