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.

We’re in this together

“How long have we been on Trikafta?”

Morgan asked this the other night and I’m still smiling about it.

Fighting CF is not something I do alone. I know this. I have friends, family, and care providers who are deeply invested in this battle. But I’m never more cognizant of how CF affects my loved ones than I am in moments like this.

“How long have we been on Trikafta?”

That one word was a reminder that my health affects her every bit as much as it affects me. She doesn’t feel the physical symptoms of this disease, but it has shaped her life in more ways than I probably even realize.

My fight is her fight. She shares in the celebration of my triumphs and the heartache of my challenges. My future and hers are intricately entwined.

She’s right – this isn’t just about me. It’s about us. We’re in this together.

We’ve started this thing where, when we notice the subtle (or sometimes not-so-subtle) ways that my body and health are changing – like when I run up a dang hill or swim the entire length of a pool — we look at each other and simultaneously whisper, “Trikafta!”

I feel so fortunate that I’m able to take this drug. It’s not just changing my life, it’s changing hers as well. I still really struggle with the idea that so many don’t have access or won’t benefit from it. But I’m overwhelmed with gratitude every time I see this little girl’s face light up because she knows her mama is feeling good.

Mom and Morgan

We’ve officially been on Trikafta for 72 days.

And we’ve expressed our gratitude out loud each and every one of those days.

Originally posted January 27, 2020

No longer confined to the sidelines

I’ve been on Trikafta for just over two months now, and I feel like it’s been a bit of a disappointment when I’ve said that my day-to-day life hasn’t changed that much. This drug is supposed to be “life changing” after all.

Well, yesterday we went sledding and at one point, my nephew was waiting for me at the top of the hill so we could sled down together. So I ran up the hill to meet him.

Did you catch that? I ran up a hill!

If you know me, you know that I don’t like to climb hills, even when I’m “hiking.” And I don’t run. Ever. For any reason. It’s just too painful.

But yesterday, I ran up that dang hill more times than I can count. I didn’t collapse or nearly vomit from coughing, and my lungs didn’t hurt or feel like they were seizing up. I felt fine!

Although at one point, I did sit down at the top of the hill and cry because I was hit with a startling realization. I wasn’t watching from the sidelines as I so often do. I was able to run and play with my kid for the first time that I can remember. Do you know how crazy that is?!

Last night as I was putting Morgan to bed, I felt tears on her cheek as I kissed her goodnight.

“Oh, no, honey. Why are you crying?” I asked.

“Because you ran up a hill,” she sobbed. Then she assured me, “they’re happy tears.”

This. Is. Life. Changing.

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.”