myheart Newsletter 2017

myheart Newsletter 2017

News and Events | Raising Awareness | myheart My Story

In this

Newsletter

Tel: 01737 363222

News & Latest Updates

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Meetings

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Research News

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CRY Events

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New YouTube Channel Launched

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myheart My Story

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Email: myheart@c-r-y.org.uk

@myheart_UK

Websites: www.myheart.org.uk

myheartnetwork

myheart Newsletter 2017 Welcome from

Inside the newsletter Welcome News & Latest Updates Meetings Research News CRY Events Youtube Channel Launch myheart My Story

2 3 8 10 12 13 14 The Front Cover

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For more details regarding the events shown on the cover, please turn to the corresponding page references below. Images are listed in rows from the top left:

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1. Brugada and me by Laurie Ketley P26 2. Running the Virgin Money London Marathon for CRY by Beth Mahon P3 3. The 8 Times I “Died” by Jamie Poole P20 4. Raising Awareness and Funds During the CRY RA Week by Stephanie Young P6 5. CRY Parliamentary Reception 2017 P12 6. Walking Hadrian’s Wall by Zenia Selby P5 7. CRY Heart of London Bridges Walk 2017 P12 8. New YouTube channel launched P13

Kanika Bhateja myheart Coordinator Email: myheart@c-r-y.org.uk I am delighted to announce that new videos on the myheart website by our consultant cardiologist, Dr Michael Papadakis, and by young people diagnosed with a cardiac condition, have had a positive impact on raising awareness about CRY and myheart.

In 2017, 72 more young individuals joined our support network. We are grateful to everyone who raised awareness or funds for CRY through collection boxes, fundraising events, donations or by distributing posters and leaflets.

We also had a successful year in terms of the website, with many of our members using the private area to pen their thoughts and experiences of living, or getting diagnosed with, a cardiac condition. myheart also launched its very own YouTube channel which has many videos which will help to answer your frequently asked questions.

CRY and myheart were also in the news in 2017 after Frank Arentz, a 16-year-old diagnosed with hypertrophic cardiomyopathy (HCM), wrote his story for the myheart website. The media picked up his positive take on his diagnosis and subsequently ITV Wales and local newspapers interviewed him. His story was also featured on BBC Stories towards the end of the year.

Also in 2017, the TV show Eastenders featured a storyline about Brugada syndrome which prompted some enquiries about the support network.

Head Office: Unit 1140B The Axis Centre Cleeve Road Leatherhead KT22 7RD No part of this publication may be reproduced, stored in a retrieval system or transmitted in any form or by any means; electronic, mechanical, photocopying, recording or otherwise, without prior permission of Cardiac Risk in the Young (CRY).

CRY welcomes all content for the newsletter but reserve the right to edit when necessary and to withhold publication. Any opinion or statement by the author of any article or letter published does not necessarily represent the opinion of Cardiac Risk in the Young (CRY). Articles pertaining to health-related topics are for information only. Readers should obtain advice from their own practitioner before attempting to diagnose or administer any medication. Mention of any products or procedure should not be considered an endorsement for said product or procedure.

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During CRY’s Raising Awareness Week we appealed to the myheart network to help us to raise awareness on social media by using the hashtag #myheartmystory and share their story of being diagnosed with a condition. We were very pleased to have a great response to this initiative which helped to raise awareness of cardiac conditions in young people.

As the coordinator of CRY’s support network, it is my responsibility to put this newsletter together and to bring you all the relevant news. Please do not hesitate to contact me by emailing myheart@c-r-y.org.uk or by calling me on 01737 363222 if you find anything amiss, or if you have any views to improve our support network.

Thank you for all your help!

myheart newsletter 2017

News & Latest Updates Running the Virgin Money London Marathon for CRY by Beth Mahon I still can’t quite believe I’ve run a marathon! But, I did it!

