My First Week on Trikafta

I started Trikafta on November, 26th 2019: the week of Thanksgiving. I kept a detailed log of how I felt each day for my first week so that I could see the changes and track the progress of my new medication. I initially intended to only keep this for my own reference but seeing other success stories and experiences made me want to share my own.

I’ll admit, it’s a little rough around the edges because it is, after all, my diary of events. Reading it now, I can’t help but notice how the energy and cheer grows with each day. So, here is my captain's log of my first week after starting Trikafta.

Starting Trikafta

Day 1

Today’s weight: 108lbs. There aren’t many changes so far. Slight headache - similar to what I experienced during the early days of taking Orkambi. Normal productive cough during my first breathing treatment & vomited twice this morning after (which is pretty much my baseline).

This evening I can breathe out of my nose, but I’m getting over a cold, so maybe it’s due to that. When I lay down, I can take deep breaths without sounds of crackling or wheezing.

Day 2

Morning therapy was normal. Lots of productive coughing. I’m really tired but was able to get to my massage appointment. I coughed through the whole thing, and vomited after, but it was worth going.

I went to ZooLights with Brandon and Lively. I didn’t cough or think about my breathing once the whole time. I had to run to the car to grab something and didn’t cough or need to catch my breath. I didn’t notice this until Brandon said something about it. This makes me so excited!

Experiencing discomfort

Day 3

I had a horrible headache at 4:30 A.M. that woke me up from my sleep. After I finally fell back asleep, I woke up with overall body pain. My neck felt stiff and hurt to move. My muscles feel week and I needed help going downstairs at Thanksgiving dinner. It’s hard to make a fist, and I’m getting a sore throat that I think is a side effect from Trikafta. Although it’s hard to tell because it could be a virus.

Had a really good appetite. Had two servings of everything at Thanksgiving dinner. Less productive cough all day, but I’m short of breath this evening. My evening treatment didn’t help the shortness of breath.

Day 4

Coughed through the night last night: Not too bad, but really annoying, but I slept well anyway. I woke up with a tight chest and needed albuterol first thing. I felt better immediately after. My throat still hurts. My cough isn’t very productive but sounds pretty junky (congested/productive). I’m wondering if I’m subconsciously suppressing my cough because my throat hurts.

Feeling better!

Day 5

Didn’t cough at all last night. My lungs feel clear! Little to no sinus congestion today. Still have a sore throat, but I didn’t need to take anything for pain relief for it.

Accidently missed my morning therapy because we’re driving home today and I ran out of clean nebulizer cups, but the upside is that I didn’t feel like my body was demanding it like it used to. I waited until the afternoon to do my morning treatment and I felt totally fine!

Day 6

My throat is still sore, but it’s distinct from a typical sore thought that I get with a virus. It’s very mild. My breathing is easy and I’m producing hardly anything from my cough. In the evening I get a sort of tingling cough, but I’ll take it over my normal CF cough any day. I wonder why it’s only at night. I have so much more energy today!

Day 7

It’s hard to say if I’m just used to the sore throat now, or if it’s actually gone! Either way, I’m not noticing it. I’m not coughing at all during the day except for when I do my breathing treatments, and even with that, I wonder if I really need to cough, of if it’s just a force of habit. My appetite has been good for a few days. I checked my weight and I’m up 4lbs! Yay! I think it will just get better and better!

Reflecting on starting Trikafta

My first week on Trikafta is one that I’ll never forget. I’m so glad that I thought to document my experience and share the hope that this new treatment has given me and my family.

There will be more updates in the future, all of which I hope just as positive as this one!