Trikafta- Preparing for a life-changing​ drug!

Most of you have heard by now that Trikafta has gained FDA approval and will soon become avalible to CF paitents in the US.

It’s been a crazy few weeks, between an appearance on “The Today Show,” the announcemnt of FDA approval for Trikafta and the Wish for Wendy event. To say I’m emotionally and physically spent is an understatement. Yesterday, I was diagnosed with a hip flexor strain which is why it hurts to run and twist. I guess I’m getting old, but getting old is still something I’m pretty proud of — never thought I’d have “old” person problems!

Today was a long day, too. I spoke with Vertex (the company that makes the new breakthrough CF drug Trikafta). I worked on a lot of the paperwork and learned a lot more about the new drug. I decided to get my blood work done as that’s a perquisite for the doctor giving me the prescription as one of the bigger potential side effects is liver issues, so if my numbers are down, it would not be wise to start it.

Having blood work done is something that really affects my anxiety level because I have no control over the results. After fasting from 11p.m. 10:50 the next morning, I had 11 vials of my blood taken. The doctor did a glucose test, too, to see if I had CF-related diabetes as well, which required drinking a substance that tastes like a flat Sunkist. It’s horrible! If you have ever had a baby it is the same orange drink pregnant women complain about! Anyway, after that, I had to keep fasting another two hours before I had one more vial of blood taken to see how my body reacted. However, all the anxiety will be worth it when I can start taking Trikafta.

The great news is I got a text from my doctor saying all of my numbers looked good enough to start Trikafta. Another good thing, I don’t have CF-related diabetes either.

The drug Trikafta won’t be in my hands for several weeks, but I wanted you to know I’m doing everything in my power to prepare for this potential life-changing moment. Thanks, everyone for your continued support.

Live your dreams and love your life.

Andy

Incase you missed my segment on the 3rd Hour of Today, here it is!