Living with Brugada syndrome

I’m Sarah. In January 2012 I was diagnosed with a heart condition known as Brugada syndrome, something that I have had since birth yet was completely unaware of – living like any other healthy 31 year old woman; going to the gym, work and starting off newly married life with my wonderful husband James. Looking back now it still seems a bit unreal, but I know how lucky I am to have been diagnosed. Here is my story:

“I had just finished a busy and stressful shift at work, I’m a nurse you see, and gone home. I remember being sat with James and feeling my heart start pounding with really strong palpitations, and my chest feeling uncomfortable. I was also feeling faint and looking sweaty. I did not faint and it lasted about 30 seconds which seemed forever. I knew that it wasn’t right to feel like that so we went up to A&E. I had an ECG which the nurse said looked OK and I felt a bit of a timewaster. However, the doctor then came in and that’s when I realised something was wrong with my heart. There were changes on my ECG and I was admitted to a high dependency unit for heart monitoring as he thought I had something called Brugada syndrome. I didn’t understand what or how serious it was at the time, I just got told it can make my heart beat fast and that it was a genetic condition.

After waiting 3 weeks and being monitored, I was transferred to a specialist heart hospital in Manchester where I met with my doctor. I began to realise the seriousness of this condition, and that I would have to have an ICD fitted. I remember feeling quite upset at the time and was worrying about it sticking out of my chest and the scar and how my life was going to change. It was the shock of me being fit and healthy and then this, but I’m glad it has been picked up now.

I had a Flecainide challenge prior to my surgery to see if it would provoke changes on my ECG, which would indicate true Brugada syndrome. I remember feeling very anxious throughout but the doctors and nurses looked after me. I then had my ICD implanted under my muscle, which was a little sore at first, and returned back to work a month later.

Although I had my doctor and specialist nurse, who is brilliant, to give me quite a lot of information and answer my questions, I will be honest, I didn’t really absorb the information and remember feeling fed up and alone the first month I had my ICD.

I went to my heart hospital meeting for patients with ICDs but hated it as they were a lot older than me (around 60-80) and they were feeling sorry for me being young. This left me feeling very isolated.

Through looking on the internet my dad found CRY which I can honestly say has been a huge help with my recovery from being diagnosed and having my ICD fitted. I have gained a lot of information about my condition, what drugs I should avoid and being sensible with exercise, which I am. At first I was worried about having sex in case my ICD went off – you do when you are young!

I went to the myheart meeting and it was the best thing I did. Being able to talk with people my age with ICDs and conditions similar to mine, it was more like chatting with my friends than a meeting and it helped me offload all my worries to people that knew how I really felt.

Life now has changed for the better, I know how lucky I am to be here and how my defibrillator is there protecting me if I ever need it. I also wear my tops and dresses with confidence and feel quite proud of my scar. My only advice is: enjoy life, it’s what you make it!”