About

My name is Angie and I have congenital heart disease. The condition I was diagnosed with at birth is Tetralogy of Fallot. I spent the first five years of my life in and out of hospital. Shortly after my sixth birthday in 1988, I had open heart surgery in a private clinic in London to repair this condition. Simplified, the operation included but was not limited to having a human valve transplant and "patching up" holes in my heart.

Post operation I lived a relatively normal life without any on-going cardiac issues. Due to minor holes in the heart that couldn’t be fixed and an arrhythmia, the only consequence was that I could never be an athlete. I shouldn’t physically exert myself excessively, and always have to be extra careful. All the standard heart health things apply: limit alcohol consumption, no smoking, exercise regularly, eat a healthy and well balanced diet, ensure to maintain a healthy weight etc.

I had a paediatric cardiologist from the Women’s and Children’s Hospital in Adelaide (where I was born). As my regular check-ups became less frequent and I moved out of home in my late teens, my direct care fell off the radar. My mum did a wonderful job looking after me (particularly during the early years) but suddenly I was left to fend for myself. After all, I had become an adult and that’s what adults do. But a gap existed; I wasn’t sure where to go next and who to engage to help me look after my heart. I fell into a gap that seemed to exist between paediatric and geriatric care.

I began experiencing heart palpitations around 19-20 years of age. They weren’t major nor did any symptoms (such as dizziness, blacking out or shortness of breath) appear. My GP at the time suggested I take some medication to lower my heart rate and suppress the palpitations. I felt really shocked that after my operation and not having needed to take anything for 14 years, that I could potentially be on medication for the rest of my life. I felt really alone, confused and overwhelmed, but heeded my doctor’s advice. I took the medication for a short while. There were side-effects: shortness of breath, confusion, tiredness. Due to my heart condition I already somewhat suffered from shortness of breath and tiredness, but these tablets seemed to make those symptoms worse. That’s not how I wanted to live the rest of my life. I wanted to be “normal” like all my friends, so I cut the tablets. With my limited resources and no support, I sought alternatives. I began seeing a chiropractor who combined acupuncture with her treatments. Getting these treatments helped to manage anxiety and naturally lower my heart rate. I seemed to be OK for a while.

I graduated university and moved to Sydney in pursuit of career opportunities. My care continued dropping off while the palpitations continued. I eventually got a referral to a cardiologist in Sydney. He was a complete fuddy-duddy and his opinions, just like his office, had not been updated since the 1970’s. He had no bedside manner and scoffed at the idea of using alternative treatments. He insisted I take medication and look at getting a pacemaker put in. This was not something I was ready to deal with. Again feeling isolated and overwhelmed, this time I decided to ignore the situation altogether. I did what any person in their early twenties did in a new city: lived my life, worked, made new friends, partied and dreamed about travel.

In 2006 the travel bug really set in. I started with South America for a month. I came back to Sydney, packed my stuff up and set out for Europe indefinitely. The plan was to end up in London and work there for a while. After a three month whirlwind tour of Europe I ended up in Greece to reconnect with relatives and got side-tracked. I found my estranged brother and ended up staying with him for approximately 9 months. In the meantime he opened a bar and I worked there. I worked really long hours, shifts back to back, binge drank, partied, didn’t sleep much and did everything I could to avoid thinking about my heart problem. I continued ignoring my health, wellbeing and particularly my heart condition. After all, my only options seemed to be medication and a pacemaker. Options which I thought were only suitable for the elderly.

The time came to deal with my problems. Not wanting to navigate the landscape in a foreign country (my Greek is decent, but not that good), I decided to head back to Australia and get my life back on track. I started off in Adelaide where it all began: at the Women’s and Children’s Hospital. I had a check-up but it was inappropriate for me (in my mid-20s) to seek care in the paediatric unit. I was immediately referred to Dr Patrick Disney who specialises in echocardiography and adult congenital heart disease. After some tests, we discovered my heart's left chamber was weak. It was pumping at 35% capacity out of a potential 55%. The guilt set in instantaneously. Not only had I ignored my heart condition; I did a lot of things I thought, to make it worse. So I bit the bullet and gave in to taking medication, in the hope that my heart wouldn’t get worse.

I moved to Sydney to again pursue career opportunities. I continued seeing Dr Disney back in Adelaide for a while, because for the first time in a long time, I felt I had someone suitable and caring to help me look after my heart. He is young, vibrant and seemed to be a lot more open minded, so I felt it was easier to connect with him. It finally felt like the gap was closing.

