1 Month of Trikafta

It's kind of crazy that 4 weeks have flown by on Trikafta.  Tuesday was my 1 month follow up since starting.  As I mentioned before (here), my CF clinic is participating in a study to track my progress and do some extra testing while I'm starting the new meds.

For my visit, my mom tagged along so she could get some information (and be my photographer...lol).  It was a pretty simple visit.  I met with the nurse coordinator who took my vitals and discussed any side effect or complications.  Then we went for the sweat test and PFTs, followed by blood work and a quick chat with the doctor.  Overall it took about 3 hours.  Just in time for lunch!!

Side Effects I've encountered so far include:
1) Tiredness - that was early on when I first started

2) Headaches - they are still occurring and actually getting a bit stronger but still nothing that isn't manageable, I don't even take Tylenol with them.

3) Sleep disruption - thankfully the past few nights have been good and I'm getting some good sleep

4) Brittle finger nails - I've never had super strong finger nails, but they have been splitting and even peeling, which is odd.  This isn't something that my doctor has seen before as a side effect, but I can only assume it's connected at this point.

5) Orange tongue - yes, you read that correctly.  I don't know why but I noticed towards the end of last week that my tongue is orange.  It looks like I just ate some candy and colored it...but I didn't.  I wake up and it's orange.  Again, it's not something that they've heard of happening before, so I'm tracking it and making sure I'm brushing extra well.  I can't imagine that after 36 years of life that I've forgotten how to have good oral hygiene.

I'm fortunate to have a stomach of steel and haven't had any stomach issues.  Yay!  They other day I got a questionnaire to complete all related to bowel movements.  Thankfully, I can report that all is well.  Haven't had any troubles in that area.

I told them how I'm working out and all is going well.  I can take a deep breath that I realize wasn't as deep in the past.  They are going to monitor my muscle enzymes to make sure I'm doing OK.  They've had to tell a few patients to back off working out...eek, I hope I don't have to.  I'll go crazy!!

My weight was good.  Their scale says I've lost a pound, but my gym scale says I've gained 2 pounds.  So who really knows?!?

Sweat Test

Here's a video of me doing my PFTs.

So, you're probably wondering if I had any improvements.  And the answer is YES!!!!


So my FEV1 went up 10% from December, which is fantastic.  But I'm most impressed with the FEV25-75% (small airways)...it went from 59% to 83%.  Wow!! I went back through all my PFTs and the last time I was in the 80th percentile was in 2011.  Yes, I've had some high 70s, which I'll gladly take. But just that jump in 1 month is pretty remarkable.

I'll go back in March, which will also be my quarterly appointment.  That'll be a long day! I can't imagine that I can get any higher than where I am now, but we'll see!  Hopefully, I'll be maintaining from here on out.

Thanks for taking time to read.  I'm so very happy and fortunate to be able to have access to Trikafta. Let's hope insurance keeps on approving it for me!!


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