Joe Street and Evan Phillips’ Swansea to London Run for friend and myheart member, Tim Butt

 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.

 

  • joe evan
  • swansea to london
  • The Run - Cover Image

I feel like me again by Nicole McShane

12 years ago, last year, last week or even yesterday; it doesn’t matter how long ago it was when they died of an undiagnosed genetic heart condition, unfortunately, they’re still not here today and the pain of losing them most likely won’t have subsided. However as time moves on, you’ll remember what it feels like to feel again. To feel hopeful and optimistic and dare I say it, happy. Of course between these occasional positive moments there will be regular feelings of hopelessness and a deep sense of loss, but this doesn’t last forever.

12 years ago I was almost 14 and my aunt was 13. She died. She’d passed out many, many times from the age of 7. She’d given up almost all physical activity. Relaxing and ‘taking it easy’ indoors became the norm on warm summer days, getting over excited was cautioned against, surely not what you’d expect for children! Her blackouts became part of our normality, that was until one day when she would pass out, faint, black out for the last time, die for the first time. It didn’t matter what we’d call it, she just wasn’t coming back. A loved daughter, aunt and niece gone, leaving a whole family devastated, for a second time. We’d later find out that what went undiagnosed was a genetic heart condition, though it would be some time before we’d discover which, of the many it was. It may seem as though I’m making light of this truly traumatic time, however I feel I can only speak this way now because of time itself.

4 months later, school had finished that day for summer. I was due to perform solo on stage to an audience of 200 for the first time at an end of year celebration. I clearly remember walking on stage. I next remember holding my granny’s hand in a hospital bed (I was in the bed). I was so concerned that the nurses would be judging my dreadful costume and I was terribly confused as to why I was there. I later found out that I’d walked on stage, got most of the way through my performance before passing out, just as my aunt had many times before. It was happening again, my family thought. As a naive teenager I protested that I wasn’t the same, it had never happened before on stage, I was just nervous this time, it was the heat, I hadn’t eaten enough that day, I’d exercised and played sport a lot and it never happened me the way it happened to her – the adults in the family were having none of it!

4 weeks in hospital, during the school holidays followed as did many tests. It became apparent quite quickly that I had an irregular heart beat rhythm. I thought this was great – I know what’s wrong, can I leave now and enjoy my summer holidays please? NO. They needed to pin down which heart condition I had. I was bored. The sun was shining. I had too many leads keeping me within a short distance of my bed in the “old people’s” ward. I wanted to be out enjoying the sun on my holidays. I simply could not have the same condition as my aunt, I haven’t had a single symptom since. I haven’t passed out since. They can’t find a condition that I’ve got. Just LET ME GO HOME! But no, that treadmill test was the only one that faithfully highlighted that my heart beat was irregular. The weeks went by, frustration mounted and then I was informed – You’re having an ICD implanted. A what now?


No, they hadn’t figured out what was wrong with me. They just decided that having this large box put in my shoulder was the best precaution they could come up with to allow me to live a “normal” life. To say I was reluctant would be an understatement. I had no choice. My parents and the doctors were in control as I was not legally old enough to consent. As a hormonal teenager, I was not the most pleasant person to my parents at this time. They did this to me and there was ‘nothing wrong with me!’

The operation went ahead. My first t-shirt afterwards had to be cut off as I couldn’t raise my arm high enough to remove it. I spent the rest of the summer living in vests which were easy to remove and scarves which covered the wound plaster. To the dismay of my parents I was on my bike the day I returned from hospital – I could only reach one handlebar (it wasn’t the best decision I’ve ever made).

Rumours of me almost dying had just barely subsided when I returned to school that September. Though it was not the same, I was no longer allowed to take P.E as a GCSE option, I wasn’t even allowed to participate in any of the P.E lessons – this was incredibly difficult for me to deal with – I was competitive and had always loved P.E. Outside of school when I played football with my friends, I was rarely passed the ball now and no-one dared to tackle me on the field. My whole world had changed. Oh and I had this lump in my chest and a horrid scar as a result of an infection when healing. Life had reached a new low.

