Paula Beck

Paula Beck (Simmonds) wrote her story to be included in the myheart booklet which was launched in November, 2013.

Paula coverI was diagnosed with Brugada syndrome on 8th August 2011 at St George’s Hospital. I am a mum of two, one of four siblings and was only 30 when diagnosed.

Our family underwent tests after my brother (Craig) suddenly died in Australia on 23rd April 2010, aged 31. Craig had two children, a daughter aged 8 and a son aged 2. Craig was such a loving, fit, healthy person who was a wonderful dad and had so much going for him. He lived in Queensland, Australia.

We all had ECG tests which were then followed by the ajmaline provocation test that showed strongly positive for the Brugada phenotype.

We didn’t know how my brother Craig died, so at the time of testing we were shocked that not only were we trying to deal with losing Craig but now we had to undergo tests to see if we had an hereditary heart condition that could have led to Craig’s death. I had no idea about genetic heart conditions before this and at the time it all felt alien.

The straight ECG test was fine, but I knew my 24 hour ECG test and exercise ECG test showed Brugada patterns, which made me concerned about the ajmaline test – especially putting my heart under that amount of stress. I was also trying to deal with the fact the rest of my family did not show Brugada readings on their ECG tests.

All my family had the ajmaline test on the same day. My dad, mum, sister and myself showed positive. Strangely, my other brother Gary was clear on all of the readings.

This diagnosis had a great impact on me. Initially I felt shocked and gutted but tried to stay positive. I thought that if this is why Craig died, then it’s lucky we have all found out so we can take precautions for ourselves, Craig’s children, my other brother’s children, my sister’s children and my children.

I then had an ICD fitted on 2nd May 2012 at St. George’s Hospital. I wouldn’t say I often get scared about things but, yes, I was scared before the operation. I decided to have this surgery under sedation but it didn’t work very well, so all I can say is that it was like being in a nightmare. The surgeon was extremely good and reassuring during the op, although I was awake and felt everything, even when unexpectedly my body jumped off the bed when they tested the ICD. That was extreme pain, but only for a few seconds.

After the operation I found myself so emotional, trying to deal with the fact I had a hard box inside my chest. I was constantly thinking of my brother Craig. On the ward I was surrounded by mainly older people. There was one younger lady who had just had a cardiac arrest. She had lost her memory and was really suffering trying to cope with everything that had happened to her. This put things into perspective for me. I was in some ways coming round to the fact I felt glad that I had this precaution inside of me. Also I was thinking about my two daughters and I hope they also take the precaution of having an ICD in the future – if they need to.

The first month was extremely hard emotionally, mentally and physically to come to terms with my diagnosis and the ICD in situ. I did a lot of exercise before this op and had to have a month off after. When I went back to exercising I found myself anxious, worried about how to begin exercising again. I was embarrassed about my scar, having to tell instructors and self-conscious about having to start exercising softly and with low weights. This was a challenge as the box kept moving around and felt weird. Also, because my muscle had been moved to the front I had lost a significant amount of strength in my left shoulder.

It appeared to me there was a lack of knowledge on the part of some exercise/gym centres with regards to young people with ICDs and heart conditions, to the extent of turning me away. This made me feel isolated and demoralised. I got great support from the CRY myheart meetings with other young people who had been through the same operation.

The impact of my diagnosis on my family is difficult to express, as it is strange to have both parents and my sister Brugada positive as well as me. In some ways I found this helped, as when my parents first found out my dad rang me in an emotional state and told me he was positive and it was his fault that everyone had it. Then seconds later I spoke to Mum who had just been diagnosed with it as well, so I thought at least neither of them feel like it’s only their fault.

I know my brother Gary felt uneasy and sorry for the rest of us, as he is fine. I worry about my sister as I feel she is still in denial about it all. Then I started to think about my children’s situation – my lovely daughters have a 50/50 chance of having Brugada syndrome and I may have passed this onto them. This makes me feel like I don’t want to have any more children at this present time but my feelings may change in the future.

Thankfully we have all found out and are aware of the necessary precautions that need to be taken so we won’t lose any other family member in this way.

My friends were very supportive through this time. Quite a few of them didn’t have any understanding or knowledge of Brugada syndrome, or any other genetic heart condition and I initially found it hard trying to explain.

Some people’s reaction to my scar was squeamish, it seemed as if they found it uncomfortable to look at. Personally I found this difficult and embarrassing to begin with. However, as time went on and with a few cheeky jokes about it, my confidence grew and I learnt to remember ‘why it is there’ (to protect and safeguard me if needed). With this in mind I learnt not to worry about what other people thought when they saw it.

