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Melissa's Story

“I stood there and watched my mum pass away and I thought ‘wow I have that disease too’.

I’d been fighting cardiomyopathy for 16 years before I needed a transplant urgently. 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. It didn’t make sense; it still doesn’t make sense…

My time was up and I wasn’t done living yet. I still can’t get my head around it. To hear those words, that I was dying and quite rapidly, it was terrifying. It was a pain I couldn’t take away from my family. And I didn’t want my brother to have to bury his mum and his sister to this awful disease.

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.

On the night of my transplant there was a lady who also went into the operating theatre. Simon met her husband in the waiting room and they started talking. He said his wife Liz was having a lung transplant… Liz and I are the same blood type. We don’t know for sure but we’ve put the puzzle pieces together and I’m convinced we had the same donor. 

One day after surgery Liz and I were talking and my sister-in-law suddenly burst into tears and said “You guys haven’t skipped a beat, you’re finishing each other’s sentences, it’s like you’ve known each other your whole life and you only met a week ago.” 
 

We even had the same weird food cravings. I said “I can’t stop drinking milk. I just can’t get enough of it. And Liz said “Me either! And I hated milk two weeks ago! Now I just want to drink two litres of it!”

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. A lot of people think, when you’re given a new heart you don’t have any more problems. Unfortunately it’s not true. Once you fix one problem, it often leads to something else…

Laying in a hospital bed that I thought I would never leave, I questioned everything that was happening to me, my body and most of all my heart.

I was only a week post heart transplant and I couldn’t stop the tears or my grief. I was grieving a complete stranger that had given me the greatest gift of all. I wanted to comfort their family and let them know that my parents would have found them and will look after them until we all met on the other side. I wanted to know where and how and most of all why. I wanted to know everything about my heart, our heart, and I knew I may never receive these answers.

I knew then that I had two options. I could let this grief and questions of why consume me, or I could get up and fight and live. I knew I would never have a significant life that people will talk about in generations to come, but I could make this life, my life with our heart one that they could be proud of. I knew that I would never have the details about my donor’s hopes, loves, goals, dreams and desires, so I thought I would create my own for them, for us, for our heart and I would develop a bucket list, our bucket list….” – Melissa.

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.

Learn more about cardiomyopathy 

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