Trikafta is coming

It’s happening!!  I’m super excited and nervous all at the same time about starting Trikafta.  Now that it’s been approved, I wanted to share a bit more about my thought process and some extra “stuff” that I get to be a part of with Trikafta.

As I mentioned before, I had some hesitation about starting the new medicine when I feel good now.  I’m fortunate to have fairly normal lung functions, so I didn’t want to risk something making me worse.  A large part of my decision to take Trikafta is that I’ll be a part of a study being done at my CF Center.  

Prior to starting the study, I needed to have some tests done to get a baseline before starting Trikafta.  I did some of the tests at my last CF appointment and also did some last week.  They include blood work, urine sample, PFTs, sweat chloride test, and liver scan.  Plus I had to take a pregnancy test to make sure there wasn’t a surprise – lol.  I passed!! Pregnant and breastfeeding women should not use the medication, so I appreciated the extra test.  

The blood work was simple enough, they are looking at various things such as complete blood count, HbA1c, markers of liver function, and markers of inflammation.  The PFTs were the same as my normal clinic visits, so no extra tests.

Trikafta study groups show that there is a decrease in sweat chloride levels…so we got my baseline.  The last time I had this test done was when they diagnosed me, at a year old.  It was beyond an easy test.  They strap some probs to your arms to make you sweat in that spot, then put on a collection disc to capture the sweat – that part takes 30 minutes.  

Sweat collector

The liver scan was really easy too.  Its technical name is Transient Elastography Scan.  It was like getting an ultrasound, with the exception of feeling a gentle thump as it sent a soundwave.  Supposedly this will show the size, shape and consistency of my liver.  

The study will last 2 years!  Not all the tests will be at each follow up visit, but blood, urine & PFTs will be.  So, once I start taking Trikafta, I will go back at the 1 month, 3 month, 6 month, 1 year and 2 year marks.

It definitely gives me peace of mind knowing that I’ll be watched closely and not just have to pay attention to the side effects that I can see/feel.  There is also an app that I’ll use to complete questionnaires from time to time so I can share about side effects, changes, etc.

As it stands, I'll continue with all the other things that I'm currently doing - enzymes, vitamins, hypertonic saline, Cayston, vest, etc.  So, I'll be adding these 3 extra pills to my daily routine - piece of cake.  

I can't wait to get started and share my journey!!


Popular Posts