It'S HERE! It's finally here! I have waited SO long for this….when it was finally in my hands, I had tears y'all. LEGIT tears….I felt so hopeful and humbled and just so excited.
Now I know I haven't given an update yet and I promise you, I have a real reason. Y'all remember those long-term IVs/antibiotics I mentioned in my previous post? Well, one of them can interact with Trikafta...SO ...I have to take a totally different, SMALL dose until I am completely off these antibiotics...in MARCH 2020. While that’s kind of a bummer, I can already see/feel some small changes! A normal dose of Trikafta is 2 pills in the morning and 1 in the evening...MY dose is ONLY the 2 morning pills TWICE a week, taken 3-4 days apart. Already, a few hours into the first day (last week), I started coughing more and bringing up mucus. Now, I have to mention this- I almost NEVER bring stuff when I cough. My Doctor and CF nurses get exasperated with me because I can never give them sputum samples and they always do throat cultures instead, which aggravates my infectious disease doctor haha. So thats huge in itself already! I also experienced so chest tightness and my chest feeling like, wet and heavy. Eww. haha All of that lasted for like 2 whole days after the first dose but by the 2nd dose, 3 days later, I only had an increased cough and still coughing up junk.
So not a TON of anything yet because my dose is so small, but still! Guys! I can’t even believe I am experiencing this much! I cannot freaking wait til March and I can be on a full dose!! I don’t have a doctors appointment until January 14th and I’m so anxious to see if my pfts have moved at all. They were 50% last time and that was good(ish) for me, lately! AHHH!
Keep on keeping on...
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