In October 2015, I had two big things on my mind. I was awaiting the date for my electrophysiological study to both confirm the diagnosis of my Wolff-Parkinson-White Syndrome and to hopefully cure me; and I was also awaiting the results of the Virgin London Marathon Ballot for 2016.

I was one of the very fortunate people to be accepted in the ballot for the London Marathon but then came the date for my operation – January 2016. Just three months before the marathon when I should be well into my training plan. I waited until I had the operation and unfortunately, I was just too poorly following it to even contemplate running the marathon. The recovery took longer than I had anticipated and it was during this time I found CRY and was reassured by other members that the feelings and discomfort I was experiencing were normal. I reluctantly deferred my marathon place to April 2017 and allowed myself to recover properly without the stress of thinking about marathon running!

As the year went by and I began to recover I hit another hiccup with my training, developing an acute shoulder and rib injury that left me unable to run, exercise or even drive for several months. During this time, my husband Chris took up running and he decided he would love to run the London Marathon too.

When the ballot results came out he hadn’t got a place so we decided that as CRY had supported me so well it was time to give something back and Chris applied for a charity place with CRY. We were thrilled when he was allocated a place and we both pledged to raise £1,900 between us.

We set up a fundraising party and bombarded Facebook with all our training runs, information about the charity and emailed colleagues and friends asking for support.

Incredibly, we raised of £4,200 in total! It was such a wonderful feeling to be able to give so much back to a charity and know that other young people could gain a diagnosis much earlier than I did.

We are both very determined but neither of us are particularly fast or graceful when it comes to running. This marathon really was the biggest challenge we had ever undertaken. We had trained religiously, giving up our Friday evenings to run miles after 40-hour weeks in work. We managed to get to 21 miles in training and even completed a gruelling 20-mile trail run in torrential rain as part of our preparations. Marathon weekend arrived, we were as

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prepared as we could be and both terrified and excited in equal measure.

We travelled to the expo on the Saturday to collect our race numbers, and we were fortunate enough to meet Paula Radcliffe and have her sign our race numbers. Sadly, I lost my gran a few years ago and she was a huge fan of Paula – it was wonderful meeting Paula the day before such a huge challenge and knowing how impressed and proud my gran would have been. It was an emotional moment.

The next morning, we set off for the start. As I had a ballot place and Chris had a charity place we had to start in different pens – this meant running the first four miles separately. Luckily, I met up with a friend in my start pen and we ran those first four miles together.

As I crossed the start line, I looked to my left to see Prince William, Prince Harry and Princess Kate waving at us – I jumped up and down and waved like a crazy lady and Prince William gave me a beaming smile and a wave right back. I knew at that point the day was something I was never going to forget.

I got to mile four and stepped to the side to wait for Chris, unfortunately he had started 20 minutes later than I had so I had a long wait. I cheered on the other runners and soaked up the atmosphere. It was incredible. I spotted Chris running towards me, we said our hellos and as we headed off on our journey together shared our stories from the morning.

Running past the landmarks of London was incredible – rounding the corner and heading towards the Cutty Sark was fabulous, the crowds roared and people were already handing out sweets and shouting our names. I felt like a celebrity.

The miles passed by quickly as we approached mile 10 where I knew my parents and brother-in-law were waiting.

On spotting my mum, I burst into tears, as did she, as the enormity of what I was taking part in and achieving took hold. I just couldn’t quite believe I was here. My parents have always chuckled at my lack of sporting ability and I think they are still in shock that I actually did it! They had the most amazing experience watching us!

We made it to the halfway point as we crossed Tower Bridge. Once again, the crowds were phenomenal and we spotted a TV camera above us – we gave it a wave – not thinking much of it, only for me to be bombarded with messages from friends at home saying they had spotted us on the TV! The support of the crowds is like nothing I have ever experienced; I couldn’t believe we were already at halfway.

I was feeling strong and enjoying every second.

