I remember everyone had to glove and gown coming into the room. It was all very sterile. I remember feeling better, they try and get you out of bed and slowly exercising as quickly as possible. I was riding 10km on the exercise bike a few weeks after, just to build up my muscle. I was sharing the ward with Matthew, another boy a few years younger than me, he had a heart transplant just after me.
Because we’d come from Adelaide Mum and I were staying in a Ronald McDonald House. I was going back every day for a couple of tests, we stayed in Melbourne for about three months before we flew back home. I remember coming back to a really clean house. They had a cleaner through as everything had to be really sterile. I remember mum taking me back to school just to visit, I was still recovering but she took me to see friends and teachers.
They had asked if I wanted to stay back but I didn’t want too. I wanted to be with all my friends. I caught up pretty quickly, yet again at the hospital I’d done a bit of school work. Before the transplant I couldn’t play contact sports, I was out of breath, there wasn’t quality of life being in hospital for so long; then I just remember having the transplant and feeling so much better.
I could ride 10km on the exercise bike, I could go out with friends. My family never treated me any differently, because I had my brother at home (he’s two years older) rather than wrap me up in cotton wool they treated me like they treated him. There was only a couple of things they were very specific about, one was if I did go and get takeaway I had to get them to cook it fresh to avoid infection/bacteria.
You’re on the anti-rejection medicine during surgery and after surgery, they pump you full of meds, when you first come out of surgery you’re on steroid medication. All of a sudden you’ve put on ten-kilos, you’ve got a moon face. It didn’t take that long to get the medication weight off, back then I was probably on about 20-odd tablets a day and at the moment I’m down to 12. It’s a combination of anti-rejection drugs, blood pressure, and cholesterol tablets.
I take them morning and night, I think I knew because I felt better and that I’d been given a second chance, I just did everything I was told to do. I took my medication and didn’t think twice. I’ve been having medication since I was five anyway. We got the call on February 13, and I had the transplant just after midnight on February 14. I got my new heart on Valentine’s Day, when I was younger I use to say to people, “You got a chocolate heart and I got a real one”.
Back then they pretty much said to me it’s harder for a female that’s had a heart transplant to have children, it puts too much strain on your body combined with the effects of the medication. One of the doctors said it could come down to a decision between me and the baby, so I just got use to the idea of never having kids. I made peace from an early age, when they said you can’t and it would be detrimental to your health, I just went ‘Oh well I won’t do that then’. When people have asked me if I’m going to have kids, I usually just say I can’t because I’ve had a heart transplant.
I’ve never hidden the fact I’ve had a heart transplant, I’m pretty proud of what I’ve accomplished and that I got through it. I understand people have their ideas and views about donating, whether it be religious or just the fact I think people are uninformed. I think people think they don’t take care of your body when they’re taking organs out. I think because people don’t know the process and what happens, that’s why some people say they want to go whole.
A lot of my friends before me, never had to deal with it and never thought about it. I remember even my brother at one stage saying he didn’t want to be an organ donor and then this happens to me, and the first thing he does is say he wants to be a donor. If you don’t know anyone and it’s not close to you, you don’t think too much of it. You think there’s other people that will donate, but if everyone thinks like that, then no one does.
Financially this has had a massive toll on my life. Because even though I’ve had a heart transplant, I’m still healthy (at the moment) and can still work. As far as Centrelink and anyone is concerned if you earn over a certain amount you’re not entitled to anything. I pay over $200 a month on medicine to keep me alive because I had a transplant out of my control. At first my family, and now I, have done that for over 26 years.
When I was eleven they said I got an adult’s heart. We had heard it was a 22-year-old that died in a motorbike accident. I never found out for sure. Unfortunately, it’s more so the medication than the heart itself with regards to how long a transplant lasts. Medication can cause narrowing of the arteries and other issues – you’re more susceptible to getting cancers. I started having complications six years ago, I was living in Darwin at the time and I’d been out that night. Like everyone in their twenties and thirties, you go out with your friends and have a couple of drinks. I remember coming home and I had the typical heart attack symptoms, neck and chest pain, shoulder pain. I thought that doesn’t feel good and I felt really flat.
I ended up going back to work and then I started to get the pain again so I went and got it checked out and they found out I had a blockage. Since then I’ve pretty much, almost to the year, had a reoccurring blockage in my LAD; one of the main arteries in my heart. I’ve had check-ups every eight months, for the past 26 years, now I’m having the issues it’s become a bit more frequent.
I’ve had numerous stents, they do an angiogram and they insert a spring which opens up your artery. I’ve had balloons they inflate to open the artery, and medication to keep it open. Recently I had rotablation where they use a microscopic drill. Last year when they found the blockage they had to get a specialist from Sydney to come down and do the drilling, that’s when I started to think they can’t stent and balloon anymore. I felt like I was running out of time with this artery.