When I was 25 years old I walked into the Red Cross in Town Hall of Sydney city. It was late August of 2016. I had never donated blood before but felt compelled to pay it forward.
After my donation, I had an hour-long train ride home. I remember feeling jittery and a bit out of sorts. Having never given blood before I wasn’t sure if these feelings were normal but felt fine enough so wasn’t overly concerned. When the train arrived at my station I began to stand and immediately was met with a loud ringing in my ears. I had white blobby vision as if I had just been staring directly into the sun and felt as though I was gasping for air. This was the start of what became a quick induction to my heart patient journey.
Before this episode, I had never had any run-ins with heart health. At birth my parents were told that I had a mild/trivial heart murmur and not to worry about it, I was taken for an echo as a newborn but nothing clear was diagnosed. As a child, I was very active and competitive with sports. When I exert myself I often experienced shortness of breath ‘asthma’ – or so we thought at the time – but that was the only symptom I ever experienced.
After my initial incident on the train I took myself to a GP to get a referral to a Cardiologist, to be quite honest with you it was because my Father was urging me to have my heart checked not because I believed there was anything wrong in fact I thought it would come back completely fine and prepared for no news is good news as my outcome.
This wasn’t how it played out for me. I saw the Cardiologist and had an ECG and Echo. When the results were presented to my Cardiologist it was very quiet in the room and carefully he asked me …’how do you feel right now?’. My results indicated that I had severe stenosis and severe regurgitation of my aortic valve. It was honestly a miracle that my day-to-day life was barely impacted. Even as I sat in that appointment I had no signs indicating that I had a congenital heart defect at all.
Without surgery, I was told I would be lucky to see my 30th birthday and I would unlikely survive childbirth. The stress my heart was under would only become greater and breathing would become more difficult.
So on April the 18th 2017, I underwent an 8 hour open heart surgery and had what is known as the Ross procedure. This particular surgery was the ideal one for me as a 26 year old newly married young woman. It would mean I would not need to be on any heavy blood thinners post op and I would be able to carry and birth my future children.
The Ross procedure involved removing my own aortic valve. replacing it with my own pulmonary valve and the pulmonary valve was replaced with a human autograft.
This year will be my 7th anniversary since my open heart surgery.
I am a mother to two beautiful and healthy children both of who have had their hearts checked and appear to not have the same congenital condition.
After my surgery and my aortic valve had been removed my surgeon Dr Peter Skillington from Epworth Hospital in Melbourne informed me that I had been a unicorn born with only 1 cusp on my aortic valve (you should have 3 similar to a Mercedes Benz symbol).
I live now with deep breaths 🙂 I am so grateful every day to be here. I have outlived my life expectancy and I eagerly share with others to check their hearts. I have had many conversations with other women surrounding heart ‘episodes’ and for many of us, we were uneducated about signs or symptoms leading to our episodes and did not know what to look for until after the event had occurred.
Perhaps had I myself known to advocate for myself I never would have assumed I had asthma my whole life which had been my diagnosis. No medical professional ever mentioned my heart health.
I hope that by sharing my story I can do two things. Firstly draw attention to the fact that you don’t have to be over fifty to fall into the cardiac patient bracket. Cardiac health is non-discriminatory. Secondly, it is always worth checking in with a specialist if there seems to be something funny going on. Shortness of breath as I’ve mentioned was my only symptom of a very life-threatening condition. One that was misdiagnosed over and over as Asthma. Similarly, I have spoken to women who had heart attacks and their only symptoms were heartburn. Knowing the symptoms to be aware of could save your life.
If you have made it this far. Thank you for reading. All my love. Suzie