Brugada Syndrome Diaries

When thinking about fundraising for a charity, CRY was an obvious choice for me as they’ve done so much for my family and I when we were younger. When I was just six years old and my Brother hadn’t even turned two yet we lost our Dad, he was just 34 years old himself. This was back in 2003 when knowledge wasn’t as advanced as it is now, so his death was classed as SADS, which can be known as Sudden Adult Death Syndrome. Mum’s always have a sixth sense when it comes to their children which is why mine insisted on making sure there wasn’t another reason my Dad passed away so young. My Mum first heard about CRY from the newspaper, she contacted them about our story and we were fast tracked for screenings at St George’s Hospital in London which is where we have remained for annual non-invasive heart tests.

Last year, I turned 20 years old and the clinic decided it was time for me to have an Ajmaline test, which diagnosed me with Brugada Syndrome. Following my diagnosis, I have created a blog called Brugada Syndrome Diaries to write about my story. This was to let others know that having a heart condition can be scary at times but I found strength and comfort in knowing I’m not alone and that’s what being involved with CRY has made me feel.

I contacted my local secondary school in hopes they would be able to facilitate a fundraiser day for CRY. This was about two months in advance of when I was planning the event to happen so there was plenty of time to order posters from CRY and have A LOT of practice tests with the cakes! Luckily my Brother still goes to this school and his lovely head of year got back to me and we began throwing ideas back and forth and it eventually came to a two-day bake sale for years 10 and 11. The bake sale was open to all years, but the awareness video I then created was aimed for the two eldest years. This was because CRY’s heart screening programme is for those 14-35 years old, so this gave me a target audience within the school to work with.

When preparing for a fundraiser such as a bake sale, make sure you practice again and again just to make sure there is no slip ups! It’s a good job everyone in my family has a sweet tooth because I practiced my cakes that many times I don’t think they’ll be eating anymore cupcakes anytime soon! I knew that I was catering for potentially a lot of people so around 40 cakes were made each day I had the bake sale and that is a lot of work to do by myself. So, I recruited some help, one of my friends Natalie who actually attends sixth form at the school and also my Mum, who both iced cakes beautifully and a lot better than I was doing them! Both days I sold out of cakes and to be honest I never expected to sell out completely on the first day let alone both! I did also make a video which was circulated around all of the tutors who were supposed to show it to their group of kids just to raise some awareness for CRY and the amazing work they do. I decided a video was the way to go because it encourages active engagement within that age group, I wanted it to be something they actually paid attention to and learnt from.

For the bake sale to be such a success meant so much to me because I have raised some money for the charity that has done so much for me and my family over the years. I have raised a total of £78.72 which for a local secondary school in a village in the middle of nowhere is pretty good going!

If you would like to read anymore about my story, please feel free to visit my blog via the link to learn more http://brugadasyndromediaries.wordpress.com/

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The price of always being right! by Charlotte Monins

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.

I was right! There was something wrong!

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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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This is a brief outline of how I came to know CRY, join myheart, and join MedicAlert

Cat-Burns-latest-May2015-1024x1024Shortly after university finals in 2010, I had a second ajmaline challenge (drug assisted ECG) in London under Professor Sharma’s team, with the unexpected result that I was positive for Brugada syndrome – unexpected because 18 months previously I’d received the all clear at a local hospital. However unequivocally grateful and relieved I’d been with the negative result, the registrar’s approach and manner had failed to inspire confidence – leading me to undertake the tests again in London and then in turn receive my final diagnosis with Brugada.

Prior to 2008 our family had never heard of Brugada syndrome and I had little knowledge of sudden arrhythmic death syndrome (SADS), let alone appreciated the frequency with which it strikes young adults – plus those of all ages.

That quickly changed when one of my cousins, Ralph, collapsed and died after crossing the finishing line of a half marathon; he was just 28 and had been fit, athletic and healthy all his life. Subsequent testing of Ralph’s immediate and extended family demonstrated a relatively strong inheritance of this cardiac condition.

