Saved from death by a heart in a box

At first it was a tickle at the back of my throat. Then it became a cough and finally, when I thought I might have to do something about it, it had already become a bark.

“It’s a sign I’m getting old,” I joked to Mum, shivering as I walked into her place.

I’d been travelling the world off and on for seven years and thought this was just a bad cold I’d picked up during a stay in Croatia. “A few weeks at home and I’ll be fine,” I insisted, glad to be back in Perth, Western Australia.

But a month later I still felt rough. “I’ll go to the doc if it doesn’t go in the next couple of days,” I told Mum, but the next day my stomach was swollen and sore. It grew worse until I was in agony and could hardly breathe.

Mum took one look at me and decided she wasn’t going to listen to my protests any more. “No messing, we’re going straight to hospital,” she insisted, bundling me into the car.

I was admitted to Charles Gairdner Hospital where medics ran a series of tests and hooked me up to myriad machines.

The doctor looked serious when he came back with my results. “You’ve got a heart murmur,” he said as fear rushed through me. I’d been expecting a suspected appendicitis or stomach flu – certainly not this. Mum squeezed my hand as I was taken for an ECG – a test that measures the electrical activity of the heart. It showed an abnormal heart rhythm and a chest X-ray revealed that my heart was enlarged.

“I can’t believe this,” Mum gasped. Neither could I. How could what I thought was a bad cold be a heart problem? I was only 28, fit and healthy with plans to become a teacher and see even more of the world.

Then the doctor mentioned that the condition could have been sparked by a virus attacking the heart. Immediately I thought of my lingering Croatian cold. “That could be the cause,” my doctor nodded.

“Thank goodness you were here when this happened,” Mum said. “You could have been alone, overseas.” I grabbed her hand, grateful she’d insisted on bringing me in.

Luckily, I didn’t have to stay in hospital. The doctor prescribed a four-week course of medication and told me to rest. I soon felt better, and was even well enough to go back to college – I was taking a post-graduate diploma in education at Curtin University, Perth.

Three weeks of tests

I was rushed back to hospital before being transferred to the Royal Perth Hospital’s advanced heart failure team in the coronary care unit. Of course, I was worried but I thought a change in medication would sort things out.

After three weeks of tests my specialist told me my condition had significantly worsened. “One of your heart valves is not working properly, the rhythm is dangerously irregular and the heart is not pumping blood around your body the way it should,” he said.

The doctor also mentioned going on the heart transplant list. I was stunned. I didn’t think I was that sick. Mum looked terrified but sat by my side holding my hand tightly. “OK, this is really serious now,” I thought.

I needed surgery to implant a pacemaker-defibrillator in my chest. It would be able to detect a rapid heartbeat, and try to convert an abnormal rhythm back to normal by delivering an electrical shock to my heart. It would also restart my heart if it stopped. I should have been absolutely terrified, but I had faith in my doctors, and new medication helped too.

I made a quick recovery and was taken off the heart transplant list and discharged. Within two months of the surgery, I felt well, but my doctors wanted to do a set of medical tests to check my overall health, fitness, and blood pressure. They insisted on getting my full medical profile for matching in case I required a transplant. I was sure they were just going through the motions though.

“I can’t be as sick as they say I am,” I told friends and family confidently. “I feel great.”

I was determined to get on with my life, so I went back to college and forgot about the transplant. And then one evening at home, planning an early night, I went to the bathroom. Stepping out in the hall, I felt light-headed and as if all the energy had suddenly drained out of my body. The walls seemed to be closing in on me, and I managed to call out for Mum before everything went black...

My heart rate was skyrocketing

The next thing I knew I was coming round on the bathroom floor. My stepdad Iraj was comforting me while Mum called for an ambulance. I guessed my heart rhythm had spiked and plunged, sending me unconscious, and my pacemaker-defibrillator had shocked me back awake. I opened my mouth to reassure Iraj that I was fine now, but his face was blurry and my eyes were rolling back in my head.

My eyes snapped open and I saw Iraj looking terrified, and calling my name, trying to bring me round. Luckily the paramedics arrived. They hooked me up to a machine that showed my heart rate skyrocketing. I passed out once more.

Coming to, my heart rate shot up. Suddenly I felt a sharp pain in my chest. It was my life-saving device sending a jolt of electricity through my heart, forcing it to contract and pump again while I was awake. I screamed in pain and terror as I was stretchered into the ambulance and rushed to hospital.

Doctors battled to control my condition and finally, stabilised, I was kept in hospital overnight. I was grateful to be discharged the next day but was back again within 24 hours, struggling to breathe.

“You’re back on the transplant list,” my doctor insisted. “We don’t know how long it will take to get a donor organ and we’ve got to keep you going until then so I think we should look at an artificial heart pump.”

That’s why I readily agreed to undergo an eight-hour-long, open-heart surgery to implant my mechanical heart pump. It was connected to an external lead that attached to a battery providing the power to keep me alive. My doctor told me the pump worked for 90 per cent of patients with my condition. But I got worse.

My lungs filled with two litres of fluid and I had to be repeatedly put under anaesthetic so my heart could be shocked back to a normal rhythm. Once it took six attempts.

Walking 10 steps exhausted me. I was slowly dying and I was terrified. Each day I wondered how I’d get through the next 24 hours. Normally positive, I was slowly giving up hope.

“A heart will become available,” Mum kept reassuring me. But she was as scared as I was. The one positive thing was that thanks to a new invention I had a better chance of getting a heart. The hospital had the TransMedics Organ Care System (OCS) and all the doctors and nurses were really excited about it.

Normally, donor organs were packed in ice and transported in what was basically a cool box, like the one you’d use for a picnic. But the organs deteriorated quickly. And Australia is a big country; hearts could have to travel long distances to the patients who need them.

“A heart flown from any further away than Adelaide or Alice Springs, which would take about three and half hours, won’t survive to be used in Perth,” a doctor told me. “But an organ placed in the OCS is kept beating with transfused donor blood for up to eight hours, just like a living heart.”

The box opened up my donor pool

It sounded like science fiction – a heart beating in a box. But it opened up most of Australia as a donor pool, giving me more chance of receiving one. All I had to do was stay alive long enough but each day I was getting sicker. Soon I was virtually bedridden, too weak to move.

“What must they be going through?” I wondered tearfully. It was incredible that people could be so giving to a stranger.

Mum, my stepdad and my big brother Terrance were there when I came round. I burst into tears, relieved I’d made it. Pain sliced through my chest but the painkillers helped, as did the knowledge that now I had a chance to live. “I’m just so happy,” Mum cried, holding me. “You’re going to be OK.”

The doctors were pleased with how the operation had gone. “You’re here because of the OCS,” one of them said. “You’re the first person in the Southern Hemisphere to benefit from it.”

I was shocked. My heart had probably come from interstate. With it beating inside me, I felt strong, and five days after the op I was walking.