Trikafta has given me a second lease on life.
JANUARY 19, 2022
Lorna McEwan is a 61 year old Cystic Fibrosis Warrior and advocate who started on Trikafta in 2021. This is an account of her experience with the life-changing drug.
I started Trikafta on October 28th, 2021 and I cannot believe the new lease on life that I have had. It’s a game changer. As I told my brother, this is no multi vitamin.
I was in hospital for close to five weeks before I started Trikafta. I knew I had the right gene to be eligible for the drug, but we were waiting for a couple of tests.
When I found out I was approved I was pumped, and had a little bit of ugly tears. I was filled with a sense of anticipation and wonder, but also with suspense, because I didn’t know what the “purge” would consist of. When I finally got the box, I took a picture to mark the moment.
The journey since I started on Trikafta has been surreal. I’m loving it. I cannot believe the changes that have happened and how I feel. I can actually breathe without going into a major coughing fit. I can run and not go into a coughing fit.
I have more energy than I thought humanly possible, I didn’t realize how much energy I was using to get stuff done. I’m not focusing everything on breathing, which I didn’t realize I did. Breathing is so underrated. I had to give myself permission to breath normally and to take a deep breath and not be afraid of going into a coughing fit! It is huge.
I’m also sleeping better. I’m finally able to sleep an undisturbed sleep, and wake without feeling drained and exhausted in the morning. For the first few days I kept saying “Wow I actually feel awake and alive in the morning!”
My hands have also changed. The colour of the skin under the nails is pinker, as there’s more oxygen getting into it. The clubbing that had been happening seems to be reversing. I keep looking down at my hands and seeing the little changes and I think “that’s not normal, or maybe it is normal and I don’t know what normal is.”
My friends and family are noticing changes too. My husband said to me one day “your cough has changed”. Friends have said my voice has changed, it is not so hollow sounding, it is stronger, it’s clearer and just sounds better. I sound like I did 25 years ago. Another friend said my eyes look clearer and brighter. Just little things like that.
I have expelled a lot of mucus. But that is a good thing, as every time I do, I can breathe a little easier. I used to say a lot that “I wish the mucus would shut off, just to give me a break”. Well, I think the mucus switch has been dimmed greatly now.
At my one-month checkup I had a 17% improvement in FEV1 from the previous test! My salt chloride level also has come down to where I am borderline! After only 27 days! My next sweat test is in 6 months. I am anticipating my number will drop again and I’m hoping that I will register in the normal range.
My hope for the future would be to make living with CF better for future generations. I want to try and make a better way for them. The next advocacy push is to get the 6–11-year-olds covered. If we can get them on Trikafta and ensure full access for everybody, then it will help to make everyone else’s CF walk a whole lot better.
Trikafta has given me a second lease on life. I believe that everybody should be given this opportunity. We need to continue raising funds, so that other gene modifying drugs can be developed for those who don’t have access or can’t take this drug, so that no one is left behind.
It’s all happening in my lifetime, which I never thought would happen, but I’m enjoying this all coming together.
Lorna McEwan, CF Warrior
One day I will flunk my sweat test!
Cystic Fibrosis Canada continues to fight to ensure all Canadians have the opportunity to access life changing medicines, like Lorna.