18 months later I was figuratively speaking, dragged, to see a psychologist. I said nothing for the first two sessions because ‘I was fine and didn’t need to be there’. In the third session I just cried, in the fourth we finally started talking. I hated going every week. However, with the power of hindsight and perhaps a dash of maturity I can say that those sessions were one of the most beneficial things to aid my recovery. My body had long healed. My family were more than supportive. But my head was messed up after my world had been shaken harder than a magnitude 10 earthquake. The sessions certainly weren’t an instant fix but they did a lot to help.

I eventually got a diagnosis. CPVT. Catecholaminergic polymorphic ventricular tachycardia, what a mouthful! I remember being relieved – who would have thought? It meant that all of this hadn’t been for nothing. Nothing really changed with diagnosis other than having peace of mind. I continued to be treated medically in the same way – I just knew what I was being treated for now. My mum and granda also had the same condition and mum would later have an ICD fitted too.

3 years after having my ICD implanted, I was sat in an English lesson and I began ringing like and old mobile phone. I didn’t know at the time, but my battery was low and I was due for a replacement. It went smoothly and the scar was much more incognito than the first.

Life went on as ‘normal’. I was now used to having this thing in me. I knew how to field the questions that came when wearing a vest or bikini in new company. I knew what to say when asked why I wasn’t drinking that jagerbomb. I knew what to say when everyone else was going scuba diving and I was sitting out. I still struggle to communicate just feeling tired for doing nothing. I still struggle to express that I physically don’t have the energy to have a shower right now. I still struggle.

At some point in 2015 I first attended the gym with a friend that knew me well and all I’d been through. They talked me through the equipment and how to use it. They understood how to push me just enough that I was pushing myself but fully understood the difference between ‘my heart can’t do this’ and ‘I’m just not trying right now’. These gym sessions were a far shout from the adrenaline junkie roller coaster rides and roller blading I loved in the past but despite being new to me, I felt like I’d missed them. Over the next few years I began going to the gym, attending gym classes, playing recreational netball, I began regularly riding my bike – I was beginning to enjoy many of the things I had done before my life came crashing down. I even took adult swimming lessons and had a surf lesson. I moved away from home again and began commuting to work on my bike. Until one Friday when that old mobile phone sounded again. I was due another battery replacement.

I lived alone over 100 miles away from family; how would I cope? is how some people might have felt. For some reason I felt I could do this on my own this time. I mean I’d mastered the side plaits. I’d get the bus to work, what else would I need? I scheduled my operation for the beginning of the 2 week Christmas holidays. I returned to see my family over the same period and my, my, wasn’t I glad. There were many silly things I’d forgotten that I’d need support within the seven and a half years since my last operation. Though nothing so defeating to prevent my from returning to work as normal after Christmas. A kind colleague offered me a lift for a while and before I knew it, I was back to riding my bike to work again. That first cycle was difficult. The first gym class was worse! Where had my fitness gone?

I vividly remember fighting to the end of the 11minutes it took me to run 1km on a treadmill. After all the effort I’d been putting in the gym before my operation, my PB’s seemed like they’d belonged to someone else. But I needed and wanted so badly to get back to that level. Every gym weight felt like 10 tonne! I gave up. I’m not a defeatist person, I turned to a new challenge. A year prior my mother had run two 5km races. She is not into exercise and had never done this before. I was 20 years younger and struggled to run 1km; yes I have a heart condition, but so does she! I could do this! (It never once felt like I could). But I did! I trained and I found it boring and difficult but I finished my first 5km park run in 33:25 and I even enjoyed! Or at least I enjoyed it enough to do it again. This time I did a 5km Santa Run in aid of CRY and raised £220 as a result.

I’d go on to do 5km park runs twice monthly, summit Angel’s Landing in Utah, USA in 30+ degrees; climb Croagh Patrick and Culcaigh Mountain at home. And finally after two failed attempts, (one due to weather, one due a shock from my ICD) climb Mount Errigal. By this point I was back attending gym classes and soon to be hitting my late twenties, I began thinking about my ‘before aged 30 bucket list’ – triathlon was still unticked.

Yesterday I completed a novice triathlon! It felt amazing! It was the first time in longer than 12 years where I truly felt the zest for life that I guess I’ve always had but that had somehow got a little dusty. The training was difficult. There were many a days when my heart just could not do it despite having trained harder at other times. These are the days when it’s easy to feel hard done by and get a sense of feeling sorry for yourself. But that achieves nothing. It doesn’t make you feel good mentally or physically. Today is a bad day but this evening or tomorrow will be better.                            

