If someone had told me 10 years ago that this is how my life would be when I was 38 years old I would have laughed in utter, insistent disbelief. At this current moment in time I am in end stage organ failure, unable to have children & slowly dying. I have spent the last one and a half years waiting for a miracle phone call to save my life by gifting me a beautiful new heart.I was born with a complex congenital heart condition - so complex that it had not ever been discovered at the time in Australia. I was born on the 21st of June 1984 and my entry into the world was anything but ordinary. A few hours after my birth the first signs appeared indicating that I was not well. The nurse told mum I was the bluest baby she had ever seen.

My first 3 heart surgeries were performed at 3 days, 6 days, and 6 months old. At that point I was given maybe a life expectancy of 6 years at the most. From that moment on my parents raised me as a normal kid and figured if I wasn’t going to be here for a long time, they were going to make sure I gave life ‘a good go’.I was never raised to think of myself as a “sick kid.” I played every sport imaginable, came last in them all but at least I still gave it a go. I strongly believe this mindset played a big part of why I defied odds and continued to live life so well. I lived so well in fact I became very naïve about my condition. Growing up I just thought I had a scar down my chest and I was sick when I was a baby.

It wasn’t until I was 21 years old that I started to realise that maybe I am a little different. I had my fourth heart operation at this age, recovered so well and bounced back better than ever. I spent the next 12 years filling up life’s cup; I travelled and worked overseas a lot and to be honest probably did a lot of things I shouldn’t have! I thought I was invincible.

It wasn’t until 2016 when I noticed things starting to become a struggle again that reality slapped me in the face. As we embarked on heart surgery number 5, naively I thought I would bounce back like before. But I never really recovered from this surgery, which was very foreign territory to me and my family because every surgery up until this moment had always helped.After a scary 18 months of multiple hospital visits, ambulance trips and air ambulance flights from Coffs Harbour to Sydney, and constantly being told my symptoms were anxiety and there was nothing wrong with me, we finally were advised the surgery was unsuccessful and I was now in end stage heart failure and liver cirrhosis. My only option of survival was a heart transplant however due to the damage my heart had caused to my liver I may be looking at a heart and liver transplant but that particular double transplant had not yet been performed in Australia.

At the same time I received the news, I was casually told, “whatever you do, don’t fall pregnant as it will kill you.” To be told at 35 years old that you cannot start a family, or carry your own pregnancy was like a knife through my heart, as throughout my whole 35 years of being under a cardiac team not one person had ever advised me that my heart condition would affect my ability to carry a pregnancy.

On the 24th September 2021 I was finally listed for a heart transplant. Over the past one and a half years that I have been waiting for my phone to ring so many memories play over and over again in my head. It’s only now that I realise how many areas of my life my heart affected - from school and learning difficulties, coordination, memory, facial and dental deformities. Even now waiting for a heart my previous medical history plays a role. Due to all my surgeries I am classified as “highly sensitized” which means due to all the blood transfusions and donor valves, I have extremely high antibodies (98%) - so high that we were told if I was in America I would not even be listed as I would have been deemed too ‘high risk’!

I have undergone a few procedures to try to lower my antibodies, however to date nothing has worked. I am now waiting on a miracle medication from America, after the transplant team put together a case for me and fought to have me approved as it is not on the PBS. This is my last ditch effort at improving my chances of getting a new heart.

I always have been positive and optimistic but recently I have thought that maybe I used up all of my good luck and this is how my story ends, and other days it’s like I am looking at somebody else’s life. Whatever the outcome I have made a promise to myself that if I can share my story and bring much needed awareness to congenital heart disease and show not only the scary side that nobody talks about but also show that you can have a wonderful, beautiful, fulfilling life and achieve all your dreams – that will have a lasting impact.

Cara Curan is a well-travelled and dedicated advocate for congenital heart disease, invisible disabilities and organ donation, having been on the heart transplant list since September 2021. Cara is represented by Champion Health Agency [https://www.championhealthagency.com/cara-curan], and wants to share her journey publicly to show other families of CHD patients that despite the heart surgeries and the scariness of having a complex heart condition, you can still live a full life.

Instagram: https://www.instagram.com/wildheart1984/ & https://www.instagram.com/championhealthagency/

Alternative Text: An image of Cara Curan, a caucasian woman in her thirties with long brown hair and blue eyes. Cara is wearing a red long sleeve bohemian style top that ties in front, showing a large scar down the middle of her chest. She is wearing long black pants, and standing on a rock with her hands by her side. Behind her is a blurred background of blue water and land in the distance, and a blue sky.

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