Jaana was diagnosed with hypertrophic obstructive cardiomyopathy (HOCM) in May 2017. Jaana has shared her cardiomyopathy journey with us to help others who may be going through a similar experience.
The diagnosis
Before my diagnosis, I was experiencing more cold/flu-type illnesses than before, but I assumed it was just a bad year for them. I am at an age now where I thought this was common, so it was easy to discredit these symptoms as normal as I didn’t go to my GP every time I had a cold or flu.
Shortly before I was diagnosed, I got very ill with bad sinus problems, a cold and a continuous cough, all of which felt worse than normal. I was having trouble breathing, walking, and getting up the stairs. As these symptoms worsened, I went to my GP.
My GP found a murmur and the results of my ECG were unusual, so I was referred to the hospital where I was eventually diagnosed with HOCM. I was put on medication and had an ICD implanted which helped at the beginning. After my GP referred me to the hospital, it took two months until I was seen by a specialist. The waiting was difficult, as I had no idea what was wrong or how serious it was.
At the time of my diagnosis, I was aware of some heart problems in my family history, but I didn’t know anything specific. I’m from a generation where things like this weren’t discussed as openly as they are today. I had a cousin who died suddenly (in his 40s), but I wasn’t told the precise reason why, I am unsure if this was fully investigated at the time as it happened such a long time ago. I was told after tests that I was found to have a ‘genetic spelling mistake’ with my MYBPC3 gene, meaning my HOCM did have a genetic cause.
Receiving my diagnosis felt unreal, I was shocked and scared. You read all these stories in the papers about things like this, but you never think it’ll happen to you. It left me thinking about how much my life is going to change, and what might happen to me in the future. I was trying to fully understand how serious my condition was, and what I can and can’t do. I have always been a very practical person, so I thought I needed some kind of plan, whatever that plan might be.
Before my diagnosis, I have always been aware that lots of people have hidden disabilities. Whether that be physical health problems or mental health problems, people can carry many kinds of disabilities without others knowing. Some people may get comments like ‘you look so well; nothing can be wrong with you’. It goes to show you never know what struggles other people are going through, and you should never judge a book by its cover.
Living with cardiomyopathy
I have always been a very active and independent person. I love sports, and exercise, I have done martial arts for most of my adult life at a high level (nobody would believe it now, but I have a 1st-degree black belt in kickboxing, and I have done belt gradings in my 40s). I have been a sports/fitness instructor, and took part in a lot of cycling, walking, skiing, and ice skating. We have an allotment that requires a lot of physical work and I used to do all kinds of DIY. My entire life has been sports orientated and I absolutely love it. It was a difficult adjustment post-diagnosis, learning my limits and knowing what I can and can’t do, as my active lifestyle has always been very important to me.
At first, I was managing my condition well with medication and my ICD. I left the extreme sports behind, but I continued to do a reasonable amount of walking, cycling and water exercises. People who know me were shocked to hear about my diagnosis, knowing how much I have done and how active I have always been; they also know that I don’t give up easily and usually just get on with things no matter what happens.
Unfortunately, I went into ventricular fibrillation (VT) in 2020, and my condition started to deteriorate in 2021. I started to notice that my breathing had got worse, and walking was becoming more difficult. I couldn’t do much at all and even jobs around the house were difficult to complete. It was a challenging time, I was frustrated and worried about everyday life and felt like I had an unpredictable future. Life was like a slow-motion movie, and it was like being trapped in a vicious cycle with no way out. I occupied myself with colouring books, and different arts and crafts activities to stay busy and not let things get too negative. I ended up needing surgery, having a septal myectomy, mitral valve repair and an appendage clip, which I benefitted from greatly.
Since my surgery, I feel a lot better. I can do much more and things became a lot easier. I found household chores easier again, I didn’t need to think about it too much or stop between jobs, I could just get on with things again. I have reintroduced exercise back into my life, with long walks, cycling and gardening. It took time to get back to normal after the surgery, I think it’s important to let your body heal and not rush things.
I work full-time in health and social care, and luckily my employer has been supportive of my condition. They were shocked at first but then practicality took place. I have workplace adjustments which are reviewed yearly, or more often when needed if I have any changes to my health. I lost my driving license for a long time due to my condition which was difficult, but changes were made to accommodate this.
At the moment, I can make plans in life, even long-term plans, and things all look more promising and positive. I don’t have any major symptoms, and I am increasing my strength little by little. There is always a fighter in you, no matter how bad things may look, there is always hope. Staying positive definitely helps me.
We know that a diagnosis of cardiomyopathy can feel overwhelming and frightening. We often hear from our community that hearing the experiences of others and their families can be a lifeline, helping them to feel reassured, informed and less isolated. If you would like to share your story, click the link below.