Yesterday, my lung function was the highest I’ve seen since 2014!
I think I’m still processing that a bit.
I’ve gained 8 percentage points since starting Trikafta in November. Many others have seen improvement far beyond 8% but I’m not complaining! I went into this experience with cautious optimism and absolutely zero expectations. I told many people that if I could simply maintain my level of health and quality of life, I’d be happy. But to see these improvements is a little mind blowing!
I’m not one who generally puts too much stock in numbers. I’ve talked before about how CF is a total numbers game, and sometimes it’s detrimental to obsess over them. Numbers are a helpful tool to measure what’s happening in the body, but they aren’t the whole picture.
Yesterday my doctor reminded me that for those of us with structural lung disease and decades of damage to our bodies, there may never be those HUGE improvements in numbers (although, to me, 8% is still pretty huge). We will always have lung disease. That’s not something to get discouraged about. This drug is also working in other ways, as evidenced by my improved digestion and clearer sinuses.
When Randy first entered my CF world, he asked if lung function was kind of like a cell phone battery – the higher the numbers, the longer the battery life. I told him it’s far more nuanced than that, but for someone who was just learning about CF, that was a decent analogy.
My whole life, I’ve known that battery will drain out. I’ve seen that scenario play out over and over as I’ve watched friends battle and ultimately lose their lives to this disease. It was never a matter of it, but a matter of when my battery would burn out.
When I saw those numbers yesterday, even though I know they’re only one piece of this complex CF puzzle, I couldn’t help but visualize that battery getting a little charge.
And it truly feels like years are being added onto my life.