When we think of heart problems, we don’t often picture a young woman. But Anna Butler was in her 20s when she started experiencing crippling heart-health symptoms. A well-controlled heart condition she’d had since birth was suddenly playing up. Here, the 53-year-old recalls her worrying symptoms and decade-long struggle to be heard.
When I was born, I was what they called a blue baby.
Blood wasn't flowing through my body properly, so my skin had a bluish tinge. I cried incessantly and it was obvious there was something wrong.
Eventually, I was diagnosed with Tetralogy of Fallot, a complex condition involving 4 heart abnormalities.
I was too young for major surgery, so doctors performed a temporary procedure to improve blood flow to my lungs.
Then at age 5, when I was deemed strong enough, I had open heart surgery. We were told it worked. I was fixed. And it felt like it.
Tetralogy of Fallot is a rare condition that a person is born with. It involves 4 heart abnormalities that can limit the amount of oxygen your blood carries around your body.
As a young adult, I was fit and healthy. I went out dancing and did what most young adults do.
But by my late 20s, things went pear-shaped.
I started getting short of breath. My ability to exercise reduced and I struggled with things that should have been easy.
Doctors said I might have thyroid issues, chronic fatigue or depression. I didn't think it could be my heart because that was fixed – or so we'd been told when I was a child. Still, something wasn’t right.
It took more than a year of medical appointments and tests before I learned my heart wasn’t coping and I’d need one of the valves in it surgically replaced.
I was told my symptoms weren’t bad enough and that because my new heart valve would have a limited lifespan, it would be best to delay surgery as long as possible.
Although I protested and pleaded for surgery many times, I found myself learning to live with my symptoms. I got used to feeling dizzy and drained, and trying to catch my breath. My husband saw me get progressively worse. Eventually I stopped working. My savings and superannuation vanished. Then out of sheer boredom, I started my own copyrighting business so I could work around my needs.
I’ve learnt that it’s OK to get a second or third opinion if you feel you're not being taken seriously."
On my 37th birthday, 7 years after learning I’d need a new heart valve, I finally got it and the difference it made was massive.
After a brutal recovery, I was able to return to work full-time, hike up mountains with my husband and breathe properly again.
Throughout the whole experience, the worst part – at least mentally – was not being taken seriously in the health system. I had to jump through hoops, get tested for countless health conditions and put up with symptoms that got quite bad over many years before things got better.
From conversations I've had with many women, I know that problems like mine get dismissed often – labelled as 'she's anxious' or 'she's depressed'.
In health, it's hard because a lot of the data is built around males and women have traditionally been left out of medical research.
I’ve learnt that it’s OK to get a second or third opinion if you feel you're not being taken seriously. When it comes to your health, you really have to be your best advocate.
Knowledge of rare heart conditions has certainly improved, but we’ve still got a long way to go.
I know that I’m going to have to go through surgery again soon. I can feel my symptoms slowly returning and the valve I’ve got won’t last forever. But I’m not afraid to get things done. For me, it’s about quality of life.
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