'My illness and the battles I have faced have made me who I am today'

1st December 2019

Bryony bravely shares the battles her and her family have faced with cardiomyopathy and how she doesn't let it stop her living a fulfilling life. 

My twin was diagnosed at 17, having collapsed in the gym. However, there was no real understanding in our family about what ‘cardiomyopathy’ really meant.

But in August 2013 my life changed. My twin had a cardiac arrest at work. She received CPR at the scene by a colleague and through the heroic acts of her colleague and the medical staff, she survived.

My mum, brother and I were then checked and diagnosed. We all received either ICD's or pacemakers as preventative measures and life went on for a while.

Bryony in hospital following open heart surgery

In June 2016, my sister received planned open heart surgery that turned into a nightmare beyond anything you can imagine. She suffered severe post-surgical complications and spent many days on the ventilator. A second open heart procedure saved her, and it has to be said, her life is a literal miracle.

Over time, I got increasingly symptomatic. In July 2018, I had an ablation to treat AF, following an episode where my heart went up to over 220 bpm and my ICD administered a shock. From February 2019, I was housebound, depressed and signed off work.

At my wits end, I chose to push for open heart surgery, despite my fear following my sisters' experience.

Surgery was terrifying - the hardest thing I ever did. However, 5 months later and I feel like cardiomyopathy is no longer my life.

I can push my daughter on the swings, I can go out with my friends or go to gigs with my boyfriend. Life now has hope beyond just wanting a steady heart rate. My life is now full of real dreams again.

Since my surgery, I have bought my first house, passed my driving test and returned to work full-time. I feel tired some days and I struggle with the psychological impact that cardiomyopathy has had on my family, I get angry at the 'why us' but equally, I am so thankful to be alive and to still be 'the twins'.

What we have gone through as a family has been indescribable but we are closer than ever because of cardiomyopathy.

I say to anyone suffering with this illness; do not give up. Listen to your body. You know when you are not right. 

It may rob you of happiness at times, but my illness and the battles I have faced have made me who I am today and I would not change a moment for that.

I am immensely proud to wear my open heart scar as well as all of the scars inside me too. I really appreciate the strength cardiomyopathy has given me.