Disease progression. The worsening of a disease over time. A concept that is most often used for chronic and incurable diseases. Cystic Fibrosis. A chronic, incurable lung disease that causes thick, sticky mucus to build up in the lungs, digestive tract, and other areas of the body. It is one of the most common chronic lung diseases in children and young adults. It is a life-threatening disorder. I knew at a young age that it could get worse. I’d seen CF takes its toll on friends. I knew that I was in a way, a ticking time bomb. This is something you live with when you have a chronic, progressive disease. The thoughts, questions and uncertainty. Not sure if you are going to bounce back from the latest exacerbation. Not sure if this lung infection is going to leave a lasting mark; knock down your baseline. Not sure if this hospitalization will be the one when signs of progression, a declining lung function, start to show. The uncertainty that no matter how hard you work, how tough and determined you are, something can happen. That someday something is going to give. It’s just a matter of when.
Right now I don’t feel great. No real explanation as to why not. My life is in balance. I’m compliant with my treatments. I get lots of sleep. Exercise regularly. And in general make smart decisions. But regardless, I don’t feel great. So with that, I went to the doctor last week. Did a pulmonary function test and my numbers were consistent with where they’d been for the past year, down from my baseline. Now, keep in mind my baseline for the first 29 years of my life was excellent, but when you live with a disease that can progressively worsen you don’t want to see any kind of decline. For the past year to 15 months now there has been some decline. Healthy or sick, I haven’t been able to get back to my old baseline. Confusion, frustration, annoyance, and fear are a few of the emotions I’ve cycled through in the past couple days. Not knowing what’s going on or why things are happening creates a level of uncertainty that is not comfortable. It makes you feel like you’ve lost control. That no matter what you do, how hard you fight that it’s out of your hands. It’s not up to you anymore.
But at the end of the day it goes back to the question of how we respond to progress; how we respond to change. While most progress is accepted, this is one type of progression that I’m not willing to accept. These are my lungs. This is my life. Negative progression, decline and defeat. These are words and terms that one day I may have to deal with. I’ve accepted that. I’ve not accepted that day is today. There is still too much I want to do. Too much I want to see, explore and experience. And that’s why I will fight. That’s why we will figure out what’s going on; take the necessary steps to fix whatever is broken and get back on the right path. The path to a long, happy and healthy life.