Trikafta update

Today marks six months (180 days) on Trikafta for me! 🎉

Quick explanation for those unfamiliar with Trikafta: it’s the newest of four drugs called CFTR modulators. These medications are specific to cystic fibrosis and help correct the underlying defect in our cells rather than just treating symptoms.

I started Trikafta in November, near the end of a 2 week hospital stay. For some people, within hours of taking their first dose they noticed changes in their breathing or how their body was feeling.

I was NOT one of those people.

The changes I experienced were slower and more subtle. I began feeling like I was disappointing people when they’d ask how I was feeling because I didn’t have much to report.

My biggest “wow” moment happened when, after two months on T, I was sledding with my extended family and ran up a hill without thinking twice about it. I don’t run ever run, but especially not uphill! When I realized what I’d just done, I did it again and again.

Now, six months into this journey, I still can’t tell you when certain things happened since it’s been so gradual, but I can tell you that my body has indeed transformed.

For one, I don’t cough anymore. It’s the most bizarre thing! Something that has been so normal my entire life is now just gone!

I saw a roughly 8% increase in lung function, giving me my highest PFTs since 2014.

I rarely cough up any mucus. My treatment needs haven’t changed – I’m still doing just as many as I was previously, but I’m not getting a mouthful of mucus each time I cough. (CF is so glamorous, isn’t it?)

My digestion has changed significantly, and I’ve gone from needing to take 5 enzymes with meals to 2.

I’m not sure many people understand how painful CF can be on a daily basis. Lungs, joints, stomach, sinuses, overworked muscles — something is always hurting. But I now have more pain free days than I’ve had in years.

This isn’t even a complete list of the changes I’ve experienced, just the most significant ones. Most days, I still have a hard time wrapping my head around it all to be honest.

Every single day, I am amazed.
Every single day, I remain hopeful.
Every single day, I am grateful.

2 thoughts on “Trikafta update

  1. Irene Sims

    I so enjoy – and appreciate – reading your posts! So wonderful to hear that Trikafta is making a difference in your life. My beautiful daughter in law started Trikafta a little over 2 months ago – she experienced improvements quickly – and continues to feel SO much better. We are so thankful! Thank you again for sharing your experiences!

    Liked by 1 person

    1. Oh, Irene, thank you so much for this comment! I’m very happy for your daughter in law (and for all the people who love her). What a crazy and beautiful time to be alive! ❤️

      Like

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