It all started when I was diagnosed with cystic fibrosis. I was three years old. The caring, attentive team at Sainte-Justine took good care of me when I was admitted to the hospital for two weeks for intravenous antibiotics.
Cystic fibrosis is a progressive, genetic disease. There is no cure. It mainly attacks the lungs and digestive system. It’s been causing all sorts of problems for my health since I was a little girl. And things have only gotten worse during the coronavirus pandemic.
My diagnosis changed my life forever. That was the beginning of daily treatments, which I will have to do for the rest of my life. Over time, Sainte-Justine has become a bit of a second home for me. Being there as often as I am, I have developed a special relationship with all the caregivers. I know I can count on them. People like Stéphane, my awesome orderly, or Isabelle and Thalina, two nurses who listen to me and help cheer me up when I’m in the hospital.
Unfortunately, my condition hasn’t taken a break while everything else has been on lockdown. CF causes the secretions in my lungs to be thicker, stickier and more abundant than most people’s. So I have to get several treatments a day to make sure they don’t clog up my airways. It also affects my digestive system, so I take a bunch of different medications to try to keep the symptoms under control.
My lungs aren’t in the best shape right now. I’m more out of breath than I usually am. I even had to be admitted to Sainte-Justine for oxygen therapy and additional care.
I’m obviously scared about what COVID-19 would do to me. It goes straight for the lungs, and I’ve been working so hard for so long to keep mine healthy. I have to be extra careful!
Everyone at home is in quarantine, except my mother who’s a nurse. I have to stay away from her. There’s too much of a risk of me catching the virus if she happens to be asymptomatic. I’m used to being in isolation when I’m in the hospital, but it’s different at home. It’s tough on morale. I try to avoid her as much as possible when she gets home from work, but it gets complicated. We’ve created a kind of buffer in the garage to help prevent the virus from getting into the house. As soon as she comes home, she gets undressed and takes a shower and leaves all her stuff in the garage.
I’ve taken advantage of being stuck at home to do as many CF treatments as possible and get back into shape. I’m also playing a lot with my four-year-old sister, who never turns down the opportunity to spend time together…
I’ve realized that this crisis has forced me to put my life on hold and enjoy some time with my family. Being on lockdown has actually given us all a nice break from our fast-paced lives.
Even though I’m 17 and it’s hard not to go out, it’s definitely worth the effort.
A lot of the researchers at Sainte-Justine are working on COVID-19 right now, but others like Dr. Tse and Dr. Mailhot are continuing to study CF and pulmonary health.
So it’s more important than ever to donate to the CHU Sainte-Justine Foundation to help them keep up this important work. Without research like theirs, there’s no hope for young people like me.
*The remarks expressed in this article reflect the opinion solely of the author and should not be considered as representative of the CHU Sainte-Justine Foundation.
