While my latest clinic appointment was the best I’ve had in about a quarter of a century, my doctor had additional good news about a new study looking into a way to benefit those taking Trikafta.
First, here’s an update on my personal progress while taking Trikafta. I continue doing the things that have helped me get where I am today, like working out and running every day. But, my doctor made one change in my routine, saying I should be fine doing two therapies every day instead of three. I’m so glad to get that hour back in my day!
As far as enzymes go, he and my nutritionist recommended no change in taking them. They said my pancreas should not change much because of Trikafta and altering the dose further could be a little risky. I had already gone down from four capsules to three with meals and they were okay with me sticking with three, but not going down any further. I keep hearing of rumors about doctors telling patients to stop or reduce their meds and therapies significantly and I can’t see the benefit of that. It sounds pretty dangerous. Please don’t make a change like that without consulting your physician. Trikafta is not a cure.
In the study mentioned above, researchers are determining whether going off hypertonic saline and/or Pulmozyme would be beneficial to those on Trikafta but the results won’t be available for four to five years. Still, news about additional research benefitting CF Warriors is always exciting. Every point of progress helps!
I love hearing your Trikafta stories on our CF Warrior Facebook Group. Please keep them coming. I continue hoping we find drugs for 100% of the CF population including children under 12, transplant survivors, people in other countries, and those without the Delta F508 mutation.
Live your dreams and love your life.
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Andy