After a close friend of ours, Tim Butt, suffered a near-fatal cardiac arrest we decided it’d be a good idea to go for a run.
Setting off from the Liberty Stadium in Swansea, we spent two weeks averaging fifteen miles per day across South Wales and through England all the way to London before then taking part in the London Marathon.
Spending anywhere between three and six hours on the road each day was certainly not the most pleasant experience either of us have ever had. After suffering from separate injuries very early on, it certainly wasn’t as simple a task as we’d both hoped but the key, as with anything, was to keep moving in the right direction.
A massive thank you to everyone who helped out along the way, most notably to Swansea Tennis Centre who enabled us to film our trip. Also a big thank you to those who contributed towards our final fund-raising total of £2,808.40. You are all wonderful.
I’m always right! Friday 15th December was the one day I wish that hadn’t been true. That was day that after months, well years, I finally got a diagnosis. Brugada! A hereditary condition that puts me at risk of cardiac arrest (apologies if that’s not quite definition it’s all still very new). I’m first in family with diagnosis. Since 15 I’d been mentioning palpitations. Having had a thyroid issue as a teen I was always just given blood tests to test thyroid levels (came back fine obviously) and told to just get used to it being one of those things. In last year I wasn’t having it anymore, they were lasting hours. Turns out my definition of palpitations had been slightly different to what a GP had assumed. When GP finally acknowledged I was at point of screaming for help I’d been given echo/holter monitor and I don’t know how many ECGs in A&E. Yet these showed nothing wrong. I was starting to think it was all in my head.
On Tuesday the 21st of February I was sent home from work a little early as I was feeling unwell. My colleague had only recently returned to work after having the flu so I assumed I was coming down with something similar. My manager asked me to call in the next day if I was still feeling unwell but hoped I would be feeling better. Wednesday morning arrived and I was feeling worse. I had a dry cough and high temperature. I didn’t think much of it; I got up and went downstairs, made myself some soup and got back into bed.
The next 24-48 hours are a blur to me however were the most life changing moments of my life.
I was asleep upstairs and my mum was in the kitchen making herself lunch. She had the radio playing whilst keeping an ear out for the dogs. After a while she noticed the dogs behaving in an odd manner, they were running up and down the stairs and barking at my door as if they were trying to tell her something. Mum could hear me making a noise and thought I was singing but when I didn’t answer she went upstairs to find out what all of the fuss was about. Opening my door she found me having what she immediately believed to be stroke or fit. Without any hesitation the paramedics were called as the operator guided my Mum in what to do next.
At this point I could not talk or move, I was making noises but they were nonsensical babbles. While waiting for the paramedics to arrive my mum was checking to see how much function I had. She was asking me my name, if I knew where I was, and what my date of birth was. For my mum, the eleven minutes that the paramedics took to arrive felt like hours. When they arrived I was slowly coming out of what they thought may have been a seizure. My speech was returning, although a little slurred, and I was starting to appear fine. Then, out of seemingly nowhere my eyes rolled, I went limp and, what we now know is, my heart stopped. By this point my dad had arrived back home after being called by my mum. My dad told me that as the paramendics gave me CPR, he held my hand, but knew something was seriously wrong because as he held my hand he could feel me getting cold and lose colour, as blood stopped circulating around my body. I became limp and lifeless. Seeing that CPR alone was not working the paramedics rushed into action and proceeded to use a defibrillator to try and start my heart. After each shock, they performed CPR again and it wasn’t until 8 minutes later and on the third shock, that my heart finally began to beat again.
By this time another paramedic team had arrived and I was treated with an injection or antibiotics and antiviral, as they suspected it may be Meningitis. I was rushed to my local A&E and up to the critical ward where I was put into a medically induced coma while various tests were conducted to see why and what had happened. I was tested for several different illnesses. I had blood tests, a lumbar puncture and many many ECG scans.
As I was bought out from the coma 24 hours later I remember feeling dazed and very confused. I had tubes and machines connected everywhere there was space. My memory was awful and I would forget everything anyone told me seconds after. I didn’t know where I was or why I was there. Also didn’t believe the doctors when they told me about what had happened.
I was transferred to the cardiac ward where I was monitored and assessed for three weeks before being transferred to a specialist cardiology hospital.
Once at the cardiology hospital I was diagnosed with Brugada Syndrome very quickly and was told I would and should have surgery to fit an ICD (implantable cardioverter defibrillator). A machine that would shock my heart and give it a sort of reset if this was to happen again. This was going to be fitted under my collar bone. I was scared and unsure but the fear of putting myself and my family through this all again was to powerful to turn down the procedure.
The hospital explained to me that I had suffered with Brugada Syndrome for all of my life but contracting the flu had raise by body temperature to a point that sent my heart into spasm. They believe my first seizure was bought on by a cardiac arrest which I some how managed to come out of on my own.
I was 21 yeas old. I was fit and healthy. I had no cardiac problems prior to this incident and hope I have no more going forward. It was a shock to everyone and affected so many different people in so many different ways.
