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Alex- My Life With CF

Hi, I’m Alex and I have CF. Let’s start by saying something positive, this year I turned 30!

My childhood was a fairly cruisy one with my CF and I believe that is partly because of the strict routine my parents had going to keep me fit and well. In primary school I always kept my CF a secret. I would never take my enzymes and I was always going to the toilet. I was embarrassed about it.

From memory I don’t recall coughing much up until I was about 19. I was very fit, and I could run a marathon easily. When I graduated high school and started going out clubbing with my friends that’s when things changed drastically for my health. I’ll always remember Dr Steve Stick saying that between 19-25 will be the most important time to stay healthy. If I’m being honest, I didn’t do physio, I didn’t clear my airways, I didn’t take my medicine on time all the time, I recreationally smoked weed for fun (worst mistake!) and drank alcohol until I was drunk when I went out. My first admission on IVAB (intravenous antibiotics) I was 18.

When I turned 24 I got really sick, I had never been this sick before. I will never forget. Life was changing. Over the years leading up to now I’ve had my ups and downs, but I’ve always stayed positive and motivated in life by doing things that make me happy! I met my now husband in high school (we were friends). Four years out of school we caught up and we have been inseparable since. He’s been one of the best supports and he motivates me every day.

I’ve had a lot of jobs since graduating high school, I never knew what I wanted to do as a career therefore I got myself a few different qualifications. I found my true calling at 25, a makeup artist. It started as a hobby part-time alongside my full-time job. When I got sick, I couldn’t work full time anymore, so I ended up quitting and concentrating on my makeup instead. This was the best decision I ever made. I made a commitment to my health and with my business I could choose when I wanted to work and control the number of clients I was seeing. I was less stressed and felt happy.

I started Orkambi® in 2017 and I was on it for 2 years. This drug however had side effects, one of which was shortness of breath, but I learnt to manage and deal with it. In 2019, I was struggling so much with my lungs, my lung function was declining, and I was losing weight rapidly. My CF team referred me to the ALD lung transplant team at Fiona Stanley. I was petrified. I was depressed and I was questioning life and my future. Lucky for me I have a supportive husband, family and friends – they reassured me everything is okay, and we will get through this together. My husband and I travel every year up to the North of WA to get some warm salty air, which is so good for my health. I always feel fantastic when we are there, it even gives me a break from the “real world” back home.

Mentally I’m still not prepared for the future with my CF however I have to keep that positive mind set and stay strong! Late 2019 I got the answer to why my health was declining, I was diagnosed with CFRD (CF-related diabetes). Since starting treatment (insulin) and being transitioned to Symdeko® in January 2020 my health has drastically changed once again! I have gained 10+ kgs and my lung function increased by 10% fev1. This was a huge deal!!

CF is a rollercoaster; CF is different for every one of us. We are all on our own CF journey, but it is so good to share it with other CF friends! I have a small group of CF friends and every day we talk on social media. It makes me feel better about myself. That it’s okay to poo a thousand times a day, to cough and spit all the crap out of our lungs, all those things that once embarrassed me no longer do. Because I know I’m not the only one, we aren’t alone on this journey; it’s life and it’s not perfect. I’ve learnt from the ups and downs and now I never miss a dose of medication, I do my physio and airway clearance and I try to stay as fit and healthy as I can. Without health you are nothing. I would rather be out there reaching my goals and conquering CF! I want a family one day, so I stay healthy and strong for myself, my husband, family and my friends. Remember, the future is a lot brighter for those who are young with CF. The research and modulator medicine of the future will be amazing and CF may be and hope to be cured.

 

This interview was for our CFWA Youth Instagram page. Follow along for more CF youth stories.


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