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News & Latest Updates As we approached Canary Wharf at around mile 15, Chris began to struggle with cramp in both of his thighs. Luckily, there were St John Ambulance medics and physios every few miles and we stopped a number of times for Chris to receive treatment – this was a godsend and something we didn’t know was available on the course. We can’t thank the teams who helped Chris enough. From mile 15 onwards, it became a real struggle as Chris’s discomfort worsened. We kept grabbing sweets from the crowd and I did my best to continue to soak up the atmosphere whilst trying to support Chris through a difficult time.

We saw family and friends a few times again on the course – having them there was such a boost, especially as the blisters set in and the pain levels increased. Our pace slowed but our determination didn’t, despite everything we kept on going. As we headed through the park on the approach to mile 26 and Buckingham Palace it hit me again what we had achieved, we were now minutes from finishing the London Marathon! We crossed the finish line with the biggest smiles on our faces and stopped to hug and congratulate each other. I then promptly burst into tears seconds after receiving my medal! My phone rang within minutes to the sound of congratulations from my parents and then we hobbled away to collect our belongings.

At the end of the run, we were exhausted but through the crowds we spotted a wonderful man in a CRY T-shirt beckoning us over. Once again, we were congratulated, he took our belongings to carry them for us and took us to some seats and provided us with food and drinks. Several volunteers were at the greeting point and they told us how they support the charity as they had lost children to various conditions. Sitting and listening to their experiences and the support CRY has given them made it really hit home how important it was for us to raise this money for CRY to support other families in similar circumstances. We may have had a difficult 6 hours completing the race but this is nothing compared to the troubles they have been through in their lives.

We climbed into a minibus and were taken to a hotel where we received a round of applause and an additional medal and had our photos taken. We were then able to have a full body massage – which was needed – and a warm shower, hot food and of course, the obligatory glass of prosecco to celebrate. We were exhausted but on such a high after a phenomenal day.

believe it and thought it must have been a personalised photo until our friends all contacted us to tell us we were famous!

What a phenomenal experience. We have already entered the ballot for next year. I’ll just try not to think about the 5-month training plan leading up to it! Thank you to Cara and the rest of the CRY team who supported us so well throughout our fundraising and on the day.

You were all brilliant and it was an honour to run for you after everything CRY has done for me.

CRY Zumba class by Katie Welsh I’m a 23-year-old Zumba fitness instructor who was recently diagnosed with a heart condition. I knew exactly what I could do to show my “thanks” and appreciation towards CRY and their support through the myheart network. On Thursday 23rd March 2017, the ladies of Harrogate got their trainers on and took part in an hour of intense Zumba. We raised a total of £300, along with lots of awareness for CRY. I feel very passionate about raising money for CRY now and in the future to encourage early diagnoses, so that hopefully one day everybody can be as lucky as me.

The following day, as we returned home from the train station, we received a congratulatory email from the organisers of the Marathon. The email had been sent to all 37,500 finishers. And whose finish line photograph had they decided to use? Ours! There we were, arms in the air, CRY T-shirts on show to the world and now 37,500 people had a copy of the image! WOW! We couldn’t actually

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myheart newsletter 2017

News & Latest Updates Afternoon Tea by Sinead Watts In 2014, my brother suffered a cardiac arrest. He was 21 at the time. Luckily, he was in the car with my dad who rushed him to the hospital and they were able to resuscitate him (twice).

Following many tests, it was discovered that he had Brugada syndrome. As with most Brugada diagnoses, he had an ICD implant inserted which monitors heart movements and will kick start the heart if required.

Similarly to most of the stories we have read in CRY resources, our immediate family also was tested for signs of Brugada. Mum, Dad and I all took the ajmaline test in October 2014. Mum and Dad obtained negative results and showed no signs of Brugada, however I was not so fortunate. Towards the final stages of the test, my ECG reading (in one lead) showed signs of Brugada. I have no symptoms and do not take any medication because of this diagnosis; I do, however, avoid prohibited drugs and remain vigilant of any warning signs.

worth it. In total 100 people attended the afternoon tea and we managed to raise a staggering £2,000 through tickets, donations and raffle tickets.

