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

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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

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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.

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Living with a Fontan Circulation – Tricuspid Atresia by Jara Weinkauf

Even though there was no history of heart disease in my family and my parents led a very healthy lifestyle, I was born with tricuspid atresia in 1986 in Berlin/Germany.

Doctors noticed that my skin was very blue and something had to be wrong with me.

After a palliative operation as a baby, I had a Fontan surgery when I was four years old to fix the cardiac defect. A Fontan operation was still very new at that time, and the operating surgeon had just come back from the U.S. were he learned to do this operation. If I had been born maybe five years earlier, my chances of survival would not have been as positive.

During my childhood my parents always supported me in anything I wanted to do, but naturally they were more cautious when it came to sports. All I wanted was just to be like the other kids though. Therefore I always tried harder and never really accepted help. It took me a long time to learn that it’s ok to get help or take breaks.

Although I was doing very well during my teenage years and there weren’t any complications growing up, I needed another open heart surgery in 2015, when I was 28. This was to ensure my heart could continue doing such great work it had been doing all along. During an open heart surgery an external tunnel made from Gore-Tex was created to manage the blood flow. During this procedure I was also fitted with a pacemaker to support the heart.

Undergoing such risky operation when you are an adult makes you reflect. I started appreciating my time even more and try to use all my free time to explore, see friends and also connect with fellow CHD patients. I have never let my congenital heart defect stop me from creating a career, do sports, travel or have a relationship. It is important to me to advocate for an active life, to show patients, carers, supporters, family members an so on, that life is still fun and doesn’t have to be all worry.

I started getting more involved in the CHD community and love meeting fellow patients. Moreover I have launched a blog, Optimistic Heart, where I am advocating for an active life despite a severe cardiac condition. Facing challenging topics as pregnancy, it feels great to hear other stories, share experiences and knowing I’m not alone with my condition.

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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!


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.

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  • Joseph Tanner-Brighton Marathon, 2015


It is very important that you follow the advice of your cardiologist regarding exercise!


If you have been diagnosed with a cardiac condition and you have been told that you should not take part in sport anymore, it is very important that you follow your cardiologist’s advice. This is because some cardiac conditions can be made worse by exercise.

Watch CRY’s myheart cardiologist, Dr Michael Papadakis advise patients who have been told to limit exercise but who don’t want to below.

Watch CRY myheart cardiologist talk about the level exercise becomes unhealthy.

However some people who are diagnosed with cardiac conditions may still able to exercise, but at a gentler level than before. This was what happened to Joseph.

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


Hayley Brown

Living with long QT syndrome

I was 19 years old and had just failed my second driving test when my first and only attack happened. I ran through the garden and into the house where my mum was waiting nervously. I told her that I had failed and then went on to tell her I didn’t feel very well, but I collapsed and lost consciousness so never got to finish my sentence. 

I remember waking up in the kitchen and hearing my mum on the phone to someone. I had lost control of my bodily functions and because I had fallen on my left side, my arm was tingling.

The next thing I remember is my dad arriving and I could hear him shouting my name as he ran down the garden path. I was rushed to hospital and had several tests done but I was allowed home that night.

Initially the doctors thought I was epileptic and I spent months seeing neurologists. Its fair to say that this was an extremely frightening time for me and my family. However, the results of numerous scans was that my brain was fine – but my ECG from when I was originally taken in didn’t look right.

I was then referred to John Radcliffe hospital and was admitted for the day for several tests, including ECGs, adrenaline tests, scans and the dreaded treadmill test! They diagnosed me with long QT that day and I’d like to think that I took the news relatively well. I was told that my condition is hereditary and that I had had it since birth. I was put on beta-blockers and cautioned to not over exert my body. I have since had genetic counselling to see where the condition came from, but it came back as inconclusive.

Since then I have had no further attacks. I maintain a healthy lifestyle and I am a keen kick boxer. I climbed Snowden for charity last year and I was determined that long QT wouldn’t stop me reaching the top of that mountain!

I was terrified when I was diagnosed that life would never be the same again and I hope my story will help anyone out there who feels that way at the moment. Overcoming this diagnosis has been one of the hardest but most rewarding things I have ever done and I am living proof that this doesn’t have to rule your life. You take your tablets, take life one step at a time and make the best of the hand you’ve been dealt and it’s not as bad as you think.

Fraser Thomas

Living with hypertrophic cardiomyopathy

I am one of the few lucky parents as my son, Fraser, survived a full cardiac arrest while playing football last year. He had no previous symptoms or illness and was saved thanks to two medical students who happened to be playing football that day and also a mobile defibrillator that had recently been acquired by the sports club.

In September 2008, Fraser decided to try out for the Glasgow University football team at the Garscube Sports Centre. He went along hoping to use this as a good way of keeping fit while studying at University.

Fraser did not know anyone, least of all the two people who were later to save his life. As luck would have it, Gary and Devin were also playing football that day and came to Fraser’s aid immediately when he collapsed while in the middle of a match. Gary and Devin, who were 1st and 3rd year medical students, realised right away that Fraser had stopped breathing and had no pulse. They took turns in administering CPR.

