Patient Educator, Pumping Marvellous
In 2016, Daniel suffered a dilated cardiomyopathy, with severe heart failure. Peer support groups have helped him get back on his feet. Heart failure ‘is not a death sentence,’ he says.
A sudden drop in cardiovascular health
It started in August 2012. I was 36 years old and an electrician. I kept myself fit with boxing, running and football, so I knew something wasn’t right when I got out of breath just moving my tool box. The doctor kept saying it was stress and gave me medication, but it steadily got worse from there. I was rushed into casualty three times, with what I thought were heart attacks (but were severe panic attacks), and the ECGs didn’t find anything.
Just a few days later, I collapsed at my mum’s house with multiple organ failure, dilated cardiomyopathy and quite severe heart failure caused by a virus. Multiple blood tests, a CAT scan and a right heart catheter helped diagnose my condition. I was put on the transplant list. I was in complete shock.
Patients need to know that heart failure is not a death sentence.
Over the next three weeks, the excellent multidisciplinary team stabilised my condition and I was sent home. In 2016, after three years of waiting, new medication took me off the transplant list, hopefully for good.
Heart failure doesn’t mean the end for patients
Patients need to know that heart failure is not a death sentence. You can lead a fairly normal life if you are efficiently diagnosed and then given the right information and tools to understand your condition.
Peer support groups have been the best thing for me. I thought I was alone but finding people my own age to ask questions helped me the most. It takes more than one conversation to understand what you are going to be living with. I’m still learning, so that support is invaluable.
Heart failure is too often misdiagnosed in younger people
It’s a very common story in our closed group that GPs too often misdiagnose heart failure in younger people – with serious consequences. We advocate a simple blood test, which is a great tool for diagnosis of heart failure. Not everywhere is set up to do the test but it could give people a second shot at life. For me it’s now about spending as much time possible with my sons– they’re the biggest thing in my life.