THE BLOG

How Cardiomyopathy Changed My Life

03/10/2017 15:21
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I enjoyed life and appreciated every opportunity and experience that came my way. I loved to travel and broaden my learning and horizons. Nothing scared me or caused me concern I was young, happy and the world lay open before me. And then I turned eighteen.

I had started to feel different, my heart would feel like it was trying to escape from my chest even when I was sitting down or lying in bed. My chest felt horribly tight and the slightest movement made me incredibly tired. As an active eighteen year old woman I knew that this was not right. The simplest task such as brushing my hair exhausted me!

It was a Saturday morning in the summer of 2014 when the thumping of my heart and the vice grip in my chest became unbearable. I thought I was going to die. I was taken to my local hospital where it was suggested I had an echocardiogram (a type of scan that looks at the structure and function of the heart). The cardiologist looked concerned which made me and my family concerned. The cardiologist explained that the reason I was feeling so fatigued and that my heart was pounding was due to a condition I could barely pronounce let alone heard of! A diagnosis of hypertrophic obstructive cardiomyopathy (or HOCM for short) was made. HOCM is a condition whereby part of the heart muscle is thickened which means that the heart is unable to pump blood round the body effectively. I was eighteen and being told my heart was failing. The bad news didn't stop there. My heart was in such a poor state I was told that I would need an operation to have an ICD (implantable cardioverter defibrillator) fitted. The ICD would detect any dangerous heart rhythms and shock my heart into beating normally. Without the ICD I was told I was at risk of cardiac arrest and possible sudden death.

My carefree attitude towards life changed right there. I had gone from loving life to being told that unless a device was inserted into my chest I could arrest and die. It was difficult for me and my family to accept but the ICD was implanted a few days later.

When I was discharged from the hospital I was nothing like my former self. I was emotionally drained, embarrassed by how gaunt and unwell I looked and in pain. I didn't want people near me even friends and family I wanted to be left alone to come to terms with the fact I was eighteen with a serious heart condition and living with a box inside me that would need to deliver a powerful electric shock should my heart stop beating properly. Whilst I was in hospital I felt safe and protected but at home I was constantly on edge, anxious that the ICD might inappropriately misfire and deliver an accidental shock to my heart. I didn't like feeling this way and I didn't want to live my life in fear. I made a conscious decision to live my life as normally and as fully as I could. I was due to start university later that year but had to defer. I used the time to share openly with my family and friends and to find out as much as I could about living well with HOCM. The cardiac nurse team were incredibly supportive and encouraged me to live as productive life as possible. Self-belief was a huge part of my recovery and I remained motivated to continue with a life I wanted to lead. I am now twenty one and although it hasn't always been easy, I have a strong support network and know when to ask for help.

I work full time, I travel widely and I volunteer for the nation's only cardiomyopathy specialist charity, Cardiomyopathy UK. Life might not always be how you planned it to be but it is beautiful all the same.

I am proud to be part of our #MyHeartStory campaign and the positive change to help others like me who had their world turned upside down overnight. Our youth panel wants to get more young people talking about cardiomyopathy to build a community of support and resources to make a difference for young people who can cope with the condition together.

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