Ray's story

I'm 72 years old, retired, have four children, divorced and live alone.

In May 2005 I considered myself to be fit for my age and in excellent health, lived an active life, walked most days and occasionally rode one of my motor bikes (I had a collection of 6 at the time). They have always been a passion. Sport was important in my life, playing squash at a high level as a teenager and till my 40's, also competitive touch football till 40 plus.

My career was at a peak, a senior executive with a State role in a large grocery company, at times long hours, hard committed work but still managing a reasonable work-life balance with quality time for the family. At the time my two youngest children were living at home. We were always able to plan at least one family holiday each year, either within Australia or overseas.

So back to May 2005 when my then wife and I departed for a European trip taking in Italy, The Czech Republic, Paris and London. All looking good at this stage.

The Italian leg was great, busy with some long days and walking. The last day on the Prague tour was a hot day and we spent many hours on our feet. I felt the heat badly and struggled to walk back to the hotel. Looking back, I didn't realise at the time that this was to be the start of a significant change in my life. Paris and London didn't seem to be unusually demanding, and then home and back to work.

Day-to-day life became a struggle and I always seem to be tired and often short of breath, and this flowed to my employment. Looking back, it was lucky for me that my company employed a part time medical doctor whom I knew very well. Sometime in July, I met the doctor in passing and he looked at me and said "You look terrible. Haven't you got over that jet lag yet!" He had previously sent me to a cardiologist because of consistent ectopic beats and to be fitted with a Holter Monitor for 24 hours.

Luckily he referred me to the cardiologist for a visit in August. After a number of tests including an echocardiogram, he called me in and informed me of bad news: I had cardiomyopathy. The only thing I knew about cardiomyopathy was that Fiona Coote had it and was our youngest heart transplant recipient in Australia. Did this mean I would need a heart transplant? The answer was No', as he informed me that in most cases it could be improved and controlled by medication. I had dilated cardiomyopathy (DCM), an ejection fraction (EF) of 25-35% and an enlarged heart.  I headed home to inform the family and with prescriptions for Dilatrend and Atacand.

The next few months were not great, the DCM did not seem to be improving, a hot summer was approaching and my body not handling the medication all that well. I fell in a heap and had to push myself through every day. To make it worse my family didn't understand the illness and just believed I had become lazy.

One day I was researching dilated cardiomyopathy on the internet and came across the Cardiomyopathy Association of Australia (CMAA) and there was a contact number to call. Up to this stage I had kept things close to my chest, hadn't even told my work colleagues or all of my friends and family, as I decided people may not understand. After some trepidation I called the number, which was answered by Janet George, who went on to explain about CMAA and its benefits to sufferers like me. Hey someone understands! Janet passed on Sue's number (the then state contact) and I later called Sue and I can't tell you how good it was to talk to someone who also had DCM and understood how I felt. She was so generous with her time, talking to me for over one and a half hours, I recall. From that contact I joined the CMAA. In December 2005 I attended my first meeting at The Mosman Club which was the Annual Christmas Luncheon and was so pleased to meet others who shared similar stories to mine.

By June 2006 my results had improved considerably. My EF was greater than 50% and my enlarged heart was in the low end of normal, allowing medication to be reduced a little. Some months later I noticed I was short of breath at times and tired. A subsequent visit to my cardiologist and an echocardiogram indicated my EF had dropped to 30-40% and he immediately increased my medication. It was decided to also fit a 24 hour Holter Monitor. When I returned the following day the results from the Monitor displayed a sustained episode of Ventricular Tachycardia (VT), enough to have me conveyed to The Mater Hospital by ambulance to receive 24 hour monitoring. After an unsuccessful attempt at 'ablation' the cardiologist, in September 2006, decided to implant an internal defibrillator (ICD). The good news is that in time, with medication and the implanted ICD, my EF has returned to 50% and heart size reduced to the low end of normal. After a settling period I have not experienced any further episodes of VT.

The whole chapter took its toll over a three-year period as my work was affected, forcing an earlier than planned retirement. It also affected my marriage, which broke down in late 2008. I look back at the difficulty I had dealing with cardiomyopathy and having family understanding how it affected me at the time. It was frustrating and I struggled many days, but luckily this was picked up by my GP, who suggested that I undertake some counselling. This I found highly beneficial and would recommend it to others in a similar situation. It wasn't a time to look back, as that life had changed forever. So it was time to move on and plan the next chapter.

One of the common threads through all this, from 2006 till now, was the support, knowledge and friendship from the CMAA. Following the first visit to the Mosman lunch in 2005, I have continued to attend on the last Friday of the month, and although a small group, I find it so important to be there.

Knowledge is everything and I'm fortunate to have a wonderful cardiologist looking after me, but adding to this has been the support and information from the CMAA which has been invaluable. I knew nothing of cardiomyopathy when I was diagnosed. Now, through the informative newsletter, Mosman lunches, some earlier local group meetings and guest speakers at AGM's, I am so much more informed. I have been fortunate to attend a number of local CMAA meetings with first class speakers such as Prof Anne Keogh from the Victor Chang Cardiac Research Institute, Anne Sullivan, in charge of a community-based cardiac rehabilitation service, a very informed pharmacist, who was so helpful with the medications we encounter, and many more I won't list.

In July 2013 my ICD was replaced and a suspect lead disconnected and a new one added in parallel with the hope that it could last up to 9 years. I'm so used to having an ICD, it's just part of my life now and I rarely even refer to it.

The good news is that although I have cardiomyopathy it is controlled sufficiently through medication and an ICD for me to live a 'normal' life. I've continued to travel and in 2010 I travelled through Africa on safari spending 4 nights in Dubai on the way home. I have recently returned from a 16 day tour through Vietnam and 7 days in Hong Kong, this time travelling with a lady friend Julie.  I met Julie in 2012 and soon realised we shared common interests in travel, dining out, movies, family events and each others company.  Fortunately, we meet most days and her company, friendship and support are very much a positive in my life.


I believe I'm fortunate to have progressed through some difficult times and now am able to live a happy and healthy life that in part I owe to the CMAA and my fellow members.

Postal address: PO Box 2006, Surrey Hills,
Victoria 3127, Australia

36 091 171 470