This is Our Story!

On the 20th of November 2021, my life changed forever. I lost someone in my life who had always been there, someone who should be here for the happy and sad moments - the life changing moments. This moment changed the course of my life in more ways than one. At the time we lost my brother James, we didn’t know what had happened to him. We didn’t understand how a perfectly healthy 31-year-old could essentially just drop dead. Within five months of losing him, we had some form of an answer and what we now know is: he had heart disease. However, what they couldn’t tell us was what type of heart disease. Our family was extremely confused because James was non-symptomatic, and, based on our reading of the coroner’s report, he was a very sick man. What we realised very quickly was that while the report did not identify what heart disease James had, I had a high chance of having the same disease. As such, I went off to get a series of tests done, which included the implantation of a heart recorder inside my chest.

The 27th of September 2022 was like any other day for me. I was working from home, running a virtual risk workshop, when I lost my breathe. I sent off an alert to my medical team and went on with my day. Within a few hours I received a phone call from my heart clinic, notifying me that I needed to come in immediately as the Cardiologist wanted to see me. So off I went to the clinic across town. When I arrived, I was raced into a room where I was told I had had a dangerous cardiac episode and was at a considerable risk of having a cardiac arrest. I was admitted straight into hospital to have continuous monitoring until I was able to go into surgery to have a pacemaker and defibrillator placed in my chest. The surgery happened two days after my first symptomatic episode. This is where the real journey began, and I don’t think anyone was expecting what the next five months would look like:

- Five admissions to Hospital (most within the first two months)

- 22 days in hospital

- Three trips to hospital via ambulance

- Four medical emergency calls

- Two trips to the ICU

- Six shocks from my internal defibrillator

- Daily symptomatic episodes

- A new and involved medication routine

- Constant medical appointments and tests

Although I am still at the very beginning of my journey with managing my heart disease, the last five months have not been easy. I am safe now and I have a supportive network of family, friends, and colleagues who are also on the journey with me. Some days this journey can be more challenging for them than for me because they are witnessing and hearing everything firsthand. While I still have a long road ahead through more surgeries and medical support to manage a disease that (unlike most) I have survived.

It is a good reminder that heart disease is not a generational disease; it can affect anyone and is just as life threatening as other diseases like cancer. The difference with heart disease is it can be well masked; you can feel and seem, on the outside, perfectly healthy - like James and I- but on the inside an episode can happen at any time, without warning, and can be fatal. In Australia 9000 people under the age of 55 will experience a heart attack each year, and 20% of people who die of heart disease are under the age of 65. My advice is, if you have concerns or have a family history of heart disease, get checked and make sure you are going for your yearly check-ups, because if I didn’t I might not have made it today to tell you my story.

Living with heart disease is not an easy journey for the patient or their families. To navigate it can feel very isolating, even when surrounded by people, and that you are just waiting for things to get worse. People try not to, but they do treat you differently and sometimes this is worse than living with the disease. While I have heart disease and have had a difficult journey thus far, because of James, they caught mine early and I have the best chance of living a relatively normal life with minimal restrictions; some for the better, like less caffeine! Sharing this story was not something I was sure I would ever do, but a few months after my surgery an incredibly wise person said to me “while it doesn’t feel like it, you have been given a gift, you survived and what are you going to do with that?” This resonated with me for weeks, trying to work out what they meant and that’s when I connected with Tanya Hall, the CEO of the Hearts4Heart foundation, who encouraged me to share my story.

A story that so many Australians are trying to navigate and the best way to support each other is through sharing. Hearts4Hearts foundation not only tries to support the patient through their journey with heart disease but helps support the families and their support networks. This was something really important to me as it wasn’t just me going through this journey: my partner, my parents, my extended family, and my support network were all on this journey with me. They understand the difficulties and hardships of living with or watching someone live with heart disease and support those individuals and their families with living a positive and fulfilled life. Through their education and advocacy programs they support and promote early detection to help people recognise symptoms early to reduce preventable deaths.

I know for me, through conversations I have had since connecting with the Hearts4Hearts foundation, I have been able to navigate the highs and lows of my disease and I am trying to live my life as healthily as I can. This connection has also given me the opportunity to share mine and James’ story through spreading awareness of heart disease like ours, which is relatively non-symptomatic and has a high fatality rate due to it being untreated but can easily be detected through a variety of tests.

This is Our Story!