Without the support of our friends and family, French Village Bakery and Henderson’s Group, the event would not have turned out as successful as it was. It was encouraging to know how many people wanted to support this good cause and, more importantly, learn a bit more about the charity and the impact of heart conditions.

Walking Hadrian’s Wall by Zenia Selby When I was diagnosed with Wolff-Parkinson-White syndrome in the middle of my final exams for my Classics degree, Cardiac Risk in the Young helped me through that difficult time. They supported me all the way through my ablation operation and through the additional tests in the year after that, which finally diagnosed me with sinus tachycardia.

Now that my heart is (relatively) stable and my life is back to normal, I want to do something big to raise awareness for the amazing work that Cardiac Risk in the Young does.

What better way to do that than combine my knowledge of ancient history (like Hadrian’s Wall) and a big physical challenge?

Therefore, my partner and I decided to walk the 70 miles along Hadrian’s Wall in July – and we recorded a mini documentary about it too. It’ll be on the myheart YouTube channel soon, so we hope that when you watch it, you’ll enjoy this light-hearted insight into the ups and downs of our fundraising adventure!

The Walk Following a search for a charity or support network which primarily focused on young people my brother and I came across CRY. We found that many well-known organisations focused on age-related heart problems and some had little or no knowledge of rare conditions such as Brugada. When we discovered CRY it was comforting, both for our family and us. We have found the newsletters, in particular the members’ stories and the information in the members’ area, to be a good resource and reassurance that there are others who have been through similar experiences.

It is now 3 years on and following discussions with our family, we felt it was important to give something back and to do what we could to help CRY to continue to provide as much support to those who need it. An initial idea of a family-only fundraising event quickly evolved into an afternoon tea in the local church hall. We sought donations from local businesses who were very willing to supply buns, tray bakes, tea and coffees. We spent a lot of time organising and preparing for the event, however it was all

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We bounced out of the door bright and early on the first day, full of energy and ready for the challenging 20 miles ahead of us. But by the time we’d been walking for six hours, and still had another eight miles to go, morale was getting low and my partner’s blisters were getting bigger.

The next day we thought we’d have it easier – our route was just 15 miles that day – but I hadn’t checked the contour lines. And to top it off, it started raining just as we began to climb the undulating crags that give the most haunting and beautiful views of Hadrian’s Wall. PLOP! I slipped over and fell hard on my bottom. The ground was wet and cold on this side of Hadrian’s Wall, and it had been raining solidly for six hours. My partner handed me a slab of Kendal Mint Cake, and as I munched it, sniffling, a hearty Hexham native strode past us. “Having a domestic on the Wall, are we?” she joked, and I forced a smile. We were ten miles in to our second day of our walk along Hadrian’s Wall, and had another five to go before we could get to our safe, warm, dry hostel. My partner’s feet were

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News & Latest Updates covered with blisters and mine were soaked through.

But a few minutes later, the drizzle lifted and the wind dropped, and we were granted one of the most iconic views of Hadrian’s Wall: Peel Gap. The Wall snakes along dramatic ridges, revealing glassy lakes below and the remains of mile castles peeking through the trees. The wild, wet, blustery view made me remember why we were doing this gruelling trek from Carlisle to Newcastle: in aid of Cardiac Risk in the Young, and the support they gave me throughout my WPW diagnosis and operation.

The third day dawned bright and sunny. Which was just as well, because another 20 miles awaited us! We got through it by narrating all three Lord of the Rings films to each other, complete with scarily accurate impressions of Golem…

about CRY. We had posters and leaflets all around the school. I sold merchandise from my classroom all week, at playtimes and lunchtimes, and I managed to sell every last item! On the Thursday, we had a Dance Along in the yard, led by another teacher, where parents and children all joined in. We had a big raffle, where the top prize was a signed Newcastle United ball, and on the Friday, we had a non-uniform day where we all paid £1 to wear something red and we had our MASSIVE cake sale! In total, we managed to raise £649!

