When I was born, I got the all clear, they said everything was 100 per cent but when I was three-years-old, they found I’d had been born with a hole in my heart. We use to do a lot of family holidays as a kid; going camping, going to Lake Bonney or up to Queensland.
The only reason they found out was because I started to be short of breath. I wasn’t playing with other kids as much and not being very energetic or outgoing. Mum and Dad thought that wasn’t normal, that’s when they took me to the doctor thinking maybe something was wrong. I had a lot of doctors say there was nothing. It was an old family doctor with his glasses on, squinting and listening to my chest, that picked up I had a heart murmur.
They sent me to the Children’s Hospital in Adelaide and that’s when they discovered it. They said they would need to repair the hole but that didn’t happen until I was five-years-old. I went in for open heart surgery, they fixed the hole and inserted an artificial pace maker and artificial mitral valve. I don’t remember any of that, the only memory I have is because I’ve seen photos. I do remember though, on the hospital ward they had a murial of Mr Percival (Storm Boy).
The doctors said everything looked good. Before the operation I was in and out of hospital with issues but between six to 11-years-of-age, I was pretty much right, back to being a normal kid until the batteries in the pace maker ran out. I needed a routine pacemaker changeover and that’s when all the other issues happened.
While I was in hospital I caught MRSA (golden staff). By the time they found out that’s why I was getting sick instead of better, only 60 per cent of my heart muscles were working. The pacemaker is originally under your ribcage when you’re young and they move it up into your chest when you get older. It’s while they were doing the changeover, I got the infection. It spread and affected my heart muscle.
I was in hospital for eight months while they were trying to work out why I was sick and the infection was attacking my heart the entire time. I remember good things like Quintin, he was in hospital with me on the same ward. He’d order pizzas and they’d be a few of us eating them. We were the other side of Adelaide so it was hard for friends to come and visit but school friends would bring me big massive teddies, and talk about how lucky I was that I wasn’t in school. I did actually go to school in the hospital when I was feeling ok, I remember doing a little bit of work.
I was relieved when they finally found out why I was sick and that it wasn’t in my head. At that point I wasn’t eating and was anorexic because I was physically unable to. Your bodies way of helping you cope is to not remember things so I blocked out a lot. I remember a social worker talking to mum and dad and then dad talking to me. Because I was eleven, a lot of parents probably would’ve made the decision themselves and not really informed a child, whereas dad told me everything because I was mature for my age. He said this is what’s going on and if I didn’t get the transplant I’d die.
Afterwards, they said there was nothing more they could do for me. I remember getting sent home with an oxygen tank and feeling anxious. I was in bed at home and then I remember getting the phone call two weeks later. It was a Saturday. We were sent home with a pager and when it goes off the taxi is ready to pick you up and you go to the airport, that’s it. I remember sitting at the table with my brother and his best mate eating a salad sandwich and the pager went off and mum rung the number, they said get on the plane.
When you get told you need a transplant your living out of a suit case. You’re packed and ready to go Adelaide don’t do transplants so everyone from Adelaide has to go to Melbourne. I remember eating the salad sandwich and then it was all rush, rush. I don’t remember the flight or anything like that, the last thing I remember is having the Betadine bath prepping for surgery.
The difference between having a transplant as a child compared to an adult is when you’re a child you don’t think of waiting or anything other than, ‘I want to be better and playing with my friends’. That’s how I felt, ‘will this make me better?’ I thought yes. When you’re an adult you’re aware of the consequences and where the heart comes from. After my surgery, I spent a week in intensive care, I just remember the bath and mum who said she was going to be waiting.