Joel portrait

Joel's story of heart transplantation

As Joel Seeto discovered, heart disease can affect anyone – male, female, old or young.

Aged just 17 Joel felt like any other fit, healthy teenage boy. When he wasn’t at school, he was playing football, surfing or socialising.

But his life changed overnight when he was diagnosed with hypertrophic cardiomyopathy (HCM) – a genetic heart condition that causes thickening of the heart walls, making it increasingly difficult for the heart to pump blood.

Joel in a surgical gown sits in a wheelchair outside of a hospital

Four years later he was on the waiting list for a heart transplant.

“Back when I first got diagnosed, I could go a day without thinking about it,” says Joel. “But when I started speaking with the transplant team it’s something I thought about every day…At that point, I freaked out a bit.”

HCM affects around one in every 500 people and is the leading cause of sudden cardiac death in children and young people. Most of us have heard stories of a sports star or athlete suddenly dying of heart failure, seemingly out of nowhere. In most instances, this is caused by HCM.

Unfortunately, HCM does not always have obvious symptoms so it can go undetected for years. For some people, the first symptom will be death.

Joel underwent his heart transplant in 2015 at St Vincent’s Hospital, Sydney.

Recovery was hard but Joel threw himself into rehab and within about six months was back to feeling relatively normal.

Joel recognises how lucky he was to discover he is living with HCM when he did. Joel shares his story and feelings of gratitude in the video below.

“Lots of people have the same condition as me but they don’t have any symptoms at all – even professional athletes,” says Joel. “I’m pretty lucky that nothing ever happened to me while I was playing.”

While HCM is usually an inherited disease, there was no history of HCM in any other members of Joel’s family, which further emphasises that heart disease does not discriminate. It can affect anyone, regardless of age, gender, physical fitness, or even family history.

Joel at the gym

Joel hopes that by speaking out and telling his story, he can encourage people to get tested and help prevent deaths caused by undetected heart conditions. He is passionate about raising awareness because, as Joel explains, “heart disease is the number one killer, but lots of the time it can be prevented.”

While Joel admits that having a heart transplant was incredibly challenging, he’s now enjoying life to the full. He’s working as a photographer and is back to surfing and playing touch footy. He says: I just can’t do anything too wild. And of course, I am now on immunosuppressant drugs for good now and undergo a full check-up twice a year. But other than that life is great now.”

Heart problems can affect anyone – your friends, your family – you never know.

You can help patients like Joel by supporting vital discoveries at the Victor Chang Cardiac Research Institute.

Acknowledgement of Country

The Victor Chang Cardiac Research Institute acknowledges the traditional custodians of the land, the Gadigal of the Eora nation, on which we meet, work, and discover.
Our Western Australian laboratories pay their respect to the Whadjuk Noongar who remain as the spiritual and cultural custodians of their land.

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