My name is Chloe, I am a 38-year-old mum, wife, step-mum, aunty, dog mum, and small business owner. When I was 27, I was diagnosed with Hypertrophic Cardiomyopathy (HCM – non-obstructive).
What led to your diagnosis? What has happened since then?
At the time I was diagnosed with Hypertrophic Cardiomyopathy (HCM), I was running a family day care from my home. My youngest was a baby, and I had been struggling with anxiety and experiencing heart palpitations on and off for a few months. I had attributed these symptoms to stress and anxiety and carried on with life as best as I could. One day, my left hand went numb and tingly, and I thought I was having a heart attack. I called an ambulance and asked my neighbour to watch my children. It turned out I was having a panic attack, and what I was experiencing wasn’t heart related. However, during the testing at the hospital, doctors found something wasn’t quite right with my heart and referred me to a cardiologist. After an MRI, ultrasound, and a 24-hour heart monitor, I was diagnosed with HCM. The palpitations I had been attributing to anxiety and stress were instead related to HCM. Since HCM is often a genetic condition, my whole family was tested however no one else was diagnosed. My two children are tested regularly as a precaution. Since my diagnosis, I have worked through many of the mental challenges I faced with practices like meditation, psychology, and counselling. In 2023, I had an ICD/pacemaker implanted as a precautionary measure.
How does cardiomyopathy impact your life?
Cardiomyopathy has impacted my life in several ways however I try to focus on the positives. Initially my fear and anxiety increased which contributed to the frequency of my palpitations. I felt overwhelmed, lost, and lonely. I felt too young for a HCM diagnosis (I now know this can happen at any age). I feared for my children if something were to happen to me or if they were to receive the same diagnosis. Eventually, I learned more about the condition, found a cardiologist I trusted, commenced daily medication to lessen palpitations and focussed on my mental health and lifestyle changes. A diagnosis of HCM can be frightening, however, I have learned the benefits of taking care of myself physically and mentally. Someone told me when I had my ICD implanted, that it was like having a ‘paramedic on my shoulder’ – a phrase I’ve never forgotten and one that continues to bring me reassurance. I now live a mostly normal life, run a small meditation business and spend a lot of time with family and friends. I take each day as it comes. I have a few medical appointments each year and am mindful of what physical activity I partake in. Besides that, I often forget I am living with cardiomyopathy.
How has cardiomyopathy impacted your relationships (partner/family/friends)?
Cardiomyopathy has brought me closer to my family and friends. At the time of my diagnosis, I leant on my family and close friends and on the day of surgery, realised how much it impacted those I loved. I am so grateful for their love and support and am fortunate to have a wonderful medical team. I do worry about my children inheriting HCM and how it may impact their lives. I’ve always been open with them so they understand the importance of regular testing, and if they are ever diagnosed, I feel they will have a good understanding of what it would mean for them and how it may impact their lives.
Having lived with cardiomyopathy for some time, what is something you’d like to pass on to someone more recently diagnosed? Or, what is something you wish you’d known about earlier, which might have made your journey with cardiomyopathy more manageable?
It is important for people to know their emotions and concerns are valid. It’s ok to be upset, angry, fearful and everything in between. It’s ok to ask for help and lean on those around you. Do what you can to look after your mental and physical health, and find a cardiologist, psychologist, counsellor, or support group you trust. No question or concern is too silly or too small. While a diagnosis can be daunting, remember that knowing your diagnosis allows you to access the right care and treatment. This can be incredibly beneficial in managing your health.
How has/can a patient support group assist?
A support group can be incredibly beneficial whilst navigating the ups and downs of a diagnosis. The day I joined a support group was the day I began to feel less alone. I realised there are people of all ages with cardiomyopathy and each person has their own story. To share stories, emotions, concerns, encouragement, and sometimes just have a cry with others who understand has been a huge part of my journey and a huge benefit to my mental health.