Real life

Melissa's Story

For as long as I can remember heart disease has had a massive role in my life. When I was 10 years old, I lost my father to a massive heart attack. He said goodbye one afternoon and went to football training. He never came home. He was only 42 years old.

In 1981, just a few months before I was born my mum lost her baby brother, the youngest of the 15 children, Darryl, to cardiomyopathy. He was only 27 years old.  It wasn’t until nearly a decade later that they would realise this was a genetic disease, better known as familial cardiomyopathy. 

When I was 17 years old I lost my beautiful mum Christine to cardiomyopathy. The last words she ever said were “I think I’m going to black out”. Before I could say anything to her, she went into cardiac arrest. My mum left behind two children, my older brother and protector Michael, and me. 

In 2000 when I was 19, my family was invited to be a part of some new genetic testing run by Professor Diane Fatkin at the Victor Chang Cardiac Research Institute. They thought that testing our family would be amazing for breakthrough research as 7 of the 15 siblings, including my mum, lost their battle to cardiomyopathy before the age of 50. We all needed answers, and we all didn’t want another family to go through so much loss and heartache as we had.

It was during my appointment for the genetic testing at the Victor Chang Cardiac Research Institute they discovered that my heart was enlarged. I was also diagnosed with familial dilated cardiomyopathy. I was devastated by the news. I had watched my mum pass away and now I have that disease too.

I fought cardiomyopathy for 16 years before I needed the urgent transplant. I’ve had three or four episodes of cardiac arrests, I’ve had three defibrillators and my last brand new defibrillator didn’t even last a full year before I went into heart failure! That’s when I needed the transplant.

One day my doctor simply said “you’re in the final stage of heart failure”. I was in such a shock. My fiancé Simon had only just come into my life and I kept thinking “why did this amazing man walk into my life, only for me to have to leave him.” It doesn’t make sense.

To hear those words, that I was dying and quite rapidly, it was terrifying. 

So we started the paperwork for the transplant waiting list. I had dental exams, bone scans, skin tests. Then a doctor came in and we had a very real conversation about organ donation. He asked me “Why do you deserve this gift?”… And I couldn’t answer him. Because why does anyone think they deserve to be here?! I said I lead a very simple life. I’ve never had many dreams or goals or ambitions with work, but nothing makes me happier than Sundays… watching all the kids in my family play. My brother always makes spag bol for everyone and we sit around and listen to music and laugh and everything is good.  And I don’t want to miss that. And the doctor said that was reason enough.

My sickness didn’t disappear after the transplant. My kidneys went, I had the highest level of rejection and they discovered an arrhythmia. But I guess they’re things I had to go through to be here today, to survive. 

You can help patients like Melissa by supporting vital discoveries at the Victor Chang Cardiac Research Institute.

Support heart researchThree years after the transplant Learn more about cardiomyopathy