Everything has been fine now and it has been a year since I had my ICD fitted. I exercise well and enjoy my life with the security of knowing I have the back up in place if needed.

Watch myheart member Paula Beck speak with Professor Sharma about having Brugada syndrome.

People may think that younger people who have been screened will find it hard to come to terms with being diagnosed with a heart condition, but it would be much harder for their family to have to come to terms with losing someone so young, because they had not known they had a heart condition that could have been monitored and treated.

My eldest daughter is 8 (Chloe) and she understands why I had to have all these tests done and why I have an ICD. Chloe also understands why she will need to be tested as she gets older. Chloe joined me on the CRY London Bridges Walk last year.

She took the pictures and information into her school and gave a speech to her teacher and class friends on why she did the walk and the relevance it had to her. Both my daughters will be joining me on the CRY London Bridges Walk this year. I think screening is a necessity in the young as this is what is going to identify people at risk, save lives and prevent unexpected young sudden heart deaths.

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


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Sian Donnelly

Sian Donnelly wrote her story to be included in the myheart booklet which was launched in November, 2013.

Sian cover

Whilst on a family holiday in 2004, my brother Adam died suddenly whilst playing volleyball at our hotel. After two post-mortems we were told that he had died from SADS (sudden adult death syndrome). At the time, we were completely unaware of any heart conditions in our family and by chance came across CRY who said we should be screened.

After a day of tests by the CRY team in 2009, Mum was diagnosed with the hereditary heart condition Brugada syndrome. Not only did this give an answer to my brother’s death but it allowed us to test the rest of the family, revealing that my aunt and grandmother have the same condition. This, ultimately, has prevented any more distress to my family. We also chose to have genetic testing which was inconclusive – no Brugada gene was found.

At 18, a year after my mum was diagnosed, I learnt that I too had inherited the same heart condition. It’s scary thinking about this at such a young age, but knowing I have a 50/50 chance of passing this on has not put me off having children in the future. We can test early to confirm if the condition has been inherited and if so I know first-hand how to deal with the diagnosis and possible surgery.

I never felt nervous during testing as I was convinced I didn’t have the hereditary heart condition. I had been tested annually for 5 years before I was diagnosed, so felt there was no reason to worry. The only time I became concerned was when I first had the ajmaline test and it made me extremely unwell because I am so small, therefore it could not be completed. Knowing that I would have to have the test again was pretty frightening but it was the only way the hospital could rule out Brugada. Even though all my ECGs and ECHO results were fine, the ajmaline test showed I had the condition. One of the well known facts about Brugada syndrome is that it can be extremely difficult to detect.

My first reaction was to cry. All my test results were ‘normal’ so it was a big shock. I went into auto-pilot, numbly listening to everything the doctor said. I was offered three options: lifestyle change, a medical procedure that would test the ‘strength’ of my heart or an ICD. I was not prepared to constantly worry about the daily things I was doing in case it would lead to a fatal cardiac arrest and I knew I did not want this change hanging over my head. Next option was a medical procedure testing the strength of my heart and how prone I was to having a cardiac arrest. However, it would involve risky surgery and if I was found to be at high risk I would have to have an ICD fitted anyway. So my only option left was to have an ICD fitted – a very quick and easy decision to make.

My operation was in June 2010 at St George’s Hospital, Tooting – less than 2 months after being diagnosed. I was nervous the morning of my surgery, but knew I was in the best place should anything go wrong! Although initial tests indicated the surgery had been successful and I was sent home, the next evening my ICD initiated three consecutive shocks. This was extremely scary – being less than 24 hours since my operation – and also very painful. I often get asked by other people with ICDs what the pain of a shock feels like and to be brutally honest, it felt like someone had kicked me extremely hard in the chest.

Mum phoned St. George’s who advised us to go immediately to our local A&E, but they didn’t understand the seriousness of the situation and the lady on reception didn’t even know what an ICD was! I sat and waited whilst a man with a sore thumb was called in before me! My parents and I then decided to drive to St George’s about 45 minutes away. Once there I was rushed straight into the resuscitation unit and they found the wire had dislodged and instead of looping from the ICD to my heart, it was in an ‘S’ shape at the bottom of my abdomen. After a sedated night in the Coronary Care Unit, panicking that my ICD would shock again before they were able to replace the faulty wire, they operated successfully.

I suffered panic attacks for a long while after these problems, concerned that it would happen again. During surgery my ICD was fitted this time underneath the muscles below my collar bone instead of directly under the skin – something my consultant suggested so the ICD would protrude less. Although thankful you can hardly see it, I was unable to move my left arm at all for almost a month because my muscles had been cut and it was extremely painful trying! I was signed off work for three months, but after 6 weeks felt ready to return to my routine and was pleased to be back driving 2 months later. As time went by I relaxed more and more and now feel completely at ease with the fact I have an ICD.

