Jane's Story

Your stories 16 March 2022

Today we have a story from one of our fundraisers Jane, who along with her community choir group have chosen us to be their charity of the term, raising money for Cardiomyopathy UK.


“I’m Jane, I live with my husband, and I am a mum of three sons, aged 25, 21 and 17.

My symptoms started when I was in my mid-thirties, I would have episodes of dizziness, breathlessness, palpitations (a fast heart rate) and on occasions I would faint or collapse suddenly, and an ambulance would have to take me to hospital. Frustratingly no reason could be found for these symptoms at the time, despite various investigations. I was often told that my tachycardia was due to anxiety and stress. It was a very difficult time mentally for me and I often felt disbelieved. After a more serious collapse in 2011 at the age of 41, I was admitted to the Coronary Care Unit at our local hospital after an echocardiogram (a scan of my heart) revealed I had dilated cardiomyopathy (DCM).  I was shocked and scared but at the same time myself and family were relieved I had a diagnosis at long last!

Whilst in the unit and on a heart monitor I had another episode of dizziness which showed ventricular tachycardia, so I was transferred to a hospital in London where they fitted me with an ICD (implantable cardioverter defibrillator) and I was started on a variety of medications to treat my heart failure symptoms.

The reason for my diagnosis is unknown, I underwent genetic testing but I don’t carry the DCM gene so it has been suggested that it may be as a result of a flu virus earlier in my life. My sons have all been screened and thankfully also don’t carry the DCM gene, but they are regularly monitored and don’t have any symptoms currently.

Since then, I have enjoyed periods of good health which has enabled me to continue my work as a self-employed beautician in my home-based salon and enjoy life with my family.  I get tired easily but love walking so I try to get out in the fresh air as much as possible when I feel able.  

Unfortunately, my arrythmia issues have returned periodically over the years, causing my ICD to shock me on two occasions. I have undergone cardioversion and multiple ablations for atrial tachycardia, atrial fibrillation and more recently, last year, for ventricular tachycardia. All mostly carried out by the wonderful cardiac team at St Barts Hospital in London who now look after my care.

I have found it hard to cope mentally but have always found that singing along to my favourite tunes lifts my spirits so at the start of 2019 I decided to join a local community choir, GleeClubUk. We sing a variety of songs, both old and new but all upbeat.  I have made new friends and singing as part of a choir is wonderful and so uplifting, both mentally and physically. We even continued to sing together weekly online during lockdown.

Jane's choir group

Our choir leader, Rachel, is lovely and very supportive. During our weekly sessions we take turns to bring cakes to enjoy during our break in return for a small donation to our chosen charity, I was thrilled when Rachel asked if I’d like to choose a charity close to my heart this term. I chose Cardiomyopathy UK because I find the website and Facebook group extremely helpful and supportive, especially since losing my heart failure nurse due to cutbacks. It’s so comforting to know there is always somebody to turn to when things aren’t going so well and to be able to reach out to others living with cardiomyopathy.

My hopes for the future with dilated cardiomyopathy are that with the help of newfound treatments and medications I can remain stable and well for as long as possible and be able to live my life in the best way I can and enjoy life with my family and friends.”

We wanted to say a huge thank you to Jane for sharing her story and choosing to fundraise for Cardiomyopathy UK. We have lots of information and resources available about dilated cardiomyopathy and we also have a great range of support and services available for anyone affected by cardiomyopathy.

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