Between tests for the condition I focused on enjoying university life, studying and seeking out new experiences, including sailing with the Jubilee Sailing Trust – which for me was a challenge due to seasickness, fear of boats and fear of heights. Now I can’t wait to go back.

In 2010, post university, I decided to set myself a new task; and undertaking a physical fundraising event appealed. However, as I’d allowed my fitness to slip following some back problems, it was going to push me significantly out of my physical comfort zone. This, coupled with learning Mum had inherited the condition (meaning I had a 50:50 chance) and the poor attitude of the local registrar, meant I sought reassurance for total confidence and peace of mind, prior to committing to a physically demanding training regime and event.

Professor Sharma, Dr Papadakis and the team could not have been better during the process of my diagnosis with Brugada; and one month later, after having had time to consider things, I accepted the option of having an ICD fitted. Six months after that I received my defibrillator locally, under the care of another professor who has subsequently been fantastic. Not being a straightforward patient at times, I feel very lucky to have benefitted from the expertise and care of two leading cardiology professors.

I received a newer type of device; the subcutaneous implantable cardioverter defibrillator (S-ICD). Implanted under the skin on the left side of the chest, with the electrode tunnelled under the skin, it is less invasive than traditional ICDs. Unlike a traditional ICD/pacemaker scar – with associated visibility of the generator in some people – the S-ICD is mostly unnoticeable; thereby reducing the likelihood of immediate recognition in an emergency, which is what led me to joining MedicAlert.

I rarely ever remove my MedicAlert bracelet, which is very unobtrusive. In the event of injury or illness and if I’m unable to communicate, medical staff who’re trained to check the wrists and necks of patients for medical ID will be alerted that I have Brugada syndrome and the S-ICD. I chose a MedicAlert bracelet for several reasons, including:

• the facility to translate individual data in over 100 languages, 24/7, whether I am home or abroad, via the London Ambulance Service – who are well versed in data protection, patient confidentiality, and communicating vital and sometimes complex information clearly and professionally.

• the ease of amending information, which includes next of kin details, personal wishes and any other information I choose.

• a wide range of jewellery designs, with a choice of styles, materials and prices.

• a flat rate of £30 a year (about 8p a day), which for me is a small price for peace of mind and effective medical attention.

• the Rod of Asclepius is the symbol used and is internationally recognisable.

• flexibility in having ID engraved with condition(s), allergies, devices and medications as appropriate.

Other companies or types of ID provided similar products but with fewer additions. MedicAlert was the only one I found at the time that provided all of the above benefits and as a member for just over 3 years I have always found them efficient and helpful.

Grateful I’ve never had to use the 24-hour service, I have found that wearing my bracelet has been helpful in certain other circumstances… most people haven’t heard of Brugada (or many of the types of SADS), let alone understand it. Therefore, when I’ve had to declare it, in addition to other unusual things on forms for dentists, class instructors, etc, a look of alarm usually appears when I briefly explain. It’s often alleviated when I reassure them I am wearing medical jewellery.

Wearing and keeping my bracelet updated also stops me needing to rely on others. If you ask yourself how many people know, let alone could remember (in what might be a stressed situation for them) important and accurate information about another’s condition, allergy, medication, etc, it is unlikely you would be able to name many. For me, as this list has grown, it would be unfair on whoever might be with me in an emergency. I do have information in my purse/bag most of the time, but this could easily be separated from me.

Since diagnosis, so much is the same and yet so much is very different for a multitude of reasons. The work of CRY is invaluable to ever-increasing numbers of people – from those who have suffered a loss and those who have successfully been resuscitated and/or diagnosed without suffering a cardiac arrest or loss; to those struggling to get diagnoses. Not to mention CRY’s life-saving research, clinics and pathology services; and their bereavement support and myheart networks.

Thank you to all at CRY for the work you do, so many would be lost without it.

MedicAlert is in partnership with CRY, for information on our partnership visit:

www.myheart.org.uk/medicalert

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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!

