AffloVest & Trikafta Updates

I'm currently sitting at my desk typing this blog as I'm using my brand new AffloVest!!  How's that for an update?  It's all mine, they can't take it back, forever and ever! Woohoo!!

I'll spare you all the details of the back and forth with insurance, the sales rep and even AffloVest, but it all worked out and I got my new vest yesterday!  This girl couldn't be happier to have it!!  I can't wait for my first trip with the AffloVest...where shall I go?

As for Trikafta, I'm on day 51 today.  I'm still feeling great, full of energy, and the headaches have pretty much gone away.  The one BIG thing I forgot to mention in my last update (here) was that my appetite is insane.  It's mostly at night after my evening dose that the munchies kick in.  And I have ZERO self control.  I try to fight it by drinking some hot tea, chugging a bottle of water, or start with a "healthier" or protein full snack.  But it usually doesn't take the edge off.  I mean, I ate an entire bag of goldfish the other night.  Oh my!

I've always been a snacker in the evenings when I'm watching my shows, but this is a whole new level.  I actually feel hungry.  It's worse than when I was on Prednisone.  It isn't every night, but it is most nights.  And of course if I can distract myself by doing something, I won't notice as much.  But let's be honest...most nights I'm home and in my pjs watching tv.

I have gained 4-5 pounds now.  uhhh..  I've noticed my clothes aren't fitting the same and it's making me mad.  Then I think, well I did eat the entire bag of goldfish. So, I've got to work on controlling my munching because I don't want to gain any more weight (unless its muscle).  Based on my weight today, BMI standards says I'm 'overweight'.  But in the grand scheme of life, I rather be a few pounds heavier than I want to be and live a long, healthy life.

I'm proud to say, I haven't missed a dose of Trikafta.  I did take a dose a little later than my scheduled time, but I still got it in.  This past weekend, we went to Atlanta for the Bully Ball.  It's my favorite fundraiser of all time - it supports the Georgia English Bulldog Rescue.  And even amongst all the fun, CF never stops.  Right there in the middle of the event, I took my Trikafta!

Trikafta at the Bully Ball


Popular Posts