Another fortunate turn of events revealed a portable heart defibrillator was in the first aid kit at the sports centre. Gary and Devin decided to use it, despite never having used one before and miraculously Fraser’s heart started beating again.

Both the boys followed Fraser in the ambulance to make sure he was alright and were allowed to see him briefly before going on their way.

By the time my husband, Fraser’s brother and myself arrived, Fraser was awake but confused by what had happened. We then learned the devastating news that Fraser suffers from hypertrophic cardiomyopathy.

After following a recent story of the professional footballer Phil O’Donnell’s tragic death, we realised how fortunate we were that Fraser had survived. Fraser is now on medication and has had an implantable cardioverter defibrillator inserted into his chest. He will never play football again but that is a small price to pay for being alive.

We spoke to Gary and Devin, by telephone, and Fraser met up with them when he returned to University to thank them personally. However, now that the shock of what has happened to Fraser has started to ease, we are aware of how lucky we are that so many people have helped Fraser.

Among many, the foresight of the staff at the Garscube Sports Centre for having a defibrillator and the wonderful staff at the coronary care unit in the Western Infirmary, who treated us with such kindness at a difficult time.

Gary and Devin were heroes that day for realising so quickly how ill Fraser was and for having the courage to not only administer CPR, but to have a go at using the defibrillator for the first time. There is no doubt that they and the defibrillator saved Fraser’s life.

Kathryn Thomas

Julia Hubbard

Living with right ventricular outflow tract ventricular tachycardia (RVOT-VT)

I have represented Great Britain in Bobsleigh since 2006 and In October 2007 I crashed in a race and sustained fractured vertebrae and tore all the ligaments in my thoracic spine. I was out of the sport for the rest of the season while I recovered and had rehab.

In April 2008, a month after returning to training, I began to feel dizzy, faint and breathless while I was training.

My heart would feel like it skipped a beat and then race out of control – over and over again while I trained. I went to the doctor who did a basic ECG and told me it was stress and signed me off work for a couple of weeks.

Initially I was only getting symptoms in the gym and track so I was sure it wasn’t stress. I called my team doctor who immediately called me to the Olympic Medical Institute for an exercise ECG. I met Greg Whyte and some of the CRY team and less than two minutes into the test my symptoms started and the test was suspended and I was rushed straight to hospital for an echocardiogram. A week later I was back in London for more tests and an MRI scan. My ECG and symptoms were consistent with two conditions – arrhythmogenic right ventricular cardiomyopathy (a condition that can cause young sudden cardiac death) and right ventricle outflow tract – and they had diagnosed which I had. I was diagnosed with right ventricular outflow tract ventricular tachycardia (RVOT-VT).

The treatment was a lifetime on beta-blockers, which pretty much ended my chances of continuing with competitive sport! As soon as I took the beta-blockers I felt great – my symptoms stopped and I could start to train. I just managed to retain my place on the GB team for the 08/09 season but over the next few months my fitness just got worse and worse. I ended up as a reserve for the season and every time I tested my power, speed and strength, my scores were declining at an alarming rate. In March 2009, I came off the medication as I was so unhappy with the effect it was having and my symptoms returned even more severe than before. I decided to try and live with it, which turned out to be impossible.

I was exhausted all the time – sleeping 10 or 11 hours a day – and at its worst I couldn’t even walk without feeling faint. I couldn’t complete a full training session and was devastated, I just felt ill all the time. I lost my place on the GB team and with it my health insurance, so CRY stepped in and put me in touch with Dr Sharma [now Professor Sharma] who has been monitoring me ever since.

He has explained the condition and the triggers which are not completely understood, but for me appear to be a combination of adrenaline, exercise and stress. RVOT-VT is caused by an extra natural pacemaker that starts firing as well as the main pacemaker and causes the heart rate to shoot up and all the symptoms I experience.

In December 2009, as mysteriously and suddenly as my symptoms started, they virtually stopped. I have been able to start training fully again. I decided to compete in Figure Competitions (a type of women’s bodybuilding) as I needed a goal to aim for and I have placed second in three competitions this year and qualified for next year’s British Finals.

My goal is to compete internationally in 2011 in Figure Competitions. I have also decided to train for the World Master Athletics Championships in 2011. In November this year I was able to return to international Bobsleigh, competing in a European Cup race and achieving a start placing top 10 in the field, which I was really proud of considering I never thought I’d race for Team GB again!

I know my symptoms can return at any time so I am enjoying feeling well and making the most of being able to train again. I also now have the support of CRY and Professor Sharma, so as soon as the symptoms return to the severity I had before, I will have a radiotherapy ablation to cure the problem.

Although the thought of surgery is a bit scary, just knowing that there is a cure if and when I need it, means I don’t have to worry any more. In the meantime I fully intend to make the most of every opportunity I have!

In February 2010 I competed in the British Masters Indoor Athletics Champs and won Gold in both the 60m and 200m for my age group (W35). Now I’m aiming to compete at the World Masters Athletics Champs in the summer – as long as the condition doesn’t get worse I think I could do well! It’s funny, a year ago I didn’t think any of this could be possible and although I know I could get ill again, I know it can be treated so I’m not worrying about it! Just enjoying life and never taking my health for granted any more – just making the most of every day!

Russell Goodman

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.