Mind: Officially Blown

Yesterday, my lung function was the highest I’ve seen since 2014!

I think I’m still processing that a bit.

PFT (3)

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.

Gratitude is the answer

There’s a little something I’ve been keeping pretty quiet, but today seems like an appropriate time to share it. ⁣

I started Trikafta, the newest drug to treat the underlying cause of cystic fibrosis, almost two weeks ago. The emotional roller coaster that ensued is unlike anything I ever imagined! From the moment I found out I’d be starting this drug, the tears have been frequent and plentiful.⁣⁣⁣⁣⁣⁣⁣⁣
In addition to the excitement, there’s something else I’ve been grappling with. ⁣⁣⁣⁣⁣⁣⁣⁣
Survivors guilt is something many in the CF community experience. The random and cruel nature of this disease means that someone can do everything exactly right and still become sicker. I’ve often wondered why I’ve done so well when I’ve watched my friends continue to decline.⁣⁣⁣⁣⁣⁣⁣⁣
I frequently think back to a hospital stay during which 4 of my friends with CF and I had a movie night together (spread far apart, wearing masks). We talked and laughed together for hours. It’s one of my all-time favorite memories! But, of the 5 of us there that night, I am the only one still alive.⁣⁣⁣⁣⁣⁣⁣⁣
I have no explanation for this. I don’t know why things happen the way they do. I don’t know why some of us have access to this drug so quickly, while others will have to fight long and hard for it. I don’t know why so many of my friends never got the chance to benefit from these drugs. I don’t know why this disease manifests itself so differently in each person, even those within the same family. ⁣⁣⁣⁣⁣⁣⁣⁣
And I don’t know why, amid all of this, I’ve been so fortunate. But I can tell you this: I do not take a single breath or moment for granted.⁣⁣⁣⁣⁣⁣⁣⁣
A friend of mine recently said to me, “gratitude is the answer to so many things,” and I’ve carried those words in my heart ever since.⁣⁣⁣
I’ll celebrate the lives of my friends with gratitude. I’ll laugh without coughing (something that hasn’t happened in years) with gratitude. I’ll live each and every day with a thankful heart. And when things seem too heavy or I start questioning the universe, I’ll remind myself…

“Gratitude is the answer.”