Tagged: CF treatments, living with cf, trikafta
- This topic has 1 reply, 1 voice, and was last updated 8 months ago by Jenny Livingston.
July 15, 2022 at 1:21 pm #18562
I recently got sick and had a bit of a change in mucus production. Because I am on Trikafta, I don’t feel congested often – so feeling congested felt a bit disorienting.
I hooked myself up to the Vest, which gave me a bit of pause to reflect on then and now.
Then: I started Trikafta during the trials in 2018. At the time, I couldn’t afford much flexibility in my treatment routine. I was doing the Vest 2-3 times a day, 2 vials of Hypersa 2-3 times a day, and an inhaled antibiotic. And, an admission twice a year.
Now: Most days my treatment routine feels unnecessary unless I am sick. I take my daily and nightly pills and that’s it. I do get days where I have more mucus production, but for the first time ever, I struggle to make myself do treatments.
It’s still a bit wild that my body has changed so much!
What’s been your experience if you’re on Trikafta?
July 18, 2022 at 10:05 am #18565Jenny LivingstonParticipant
Isn’t it wild how different things are? I think it’s awesome that you’ve been able to reduce treatments so much. My treatment routine really hasn’t changed to be honest. I still do 2 treatments a day and increase to 3+ when I am sick or congested. I find that I still REALLY need my nebulized albuterol treatments each day. Along with those, I do other pretty standard meds (Pulmozyme, steroid inhalers, etc). Since I am sitting there anyway, I still strap in and do a full Vest treatment. It has been a built-in part of my day for so long; I have found it incredibly helpful to maintain the routine. I’ve dealt with a handful of viruses in the past couple years which never fail to make me congested and full of mucus for weeks following the initial viral symptoms. In these instances, it’s been really easy for me to stick to regular treatments to aid in my recovery since I am doing them all the time anyway. 🙂
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