Hi I’m Ray. I was diagnosed with Dilated Cardiomyopathy in 2008, aged 66.  My wife and I have two children and 4 grandchildren, and for years, with our son, we have been restoring our terrace house in Melbourne and a run-down cottage in the country. Prior to my diagnosis, my wife and I ran tours of Italy. Our last tour was in 2009 when I found myself struggling on the final leg, unable to get through each day without a rest.

Since my diagnosis, I have been very involved with my grandchildren, have been producing a regular newsletter for our local community and have been invested in the restoration of our cottage and home. I manage my days with frequent rest periods which are essential to maintain focus and energy.  In more recent years in addition to regular naps, I find a cup of weak cocoa and 2 ginger nut biscuits keeps me going!  For exercise I walk indoors at home as floorboards are easier on the feet.  I lift dumb-bells up and down as I walk.

I am grateful to my extraordinary doctors. I’ve enjoyed 17 years post diagnosis so far, helped along by 2 defibrillators and 3 pacemakers.  

How has cardiomyopathy impacted your relationships (partner/family/friends?)

I am much slower to respond to questions, which is frustrating for my wife. I avoid meetings and social situations where I need to stand in the heat. I also avoid evening functions, although dinner with friends is important. We prefer to have lunch with family rather than dinner.

How has / can a patient-support group assist?

When I was first diagnosed, it was important for me to witness other people with Cardiomyopathy living an active and fulfilling life.  I have also learned through support groups how important it is to provide feedback to your treating doctor/cardiologist.

What led to your diagnosis? 

Shortness of breath. Initially my GP diagnosed me with a bacterial infection and prescribed antibiotics. I had been prescribed these before but had a gut feeling it was not an infection.  Finally, I was referred to a cardiologist and by the time I got there, I was panting. I was immediately admitted to hospital and overnight, a kilogram of fluid was drained.

How does cardiomyopathy impact your life?

I need to have frequent rests for both physical and mental activity to be worthwhile, (eg. I lie flat on my back for short rests and have a one-hour sleep after lunch). These rest periods increase with a decreasing EF.

Having lived with cardiomyopathy for some time, what is something you’d like to pass on to someone more recently diagnosed?

Listen to your body.  If you think a medication is causing side-effects, share this with your doctor.  Your doctor relies on what you tell them and may occasionally have to change medication accordingly. Do expect some fatigue during hot weather. Air-conditioning is essential.

At home I have a blood pressure monitor which downloads to my computer and a simple, inexpensive oximeter which reads my oxygen levels.