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.
Now I have Happy Tears for you! I thoroughly enjoyed your post! Gives me hope for my 2 grandkids (5 year old twins fighting CF since birth)
They are too young for Trikafta (they are on Kaldyco) but once approved for younger kids, they will take it. May you life and health continue to improve 💜💜
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Barb, thank you so much! I’m so excited for the younger generation to start Trikafta! I’m glad they’re able to be on Kalydeco for now though. It’s such an exciting time for our community!
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Any updates, like more things you are able to do now? And have you been able to stop any of your treatments?
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Hi, Barb! I’m getting caught up here on my blog (I’ve posted a few things on Instagram but haven’t shared yet here). So keep an eye out for those posts! But I did have clinic yesterday and things are looking good for the most part! I won’t be cutting back on treatments anytime soon though.
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This is so beautiful Jenny! There is nothing better then tears of happiness.
💜 Traci
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It’s been surreal! Many happy tears are being shed around here!
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This is so beautiful Jenny. Nothing better then tears of happiness.
💜 Traci
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