So, last night before bed I headed upstairs for a shower and did not use my oxygen. I had little shortness of breath and recovered quite quickly. It was great. Is this monumental, no. I’ve had good days where I was able to climb one set of stairs pre-trikafta and be ok. It’s been a long time since I’ve had a good day like that so last night was a nice surprise.
Throughout the day yesterday I coughed up a lot of mucous and with each goober I spit out, my lungs relaxed just a tiny bit. They have been in vice grips for so long that I didn’t recognize the feeling of release until I too let myself out of my constant bodily prison. It was glorious.
As I laid my head down last night I just focused on taking these huge gulps of air, filling my lungs up as far as they would let me. It was the best feeling in the world. Without your breaths you die and I have been fighting for every one of them my whole life. Last night the universe just let me have those breaths for free. Easy, peaceful, calm breaths. Very few of you can even grasp what I mean but I assure you it’s a miracle.
This drug is really mind boggling. It changes the way the body transports water at the cellular level. Before the drug the cells were blocked, not able to flow properly from cell membrane to other cell membranes. Without that transport of water the cells just became clogged with the mucous, stuck in place, just continually clogging up the cell. Think of it like a dam finally opened to let the water flow as the body was meant to do. Now the chloride channels aka water transport system is back up and running at the cellular level. The researchers who figured this out truly deserve a Nobel prize. I cannot comprehend the mechanism that they developed to sit in a tablet that I swallow, to tell all my cells to open the dam. Throughout my entire body, changing me molecularly. It is truly incomprehensible to me.
When they started talking about the development of this type of drug years ago I was sure it was going to have to be something injected, radiated, or lasered into my body. I would have never thought they could develop this tiny little pill to upend every way that my body functions.
There are subtle things I am noticing, like the crackling I can hear in every breath from the mucous is gone or my sinuses feel like they’ve been given a colonic. I know there are many more to come. Maybe my hair will stop falling out, maybe my face will look less gaunt, maybe my big barrel chest will subside, maybe my hands will not instantly prune in the shower, maybe just maybe.
Today I am going to tackle some long ignored tasks like cleaning my garage. I feel like I’m going to take these ‘new’ lungs out for a test drive.
I can’t wait to be able to do what most of you consider mundane and annoying. I also will take on one of my tougher crossfit workouts and see where I stack up now. I hate working out because I have to and now I feel like I cant wait to want to. I dream to feel well for the first time in my life, even if my lungs are permanently damaged.