My name is James, I’m 42 years old and I was diagnosed with cardiomyopathy 8 years ago. My diagnosis came quite unexpectedly. I was in a theme park in the Netherlands, and fainted on a log flume ride, hitting my head.
When I was home the next day I went to my GP to check the head injury, and after some unusual blood pressure readings I was sent for an ECG. As soon as the test was done, the consultant was called in. I was told I needed more scans and blood tests, and that I couldn’t leave hospital. After three days of monitoring and an MRI, I was diagnosed with Hypertrophic Cardiomyopathy.
In the months that followed I was told I might need a heart transplant, and I began a cycle of tests and six-monthly reviews that continue to this day. In 2020 I developed Atrial Fibrillation, which made things more complicated, but new medication has helped me stay relatively stable.
The early days were incredibly tough. I kept asking myself, “why me?” It felt overwhelming not knowing what the future would look like. Some friendships faded, others became stronger. I closed down the startup I was running at the time, and I had to rethink how I wanted to live and work. But over time, I began to shift my mindset. I started making more intentional choices and focusing on what really mattered to me.
Support was everything. My family and friends were there for me, and I found huge comfort in the helpline from Cardiomyopathy UK. The Cardiomyopathy UK North London support group has also been a great network and really helped me especially during some of the more challenging times. I now run the group, allowing me to give back and support others
There have been ups and downs over the last 8 years, but I’m grateful to still be here, still able to travel, ski, and live my life as fully as possible. Some days are harder than others, but as one of my doctors told me, symptoms are like clouds in the sky, they come and go.
One of the ways I’ve processed my journey is through writing. My book, The Collision Code, explores serendipity and connection, and I share a lot about my heart health journey and is the reason I published the book. One such story included in the book is from the day I was told I might need a heart transplant - I had been Airbnbing my room and the person staying with me was in when I returned home. I asked him what he was working on at the moment and he told me he was working on a documentary of the world first successful heart transplant. In that moment, without knowing much more about the procedure, I felt a sense of relief and confidence.
I’m now 42, still under regular review, but I feel supported and optimistic.
What I’d say to anyone newly diagnosed is: take your time, listen to your body, lean on the people and organisations who can help, and focus on what’s in your control. Day by day, you’ll find your way.
I’m proud to be donating 100% of the profits from The Collision Code to Cardiomyopathy UK and the British Heart Foundation between now and Christmas - two charities that have been a lifeline for me.
You can find out more about my book here: