Lucy was diagnosed with hypertrophic cardiomyopathy (HCM) in January 2017 at the age of 16. She has shared her journey with us in the hopes of raising awareness and helping other young people with cardiomyopathy.
I was experiencing symptoms of cardiomyopathy for around two to three years before I was diagnosed. I was experiencing tightness and pain in my chest, and there were two occasions where I had fainted. I used to do intense sport and training whilst I was at secondary school and the symptoms seemed to appear once I stopped doing them.
In January 2017, I had my first cardiac arrest. I don’t remember the day, but I was told by the people who were behind me that I was jogging. I finished college at 4pm on Fridays so I assume I must have been trying to catch the earlier train, but I have no memory of this. Thankfully, I wasn’t far from a fire station, the firefighters managed to get to me in a matter of minutes and use a defibrillator on me. If it wasn’t for them, I wouldn’t be alive right now.
When I got to the hospital, I was in a fatal state and was put in an induced coma. I had tests whist I was sedated and was diagnosed with very severe hypertrophic cardiomyopathy (HCM) only days after. I felt fine at the initial point of my diagnosis. I was only 16 years old, so I didn’t really understand what had happened to me. When I was woken up from the coma, I felt very confused and at the time I didn’t really comprehend how serious what had happened to me was.
After my diagnosis in 2017, I was still exercising too much and partying, which then led to me having more cardiac arrests. Luckily, I had my ICD which has saved my life countless times now. Looking back, I was too young to understand the severity of my condition and how close I really was to dying each time. Now I have realised that I had to go through these traumatic experiences to understand the severity of my condition and how to manage it in the future.
My dad and sister also have HCM, and it was genetically passed on from my dad. However, we weren’t aware of this until I was diagnosed and my family had been genetically screened. My dad also has an ICD, but his condition is not as severe as mine, my sister has no symptoms at all and only has the present gene.
Living With Cardiomyopathy
I never really knew anything about heart conditions before I was diagnosed, I didn’t even know what a cardiac arrest was until I had one myself. Since my diagnosis, I have learnt so much about my heart condition. As I get older, I find learning about the function of my heart and all the things that have gone wrong with it so fascinating. I ask so many questions at hospital appointments just to make sure I know everything. I have definitely learnt a lot.
Living with cardiomyopathy has completely changed my life. I don’t have many severe symptoms day to day, I am on strong medication which slows my heart rate down and makes me feel a lot better. It has taken years to find out the correct dose for me. The severity of my condition is very rare, and I have been told by my consultants that it is one of the worst they have seen. This means I’m restricted from doing a lot of things that I used to do before my diagnosis. For example, I can’t really do any exercise, as I have had cardiac arrests from being on a treadmill, walking too quickly and walking up steps. I have been advised to keep my heart rate low due to my past experiences. I also find myself scared to do any exercise in case I cause myself to have an episode. As time has gone on, as I learn and understand more about my heart, it has become even more traumatic each time I do experience an episode. Being unable to exercise and take part in sports has resulted in me putting on weight since I was 16, some days I do find myself getting quite down not being able to lose weight as easily as others.
My condition also affects my work, as I have to make sure everyone knows about my heart condition for their records and incase anything happens. I work in an office in a logistics-based role currently. Unfortunately, I had another ventricular fibrillation episode (where my heart was beating too fast and out of rhythm) in January, this resulted in me staying in hospital for two weeks and having an ICD replacement. My manager is very understanding and supportive, wanting me to take off as much time as I need.
I find new relationships can also be difficult, as I have to tell anyone new in my life about my condition and what happened to me. I don’t feel like anyone really understands the severity of my condition until they see me experience an episode. I have been with my boyfriend for just under a year now, he had never seen me in the hospital or experienced my episodes with me, so when I was in hospital recently it was very difficult for him.
Due to my cardiac arrests, I haven’t been able to drive which is a massive issue for me now especially being in a full-time job. A shock from my ICD means I cannot drive for six months. My first four cardiac arrests all happened during the year of 2017, which meant my driving was pushed back until I was 18, by then I was at university and didn’t need to drive. When I graduated from uni last year, my 2022 New Year’s resolution was to start driving but unfortunately due to my recent cardiac arrest in January, this has restricted me from driving for another 6 months. Luckily, I have a lot of amazing people in my life who are kind enough to drive me places, but I hate relying on people and not having that independence, it has always got me down.
Despite the difficulties I face with my condition, I think I am quite positive, everyone always tells me I am, and they are amazed at how calm I am. I’m proud of myself for how I approach my condition, I have lived with this condition for over five years now and I feel like I have adapted and had time to process all the information. I feel extremely lucky every day to be alive and to have my ICD which has been the most amazing thing I have ever come across. It has saved my life countless times now. There are people who are in unbearable pain in the world and have awful diseases like cancer, I feel lucky that I am still here and have a basically normal life every day where I am not in any pain and my heart is still working.
I try not to worry too much about what the future holds but some days it can be difficult. I do sometimes worry about dying early and not living a full life but then I realise that worrying about the future won’t change anything. If I do die young, then I will have spent the remainder of my life worrying about dying. I have been told that pregnancy and having children is a massive risk and could have many complications. This has been one of the most difficult things for me to process out of everything.
I found a Facebook group for younger people my age with people with HCM. It was interesting to hear other people’s stories as I thought I was one of the only few young people with the condition, but I saw there were a lot. Being able to hear other people’s stories has helped me a lot, In the hospital I was always in cardiac wards with elderly people which made me feel very out of place.
I also have so many supportive people around me like my friends, boyfriend, and my mum. My mum has been my rock with this situation, and she was by my bedside every time and there where anything bad happened, I wouldn’t be able to be positive without her.
If you are a young person living with cardiomyopathy, we have a range of support and information we can offer. You can also join our 14-25 Facebook group, a closed group for young people aged 14-25 affected by cardiomyopathy.