Documentary on ‘Cardiac Disease in Sport’ by Freddie Nicholas Freddie Nicholas, a third year journalism student at the University of Kent, has made a documentary about cardiac disease in sport which can be watched below. It features CRY supporters including myheart member, Tim Butt.

By the time we hobbled into Newcastle on the last day, we’d given Hadrian’s Wall everything we had. It was much tougher than I had expected, but looking back I am so happy to have completed the challenge!

The adventure, which also featured a friendly quantity surveyor called Alan, an adorable baby goat and a lot of singing, raised over £350 for CRY. I wanted to combine my efforts to support CRY with something I really love, and I’ve been fascinated by Hadrian’s Wall for years. Despite the difficulty of the terrain and the long, long days and the sore legs and sore feet and sore shoulders, it was a real treat to walk alongside this amazing, iconic structure.

Raising Awareness and Funds During the CRY RA Week by Stephanie Young

Million-metre Challenge by Tony Eames Tony Eames, a myheart member with long QT, set himself and his rowing machine a challenge! After carrying the Paralympic torch during the 2012 games on behalf of CRY, he wanted to give something back to the charity.

Tony said: “I have a bucket list of experiences, challenges and personal development initiatives that I have achieved and want to complete as a result of my early years.

During the week of 20th – 24th November, Forest Hall Primary School held a whole fundraising week for CRY. We are a small school, with less than 200 children, and everyone got involved! I am a teacher there and the children loved the whole week! We started our week with an assembly about CRY and why we were raising the money. I told the children about my cardiac arrest, pacemaker implantation and explained a bit about long QT syndrome. The assembly also included lots of information

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myheart newsletter 2017

News & Latest Updates “The Million Metre Challenge (one million metres, 621 miles, or 1000 kilometres) is one of those items on the list!

Since becoming involved with CRY, I’ve been encouraged to tell my story, letting other young people who might be going through the same experience know that they are not alone; help and support is available along with the opportunity to make a difference to others.

myheart members at the One Show

“The aim is to take each leg of the 621 mile journey before breakfast, even setting my alarm for 4:59am!”

On Monday 29th May, CRY Patron John Barrowman MBE was a guest on The One Show to promote his new book. As John is a Patron of CRY the BBC One programme contacted CRY to offer the opportunity for some of CRY’s supporters to be in the audience to watch the show being filmed live. CRY supporters created a guard of honour for John’s entrance. Twenty four CRY supporters, including a number of myheart members attended the recording.

To read more about Tony’s challenge and follow his blog please visit his website here: http://bit.ly/2tocAjR

New myheart Leaflet

James Bailey’s video about doing the London Marathon for CRY I was diagnosed with Wolff-Parkinson-White when the CRY team visited my school to carry out ECG tests on students.

I signed up to be checked out, not expecting anything to be wrong, but was subsequently told I had this potentially life-threatening syndrome. Following the diagnosis, I had to give up football and take medication for a few months.

However, fortunately I then had an ablation operation and shortly after was able to get back to full health.

Ever since the diagnosis I’ve tried to support CRY whenever I can, as I’m forever grateful for their work and support, and I decided that I would run the London Marathon in aid of them. Running a marathon has always been a ‘bucket list’ aim of mine, and after the diagnosis there was one point when I thought I would never be able to run or play sport again, so it felt brilliant to cross the line after 26.2 miles wearing my CRY vest.

I would definitely recommend the Marathon experience to anyone who wants to run on behalf of CRY. Not only will you help raise lots of money and awareness, but the day is truly great fun. Just be prepared for the pain the next morning!

