Trikafta Update

Happy New Year friends and family!  I hope everyone enjoyed the holidays.  I sure did!  The best thing was getting to see my niece and nephews.  Nothing can top them.  But a close second, was getting to start Trikafta!

I started with Trikafta on Monday, December 30th.  I waited until after Christmas, as we were traveling and I didn't want to have any funny side effects away from home...overly cautious, I know.  So, I happily popped my first dose Monday morning.  I had planned not to go to the gym on the day I started, again overly cautious.  I just didn't want to overdo anything with the new meds and make my body go nuts.

I was advised not to drive for the first week while I made sure I didn't have any side effects.  That is one thing I didn't follow, but all was OK.  I had to get to my mom's to see the niece and nephew!! **I do not advise disobeying doctor's orders!!**

Within 2 hours or so of my first dose, I started to have a slight headache.  Not bad, but being that I'm not a headache-getting person, I noticed it.  It was on and off most of the day.  Once I got to my mom's (about an hour away), I was feeling rather tired.  So I curled up on the couch and just relaxed for a bit.  Nothing hurt nor did I feel "sick", I was just kind of blah with little energy.  I slept great that night - didn't notice waking up to any coughing (nor was I told I coughed).

The next few days were much of the same - dull headaches on and off, plus feeling tired.  I wasn't super hungry - which is a sign I'm dying!  Joking, but it did kind of make me nervous when I just munched all day and then ate a good dinner.  I decided to ring in 2020 by having a lazy day to let my body refresh.  I didn't even get dressed - pjs all day!  I loved it.  Got to finish bingeing Gilmore Girls!  Side note - I never watched that show when it was out, and I've been bingeing since November.  Kind of sad that it's over. 😢

On Thursday, January 2 (day 4), I decided to give it a go back at the gym.  I did my Afterburn class, which combines strength training and cardio, and felt fantastic.  I didn't work too hard and was a bit reserved since it was my first workout on Trikafta.  Friday, I went to spin class and felt like I didn't get as winded as I have in the past.  Saturday was Afterburn again.

I did skip my vest a few days when I started...just did not feel like it.  I know that's bad, but I made that decision anyway.  I just did not feel like sitting in my office chair for 30 minutes when I wanted to be snuggled up on the couch.  And I certainly didn't feel like moving all the crap to the living room.  Bah humbug!  I need an AffloVest!!!  I'm back on routine now :)

I've always thought I could breathe just fine (for the most part).  Yeah, I cough sometimes, but never really one that gets out of breath easily.  During workouts, I definitely push myself as far as I can, and am right there with all the 'normal' people huffing and puffing from a good workout.  But now, I find myself really not as breathless as I would be before.  I can take a nice BIG DEEP breath in to help slow my heart rate down and recuperate.  I don't think I could do that as well before.

I've worked out every day this week and continue to feel great.  I feel like I'm working harder than before but not breathing as heavy.  I meant to ask my trainer if she noticed any differences...I'll do that next week.

As for side effects.  The headaches aren't every day anymore and the tiredness is subsiding.  I'm drinking some extra caffeine in the afternoon because I HATE to feel tired and lazy.  I coughed up a little bit of stuff day 2, but it was super thin and not a lot.  Every once in a while I feel like I have some movement in my sinuses.   And my appetite is back to normal!

To add to all this, my Cayston cycle started on Sunday (Day 7 of Trikafta).  Haven't had any increase in cough or sputum with that addition.  Yay!

I'm happy to report that I haven't had any scary side effects and feel fantastic.  I'm still sitting back and questioning every little thing my body does or doesn't do.

- Is that a headache coming on?
- Does my poop always look like that?
- Did I always breathe this deep?
- Am I sweating as much as I used to?

I've kept a daily journal of times of medications and any little thing I notice.  I have no idea if it is related or not, but I have had some cRaZy dreams since I started and haven't slept as well this week.  I'm waking up around 3-4am and have a hard time getting back to sleep.  Then, once I'm good and asleep, I swear the damn alarm goes off.  So, I'm snoozing a lot.  But I make myself get up and head to the gym, even when I really want to roll back over and sleep.

All good things happening over here! Thank Heavens!!

Me and Keaton

Adam, Allie, me and Zeke (mom's dog)

These 3 are going to get to have their Digga/Aunt D for a very long time - and nothing could make me happier.  So thankful for Trikafta!!!💜


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