I’m doing better
9 weeks ago I started Trikafta. The newest of the Cystic Fibrosis modulator drugs. After 7 months of pushing, pleading & patiently waiting, I finally got it.
Slowly & steadily, Trikafta is working at a cellular level, giving me my life back one day at a time. 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 2000 steps a day. Walking to the kitchen was a chore & 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 & tantrums. Hating my life.
Now, I’m doing over 6000 steps a day & running around the house to reach my daily goal. I’m standing in the shower again, washing my hair isn’t a chore & I can sing & dance like I could before. I haven’t danced in so long & it feels SO good to just blast my favourite songs & whirl to the music.
I laugh without coughing. I can play with my nieces and nephews, walk my dog & cook 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 & I’m so grateful.
I didn’t get this far, fight this hard, delay a double lung transplant for 12 months, just for a random virus to kill me. So please right now, in the midst of all this craziness, think of the 4 percenters like me that don’t have a reserve of health. Practice social distancing the best you can, WEAR A MASK FOR THE LOVE OF ALL THAT IS GOOD AND HOLY! Stay safe, and keep others safe!
I’m finally able to live my life again, I don’t want it to be over.
Slowly & steadily, Trikafta is working at a cellular level, giving me my life back one day at a time. 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 2000 steps a day. Walking to the kitchen was a chore & 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 & tantrums. Hating my life.
Now, I’m doing over 6000 steps a day & running around the house to reach my daily goal. I’m standing in the shower again, washing my hair isn’t a chore & I can sing & dance like I could before. I haven’t danced in so long & it feels SO good to just blast my favourite songs & whirl to the music.
I laugh without coughing. I can play with my nieces and nephews, walk my dog & cook 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 & I’m so grateful.
I didn’t get this far, fight this hard, delay a double lung transplant for 12 months, just for a random virus to kill me. So please right now, in the midst of all this craziness, think of the 4 percenters like me that don’t have a reserve of health. Practice social distancing the best you can, WEAR A MASK FOR THE LOVE OF ALL THAT IS GOOD AND HOLY! Stay safe, and keep others safe!
I’m finally able to live my life again, I don’t want it to be over.