James recorded a promotional about his London Marathon 2017 run. The video can be viewed here: http://bit.ly/JBLMVD

We are excited to announce that we have redesigned our myheart leaflet to include the latest information on the support we offer for young individuals with a cardiac condition.

These new leaflets were sent to the list of hospital contacts that was very kindly compiled by CRY representative and member of the myheart network, Cat Burns.

If you would like copies of these leaflets to display in your local GP surgery or in your local hospital in tandem with your next appointment, please request the leaflets by emailing myheart@c-r-y.org.uk.

ICD Patient and Family Support Day, UCL Institute for Child Health CRY was very kindly invited to hold a stand at ‘GOSH ICD Family Day’, an annual event, organised by Great Ormond Street Hospital, held at the Institute of Child Health in London on Saturday 4th February 2017. Kanika Bhateja, CRY’s myheart coordinator, attended the event.

Young pacemaker and ICD patients who go to Great Ormond Street Hospital and their families attended the event. The event – with a combination of workshops, discussions, speeches, training and games – enables patients and their families to meet each other and provides useful information, an enjoyable experience and perhaps even new friendships! Various charitable organisations, including CRY, were invited to hold a stand at the event. This gave the attendees at the event an opportunity to speak to representatives of these charities and the services and support they offer for ICD and pacemaker patients and their families.

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Meetings National myheart Meetings June 17, 2017 The first national myheart meeting of 2017 was held at Friends House, Euston with 10 people registering to attend.

CRY’s myheart consultant cardiologist, Dr Michael Papadakis (former CRY Research Fellow), offered the opportunity for those attending to informally discuss any of their medical queries; and attendees also had the opportunity to connect with peers.

November 24, 2017 The second national myheart meeting was attended by 17 young people living with cardiac conditions.

Meetings are free to attend and provide an opportunity to meet and discuss experiences in an informal but supportive environment.

There is a Q&A session with CRY myheart cardiologist Dr Michael Papadakis, who specialises in dealing with young people diagnosed with one of these complicated conditions.

There is also an introductory session with CRY’s cardiac nurses and sometimes there are guest speakers.

In 2018 the meetings will again be held at Friends House, which is located directly opposite Euston Station, and just a 10-minute walk from King’s Cross and St Pancras stations. People attend these meetings from all over the UK. CRY will cover reasonable travelling expenses on submission of receipts after the event.

The day began with an informal chat with cardiac nurses Amanda Potterton and Polly Castelo, followed by a chance for everyone to introduce themselves and share their experiences.

After lunch, Dr Michael Papadakis offered the opportunity for those attending to informally discuss any of their medical queries.

Dates and information about future meetings will be added to the myheart website here: www.myheart.org.uk/ meetings-2.

Information on meetings Currently myheart holds meetings twice a year in central London .

Anybody with a cardiac condition between the ages of 14 and 35 can come to the meetings if they: • Have an ICD or have been offered an ICD

Young people who have suddenly been diagnosed with a cardiac condition often request for us to put them in touch with others in similar circumstances. myheart meetings are an informal way of meeting other young people diagnosed with a cardiac condition, so that young people feel less alone with their diagnosis.

• Have suffered a cardiac arrest • Have been diagnosed with an inherited or potentially inherited cardiac disease

Meetings are also a great way to get answers to medical questions which attendees may not have been able to ask at their hospital appointments.

Given the complexity of some conditions, we recognise that there will always be a need to consider some cases on an individual basis.

Support can be gained through meetings and by talking to others in a similar situation, hearing the different ways they have coped and discussing any issues that have arisen since their diagnosis.

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If you are interested in attending or would like more information about CRY’s myheart meetings please call CRY’s myheart coordinator on 01737 363 222 or email myheart@c-r-y.org.uk.

myheart newsletter 2017

Meetings Feedback about myheart meetings We understand that sometimes people can feel anxious about what to expect before they attend their first myheart meeting. Some members of the myheart network have kindly written about their own experiences of the first time that they attended a meeting, to share with other members who may be considering attending for the first time.