The first 6 months after the incident was tough. I was constantly scared of it happening again. I was terrified of going to sleep at night in fear of not waking up. Doing exercise was difficult as I thought that this may set my heart off again. 9 months later and I am still dealing with the affects of what happened but I am coming to terms with managing my diet and leisurely activities. I am now playing football and being active again.
Being diagnosed with Brugada Syndrome and having a cardiac arrest were the most terrifying things I have ever experienced, but the support of my family and friends was and is amazing. I have met lots of people through CRY that have experienced similar things to me and this was extremely helpful. I now know that my thoughts and feelings towards it are normal and that having Brugada syndrome is not the end of anything but is simply a part of me.
It happened in July this year and I have had all the tests but the cause is still unknown, I have MVP but they have said that is unrelated. I am 34 And was at my sister’s wedding as maid of honour. As I walked down the aisle, I told my friend I felt dizzy and then as soon as I sat down at the end I collapsed onto her lap.
A wedding guest and my two cousins were first aid trained so as soon as everyone realised I wasn’t breathing, they started CPR, I was also so lucky as the hotel had a defibrillator which they used to administer one shock which worked. The hotel was in London and the ambulance arrived in 8 and a half minutes and I was taken to Guys and St Thomas’ and put in an induced coma for 24 hours.
I was so lucky and was left with no lasting memory problems. I just can’t remember a few days around the event.
About 3 weeks later, once they had carried out a number of tests, they fitted an S-ICD. I also now take beta- blockers.
I am pretty much back to normal now apart from still very tired at times and anxious too after what has happened.
myheart member, Joseph Tanner, talks about his experience of taking part in the Brighton Marathon, 2015 below.
This story begins on Sunday 16 March 2008; I entered the Hastings Half Marathon. The week before the half marathon I had a cold, and at the time I didn’t think much of it. On race-day I felt all right, although I texted a number of people saying something wasn’t right, and that I would text them after the race.
I never sent that text because that day my life changed; I collapsed at the finish line and had a cardiac arrest. If you think about it, running saved my life. I have a condition where it is common to die in my sleep. My condition decided to show itself on a day that I was running, a day that defibrillators were at hand and I could be saved – so, yeah, running saved my life.
I was then diagnosed with a heart condition called Brugada syndrome, and doctors/cardiologists/specialists said that I would never run a marathon again. It was tough to take in, the idea of not running again, even though I came away with my life. I wouldn’t run again until 2010 when, after some support from the myheart crew, I finally found the courage to put on my running shoes again.
It did take a lot of courage to put my running shoes on. I had a cardiac arrest whilst running and I feared it would happen again, that is a hard hurdle to climb over! I never knew how far I should or could run; no-one would/could give me those answers. My burning desire to run another marathon returned in 2014 when I volunteered to cheer on CRY runners during the Brighton Marathon.
So with my mind made up I decided to sign up for the Brighton Marathon. I was honest when filling out the application, a part of me wanted them to refuse me entry for the marathon.
Saturday 11 April 2015 – a night that I won’t ever forget – the night before the Brighton Marathon. I am being very generous saying that I had three hours’ sleep the night before. I had run many miles before the marathon day, but I did have a fear that this would really be my last run. I felt bad because my sister was pregnant at the time and I felt that maybe I was being selfish. I also had my parents in a tailspin not wanting me to run this marathon. I had to do this for myself, though I really wasn’t sure what I was trying to prove. That night I talked myself out of running a million times, and yet I laid in my bed until my alarm went off – though I really didn’t need it! I walked to Preston Park, the starting point of the Brighton Marathon, en-route passing so many people that were on the same path as me, yet on a very different journey.
At Preston Park I waited around anxiously until the race started, then I lined up with all the other runners, my nerves building up more than ever. It was just the waiting – once I started running I knew I would be fine. I had felt fine all the time – tired due to lack of sleep – but fine.
I loved every single minute of running, through the city that I love, the place that I now call home. What also felt good was all the people that I was overtaking, damn that competitive side came out of me! I was doing a good time; my friend Charlie informed me that at one point it looked like I would finish in 3hrs 45mins.
Around the 17/18-mile mark I started thinking to myself, I’m going to get around this course without hitting the wall. Sadly, I got a bit ahead of myself, even before the race I had a mental barrier of 18 miles because that is all I had done in training. At the 19-mile mark my legs gave in and I had to start walking, I text Charlie to let her know, from this point forward I would walk five minutes and then run five minutes. The five-minute runs felt like the longest run in the world, and the walking time went far too quickly!
I would have never been able to run a marathon again if it wasn’t for all the support I received from myheart members that I met through CRY.
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 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.
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.
Living with an implantable cardioverter defibrillator (ICD) and an undiagnosed condition
A healthy way to start the weekend, get up Saturday morning and go for a run. This was something my fiancée Charlotte and I enjoy regularly, sick this one however was very different.
