My diagnosis with dilated cardiomyopathy: Gerry shares his story
Thursday 14 February 2019
Gerry Fogarty was enjoying life as a newly-married father-of-two when he received an unexpected diagnosis with dilated cardiomyopathy, a disease of the heart muscle, last year.
Gerry has shared his story about his diagnosis and life since below. We have included more information on dilated cardiomyopathy at the bottom of his story.
My diagnosis with dilated cardiomyopathy
My diagnosis with dilated cardiomyopathy was totally unexpected. I’d had no symptoms to speak of and it was picked up almost by accident, so it really blindsided me.
Early last year, I became ill with a virus and went and saw my GP. During his examination, he noticed I had a heart murmur. He thought the murmur was probably in relation to the current illness and would pass, but when I went back a week later it was still there. To be safe, the doctor sent me off to have it investigated a little further with an echocardiogram, which is an ultrasound of your heart. I wasn’t expecting anything worrying as I went in for the test and was busy planning the rest of my day as I got to the clinic.
The test showed I had an enlarged left heart, and I had to see a cardiologist then and there. He sent me off for more tests and after that, I was given the diagnosis of dilated cardiomyopathy.
Dilated cardiomyopathy is a condition where the heart becomes enlarged and can’t pump blood effectively. It usually starts in the left ventricle of the heart, which is one of the large chambers at the bottom. The muscle stretches and the heart becomes bigger than a normal sized heart.
I remember walking out of the cardiologist’s office that day in a daze, it didn’t really seem that it was possible given my age and lack of symptoms, so I went home and did what anyone would do - I went to the internet for answers to my questions. I learned quickly that you need to be careful where you go for medical information online.
There’s a lot of information out there that paints my condition as very negative and as the end of the line. That wasn’t what I wanted to read. I was 37 years old, a father and husband, it was very hard to take. My wife found it difficult as well, she was reading the same articles and resources as I was and overall it was painting a pretty damning prognosis.
For both of us, it was an incredibly tough time. We had no idea what the diagnosis would mean for our future, or where to go from there. When you suddenly discover your years might be more limited than you thought, it understandably turns your life upside down a bit.
My GP was a great support, he encouraged me to get in touch with the heart support service at the Royal Brisbane and Women’s Hospital. I did, and they were fantastic. I guess you could say I wasn’t their typical patient, given my age and lack of symptoms, but they were still incredibly supportive and gave me exactly the help I needed. The service provides support and rehabilitation for those following a significant cardiac event or diagnosis and going to see them was the beginning of a turnaround for me.
It took a while and plenty more reading to learn that a lot of that information online was not relevant to me and my situation, and I realised that maybe – hopefully - things aren’t so dire for me after all.
I changed cardiologists, and found the relationship with my new one a much better fit. He has a very positive and personal approach to treating me, rather than treating my condition, and overall he has a very optimistic view for not only my present, but my future as well.
As this condition can possibly have genetic links, my family members have all been screened and given the all clear. My two-year-old daughter will have to be checked every year from now on to make sure her heart is unaffected but right now she is doing just fine.
I’m on daily cardioprotective medication to help prevent excess strain on my heart. I have reasonably mild side effects from them – sometimes I feel a bit lightheaded or dizzy – but it’s not too problematic and doesn’t slow me down all that much.
I’ve also made a lot of lifestyle changes since the diagnosis. I make much better decisions about my diet and exercise and I’ve also cut down on drinking alcohol. I’ve joined a gym, which I love, and I’m cycling regularly again, which was something I’ve always enjoyed but hadn’t found much time for since becoming a Dad.
I don’t know what the future holds for me with this condition, but no one really knows their future. My cardiologist is optimistic, which in turn makes it easier for me to be too. Right now things are pretty good, I have a good tolerance to exercise and I’m able to be an active father to my daughter and step-daughter.
But I know this is a chronic disease and something that will require close attention for many years to come.
My advice to anyone else going through this would be to allow yourself the time to feel a bit flat. It’s normal to feel like you need support after your diagnosis, because you do and it’s something you deserve to get. Make sure you have a good GP and cardiologist and if you’re not happy with them or their approach, look for new ones. You’re going to be dealing with them for many years to come, so it’s important to trust them.
Above all, don’t believe everything you read on the internet! Dilated cardiomyopathy can affect people in different ways, everyone’s situation will be different. The internet doesn’t know you and certainly can’t give you a personally detailed assessment - listen to your doctor instead.
For now, I believe I’ve got a long road ahead of me, and I’m excited about what the future holds and ready to give it my best shot.
About dilated cardiomyopathy
Dilated cardiomyopathy is a disease of the heart muscle and usually starts in the heart’s left ventricle, or lower chamber. The ventricle dilates (stretches) and can’t pump blood as effectively as a normal heart can.
Some people experiencing dilated cardiomyopathy may not experience any symptoms, but for others it can be life threatening. It’s a common cause of heart failure and is most common in men aged 20 – 50.
Typical symptoms of dilated cardiomyopathy may include fatigue, shortness of breath, reduced ability to exercise, swelling in your legs, ankles and feet, chest pain and heat murmurs.
There is no definite figure for the number of people with dilated cardiomyopathy. However, studies suggest that around 1 in 2,500 people have the disease, although this may be an underestimate.
Anyone experiencing symptoms of dilated cardiomyopathy is advised to see a doctor immediately.