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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

Sarah Bond

Living with Brugada syndrome

I’m Sarah. In January 2012 I was diagnosed with a heart condition known as Brugada syndrome, something that I have had since birth yet was completely unaware of – living like any other healthy 31 year old woman; going to the gym, work and starting off newly married life with my wonderful husband James. Looking back now it still seems a bit unreal, but I know how lucky I am to have been diagnosed. Here is my story:

Sarah & James Bond“I had just finished a busy and stressful shift at work, I’m a nurse you see, and gone home. I remember being sat with James and feeling my heart start pounding with really strong palpitations, and my chest feeling uncomfortable. I was also feeling faint and looking sweaty. I did not faint and it lasted about 30 seconds which seemed forever. I knew that it wasn’t right to feel like that so we went up to A&E. I had an ECG which the nurse said looked OK and I felt a bit of a timewaster. However, the doctor then came in and that’s when I realised something was wrong with my heart. There were changes on my ECG and I was admitted to a high dependency unit for heart monitoring as he thought I had something called Brugada syndrome. I didn’t understand what or how serious it was at the time, I just got told it can make my heart beat fast and that it was a genetic condition.

After waiting 3 weeks and being monitored, I was transferred to a specialist heart hospital in Manchester where I met with my doctor. I began to realise the seriousness of this condition, and that I would have to have an ICD fitted. I remember feeling quite upset at the time and was worrying about it sticking out of my chest and the scar and how my life was going to change. It was the shock of me being fit and healthy and then this, but I’m glad it has been picked up now.

I had a Flecainide challenge prior to my surgery to see if it would provoke changes on my ECG, which would indicate true Brugada syndrome. I remember feeling very anxious throughout but the doctors and nurses looked after me. I then had my ICD implanted under my muscle, which was a little sore at first, and returned back to work a month later.

Although I had my doctor and specialist nurse, who is brilliant, to give me quite a lot of information and answer my questions, I will be honest, I didn’t really absorb the information and remember feeling fed up and alone the first month I had my ICD.

I went to my heart hospital meeting for patients with ICDs but hated it as they were a lot older than me (around 60-80) and they were feeling sorry for me being young. This left me feeling very isolated.

Through looking on the internet my dad found CRY which I can honestly say has been a huge help with my recovery from being diagnosed and having my ICD fitted. I have gained a lot of information about my condition, what drugs I should avoid and being sensible with exercise, which I am. At first I was worried about having sex in case my ICD went off – you do when you are young!

I went to the myheart meeting and it was the best thing I did. Being able to talk with people my age with ICDs and conditions similar to mine, it was more like chatting with my friends than a meeting and it helped me offload all my worries to people that knew how I really felt.

Life now has changed for the better, I know how lucky I am to be here and how my defibrillator is there protecting me if I ever need it. I also wear my tops and dresses with confidence and feel quite proud of my scar. My only advice is: enjoy life, it’s what you make it!”

YBFIT by Paula Simmonds

Paula topsMy brother died suddenly, aged 31, in Australia. He was very fit and healthy. As a result, my family and I had to undergo genetic heart testing. Some of my family, including myself, were diagnosed with a hereditary heart condition called Brugada syndrome.

Through this I was introduced to Cardiac Risk in the Young (CRY) – who support families affected by YSCD (young sudden cardiac death). I then became a member of CRY’s myheart Network and met other youngsters diagnosed with heart conditions.

After attending myheart meetings and from discussions with other myheart members and the cardiologist, a common theme between members was the limited knowledge on how much physical activity can be done by youngsters who have heart conditions. I decided to become a fitness instructor with an aim to take ‘Exercise to Music’ classes at St George’s Hospital for the rehabilitation of younger heart patients, to help them back into physical activity.

I did my training at YBFIT who supported my goals and aspirations throughout and I passed my ETM (Exercise to Music) Level 2 in June 2013, having exercised regularly at classes before I took my course. Since passing, I have been fortunate enough to share and cover classes of other fitness instructors at my local sports centre to help me practice my choreography and my teaching techniques.

I have also started a ‘Body Conditioning Class’ at our local school on Thursday evenings. This is great fun and attendees have varied fitness abilities. I love teaching classes and have gained so much more confidence in doing so. I dedicated my first class to CRY and donated all fees to them, raising £133.

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