When I was first diagnosed, my parents were as worried and anxious as I was about the operation and also had reservations about how I would cope with my scar and generally manage having an ICD fitted. As an 18 year old girl, I loved going out and they thought I might become self-conscious about my scar but luckily that never happened. Although it is noticeable and considerably bigger due to the second operation, mostly I forget it’s there until someone points it out!! We all feel that a little weight has been lifted knowing that should I have a cardiac arrest, my chances of this being fatal have been dramatically reduced.

I do not believe having my ICD fitted has changed my life in any way – if anything, it’s made me more determined to live my life to the full. I love going to the gym and going out with my friends and I also had the chance to live in Ibiza for a few months.

Many people I have met since my operation don’t know anything about it and wouldn’t suspect that I have a heart condition. I often don’t tell people about my ICD or why I need it because of the circumstances surrounding my diagnosis. I’m not one for sympathy and feel that quite often people treat me differently when they find out. Although my closest friends know, I’m sure a few of my other friends would be shocked to learn that my brother passed away and that I have the same condition! I was given a magnet after my surgery. I always make sure I have it on me, as should there be a fault with my ICD and I am still conscious while it is delivering shocks, I can temporarily deactivate it by holding my magnet over my ICD site. My friends are aware that if I am unconscious they are not to use my magnet as this could end up doing more damage than good. They also understand the precautions I have to take, for instance, at airports or going into clubs they will always go ahead and discreetly inform security that I cannot go through metal detectors. I always make sure that at least one person I am with knows what to do, but thankfully it has never come to that.

With the work that Alison and the CRY team do, they have made both my family’s loss and our diagnoses a lot more bearable. They have been able to answer questions we never thought possible and have ultimately saved my family going through any more anguish. Being diagnosed at 18 was a big shock but I never felt I couldn’t cope with my condition. I was given endless amounts of information and was able to attend counselling sessions with other people who had been diagnosed with similar heart conditions. Being diagnosed with a heart condition is always going to have an impact on your life, whether you’re young or old – but having the opportunity to find out early enough to prevent anything happening is the key.

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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!”

Bradley Farrow

Living with Brugada

I did not realise that anything was wrong with me. Occasionally I would notice that my heart seemed to be going fast like it does when you’ve just been running, but I would not have been running.

I didn’t think anything of it as it didn’t bother me and at 15 why would I think there was anything wrong? For some weeks I’d been having headaches. I had not been sleeping well and I put it down to that, but on 11 October 2001 I collapsed.

I was taken by ambulance to the local A&E. They examined me, did the usual tests and said they could find nothing wrong. I still didn’t feel right, but I didn’t know why. Mum (who had been a nurse) took me back to the hospital. Again they sent me home. Mum took me back again and made them keep me in for tests.

I was put on an ECG machine and over the weekend an unusual trace was noticed. I got taken to the Brompton where they ran more tests and found that I had a sudden death syndrome (SDS) called Brugada.

It was a major shock to everyone. I didn’t know what to say or how to handle it. I was a fit healthy lad that had just fainted as far as I was concerned. To be told that I hadn’t fainted but on the night I collapsed my heart had actually stopped beating and that when I fell and my chest hit the floor it had started my heart again – well how do you take that in?

My doctor told me that the only way of making sure that it didn’t happen again was to have an automatic implantable cardioverter defibrillators (AICD) put into my heart. I was not too impressed but I had no choice.

Now that I have it I feel reassured that it can’t happen again. I know that the defib has fired. I was catapulted off my bike when it did. I felt a right fool, but it was good to know that it was doing what it’s there to do.

The only thing that it’s stopped me from doing is joining the armed forces. I still do everything else. I played rugby until I left school in 2002 (wearing a padded jacket in case I got hit on the AICD); I ride my bike – all the things I did before and it’s just good to be alive.

We got really cross that the hospital didn’t know about the syndrome and when we heard from Pedro BRUGADA and found out that most SDS can be detected on an ECG it made Mum so mad. We decided that we’d have to do something about it. That’s when we found CRY.

SDS is not as uncommon as people may think. You don’t have to be ill to have it and a lot of them are inherited. By a simple test, which takes less than ten minutes, you can be told if you have one or not. That’s why I want to support CRY. I don’t want another family to go through what my family went through, especially when I know that there’s no need for them to. I was a very lucky lad, but there are kids out there who aren’t going to be as lucky as me unless we get them tested.

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.

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