Sarah Bond

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:

Sarah & James Bond“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!”

Joseph Tanner

Living with Brugada syndrome (type 3)

Sunday 16th March 2008, I had a cardiac arrest and died for 7 minutes. I collapsed at the finishing line of the Hastings half marathon.

I had no clue that I had an undiagnosed heart condition, I always considered myself a healthy person.

Before this fateful day, I would run roughly 20+ miles a week and I had completed the London Marathon in 2007.

I’m thankful that this condition showed itself on this day, at an event where defibrillators were at hand. It scares me, to think that this could have happened to me at any time, people with my condition commonly die in their sleep.

On that Sunday, I was picked up in Hove by others runners I had met through my running group. We all arranged to meet after the race for a lift home. I remember the day being very cloudy and wet.

Before the race I texted 5 of my friends to say that I wasn’t feeling right and to wish me luck. I don’t even remember sending that message, I don’t remember feeling queer!

I woke up in hospital on Wednesday, I had been in intensive care for 2 days.

I remember coming out of intensive care, feeling like I was waking up in a horror film. Everything was explained to me, what happened but I don’t think I ever really took it in, maybe it was the shock that I was lucky to be alive.

When I Died!

When I died,

There were no white lights,

No pearly white gates,

Nor did I fall upon the burning pits of hell.

My life didn’t flash upon my eyes,

Nor did I rekindle those moments I desired!

I did not feel my soul leave my body,

To look down upon my lifeless body.

When they brought me back,

I didn’t feel my lungs fill with air,

Nor do I remember my first breath.

For days I laid in intensive care,

Those days were a dreamy haze.

My family sit around my bedside,

All teary eyed, they nearly lost their boy!

Naked as the day I was born

Wired to the elevens,

This is no heaven!

A shock to the system the day I died,

To breathe again,

I cried!

I don’t remember running, my body must have gone into-auto pilot, getting me to the finish line in 1 hour 49 minutes. Once I collapsed St John Ambulance went into action, they realised I was going into cardiac arrest so they shocked me with defibrillators. I was also told that I had another attack while I was in the ambulance on route to hospital. My family was phoned, the police visited my work place and told my manager to expect the worst.

After having an MRI scan at Brompton Road I was diagnosed with Brugada syndrome. It had already been decided that I was going to have an implantable cardioverter defibrillator (ICD) inserted but had to wait on the MRI before getting the go ahead.

I took everything in my stride, which seemed to surprise a few people. I looked at it that I was lucky to still be here, so I was like “do what you have to do”.

On the day of my operation, I couldn’t think straight. I had to sign permission for the operation, for the very small possibility that I could die under this procedure. I think that scared me the most, the thought of dying; I showered twice to make sure I was clean. When I was taken down to theatre, I laid down on the operating table, I was so scared that a solitary tear rolled down my cheek. I remember a nurse asking me if I was okay, I lied ‘cause in truth if I had option I would have ran out of that theatre.

Four hours later I woke up in my hospital bed, with a room full of friends, it meant the world to me to be surrounded by so many friends. The next day I was released from hospital, after 3 weeks I was so happy to be out. I was told to take it easy, but on the day of release I was out walking along the beach. A week and half later I was back at work, I wasn’t allowed to do any lifting or climb ladders – among many other things – for about 6 weeks.

Watch Joseph talk about his experience of having an ICD fitted below.

Life is pretty much back to normal for me now, sometimes I even forget that I have an ICD – though it looks like a bar of soap under my skin. I found out about CRY by chance. I wrote many blogs about my experience on Facebook and Myspace and a mother who lost her son to a cardiac arrest contacted me after reading one of my blogs – she told me about CRY and all their work. So I checked out the CRY website, contacted them via email, chatted to Alison a few times, told my story and the rest is history.

I’ll continue to raise awareness through CRY and help give support to people that need it.

It took me over a year to put back on my running shoes, I was finally able to find the courage after attending a couple of myheart meetings.

The only barrier in life is yourself, the moment you say “can’t” is the moment you fail.

Watch Joseph and myheart member, Paula Simmonds, debate with CRY myheart cardiologist, Dr Michael Papadakis on exercising with an ICD below.

  • Joseph cover