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Melissa's Tribute

My name is Melissa.

I’m 36 years old, I am a daughter, a sister, a wife, an aunty, and a godmother. I’m also a survivor. For 15 years I battled familial dilated cardiomyopathy.  Until 30 months ago I received a heart transplant that unquestionably saved my life.

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.

My beautiful mother Christine was one of 15 children raised in a three bedroom home in Seven Hills. She was the youngest girl of seven and lucky number 13.

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. Cardiomyopathy is a disease of the heart muscle and prevents the heart from pumping blood around the body properly. It leads to heart failure.

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. She is the reason I am before you all this evening.

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 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 Institute they discovered that my heart was enlarged. I was also diagnosed with familial dilated cardiomyopathy. I was devastated by the news. All I could think about was my beautiful mum, aunts and uncles that I had lost to the disease and now I had it too.

Once I was diagnosed a lot of things that had been happening to my body began to make sense. I was always tired and lethargic. I was lucky enough to be able to work a full time, but as soon as I would come home on a Friday afternoon I would sleep all weekend so I was ok to go back to work on Monday.

We all assumed that I was grieving and depressed. Never did the thought enter any of our minds that it could be my heart.

During my 15 year battle with cardiomyopathy I had a love hate relationship with St Vincent’s Hospital. I've walked through the doors with so much hope and courage, but I can honestly say I’ve also walked out with grief, sadness and disbelief.

I was called the exception to the rule and told that I looked better than advertised by my heart team. I’ve had three defibrillators which saved my life on five separate occasions from cardiac arrest.

Three years ago in November, on a normal Monday morning I was sitting at my desk at work and I just felt off. I had been putting it off for so long just hoping it would go away and I could rest or sleep it away. It was then that I decided I needed to go and get checked. I knew I couldn’t wait any longer. I stopped at Kmart, got some essentials and drove myself straight to St Vincent’s Hospital.

I was admitted, and over the next few days they performed several tests to see what was wrong. I can still hear the words in my head. “Melissa, you’re in end-stage heart failure. You’ll need a heart transplant to survive.

I was on the transplant waiting list for 27 days and I was transplanted on the 27th February, 2016. I remained in St Vincent’s Hospital for 6 months after the transplant. My new heart and I didn’t have the greatest beginning to our relationship.  I was the Queen of infection and rejection. I had my sternum cracked 3 times and I needed a replacement tricuspid value.

This was just the medical complications. The emotional side of transplant was much more than I ever expected.

I was grieving a complete stranger and a family I would never meet. I wanted to comfort them. I wanted them to know that if they had no one on the other side, that my parents would be looking after them until we could all meet again. I wanted to be able to say thank you and put a face or a name to the person who had made me their last random act of kindness.

I knew that I couldn’t continue like this and that I needed to live an honest and truthful life, one that they would be proud of, I wanted to live a life for 2 hearts. I created a bucket list for my donor not knowing what theirs would be.

No item was too big or too small we just wanted to honour them the best that we could.

We celebrate them on the 27th of every month, even if it’s lighting a candle, dancing around the lounge room or having a special dinner.

I have seen snow fall for the first time and even got to build a snow man. I have walked across the Sydney Harbour Bridge, presented the game ball at an FFA Cup match for the Western Sydney Wanders and Donate Life. I have travelled to places I only dreamed of seeing and I even built up enough courage to go on a two-day cruise.

On my 1st transplant anniversary my sister-in-law, Marissa and I flew over Heart Reef at the Great Barrier Reef. I did it again a year later on my honeymoon, because on my 2nd transplant anniversary I married my best friend, my greatest critic and soul mate, Simon. We honoured our loved ones that couldn’t be with us and my beautiful donor.

Next year we are planning to visit the UK and watch Simon’s greatest love, Liverpool play at Anfield and I finally get to visit my sister-in-law, Marissa’s home in Ireland. She is the true heart of our family.

I have a rewarding job that gives back to people in the community with health issues, I wear red for women with heart disease, and I will always try to show my scar to start the conversation about organ donation.

We all have the power to give someone the greatest gift of all…time.

Because of the Victor Chang Institute, my donor, my husband and my family I have received 30 months of time, moments and love I was never meant to receive.  I’m exhausted, I’m scarred, I’m grieving, I’m loved, I’m proud and most of all I am here.

Melissa was the guest speaker at the 2018 Heart of the West Ball.

If you would like to contribute to Melissa’s Bucket List please email;  media@victorchang.edu.au

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

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