I was 21 when I was diagnosed with Dilated Cardiomyopathy DCM. I was breathless, was putting in fluid weight, and was struggling to walk in a flat surface.

My father had passed away from the same illness when he was 31 years old. Naturally I was especially worried I was on the same path.

Luckily it wasn’t 1982 anymore and I was offered medication options, close follow up with a cardiologist, and a defibrillator was implanted in my chest. It felt like my insurance policy against an arrhythmia.

My life didn’t change too much. I took medications morning and night and I learnt how to cook meals using whole ingredients, without premade or high salt, and processed foods. I would huff and puff as I tried to keep up with work mates on a coffee run in the city. At first I was embarrassed, but as time went on I would just laugh about being the slowpoke of the group. I found ways to compromise so I didn’t exclude myself from social events. Though I wasn’t signing up to hike for three days in the bush. I limited my alcohol intake, but never said no to a cheers with some bubbles.

Heart disease is perceived as a men’s disease but I’ve met many women over the years who live with DCM like myself. I have also educated loads of friends, family, colleagues and even strangers about this invisible disease too. There is often something good that comes from hardship.

The foremost and saddest way DCM impacted my life was becoming a mum. I couldn’t carry a baby. My heart was too damaged and weak to survive a pregnancy.

But I have quite a wonderful story in that I did become a mum through surrogacy. DCM didn’t stop me reaching that parenthood goal, but it did challenge me to think outside the box.

I spent almost 11 years managing my DCM and had I not inherited a genetic syndrome from my dad I could have remained stable on medications for years.

I slipped into end stage heart failure quite rapidly toward the end of 2014. But again, because of science and medical research, I was assessed and listed for a heart transplant. I was one of the luckiest people alive when I received my heart in 2015.

Dilated Cardiomyopathy isn’t a death sentence, but it is a call to action. Look after yourself by attending appointments, taking your medications, and remembering to live your life.