1 Trip around the Sun

365 days = 1 trip around the Sun.
We can officially say that Maddox has been on Trikafta for 1 lap around the sun.

What is Trikafta?

TRIKAFTA is a prescription medicine used for the treatment of cystic fibrosis (CF) in patients aged 6 years and older who have at least one copy of the F508del mutation in the cystic fibrosis transmembrane conductance regulator (CFTR) gene or another mutation that is responsive to treatment with TRIKAFTA.

Maddox takes two pills in the morning and one pill at night. This medication needs to be taken with fatty foods in order for his body to properly absorb it.

For the past year, Maddox was having quarterly blood draws to ensure that his body was able to safely take the medications without having any negative side effects to other parts of his body (kidneys, liver, eyes, just to name a few). Maddox’s last quarterly check up with Dr Pete was all good signs that we are not dealing with anything from that side.

Other CF’ers on Trikafta have been seeing amazing results of weight gain – to the point that they were able to back off enzymes and start a different diet. As you read in previous posts, we are still struggling on the weight gain.

Others have been able to see an increase in their lung function. Fortunate for Maddox at this point, he has had really good lung function so our goal with Trikafta is to keep it that way.

Looking at the picture below of Maddox, do you think he’s just another year older or do you think this medication has been able to help him. I live with him everyday so the changes from my perspective are hard to see. Let me know your thoughts!

Left side; 1 year on Trikafta – Right Side; the day it arrived

I am very appreciative for this medication and that Maddox has been able to take this medication and that it hasn’t presented any new challenges. We are still doing our vest treatments twice a day with his neb treatments at night. We are waiting for more research on this medication for long term effects (good and bad) to see if we can start backing off on these treatments. Based on his weight, my assumption is that we will still have the enzymes unless there is something new that comes out specific just for him as we haven’t had the weight gain we were all hoping for.

For all the CF’ers that aren’t on Trikafta yet, we are still thinking of you!

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