Another One Bites the Dust

Another hospitalization down! I came into the hospital and was able to make a decent recovery in about 10 days. My PFTs were hovering in the low 30s and high 20s, and that can be dangerous. But I’m hopeful to get back to a good baseline and carry on.

It’s strange how it feels now, as opposed to then. My hospitalizations are more frequent and in turn seem more mundane and not as serious in nature. However, I know that’s not the case. As I progress and my lung function continues to go down, the days are more difficult and the recovery is slower. My exercise tolerance is lower, and the rebound of function is less.

As all this information comes in, I try to come to terms. It’s easy to deny it is happening and just push on and through, but I can’t do that anymore. It’s not just about me. I need to be strong for my wife, son, and all of my family. So I need to be more responsible and thoughtful with my decision and my actions. I need to exercise even though I feel like shit and even walking make my lungs and chest feel like they are on fire. I need to do my treatments even though I’m tired and want a break from it all. I need…… to just keep going. To fight.

The hope is that once I get through this period of time, I will be on a new experimental drug. I am in the phase 3 trials, and although it is double blind it is pretty fucking clear I am not on the actual drug. That felt like a punch to the groin, and it’s easy to want to give up. But we know that after this 6 month period I will be on open label. We know how this worked for me before. There was a tiny glimpse of this last year, albeit for one month. I bounced up almost 20% and felt remarkably better, different, like I could breathe and function without impediment. It. Was. Awesome. And so I wait through this placebo trial to get the real drug. To feel the difference. To be able to shoot hoops with my son or take a nice hike without slowing everyone down or just having to bow out.

Anyway, as I said another one bites the dust. Just keep going, keep fighting.

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