Tony

Cardiomyopathy

An incredible journey: my heart transplant experience

Only one year after the first heart transplant was performed in Australia, Tony travelled with his wife to Sydney from Auckland to have one himself. 32 years later, Tony is still enjoying life with his new heart. This is his story.

I was diagnosed with cardiomyopathy after suffering a serious electric shock. Initially this was controlled by medication, later a pacemaker and eventually a heart transplant.

Christmas of 1985 was a bit of a blur. My wife and I had just been told I would need a heart transplant. It was not something we had really heard much about and it took a while to sink in. In fact, I don’t know that you can truly comprehend just what lies ahead. We were very fortunate to have the opportunity to meet with a couple of people who had recently returned from Sydney with heart transplants. That was very encouraging!

By Easter 1986 I was very unwell. I had spent a lot of time in hospital since January and the time had come to travel to Australia for my heart transplant. So late April I travelled by ambulance from Greenlane Hospital to Auckland Airport, accompanied by my wife Catherine and nurse Kath. Kath farewelled us at the airport and I was wheelchaired onto the plane. In Sydney we were met by another ambulance and transported to St Vincent’s Hospital in Darlinghurst, Sydney.

Although I had already undertaken a barrage of tests prior to my departure for Sydney, I spent the first week in St Vincent’s undergoing further tests. During this time I was also fortunate to meet more transplant recipients. The opportunity to meet with others who have gone through this experience is of great value. Just seeing someone else doing so well post-transplant gave us a lot of hope.

A long wait

There followed a very long 10-week wait for a donor heart. During that time we stayed in a nearby hotel and attended outpatients regularly. After a few weeks, I was put on “standby” while a donor heart was assessed. But it was decided it was a better match for another patient.

Those 10 weeks was the longest of my life. I think you move from being nervous about the operation to eagerly longing for it to happen. Life was in limbo just waiting. I think if I could have been at home with some sort of normal routine going on around me, it would have been easier. But being away from home, family and support was hard, and the waiting seemed to go on forever. I was very lethargic by this time and not really doing much at all.

Not long after we arrived in Sydney, a documentary following the lives of two transplant recipients, one whom died and one who survived, was shown on TV and this was a real eye opener for us. It gave us some insight as to what was to come and the amazing gift I was about to receive.

At the age of 27, on Friday 11 July 1986 I was finally called into St Vincent’s Hospital to be prepared for my transplant. We were elated the waiting was over and had so many mixed emotions as to what was about to happen. I was taken down to theatre about 9pm and it was to be a long night for Catherine and her mum, who saw the donor heart arriving at St Vincent’s about 1am. After a few more hours they could see me through a window in recovery before heading back to the hotel at 5am.

A successful transplant

In the early hours of 12 July 1986 I had become the 50th recipient of a heart transplant in Australia. My donor was a 38-year-old woman from Newcastle, north of Sydney. We are eternally grateful to her family for their amazing gift of life.

One of my fears before the operation was of being intubated and in my subconscious state I was fighting the ventilator, so I was kept sedated until Sunday morning, at which time an oxygen mask was placed on my face and apparently I immediately ripped it off!

There was an immediate change in my colour and each day I felt stronger. While I was still sedated, the surgeon had told Catherine that I suffered a stroke when I was disconnected from the heart by-pass machine. It was expected that I would walk again but it could take some months. I had left-side paralysis and struggled with basic tasks such as feeding myself. With sheer determination I worked very hard at physiotherapy and 17 days later I walked out of the hospital, albeit limping.

We were then accommodated in the “transplant flats” near the hospital, along with other recipient families. Catherine’s mum who had been with us for three months, travelled home and my mum came to visit. Soon after my brother and his wife arrived to celebrate my 28th birthday.

Fighting rejection

I attended outpatients regularly for blood tests and biopsies. I experienced mild to moderate rejection in those early days. During one biopsy my left lung was punctured and I was again admitted to hospital for a few days.

During our stay in Sydney we were part of a very special “transplant club”. We met together with other recipient families for support and had a lot of fun. One of the recipients, Billy Lee owned a Chinese restaurant and often hosted us for a special dinner together. Another special person who was a big part of our club was head nurse Rosina who adopted us all like family. All the staff were very supportive and caring. We met some wonderful people and made some life-long friends.

We spent a lot of time post op walking all around Sydney and enjoying the sights. I had an incredible feeling of renewed energy after so long of not being able to walk very far at all. It was such a good feeling to be enjoying some normality. Life had only existed inside those hospital walls for so long. As time went by, we eagerly looked forward to returning to New Zealand and finally that day arrived in November 1986. After 6 months we were finally going home with a brighter future.

Coming home

Life slowly got back to normal and in the new year I returned to work. It was great to be home, back with family and friends and under the care of the team at Greenlane Hospital once more. Every few months we would get together with other transplant recipients. A group of five of us, along with our wives, would meet for dinner and catch up. Sadly I am now the only one of the five alive. Many of the people we came to know well in Sydney have also passed away, while others continue to do well.

32 years on, I have been very fortunate to have enjoyed pretty good health and really appreciate the special gift I have received.

I am very grateful to the medical teams at Greenlane and St Vincent’s Hospitals for their wonderful care, and to my mother-in-law for all the time and support she gave us in Sydney. It was especially good for Catherine to have someone there to support her. And of course, my heartfelt thanks to my wife for all her support, love and care. She was my rock!

Tony van Veen

Shared March 2019