365 Trikafta

on Jan 31, 2021

Today is day 365 of Trikafta for me. (It also happens to be my beloved Ricky’s birthday. How lucky am I to celebrate two of the most important gifts of my life on one day?!) I don’t know if I have accurate words to describe what the experience of this first year of life with Trikafta has meant to me, has meant for me. My eyes are wet, a lump is building in my throat as I type. I am not coughing. I don’t have a memory of a time when there was a stretch of months where regular, full body coughing was not a part of my reality.  I am sure there was probably a time when I was little where the torment of CF was focused more in my belly than my lungs, but my memory does not stretch back far enough into that place to recall that experience. It’s amazing how much energy ongoing coughing actually takes. I’ve been able to keep some weight on.  I can’t help but...

Trikafta Eve (or so I thought)

on Feb 14, 2020

I’ve been looking back through my journal, deciding what I want to share and what I still want to hold close, still just for me right now. This entry is from the night before I thought I was starting Trikafta, Jan 28, 2020.  Turns out I didn’t start for two more days due to a body that wasn’t doing so great said planned morning. Alas, here’s the entry from what I thought at the time was my “Trikafta Eve”. Jan 28, 2020 I’m sitting here in my bedroom, looking at a box of Trikafta across from me on my night stand. It is my first box.  The co-pay is $0.  That is unreal to me.  I do not yet know if that will be my monthly co-pay this year or if that will change with the months and as I move in and out of different levels of coverage.  I was told by the pharmacist that the co-pay would be anywhere from $0-4,000.  The fact that it is currently is $0...

What’s been a happenin….

on Jan 27, 2020

Dear friends, Life has been full on as I’ve been navigating what I was hoping was the beginning of the end of MAC treatment.  So… I have been away from this blog. I was transitioned to a different medication for MAC, in preparation to get me to being able to simultaneously take (drum roll please…..) Trikafta (which I have Booster Jotted up to now be called Trikafta Power).  The trouble is, this new to me med, Clofaz (which I renamed Joy) kicked my butt in some unexpected ways.  One of which is how it has affected my eyes.  So typing or any prolonged time on the computer or phone has not been in my best interest.  It also has seemed to really give my blood sugars an extra roller coaster ride and has added a new level of shakiness in all it’s various forms into my life.  So… it has not been an easy transition. That said, Clofaz AND a very unexpected series...

MAC Month 8 (Sept 2019) update from KT

on Oct 27, 2019

Hi Guys! Here’s a belated update from month 8 MAC Attack. (As an aside, “attack” isn’t normally my language of preference, but it just rolls off the tongue so well, and well, I just couldn’t resist.  This said, let’s think like Pac Man styley with the little antibiotic pac man’s gobbling up the remnants of Mac germs and any little MAC ghosts that might be hanging out once they hit their power pellet status.  Yeah.  Ok.  That’s a fun image.  Let’s see that!) AND a special announcement that may start with chicken… and end with butt! For those wondering what the heck I’m talking about see this update to refresh ;). Music Credits: “Bottoms Up” by Trey Songz featuring Niki Minaj “Yesterdays” by Traxx...

MAC treatment round 3, visit 3 NJH

on May 22, 2019

Hey guys. Yesterday was visit 3 of this round of MAC treatment at NJH. It was a super long day, but we got some good news. Not quite the news we were most hoping for yet, but still good overall. Hoping for that Chicken Butt shirt really soon though! (if you’re wondering what the heck I’m talking about see https://www.youtube.com/watch?v=mlspc… ) Thanks for watching this little snapshot into this world! Music: Gabrielle Aplin’s HOME, cover by Jasmine Thompson and Forever by Till Death