TRIKAFTA update & some exciting NEWS!!

Well, the hustle and bustle of the holidays are in full swing and I have been quite busy. Christmas shopping, basketball games, and Christmas programs galore! haha

I love this time of year though...Christmas shopping is one of my favorite things ever! I love picking out special gifts for people that I know they will love! Makes my heart happy and I'm about bursting at the seams waiting to see the looks on my nieces' and nephews' faces when they open their gifts!!

Okay, so on to the Trikafta update- Honestly, not a whole lot to report on that. A little discouraging because most of my other CF friends on it are RAVING about their results and I am a very impatient person! ha!  BUT, I will say, I have noticed that my stamina has improved- like I do not wear out or get tired as fast as I used to. I'm still coughing some though and I haven't really been gaining any weight or anything. I also don't have a clinic appointment until Jan. 14th, so we'll have to wait and see how and IF my PFTs have been affected at all. I will say, my hopes are not very high only because my dosage is SO low at this point because of some oral antibiotics I am on until March '20.

HOWEVER, on that note....so I have been throwing this idea around in my head for awhile and finally just decided to bite the bullet and just do it. I have been wanting to ask my infectious disease doctor (the one who put me on long term IVs and orals) if there was ANY chance at all of stopping the antibiotics sooner, rather than later and going to full dose Trikafta. Now, if you know me AT ALL, you know how much I HATE confrontation...I'm seriously the LEAST confrontational person EVER. haha But I finally put my big girl panties on and decided that it couldn't hurt to at least ASK my doctor about stopping early, right?! What if I didn't and just pushed through 'til March and then he actually says, well I would have been fine stopping early if you would have just SAID something. haha ahhhh!!

Ok, so I messaged him on my MyChart and I'm pretty sure I held my breath until I heard a reply. Which, thankfully, was less than 10 minutes, by the way! LOL Ok, so I open the message, fully bracing myself for a NO and.....
He started out saying that he would prefer me to finish out 24 months of the IV and oral antibiotics, BUT!!...but that being said, your last positive culture for the NTM was January 18, 2018 and he would be okay with me stopping NTM therapy on Jan. 23 2020....and going to full dose, especially since Trikafta is doing wonders for people. !!!!!!! WHAT !!!!!!! *Cue happy tears and screaming and all the emotions......

MERRY FREAKING CHRISTMAS TO ME!!!!! Only ONE more month of these FOUR times a day IV antibiotics and 2 orals, twice a day!! Y'all, I won't even know what to do with all my 'free time'. haha But for real! I am STILL in shock and so freaking excited!

With all that being said, I KNOW Trikafta is NOT a cure and will work differently for everyone...but guys, my friends are gaining weight on this drug, NOT coughing anymore, and saying that they don't even feel like they have CF!!! What in the what?! I don't even know what that would feel like!! My other friend just did PFTs for the first time since starting Trikafta and they have improved by 34% in less than months on it!!!!!! This is LIFE CHANGING!!

Anyways....my Christmas just got SO much better, I wanted to share with you all! I hope everyone has a magical and wonderful Christmas and New Years...now I need to get off of here and do some cleaning for my out of town guests next week!

MERRY CHRISTMAS TO ALL AND TO ALL A GREAT WEEK ;)

Keep On, Keeping On...