Patient Perspectives

Ian's story

When Ian, a self-proclaimed sports junkie, was diagnosed with obstructive hypertrophic cardiomyopathy (HCM), he refused to let the limitations of his condition bring him down. Instead of agonizing over what he could no longer do, he adapted his lifestyle and physical activities to ones that were safe but still allowed him a sense of freedom and control. Learn how Ian’s journey with HCM has been, and how he still manages to live every day to the fullest.

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Video Transcript


When I was about 40, my health started to deteriorate and I was diagnosed with having a form of asthma and then I was putting out some chairs to do with the Remembrance Sunday. 

I was struggling just picking up two chairs and moving them. I was getting out of breath. I was getting sweaty. And I just couldn't understand why, because my chest was clear. 

That night I was watching TV with my wife. One of her favorite programs is an ambulance emergency type program.

One of the guys that they concentrated on had asthma. So it made my ears prick up a little bit. And they put a mask on him, put him into the ambulance, and they said that the guy had an underlying heart condition and unfortunately, he died that night. So, my wife and I looked at each other and thought, Crikey, that sounds a bit like what's going on today.

So, I arranged to see my GP the next day, and he got an appointment that day with the hospital. 

And then that's when they confirmed that I had hypertrophic obstructive cardiomyopathy. It was just a big thunderbolt to understand exactly how it would impact my life.

So I've always been into sport, I've been an absolute sport junkie. I ran for the county, played football, played rugby. Being diagnosed with HCM has meant that I can no longer do all of these things. You then sort of build a bit of confidence and then you work out ways of doing things slightly differently. As an example, I used to like riding my bike and I can no longer do that. So, I got myself an e-bike, which was the best thing that I've ever done since being diagnosed, because it's given me that freedom.

Know your body, know how it works. And if you get a feeling of things changing, you're starting to get out of breath when you go to bed, you might hear your heart beating in a slightly different way. Those are things that you need to really think about and speak to a GP. Get yourself checked over.

I do feel actually lucky because there's so many people out there who don't know that they got it. You don't realize that shortness of breath might have something to do with it. So they might be thinking like me, oh, it's asthma related or they might not realize that it is related to their heart. I feel very lucky that I'm in a position where I can still live my life knowing what I've got and I can make informed choices. 

There's so many people out there who don't realize who, who don't listen to their body, their symptoms, don't see advice through the GP. 

I was diagnosed in 2017 on my birthday, So that's six years ago now. And from where I was to where I am now, it's been a journey. But it's been a positive one in the fact that I've learned how to live with the condition. I prefer to concentrate on the things that I can do, keeping myself active as much as I possibly can. And trying to live life as full as I possibly can as well.



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