Lisa's congenital heart disease story

Back in 1971, Lisa’s parents were told there were no surgical options for her congenital heart disease. They were advised to take their daughter home, keep her calm, and prepare for the worst.

Incredibly Lisa defied the odds and made it to childhood, although much of her younger years were spent being chronically tired.

While other kids were playing and enjoying weekend sports, Lisa was dealing with the consequences of her heart defect, including experiencing a mild stroke when she was just six years old.

“At school, it was a struggle for both the teachers and for me - I was falling asleep a lot in class and I'd get very fatigued just walking to school. So I didn't have the most normal childhood, I struggled a lot,” says Lisa.

That was until the age of 12 when Lisa was fitted with a pacemaker after experiencing an episode of complete heart block – which occurs when the electrical signals from the upper chambers (atria) aren’t passing normally to the lower chambers (ventricles).

“Things were absolutely amazing after getting my pacemaker, I had so much energy and I could do so much more than I could before,” says Lisa.

“I will admit going into my teen years I did push things a little bit, as we all do, but I just felt so energetic and alive for the first time.”

Lisa was so encouraged by her newfound energy that she decided to pursue a career in the fitness industry, before going on to surprise everyone again by giving birth to two boys – even though she was told that pregnancy was not advisable due to her heart defect.

Unfortunately Lisa’s health once again declined in her 30s, when she experienced a series of heart attacks and a stroke, along with further diagnoses of dilated cardiomyopathy (DCM), aortic stenosis and atrial fibrillation.

In 2016, Lisa and her boys received the devastating news that she was in severe heart failure and would need to be under palliative care.

“It was horrible because it was now hitting me that after all I’d been through this was the end of my life,” says Lisa.

Lisa spent years bed bound, fatigued, and experiencing bouts of depression and loneliness.

Eventually it became too much, and Lisa decided to discuss her options with the voluntary assisted dying team.

During the process, Lisa was sent for further checks where it was discovered that her pacemaker wasn’t working properly. After having her pacemaker fixed, Lisa was finally able to leave palliative care in 2022 – a staggering six years after she first went in.

“I really was prepared to die – I still have a coffin sitting in my garage,” says Lisa.

“I admit I was angry and hurt about what happened, it was particularly traumatic for my kids. But I can’t keep looking back, I don’t want to. I’ve got a new life now.”

Post palliative care, Lisa has moved from Geelong to Melbourne to be closer to medical care. She is also working part-time for the first time since her stroke in 2010, enjoying gardening and spending time with friends, and has her focus set squarely on the future.

“I want to be around to see my boys get married and to be a grandma. I also want to go to Japan for my 55th birthday – although I don’t know if my cardiologist will let me,” laughs Lisa.

“I still get fatigued, which has been a massive part of my life, but I won’t let my heart disease set me back so much so that I don’t live my life.”