Below are extracts from some of the write ups that have been sent to us. To read all of the accounts that have been shared, please visit www.myheart.org.uk/feedback-aboutmyheart-meetings. Thank you to all who have contributed to this webpage. If you have attended a meeting previously and would like to share your experience for the benefit of newer members of the myheart network who may be considering attending for the first time, please do not hesitate to email myheart@c-r-y.org.uk.

When I was first told that I needed an ICD implanted I was devastated and didn’t have a clue what to expect from the future. After Googling (a lot) I came across CRY and gave them a call. I was signed up for the myheart meeting which was to be a month later. I was very apprehensive about going as I didn’t know anyone or what to expect.

When I arrived I followed the signs and headed for the meeting room. There was already another lady sitting down and a CRY representative welcomed me and ran me through what to expect. Straight away I felt more at ease and started to look forward to the rest of the day. There were only 4 of us at this meeting so it was quite quiet but I had time to ask questions and actually found out loads of useful information from others that were in similar situations. Even silly things such as using roller coasters or travel insurance.

It was such a relief knowing that there are others who are living like me and living completely normal lives. I’m really glad I made myself go. Now we have a messenger group so that if we need each other’s advice it’s there in a flash.

Rachael Marchant, 33, Hertfordshire I’ve had a heart condition since the age of 3. I first heard about CRY after my cardiac arrest at 16 but didn’t feel the need to get involved at the time, as I was young and stubborn and hated the idea of ‘seeking help’. I’m now 28 and attended my first meeting this year after finding out I needed more treatment; and I wish I had got involved sooner! The meeting was so uplifting and supportive. It was so humbling to meet so many other young people going through similar things to you, as it’s so easy to feel like you’re the only one! It was a warm, friendly environment that left me feeling positive and inspired. I’m really glad to be part of the myheart community and I can’t wait for the next one! Hannah Edwards, 28, London

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I went along to a myheart group meeting 6 months or so after being diagnosed with long QT syndrome and having an ICD fitted following a cardiac arrest. I must say I was never planning to join any network as a result of my experience but thought it might be useful to go along once to see what it was like. After all, I fitted the criteria and maybe I might be able to take away something useful from it. I was coping OK with my overnight change in life circumstances, but did have some questions!

It was incredible and so encouraging to sit in a room with other ‘young’ people with similar experiences and chat normally about stuff. The things that other friends would be over dramatic about or cover me in unwanted sympathy. The nitty gritty, the details, the feelings and hope for what might be possible in the future. Until then, who else had I been able to speak with who actually understood!?

So I have found myself going back, not to every meeting but there are always new people going through similar experiences and I can be there to offer the same welcome and ears that I got; and catch up with the friends I have made from the group too!

We all come to the myheart gatherings with different stories, conditions, experiences. What I didn’t appreciate before going along was how beneficial it would be being in a room filled with first-hand accounts of a variety of conditions and experiences. This has helped me make better personal decisions than I was able to make following a 15-minute conversation with a consultant.

Condition or no condition, everyone takes an interest in their own well-being, so when something life changing happens it’s only natural that we become interested and maybe research further. As a result we became experts in our own conditions, and by sharing experiences and the advice given to us by consultants it has really helped me living with a heart condition.

If you have been referred to as an “unusual case” by a consultant you are not alone. Tim Butt, 27, Essex I attended a myheart meeting for the very first time last year and I was so nervous as I suffer really bad anxiety.

My partner wasn’t allowed in with me which made me feel even worse about going, but once I was in that room with other people that had gone through the same sort of situation as me we talked and listened to each other and as the day went on I started to feel more at ease and I am now friends with a few on Facebook and I am in a messenger group where we talk on the odd occasion with problems and just to see how everyone is getting on.

