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  • Navigating a post-Trikafta world

    Posted by jenny-livingston on August 22, 2022 at 10:33 pm

    Post-Trikafta, my world looks so much different than it did before. Aside from the life-altering benefits I’ve experienced, I’m finding myself having questions and needing an adjustment in areas I didn’t immediately think about or associate with Trikafta. For instance, my nutritional needs have changed a bit as I’m absorbing vitamins and nutrients differently, and I’m beginning to think that my obsessive relationship with salt may be related to my new high blood pressure (perhaps my body doesn’t need salt quite as much as it used to). I’m also finding that my need/tolerance for other medications seems to be changing.

    Are you also finding changes that are perhaps less exciting than the major ones, but also require attention? While navigating a post-Trikafta world, what have you found to be surprising, challenging, or exciting?

    luisa-palazola replied 1 year, 7 months ago 2 Members · 2 Replies
  • 2 Replies
  • daryn-body

    August 23, 2022 at 3:45 pm

    Great topic Jenny! So true!
    It’s hard to know what to expect from my body in the Trikafta realm; greater stamina; increased workout tolerance; seeing faster results from workouts; harder to lose weight (putting weight on… what??), simpler therapy (even postponing/skipping sometimes [not recommended]); etc.

    Sometime ago I had set a 10 year (non-verbal) plan to get my affairs situated so that when CF finally did the final deed on me, my family would be situated to continue. Well, I’ve blown through some of those years without even noticing and the 10 year has become an unknown timeframe now. Having to plan for the future is so different from the expectation of yesteryear. I was even moved to start up the 401k again.

    I keep waiting for the crash and subsequent exacerbation resulting in hospitalization… and it hasn’t happened! Of course there are little dips; but I am able to recover with rest and increasing  therapy temporarily.
    I like it! It’s more fun living this way for sure!

  • luisa-palazola

    August 23, 2022 at 8:45 pm

    Ah great topic — I second Daryn, I do like it and it is more fun living in this post Trikafta world. But, golly — I think what the most challenging thing has been my relationship to my body. I’ve stepped back from a lot of my medications and lowered my treatments quite a bit, so it’s a bit disorienting. Pre Trikafta, taking care of my body was very centering and it helped me frame how to go about my life.

    It’s been three years since starting Trikafta and I still find it hard to navigate this empty space/time without having to be so vigilant!

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