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Patient Story: James from Sydney shares his experience with heart valve disease

10 March 2015

James 3  James 1

An active father of three young children, James’ diagnosis of heart valve disease after visiting his GP with a niggling chest infection, came as a huge shock.

‘I felt cheated, annoyed and angry. Throughout my life, I have tried to maintain a fit and healthy lifestyle running half marathons and ocean swimming. Working in medical education/communication, I was surrounded by people who didn’t look after themselves and I worried for their health – all while I was at risk and had absolutely no idea.’

Just prior to diagnosis, James had a chest infection that wouldn’t go away. It went on for a few weeks before he decided to see his GP. “I was doing a lot of swimming at the time and still able to train, but the chest infection and coughing became painful. It got the better of me so I visited the GP on a Friday. As I was a 37 year old man complaining of chest pain, the GP referred me for an ECG [heart test] the next day. The next Monday I received a call from the Cardiologist who asked me to come straight in.”

Initially, James was diagnosed with a ‘right bundle branch block’ which is a defect in the heart’s electrical conduction system.  He was referred to another specialist for a follow-up ECG and echo-cardiogram. “During the second round of tests, the specialist detected a more serious problem with my aortic valve, which was bicuspid and not operating properly. I was sent for an aortic angiogram [test] and it was confirmed. My dilation was around 49/50mm which is more than twice the size of a normal heart valve. My heart was failing but I wasn’t experiencing symptoms to help explain why.”

The diagnosis and urgent care required took a physical and emotional toll on James. “It was my day job to know about health conditions and educate people on their treatment options. All of sudden I was confronted with knowing I had heart valve disease, probably since I was a baby, yet had no idea about what to expect. Those few words from my doctor changed the way I looked at my body and my health. I went in for a chest infection!”

James’ specialist advised that he would need surgery. “I questioned, ‘when I am 65?’, even then I had a preconceived idea that heart disease and surgery was for old people.  The doctor looked surprised and indicated intervention would be required within six months. The battle with my head was as active as the battle with my heart, so I spoke with a psychologist which helped get my head around it all.”

Within weeks, James was preparing to receive heart valve surgery. “It was only a few weeks following my diagnosis that I began to realise how lucky I was. My condition had been detected whereas most people with heart valve disease don’t know and simply keel over and die. I was optimistic and determined to do whatever it took to correct it.”

Heart valve surgery involves the diseased heart valve being replaced by a prosthetic or artificial heart valve which works in the same way.  “In hindsight, whilst the treatment was traumatic my active recovery meant I was out of hospital in 10 days and back to work and swimming again within weeks. I wasn’t experiencing symptoms prior to the surgery however after the procedure I certainly noticed I had more energy. I now feel like I am an equal again, as fit and healthy as those around me.”

James’ advises others considering heart valve treatment; “don’t hang around, just get it done. The fitter and healthier you are going into it, the better your recovery. And those who are over 35 years old and believe they are healthy or that nothing is wrong, get a heart check every year or two. I did and now I am the luckiest man alive.”

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