Today is day 365 of Trikafta for me.
(It also happens to be my beloved Ricky’s birthday.
How lucky am I to celebrate two of the most important gifts of my life on one day?!)
I don’t know if I have accurate words to describe what the experience of this first year of life with Trikafta has meant to me, has meant for me.
My eyes are wet, a lump is building in my throat as I type.
I am not coughing.
I don’t have a memory of a time when there was a stretch of months where regular, full body coughing was not a part of my reality. I am sure there was probably a time when I was little where the torment of CF was focused more in my belly than my lungs, but my memory does not stretch back far enough into that place to recall that experience.
It’s amazing how much energy ongoing coughing actually takes.
I’ve been able to keep some weight on. I can’t help but think that an end to my daily, and for some stretches nightly, coughing workouts has something to do with that. (Did I just say end?)
My lung function has stayed at a healthy for me baseline since August, which is the last time I took an oral antibiotic (I do one inhaled every other month).
That’s five months. Five months with no extra antibiotic and where I’ve been able to maintain without any lung exacerbation. Five months!
This, coming from someone who would start to have a cough and chest heaviness and slow spiral into the next treatment course usually beginning within the first week or two of stopping an oral or IV antibiotic.
Days are still full of care to keep on track. I’m still managing manic blood sugars, belly navigation, meds, supplements, and breathing treatments, but my life lived day to day is such a different experience than before Trikafta.
I wake up in the morning, still have to spend a few hours getting meds and things ready for the day, but I’m not in pain trying to breathe or coughing through it until I can get that first neb in.
I have to occasionally pinch myself to make sure I’m not dreaming that three little pills a day could make such a huge difference, a difference that I’ve been reaching my whole life for.
It’s nuts. Totally awesome nuts!
Rick and I are daring to dream of a longer life together and a future that might look different than what we have known and experienced so far.
A month or so ago I actually dared to whisper, “What if I don’t ever have to go into the hospital again?!” I do not know if I can accurately convey to you the magnitude of that thought. It might be a stretch, but it’s there.
To put this in perspective I will share something else. I have a very clear memory. I was maybe 11? I was sitting with two of my friends who had CF in the hospital lounge area (before infection control). What we were talking about was that with any luck we would get hit by a bus and go quickly and that would be a win because CF would not take us. Not needing to go back into the hospital again was not even a glimmer of a possibility for any of us.
We were joking and being kids, but not. Both of those friends would pass within 2 short years of that conversation from Cystic Fibrosis.
And now, I am not only still here, with my own lungs, a privilege that I do not take for granted, and daring to utter the (potentially obtainable) dream of not spending another two weeks in a hospital on IV antibiotics, or worse… pretty f’ing remarkable.
I can honestly say that the trajectory of my life feels like it has changed.
The thing is, none of us know what’s in store for the future or what turn our lives will take, but today, on day 365 with Trikafta, I am daring to hope, to stretch into what this new drug might help me live into.
In awe, wonder, and gratitude.
*Here’s a link to a Youtube video from the start of it all, this beauty-full Trikafta dance.