I was fit, healthy and a star marathon runner until I suffered a near-fatal heart episode at 45 and never ran again. This is what I need you to know

An Australian mother was fitter than ever and regularly ran 100km marathons before a rare heart condition left her unable to run.

Rachel Allworth, from Sydney, started running in 2012 and quickly became hooked. She won events and lost 20 kilos in the process.

She also quit her job as a teacher to become a running coach. Rachel’s tokens – after friends and acquaintances had contacted them and wanted to adopt her passion.

But one day in March 2020, the mother of two would set off as she always did, completely unaware that this would be the last time.

During that run, Rachel suffered a life-threatening heart arrhythmia caused by a rare heart disease. She now lives on blood thinners and a defibrillator implant to keep her heart rate and circulation regular.

The morning everything changed was on the cusp of lockdown in Sydney. Rachel was working out in the park with a trainer and some friends when a strange twist happened.

‘We were doing little sprints to finish and I started to get out of breath. “I couldn’t breathe properly and was a bit dizzy,” she said.

‘Because I was super fit, everyone there and the trainer wrote it off as a bit of an anxious day because of the state of the world.’

Rachel rested for a while and started to feel better, but when she got up to leave, things got even worse.

“Suddenly there was an overwhelming feeling of pressure on my chest and it was very difficult to breathe,” she said. ‘It was like something was pushing down. It was a very strange feeling, not pain but pressure.’

Rachel’s training buddy, who was also a nurse, tried to calm her down and suspected she was having a panic attack before offering to drive her home.

“As I walked through the door, I felt it come back again, the same feeling, but a hundred times worse,” she said.

‘I was throwing up, I had diarrhea, it was pretty extreme, but the whole time I was thinking to myself, “Oh God, I’m really sick, I have a really bad virus. This is horrible, I haven’t had anything before.” felt so sick,” she said.

‘I never thought it was a heart problem. I had no signs leading up, not that I knew of.”

Her husband, Michael, was shocked as soon as he saw Rachel, as her face was “grey.” He immediately called an ambulance and within 10 minutes the ambulance crew was on site.

‘They connected me to an IV and measured my heart rate. Their monitor showed 266 beats per minute and it stayed there. They call it a conscious VT, a ventricular tachycardia,” she said.

Paramedics administered medication to ‘reset’ Rachel’s heart and had a defibrillator on standby in case they needed to get the heart back into rhythm.

At no time did she feel like her life was in danger, even as she was rushed through the emergency room.

‘I thought all the time that I was really sick. It didn’t register. “I think it was scarier for everyone around me than it was for me,” she said.

‘The doctor said to me, ‘You are our first priority in this hospital. You are very lucky that your husband called the ambulance when he did. Hearts cannot last.’ for more than 10 minutes at that rate you were very close to cardiac arrest.”

Fortunately, the defibrillator was not needed and Rachel was taken for an electrophysiological (EP) study to determine the cause of the problem.

When she came out of her “anesthetic haze,” she was told she had arrhythmogenic right ventricular cardiomyopathy (ARVC), a disease of the heart muscle that causes life-threatening arrhythmia.

Rachel was told she needed an implantable cardioverter defibrillator in her chest to maintain a normal heart rate and that she could only do minimal exercises. Running was out of the question.

Not being able to run was a huge blow for Rachel, who took up the sport twelve years ago and excelled at it. She and her sister took part in a four-week weight loss fitness challenge, part of which included a 1km non-stop exercise.

Neither could do it at the start, but their “stubborn sibling rivalry” saw them complete the mile by the end and Rachel was inspired to take part in a local fun run.

“I was on my way home when a friend called me and said, ‘Where are you? They’re doing the presentations and you won! You were first in your age group!'” she said.

“It was like a switch went off and I thought, what else can I do?” You know I’ve never been a runner. I hated running in high school.”

Rachel got stronger over the years, competing in more running events and even losing a whopping 20kg just by taking up the sport.

She began completing marathons and helping friends start and enjoy running, which led to her quitting her teaching job to become a full-time running coach.

In late 2022, she ran a 100km marathon along Victoria’s Great Ocean Road, which turned out to be her last before her cardiac arrhythmia.

‘I felt really good the whole way, it sounds crazy, but I had trained for it. I remember looking at the beautiful views and thinking, “This is spectacular, I’m so lucky to be doing this,” Rachel said.

“A lot of times when you’re competing in events you’re in pain or it takes a long time and you don’t absorb it, you just try to get to the finish line, but that day in particular I really noticed everything and had a great run.”

Rachel’s extreme running hobby was thought to have caused her ARVC and she is now limited to light exercise.

She enjoys reformer pilates and walking and continues to coach running online through Rachel’s Runners.

The mother wants everyone to check their heart as heart disease is the leading cause of death in Australia.

“There are so many different types of heart disease that you’ve never heard of, and be very careful of symptoms that may not seem particularly normal,” she said.

‘You have to be in tune with your body and ask your doctor. If you’re not sure, do an ECG.’

Heart research Australia is currently running its REDFEB campaign, aimed at raising awareness about heart health and raising much-needed funds for research.