Over time it became difficult to head back to Adelaide regularly for appointments. I really needed someone close to home, which now was Sydney. Part of getting my life on track in Australia included setting everything up again, including health care providers. I got a new GP and she referred me to a cardiologist in North Shore Hospital. We did some tests, he reviewed my results but it seemed he was out of his depth – his waiting room was full of geriatrics. He referred me to see Professor David Celermajer at the RPA Medical Centre, as he thought he could advise on my condition, being an adult congenital heart disease specialist. I now had more courage to talk to (some) people about my heart condition. I was talking to a work colleague about it and she ended up having friend who worked with Professor Celermajer and highly recommended him, particularly for people in my situation.

According to the North Shore Hospital cardiologist and my GP, the visit to Professor Celermajer was supposed to be a one or maximum two time deal. After only my initial consultation, I felt assured that I had finally found the right person to help me in my heart healthcare quest. It therefore didn’t seem that much of a coincidence that he had trained under my surgeon in London, Dr Jaroslav Stark. There was no question who I wanted to look after me, so I engaged him as my cardiologist and have been in his care ever since. It’s a tight-knit industry after all; I had come full circle.

I continued taking the medication I started with Dr Disney for about three years, even altered it under Professor Celermajer’s advice, with whom I had regular check-ups with. The medication’s purpose was to hopefully give my heart a chance to heal and for the heart function to improve.

I’ve always kept an open mind. Now nearing my late 20s and having disposable income, I also had the financial resources to seek additional care. I knew I needed holistic care. I had a thought and a sense that surely nutrition, psychology and other factors played a part in my heart condition. I found a holistic therapist who’s a doctor in Traditional Chinese Medicine (TCM), her name is Jaime. At that time, after some tests with Professor Celermajer, we discovered the medication I had been taking for years, had made no difference in helping my heart improve. I was determined to find something else that worked, whilst still seeing Professor Celermajer. I wanted to combine the best of what both worlds (Western and Eastern) have to offer.

I started my holistic care approximately three years ago, which includes acupuncture, drinking natural herbal tonics, nutrition and counselling sessions. Whether it’s through it or not, I was able to maintain the same pumping capacity in my left chamber, and even slightly improve it to 37%. Medicine for its entire scientific basis and reasoning can be ambiguous at best. The human body is so marvellous it seems no-one is ever able to give a certain answer for anything. So although this slight improvement was acknowledged, there was no certain reasoning behind it.

At 29, two months shy of my thirtieth birthday I married my now husband Chris. We were embarking on our next journey together which we hoped would one day include parenthood. I continued seeing both Jaime and Professor Celermajer; and helping me plan for a family became the priority for both healthcare professionals. I had to ensure my heart was up to the pregnancy. Not only to carry a baby to full term, but we also had to manage the risk of any major consequences postnatally. I had to be healthy to have the ability to take care of the baby once it arrived.

After close examination and care, I got the all clear at 30 and we started trying for a baby. Professor Celermajer referred me to a close colleague of his: Dr Stephen Morris who is a high risk obstetrician. As soon as I met him, I knew that moment too that I was in the right care. At 31 I gave birth to a full-term perfectly happy and healthy baby girl named Zoe. I thank the universe every day for the gift that is Zoe. We are so lucky to have her. Professor Celermajer has aptly named her our miracle baby. Her name means life in Greek.

It has been reassuring to be cared for by healthcare professionals that are leaders in their field, have extensive experience and close working relationships with each other. I feel safe and supported. No matter what their (Professor Celermajer and Dr Morris) personal beliefs are around natural care, they have always been 100% supportive of me pursuing TCM treatments with Jaime; and vice versa.

At 32, in early April 2014, I had a cardiac arrest. I was so lucky to be at home and that Chris was there with me at the time. We both had done a first aid course some months before. He performed CPR until the ambos arrived and they resuscitated me. I was rushed to St George Hospital, stayed under sedation in ICU and then transferred to The Royal Prince Alfred Hospital (RPAH) for recovery and installation of a defibrillator. I was in hospital for 2.5 weeks. There was no question as to whether I would get a defibrillator or not. I am lucky to be alive and will do anything to not risk losing that life.

I’ve always known that I had to share my story. After the cardiac arrest I knew that now was the time. I realised my purpose in this life is to help other adults suffering from congenital heart disease by sharing my experiences. I do this in the hope to provide support and relevant resources. Unless you are lucky enough to have access to great and caring healthcare professionals like I do, it can be easy to fall into a gap. This gap is characterised by little or no support for ACHD sufferers, their families and friends. If this is the case, it can be a miserable, overwhelming and isolating time. My long term vision is to create a support network for ACHD sufferers and for families and friends of ACHD sufferers. I hope you find my story useful.