When I was young, having cystic fibrosis didn't really seem like a big deal to me. I had to take some pills when I ate to digest fat, and I went to the doctor more often than the other kids. I didn't know anything outside of my own experience. When I did a report on CF in elementary school, reading about it seemed entirely foreign. Sure, I had some of the symptoms they talked about, but I was living a normal life. I couldn't possibly have the typical version of this disease.
I must be the exception.
Fast forward to junior high. I picked up an unusual and nasty bacterial infection. It does damage. I'm at a cast party after running the spotlight at the high school musical and I cough. It feels different. I look at my hand and its dripping in bright red blood. Not good. In movies that's usually a pretty solid bet that you're about to die.
Maybe I'm not the exception?
Aggressive treatment. A year on three powerful antibiotics -- one, used to treat leprosy, has the side effect of making my skin tan. I'm my sickest, yet I look good. It's peculiar. I have a series of bronchial embolizations where they implant stainless steel coils in the damaged blood vessels in my lungs.
The internet is in its infancy, so I look up CF in books. I learn most men who have CF are sterile. I look up sterile, and I learn that I can't have kids.
Seems too far away to worry about, plus I'm the exception right?
I go to college (go Jumbos!). I make great friends. I learn to manage my health on my own. I'm not as good at it as when I had my parents supporting me, but at least there's beer. My ping pong game improves.
The internet is all grown up and full of information. I read about CF and I learn that new treatments are enabling men with CF to father children in some cases. Amazing. Still feels far away, I'm not even dating anyone. Also I'm immune to cholera. Neat.
I go to law school. Make more great friends. Move in with my brother. My foosball game improves. I pass the bar, get a job for the government, and move to New York City.
I don't really talk about CF with anyone. I've learned that the label scares people. Even with medical advancements, I'm still inching closer to those looming "life expectancy" numbers, and I don't want people's pity. Plus, why worry them? I'm a fully functioning adult. I can handle it. Nobody needs to know, right?
I meet Kathy. I fall in love. We get married. My ping pong and foosball games fall apart. I start participating in clinical drug trials. Mixed results. More bleeding, more embolizations. Yearly home intravenous antibiotics. But, science is starting to take bigger steps forward in treating the disease.
I start talking more openly about CF. It doesn't have the stigma I used to think it did. Kathy and I decide we want to have children. We know we need to do in-vitro fertilization since most men with CF produce sperm that can't get out. I have an unpleasant surgery and we hope for the best -- I don't want to be the exception. Success. Kathy has a whole series of unpleasant procedures, but they work. We have a beautiful, healthy baby boy named Max. He's a gift.
Recently, some promising clinical trial results were reported on, drugs for hard-to-treat heterozygotes like me. Participants saw about a 10 percent increase in lung function. Remarkable. I will enroll in a trial in early 2018. I hope when Max is old enough to look up CF, he reads about a disease that used to affect people. I hope the story is no longer one of people with CF fighting to breathe, but a success story of science and human perseverance.
Now that would be exceptional.