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Life Changing Modulators- Jackie’s Story

We share some stories from WA members on the life-changing effects of the new modulator treatments.

Jackie shared her story with us in early 2020 at the height of the COVID-19 lockdown, not long after she started Trikafta®. She has since had a successful double lung transplant which was able to be delayed for 12 months due to Trikafta®.

Seven weeks ago, I started Trikafta®, the newest of the CF modulator drugs. After six months of pushing, pleading and patiently waiting, we finally got it.

Slowly and steadily, Trikafta® is working at a cellular level, giving us our life back one day at a time. Albeit a marathon rather than a sprint. I’ve had so many improvements in my day-to-day life, it’s been nice to have some normalcy back.

Before Trikafta® I was in a pretty bad place. I was struggling to leave the house, barely managing 2,000 steps a day. Walking to the kitchen was a chore and making food was so difficult, I’d often skip meals. I couldn’t stand up in the shower, I had to sit on the floor, hardly even washing myself. Night-time showers were almost impossible. The exhaustion would send me on a downward spiral, ending in tears and tantrums, hating my life.

Now, I’m doing over 6,000 steps a day and running around the house to reach my daily goal. I’m standing in the shower again, washing my hair isn’t a chore and I can sing and dance like I could before. I haven’t danced in so long and it feels SO good to just blast my favourite songs and whirl to the music. I laugh without coughing. I can play with my god daughter, walk my dog and cook my husband dinner. All these little things that people take for granted every single day. They’re the things I missed the most. I feel like me again. I’ve got my sparkle back and I’m so grateful.

I didn’t get this far, fight this hard, delay a double lung transplant for twelve months, just for a random virus to kill me. So please, right now, in the midst of all this craziness, think of the four percenters like me that don’t have a reserve of health. Practice social distancing. The next two weeks are absolutely dire in stopping further transmission of this virus. Create an isolation cell and isolate. Isolate yourself for two weeks; after that you can socialise with friends who have isolated because by then we will know they aren’t carrying the virus. Then you can add more isolated friends into your isolation cell, and we will continue to do this until we know everyone is safe and this is all over.

Let’s stop it in its tracks. I’m finally able to live my life again, I don’t want it to be over.

 

This interview is from RED Magazine, Edition 1, 2021.


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