Patient Story:

Daniel's Heart Transplant

Daniel was born with a heart condition that meant he needed a heart transplant at the age of 14.  At 18 a donor was found and thanks to his operation in 2012, Daniel now has a new lease on life.  He sent us this story in February 2013.

My name is Daniel and I was diagnosed with Cardiomyopathy when I was two weeks old. I was put under the care of Dr K C Lau and I was in Edgar Stephen ward at The Children’s Hospital at Westmead for 6 weeks where my condition was stabilised with medication.

I visited The Children’s Hospital at Westmead for regular check-ups adjusting my medications to suit my height and weight. I had a normal childhood, doing anything I wanted to do. At the age of 14 my energy tolerance had decreased and not long after we received a call from my cardiologist Dr Lau to discuss my last echocardiogram (cardiac ultrasound or “echo”). A discussion was had with my parents and I and we were told that the Cardiomyopathy was causing pulmonary hypertension which is a high blood pressure in the blood vessels of my lungs. My parents and I were then told I would be in need of a cardiac transplant.

This came as a massive shock to both my parents and I as I was hardly ever in hospital as a child. I was transferred into the care of Dr Philip Roberts who looks after all heart transplant patients to discuss my long-term treatment options, and as well the need of a cardiac catheter to measure the pressures in my lungs. A long discussion was had with Dr Roberts about the long term treatment of a Cardiomyopathy such as mine. Dr Roberts explained that in the first instance that it would be important to clarify the amount of pulmonary hypertension in my lungs. Dr Roberts also explained a lot about cardiac transplantation, including donor availability, immuno-suppressing drugs and also the issues of rejection and infection.

As heart and lung transplants aren’t performed at The Children’s Hospital at Westmead, my parents and I thought we might have to go to the Children’s Hospital in Melbourne, but as I was nearly 16 and my height and weight were adequate, I was referred to St Vincent’s Hospital in Sydney as an adult patient. This was a massive relief to my family and I as if the transplant was performed at Melbourne this would have meant relocation for my family and I for 3 to 6 months and as I have three other siblings all attending school it would have been really difficult.

After a number of tests and being put on a medication to help stabilize the hypertension in my lungs I was put on the waiting list for a heart transplant. I remained on the waiting list for 3 months and in that time I became quiet ill. In May 2012 I went into The Children’s Hospital at Westmead to check the pressures in my lungs. The doctors found near systemic pressures and they decided to start a medication to try to decrease the amount of pulmonary hypertension in my lungs. After a couple of days with little improvement the decision was made to put me in the ICU unit as my heart function was decreasing and fluid was building up around my lungs. The fluid was drained and we were told that draining it could encourage the fluid to return fast, and with such high pressures in my lungs I was no longer a candidate for a heart transplant.

The next day there was no improvement and the fluid returned and a final decision was made to transfer me to St Vincent’s Hospital for a LVAD (heart pump) to improve the function of my heart and lower the pulmonary hypertension in my lungs. I was very scared about having the heart pump implanted as I knew the daily requirements needed to maintain the heart pump as it functions on external batteries and a computer, plus daily dressings were needed. But I knew this was the only option for me to get well and have a cardiac transplant. The operation was performed on the 30th of May 2012. I made a full recovery and lived with the heart pump for 6 months; this gave me much better quality of life. I was feeling so good that I started my 1st year apprenticeship with my Dad as a heavy vehicle mechanic working 38 hours a week.

On the 6th of December my Dad and I were in the shed working, at 10:30pm my Dad’s phone rang and he answered and it was my transplant coordinator from St Vincent’s. I knew exactly what she was calling for and I ran as fast as I could to the house to inform my mum and my family the news. I quickly packed my bag, grabbed my current medications and left to go to the hospital. This was the most exciting news for my family and I. We arrived at St Vincent’s at 11:30pm and went into emergency department. I had some tests done and was taken into theatre at 7.00am the next morning, I woke up the following day and was on an absolute high and have been ever since the phone call! I had a speedy recovery and was discharged 8 days later. I have never felt better and for the first time in 6 months I haven’t been incapacitated by mechanical pumps, IV infusions and now have my full independence back.

My wish is that all heart and lung children and adults in need of transplant have the opportunity to experience this gracious gift. Thank you to my beautiful donor and donor family for granting me this opportunity, thank you to my loved ones and a big thank you the team at The Children’s Hospital at Westmead and St Vincent’s Hospital and everyone behind the scenes. Without your ongoing care I would not be here today to tell my story. Today I can now look forward to my future with my new heart.