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...