Mandy Beplate's 'card was marked' when she was in the womb, however she was only diagnosed with cardiomyopathy (heart muscle disease) last year and has since had a mini defibrillator inserted into her heart. This is her story, as told to Fiona Tyrrell
CARDIOMYOPATHY WAS a word I learned in 1990 when my mother died. Three months later, my father had a cardiac arrest and died. I was 16 and one of five children. We had to very quickly learn about heart disease and the difference between heart muscle disease and coronary disease.
I have since learned that cardiomyopathy runs in our family - my mom's brother has had a heart transplant and her sister later had a heart-related death. Eighteen years down the line, the term has slipped into the psyche of my family.
Throughout my life I have experienced the odd palpitation. I didn't think much of it. In my mid-20s I had a double vision episode for about 10 minutes. I later learned that what I had experienced was a transient ischemic attack (TIA). This is often referred to as a mini stroke.
I was living in Mexico city at the time and I just thought it was a reaction to high altitude.
About six years later, in 2004, I had a much more prolonged episode which lasted a couple of hours. I was confused and couldn't tell the time and had trouble with numbers.
Three weeks later, my sister died in a road traffic accident. She was 42. The inquest was inconclusive but it was possibly the result of an arrhythmia.
We were all advised to get tested for cardiomyopathy. I was tested and I was told that I had some type of abnormality in my heart and I needed to keep an eye on it. I had tests done every few years.
When I moved back to Ireland, my sister introduced me to Dr Deirdre Ward who heads up the centre for cardiovascular risk at Tallaght Hospital. I went to her and went through all the usual tests - ECG, echocardiogram and exercise tests. My results were borderline, but the results, combined with my family history, sounded the alarm bells for Ward.
She recommended that I get an implantable cardioverter defibrillator put into my heart. I was reluctant. Some members of my family had very negative experiences of the Irish health system and I was very nervous. However, I decided to go for it.
As it turned out, I had a bad episode 10 days after I had been to see Ward. It was much worse than anything I'd ever experienced before. I went into hospital and spent three weeks there.
First I went to St Vincent's to undergo a procedure called ablation where heart tissue is burnt to interrupt abnormal electrical signals. The procedure itself went well, but unfortunately during it both my lungs were punctured.
Then the defibrillator was implanted. It is about the size of a matchbox.
It is a very sophisticated gizmo. It is a battery box with a computer chip wired into my heart. It can read different type of rhythms. As a pacemaker it can treat slow heart beats and it also recognises when the heart rhythm is too fast and can deliver a shock internally.
The device has started pacing a few times - once I woke up in the night and was sure that someone had broken into the house. Thankfully, it has never administered the electric shock. I hear it is like getting kicked in the chest by a horse or hit by a golf ball.
It took a long time to get used to the battery. At first there was a lot of discomfort. It is like having a stone in your chest. No matter how hard I tried not to favour the other side of my body I suffered bad knock-on muscular-skeletal problems. At times I was in such pain I couldn't carry my handbag.
With the device, I can't go through airport security. I have to carry a card with the make and model of my device with me when I travel.
The battery has a life of five to seven years. It's only one year in, but already I'm not looking forward to getting it replaced.
Overall my experiences have been very good. I couldn't praise Dr Ward and the team at Tallaght highly enough.
My daughter and my sister refer to me as the bionic woman. I try not to focus too much on the battery around my daughter. I don't want her to be afraid. I want to give her the impression of security. As I child I was only vaguely aware that my mother had a pacemaker.
I've had to come to terms with my mortality. I am aware of the fragility of the human heart and the human body. It could happen in the next moment. To be honest, I wouldn't be nearly as bothered about it if it wasn't for my daughter. To deal with the fear, I try to encourage rational thoughts. Worrying about it is counter-productive.
Readers who would like to talk about their own health experience, good or bad, can contact this column at healthsupplement@irish-times.ie