A life without scars... (Nick's Heart Journey)

On July 5th 2018 my whole world changed. At 25 I was diagnosed with Pulmonary Stenosis. Before I get into that I would like to introduce myself and my heart condition.

My name is Nicholas Kakoliris and I was born with a congenital heart defect. My exact condition was called Transposition of the Great Arteries. At birth I required 3 lots of heart surgeries, two of which were open heart surgeries. My first surgery was done the day I was born, January 15th, 1993. The doctors performed a non-invasive surgery named ‘Repair Septal Defect’. A couple of weeks later they performed an ‘Aortic and Pulmonary switch procedure.’ 30 days after that they fixed the coarctation of my aorta.

I do not know life without my scars. I grew up looking at myself having three noticeable scars. One, commonly known as the zipper, runs down my chest. Another, from my coarctation surgery, is on the left of my body, beginning at my shoulder blade and ending at my ribs. The third, an indented scar, sits below my zipper… this is where they had inserted a tube in me as a baby.

Baby Nick after surgery.

Reading this may have you feeling sorry for me or thinking that I had been dealt an unfair hand. The truth is though, my heart condition has never restricted me in any way shape or form. I have done and been able to do everything I have wanted to. I have competed in all sports successfully, ranging from soccer, cricket, rugby league, rugby union, Aussie Rules, weight lifting and Brazilian Jujitsu (BJJ). I have scored tries, goals, hit sixes, dead lifted over 180kg, bench pressed over 125kg, squatted more than 140kg and competed and won various medals in many state titles in combat sports.

When I was diagnosed, I was in the best shape of my life. I was the fittest and strongest I had ever been. I was deep into a training camp in preparation for a BJJ tournament that was being held in Sydney on July 28th and I was going there to win.

A few months before the tournament I organised a general check-up with my cardiologist. The cardiac team that look after me are based in Sydney and have treated me since birth. Even though I live in Adelaide now, I chose to keep seeing the same doctors. These doctors know me, my heart and my life goals.

When I went in for the appointment I expected to hear the usual “You’re all good Nick, keep doing what you’re doing, and I’ll see you in 18 months.” I wish this had been the case. After lying on the bed underneath the ultrasound for only a couple of minutes my cardiologist said “it’s not looking to good.” He took a few pictures, measured a few things in my heart and immediately organised an MRI scan for the next day. I suddenly began to panic. My whole life I had been receiving positive news about my heart and health whereas now I am being told I am unwell and needed an intervention. At the time of telling me he was unsure whether it was going to be open heart or a catheter procedure.

\ We then began talking about exercise. I told him that I was coming back to Sydney in a few weeks to compete in a state tournament for BJJ, and that all my flights and registration fees had been paid for. He stopped and paused for a second and said, “Look it is completely unsafe for you to compete in any high intensity sport, it could kill you.” Hearing these words completely destroyed me. At 25 I was being told I could die if I exercise. My whole life I have been active, fit and healthy. All my doctors and cardiac specialists, including this doctor had previously told me I had no restrictions and could do whatever I wanted.

I did receive some good news that day but it fell on deaf ears. My condition was treatable and, in time, I could expect to return to my life of no restriction and continue doing the activities I loved once again. While there was light at the end of the tunnel it was hard to see at the time. It was hard to move beyond the dark, consuming thoughts and fears that came with knowing I needed another heart surgery.

I think that was the very first night I cried myself to sleep.

Throughout this blog I will be detailing my whole experience regarding heart surgery. My ultimate goal is to return back to competing in BJJ and take this one step further by competing in Mixed Martial Arts (MMA) I am still young enough to pursue the sport and now I have a reason why. That reason is to show everyone that was born or has been diagnosed with a heart condition, that there is light at the end of the tunnel and that you can in fact live a healthy and wholesome life despite having a heart condition.

Nick competing in a BJJ competition.

I would like to thank Heart Support for giving me the opportunity to share my story.

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