After being out for just over an hour running the streets of Bath on a very sunny September Saturday, Charlotte and I returned to our flat when I suffered suddenly from a cardiac arrest. My heart rate shot up drastically causing me to pass out and completely lose any sign of a pulse.
My life-saving and truly courageous partner performed CPR on me until the ambulance arrived, whereupon I was shocked several times with the on-board defibrillator by paramedics. If it wasn’t for her immediate actions and quick thinking, followed by the quick ambulance response, things would have been very different for me.
I was immediately sent to the intensive care unit of Royal United Hospital in Bath for 3 days being closely monitored. My body temperature was refrigerated to preserve my brain function. After this I was then transferred to the cardiac ward and had no idea how or why I was there.
My fiancée, her family and my own family experienced such extreme uncertainty particularly in those early days, I really can’t imagine the anxiety, worry and stress that was felt.
I was totally unaware and have no memory of anything until at least a week later in hospital – convincing myself I’d been involved in a car accident and concerned at why my chest ached. I was told what happened to me, but it was still very hard to digest in my mind as I had no memory of anything that happened aside from a few minutes before the end of my run. At the time my short-term memory was very poor as I was unable to remember basic things.
Doctors explained to me their thoughts and offered possible answers on what had happened. Initially it was thought I’d caught a virus and was overly exhausted. After 7 weeks being in hospital, examined and scanned several times, I was told I’d have to have an implantable cardioverter defibrillator (ICD) implanted and take daily beta-blockers. At the time I was an electrician, one of the very few jobs not recommended by cardiologists, forcing me to give up and make a new start in my career.
In 2009 I experienced 2 inappropriate shocks from my defibrillator in February, setting me back physically and mentally. Consequently, I was required to have my ICD lead repositioned involving invasive surgery on my 27th birthday.
Today I am still under doctor’s investigation at the Heart Hospital in London, as I have no firm diagnosis for a cardiac illness. Initially, it was suspected that I had arrhythmogenic right ventricular cardiomyopathy (hospital discharge-diagnosis). However, following ECHOs, ECGs, blood tests and my defibrillator downloads, hypertrophic cardiomyopathy and dilated cardiomyopathy were investigated – but (common-gene) genetic testing has proved cardiomyopathy is not an accurate diagnosis. My immediate family have all been screened and none are showing irregular or concerning signs like me, including my identical twin brother.
In October 2009 I completed the Cardiff Half Marathon, which was a real achievement for me both physically and mentally. Since then I have gone on to complete several 10-mile races and fully intend completing a marathon in the near future. I enjoy keeping fit and will continue to do so, despite my medical history.
In order to understand why blackouts and cardiac arrests can happen, it helps to understand how the heart works.
The heart is a specialised muscle that contracts regularly and continuously, pumping blood to the body and the lungs. The pumping action is caused by a flow of electricity through the heart that repeats itself in a cycle. If this electrical activity is disrupted – for example by a disturbance in the heart’s rhythm known as an arrhythmia – it can affect the heart’s ability to pump properly.
The heart has four chambers – two at the top (the atria) and two at the bottom (the ventricles). The normal trigger for the heart to contract arises from the heart’s natural pacemaker, the SA node (sinoatrial node), which is in the top chamber. The SA node sends out regular electrical impulses causing the atrium to contract and to pump blood into the bottom chamber (the ventricle). The electrical impulse then passes to the ventricles through a form of ‘junction box’ called the AV node (atrio-ventricular node). This electrical impulse spreads into the ventricles, causing the muscle to contract and to pump blood to the lungs and the body. Chemicals which circulate in the blood, and which are released by the nerves that regulate the heart, alter the speed of the pacemaker and the force of the pumping action of the ventricles. For example, adrenaline increases the heart rate and the volume of blood pumped by the heart.
The electrical activity of the heart can be detected by doing an electrocardiogram (also called an ECG). When an ECG is recorded it looks like this.
The mechanism of a blackout or cardiac arrest due to a channelopathy is most commonly a serious disturbance of the heart’s rhythm known as a ventricular arrhythmia (a disturbance in the heart rhythm in the ventricles) or ventricular tachycardia (a rapid heart rate in the ventricles). This can disrupt the ability of the ventricles to pump blood effectively to the body and can cause a loss of all blood pressure. If the heart’s rhythm goes back to normal spontaneously the loss of blood pressure is only temporary and the individual experiences a blackout or near-blackout. If this problem does not resolve this is known as a cardiac arrest.
The heart’s natural pacemaker – the SA node – sends out regular electrical impulses from the top chamber (the atrium) causing it to contract and pump blood into the bottom chamber (the ventricle). The electrical impulse is then conducted to the ventricles through a form of ‘junction box’ called the AV node. The impulse spreads into the ventricles, causing the muscle to contract and to pump out the blood. The blood from the right ventricle goes to the lungs, and the blood from the left ventricle goes to the body.