Luisa. You sound like a younger me because, if not for hemoptysis, I would hardly know I have cystic fibrosis. Do I have PTSD as a result of the many episode of hemoptysis I’ve experienced over the years? Probably, yes.
I do my best to prevent CF from dominating my world. It mostly hovers like a malevolent shadow, a lingering cloud in my sunny sky. Periodically, it steps out of obscurity and slaps me silly — reminding me that it could all change regardless of what I do to control the situation. As a matter of course, I work hard to ignore this steady drumming in my head. Sometimes, I even pretend it does not exist.
To illistrate, this happened 3 years ago.
A Sunday night outing. It was a slightly chilly Seattle evening. I went to the movies with my son Adrian. We saw Black Panther. Very enjoyable movie. Popcorn, soda, and junior mints — just ideal. It felt like everything in life was right. Just enjoying a carefree evening with my son. I felt good. No, I felt on top of the world!
We stepped out onto the sidewalk and into the bustling Seattle night. We walked about ½ block. I took a deep breath of crisp fall air. Immediately, my chest filled with blood. Trying not to vomit blood onto the sidewalk I stumbled to the car. I told my son to drive to the nearest emergency room. I’m bleeding all over the inside of the car. Stark raving terror. Will the bleeding stop this time?
My son, to his credit, does not freak out. He has spent the past 28 years watching me survive these episodes. He just drives to the emergency room and tells me to hold steady.
Maybe you know the rest. Community clinic emergency room – no one really knows how to deal with this. All the blood is unsettling… Feeling a little lightheaded due to the blood loss. Also, experiencing that familiar bizarre sense of euphoria that follows whenever I’ve lost a lot of blood quickly. Soon, the bleeding slows from a flood to a trickle. Just coughing up old blood, remaining as inert as possible, and hoping for stability. 6 hours later, I am transferred to the University of Washington Hospital emergency room. This is the hospital where my Cystic Fibrosis doctors hang out. It is the weekend, so I get the pulmonary physician on call. He knows my primary CF doctor. I tell him the story. I need oral anti-biotics now. I need a PICC line tomorrow. I need IV antibiotics stat! Chest x rays are going to reveal…you get the idea. To his credit, he listens, takes most of my advice, and orders it up.
1 week later, I am at home with a PICC line infusing 2 heavy duty antibiotics. 3 months later, I feel good again. I almost forget about that pesky humming in the background. Except we are now talking about lung transplant–again. The humming gets a little bit louder.
I did not know I had CF until age 34. I am now 66. For the past 30 years, I have charted my lung function to try to predict the future. It was looking grim until Kalydeco came along 14 months ago. My prognosis got a major reset. Now, I am working on a new timeline. Not sure how realistic this is. My wife observes that I could get hit by a Mack truck tomorrow and then this CF angst means nothing. Except, CF is the very real bird in my hand and the Mack truck is, well, a potentiality not a probability.
This is my experience with CF. Me and my shadow Mr. Hemoptysis. In between these moments of stark raving terror, I feel almost normal. Almost.