I’ve never spoken publicly about my heart in this way before; but something in yesterday inspired me. After 12 years I wanted to share my story. It’s hard, it really is at times, but that’s a side I only barely let my family see. They know I’m more than my heart condition and I know I’m more than that, even when they have to remind you to think of all that you can do and have done when you’re jealous of their planned Thorpe Park escapades.

Having a heart condition sucks. There will be hard times, but there is also pretty spectacular times. It’s important to just pick yourself back up and let the heart keep beating!

Nicole McShane

  • img_0250
  • img_1177
  • img_4714 (1)

Brugada and me by Laurie Ketley

The 9th December 2016 isn’t a key date for me. On that day, I was with my Mum, Dad and younger Sister, who were finishing up from undergoing their Flecanide Challenges…which all fortunately came back clear, which was a huge relief.

At 18:30 I received a phone call from my Cardiologist, who went on to tell me I had Brugada Syndrome. I heard him conclude that we were to meet very soon and discuss how we moved forward, I agreed, emotionless really and quite matter of fact, I said my pleasantries and put the phone down and that is how I was diagnosed.

I looked at my Dad who I was with (at that time as I was splitting myself between the three) and I just simply said, “I’ve got Brugada.”

I had a few tears in my eyes, but I’m a ‘be strong’ kind of person. (I cried, lots that night though) Then I went and told my Mum and Sister whilst the doctor was there. It was such an odd experience, like a kind of a good result for my family really, an explanation, a strand of hope for a resolution of some kind perhaps. Almost I felt like I should be happy I’ve given my family the knowledge to move forward with this, but inside I felt lonely and a bit numb to be honest.

Why? Because my key date isn’t the date I was diagnosed. My key date is;

18th March 2016

A day that is etched in my memory for eternity. The day my beautiful, funny, vibrant and much loved younger Sister passed away.

Alanna Marie Ketley was full of life, which was stolen from her at the age of 18. When life is supposed to really begin and new paths are paved, hers were cut short. Prof Mary Sheppard and Cardiac Risk in the Young helped with Alanna’s heart personally, in the most needed CRY Centre for Cardiac Pathology and even came to her inquest in Coventry, which we are extremely grateful for.

So although I don’t want to take away the mental and physically daily struggle of having any health condition, in my case Brugada specifically. Personally, my struggle began 9 months prior.

I’ve been under cardiac investigation since 2012, I originally had one or two palpitations a week, increasing over time, until most recently being thousands a day. I remember also being pregnant with my little boy (now 4) and knowing that I was pregnant because of the extra strain on my heart and the palpitations dramatically increased. During this time I saw a Cardiologist who in front of 6 Students laughed, told me I was imagining things as I was probably suffering with pregnancy anxiety and left me on my way. If only she knew, perhaps if she had taken me seriously, done more tests maybe, my Sister would have also found out about our hereditary condition and she may have been alive today, also perhaps not. This is why my family had all their tests done together and at a different hospital and I had mine alone prior as I had been symptomatic and were already known to my Cardiology department, which at time also made me feel a little alone or perhaps isolated.

The tests became more extensive and invasive, albeit necessary and that I am grateful for. They were a little scary, often it’s more of a mental struggle that a physical one. I often put a brave face on, although sometimes it slipped slightly, I have to remind myself that it’s okay to sometimes not be okay, I’m still working on that! I pretty much had every test you can have, the most intrusive being an EP study, but be assured they look after you well.

Fast forward to my Ajmaline Challenge on 6th December 2016, I’m a nightmare to cannulate, so three different Doctors and 9 attempts later I was good to go! I kind of knew I had Brugada Syndrome straight away from the look on his face and the probable regret of him putting emphasis on how life changing a condition like Brugada could be in the pep talk to my Mum and I beforehand haha! Then there was a little awkward mumbled conversation about there being the Brugada pattern but he wasn’t qualified to diagnose and then he even special ordered me a full English breakfast to my bed?! Winner Winner!

Then 3 days later it was confirmed – partly to my harassment as I partly expected the result.

I’m not sure how I feel about it. Sometimes I feel like a normal healthy 26 (JUST!) year old and the Doctors are loopy, sometimes I feel a bit lonely, glum and the worlds against me. In March I was admitted to hospital after falling unconscious at my Mums, where I was then kept on continuous monitoring on the Coranary Care Unit for a week, which was erm, a bit lonely. Being the youngest by around 40+ years and watching all this poor people who had sustained heart attacks come and go, kind of hit home how serious Brugada is. On March 27th 2017, the day after Mother’s Day, I was fitted with a duel lead ICD and Pacemaker, this is where it gets weird!

So the morning of the 27th the am doctors walked in and announced I was to have my ICD fitted that day! I had initially been told it was expected to be later in the week, panic mode now fully on! My Mum and Sister, Kamarah visited that morning as they were off to the other side of the West Midlands to get Kamarah’s Implanted Loop Recorder fitted. So at that point I decided to keep my ICD surgery a complete secret. To the point that my Nan and Grandad came to visit me as I was being wheeled to surgery by surgeons in scrubs and I was going for an XRay!? I knew my little Sister would need my Mum there with her and also I didn’t want her appointment being cancelled or the upheaval on the family. So logically I decided that I would go at this alone, I remember then saying I was weirdly hyper that day – adrenaline for you!

Sometimes I’m guilt ridden, why did I get to stay alive and Alanna didn’t? I’m older? But I’m overall grateful and thankful. I do think about getting shocked frequently, I think I’m prone to worrying more when I’m a bit poorly, when my hearts playing up a bit, when I exercise in the gym, sometimes I think about putting the emergency stop rope clip attached to my top (which you’re supposed to) just in case I get shocked, fall and then have treadmill burn prints along my face – I’m not dramatic at all, needless to say, I don’t attach said pully cord as I’m 26 and that’s far too uncool. Mature like that too…..But if I was shocked…? Well aren’t I a bit lucky that I get to watch my little boy continue to blossom into a bigger boy.

Now, this is my worry. I worry about my little boy, Harlan. I often have nightmares. In fact pretty much every night. He has a 50% chance of having Brugada. It’s literally like flipping the coin of life. Mornings are the worst if Harlan has decided to sleep a little longer. Alanna was found in her bedroom you see, so I constantly worry that I will find Harlan the same way. But we will cross every bridge as we come to it. We are best friends my boy and I, a strong unit and for as long as we can be we will remain that way. If he was ever diagnosed, I honestly and truly don’t know how I would cope with that, but as with everything, I guess you just do.

I’m currently on 10mg of Bisoprolol. I find I’m constantly tired, drained and like I’ve never slept enough, my hair falls out too, that’s not very ideal now is it!? But I go to the gym and lift weights three times a week, I run 2.5 miles beforehand. So keeping an active lifestyle is important for me mentally and physically. Other than the big BS and Pacemaker my life after diagnosis hasn’t really altered because I haven’t let it! I do feel a bit like a loner in my family, although everyone has their own things to deal with and very similar they may be, they’re still not the same. The reality is, if I had been diagnosed with this prior to Alanna passing away, this diagnosis would have felt very different to everyone, myself included. It would have been a big thing, serious and important. I think I probably get a little bit less support now than I perhaps would have before, because that would have been the most heart breaking news our family had to deal with. It’s not now, for them or me. Sometimes I feel that I do have to deal with it all alone as I know that my parents are grieving their most horrendous and life altering loss that I don’t want to burden them with my problems, my Sisters are also the same. So I just keep quiet and I don’t really mention it. I also feel bad that my Sisters don’t have answers they perhaps want or need, so I feel like because I have an ICD and a strict diagnosis I am almost rubbing it in. It’s a bit strange. I think our family is struggling, with one thing after another so we just muster through by not talking at all about personal feelings.

This isn’t designed to be a negative or a morbid post, I’m just trying to be factual and honest, sharing my story, which is personal to me. I’m lucky to be here and I’m so thankful to the brilliant care I’ve received from my hospital, University Hospital Coventry and Warwickshire and the unbelievable support we have been able to access from Cardiac Risk in the Young.

CRY provide an abundance of support should you wish to seek it. I utilised the Sibling Counselling phone calls which allowed me to speak honestly and openly in private to a person who can appreciate the pain of losing a loved one and my lady could also appreciate the reality of diagnosis post loss too which helped me massively. I have recently raised £1,630.00 for CRY, alongside putting their charity link on the well-known Wolf Run website and I aim to raise a lot more in the near future.

I do live everyday now with a ‘life’s too short’ attitude. Book that holiday. Don’t text that Ex back! Educate yourself. Do things for you and hey, be a little bit selfish. Life’s a gift and regardless of your circumstance, illness or situation know that there is always someone around to listen or to just be there. That you’re special, wanted and unique. I might not be wearing your shoes, lived your experiences or share your illness, but know that you can work through it, against it or perhaps even with it.

“A candle loses nothing by lighting another candle”

Laurie-Elizabeth Marie Ketley

Remembering  Alanna Marie Ketley 11.09.1997 – 18.03.2016

  • 3
  • 4
  • 1
  • 5
  • 2

I thought I had a flu but then I suffered a cardiac arrest! by Jake Fordham

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.

  • Brugada

Positive screening story of Tommy Whitnall, Tonbridge Angels’ centre forward

Watch how screening helped, Tommy Whitnall, Tonbridge Angels’ centre forward.

 

Joseph Tanner talks about doing the Brighton Marathon

Joseph Tanner-Brighton Marathon, 2015

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. 11209356_10153171754475860_5516533059050120486_n

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!

1484697_10153171754845860_8010504435826884727_n

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.

  • 1484697_10153171754845860_8010504435826884727_n
  • 11209356_10153171754475860_5516533059050120486_n
  • Joseph Tanner-Brighton Marathon, 2015

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.

Rob Jackson

Living with arrhythmogenic right ventricular cardiomyopathy (ARVC)

I am a 31 year old Sergeant in the Army Air Corps and until recently was a Lynx Helicopter pilot and aircraft commander operating in Northern Ireland. I joined the Army at 18 and have spent the past 12 years living an active, healthy lifestyle as a soldier.

I passed the Army Pilots Course in 2001 and have enjoyed the challenge of flying the Lynx MK7 and MK9 Helicopter. I have served in Germany, Bosnia, Canada, Poland, Cyprus and Northern Ireland.

I am a keen sportsman and have represented my Corps at rugby and windsurfing. I cycled approx 10 miles a day to and from work and considered myself as one of the fittest amongst my work colleagues.

It was Saturday 26th September 2006. I’d been out for a run with my dog Amber in the morning and was heading out for a few beers with the boys that evening. On our return from the club in the car, I found myself sweating and out of breath, it was about 2am. I got home and remember my partner giving me grief for the state I was in. I could feel my heart racing and decided to call an ambulance as I was struggling to remain conscious.

The paramedics arrived in what seemed like minutes and diagnosed me as being in VT (ventricular tachycardia), with a sustained heart rate of 240 bpm. I was rushed to Antrim hospital and was defibrillated back into normal sinus rhythm.

I spent a week in hospital connected to an ECG and showed no further symptoms. I then had an ECHO scan on my heart and exercise stress test on a tread mill and still showed no symptoms of VT. My consultant, Dr Tom Trouton, discharged me with suspected arrhythmogenic right ventricular cardiomyopathy (ARVC) and I was to return at a later date for an angiogram and EP studies. These were both carried out and I was still un-diagnosed. The next step was for me to have a cardiac MRI scan which I would have to wait for 4 months. Luckily the Army paid for my MRI privately at St Georges, which confirmed that I had ARVC.

I was shocked, I considered myself as a healthy and fit guy, with a promising future as a pilot and until that night in September, I’d had no symptoms at all.

On 19th January 2007 I was admitted to the Royal Victoria hospital in Belfast to have my implantable cardioverter defibrillator (ICD) fitted, which will protect me from abnormally fast heart rhythms. I was discharged the same day and am currently on 2 weeks sick leave to recover.

I am slowly coming to terms with the fact I’ll never fly again, or do all the things I’ve enjoyed as a soldier. I am lucky though, I very nearly didn’t make it. I’ve had a lot of help from my friends and family and the Army have re-employed me as an instructor.

I’m already planning a fund raising sponsored walk for the summer to help support CRY. I think their national screening programme is invaluable as most people with my condition are diagnosed when its too late.