I feel so happy that I went and I’m looking forward to the next one Katie Warrington, 26, Kent

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Research News Q&A with Dr Harshil Dhutia, regarding “Inter-Rater Reliability and Downstream Financial Implications of Electrocardiography Screening in Young Athletes” or “How training can save money” Harshil started as a Research Fellow with CRY in 2013. His research interests focused on the cardiovascular screening of young individuals, including athletes. Harshil has been awarded for the best poster presentation at several prestigious international events including the European Society of Cardiology (ESC) in 2015 and EuroPrevent in 2015.

Harshil is now a consultant cardiologist at Glenfield Hospital in Leicester, and is actively involved in CRY’s screening programme.

Q: Why did you investigate the variation in ECG interpretation among cardiologists of differing experience?

As with any subjective test, there is concern regarding the variation of the ECG as a screening tool. Prior to this study, there was a limited appreciation of the degree of variation in ECG interpretation in athletes from small studies.

Furthermore, I wanted to investigate the impact of newer ECG criteria on ECG interpretation, as well as investigate trends in clinical practice amongst cardiologists when faced with a relatively large real life sample of athlete ECGs. Q: How did you conduct your study?

8 cardiologists (including 4 who routinely screen young athletes with ECG) independently reported on the ECGs of 400 young competitive athletes consecutively screened through the CRY programme in 2014. The cardiologists were blinded to the clinical history of the athletes and reported the ECGs in accordance with 3 major interpretation criteria including the refined criteria, which was derived from research supported by CRY. In addition to reporting the ECG findings, the cardiologists provided recommendations on further investigations following ECG interpretation, based on their routine clinical practice.We then investigated the inter-observer agreement for ECG interpretation and further investigations amongst the two groups of cardiologists.

Q: Even with differences between inexperienced and experienced cardiologists, does the use of CRY’s refined criteria help increase the detection of abnormalities overall?

The refined criteria improved the degree of inter-observer agreement for ECG interpretation, especially amongst less experienced cardiologists, and reduced the gap in

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agreement between experienced and inexperienced cardiologists. This is pertinent as screening is often undertaken by a variety of physicians of different experience.The study was not designed or powered to test detection of disease. However, we have already shown that the refined criteria significantly reduces the proportion of abnormal ECGs from screening requiring further investigation, without compromising the ability to identify serious cardiac disease (Dhutia et al, JACC 2016).

Q: Is CRY continuing to work on the reduction of false positives and the cost of ECGs/further testing?

Research from CRY has formed the blue-print for the recently published international recommendations for ECG interpretation in athletes. We have shown that these new guidelines have further reduced the false positive rate to the 3% mark and reduced the cost of screening (Dhutia et al, JACC 2017). Such a low false positive rate represents significant progress in our understanding of ECG patterns in young athletes and will likely be acceptable to the most stringent critics of ECG screening.

Q: The cost of cardiovascular evaluation per athlete was $175 for inexperienced cardiologists and only $101 for experienced cardiologists. There was also a notable margin in the amount of ECGs categorised as abnormal and the amount of athletes referred for further testing between both groups of cardiologists. What do you think is the best way to tackle the difference, both financial and technical, between inexperienced and experienced cardiologists?

We found that inexperienced cardiologists were more likely to categorise ECGs as abnormal compared to experienced cardiologists with lower inter-observer agreement rates.

However, even amongst experienced cardiologists, inter-observer agreement was moderate at best. These findings suggest that whilst experience is useful, formal

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Research News training and possibly accreditation is required to support physicians involved in ECG interpretation in young athletes, either for screening or for diagnostic purposes. The MSc in Sports Cardiology and the ECG interpretation course at SGUL are examples of tangible methods to achieve the necessary training for ECG interpretation in athletes.

CRY’s Research Programme by Dr Steven Cox, CRY CEO In the UK, CRY are best known for raising awareness of cardiac conditions in young people, for the support we offer to those who have been affected, and for the cardiac screening services we offer to all young people. Throughout the rest of the world we are better known for the research we are publishing, which is having a direct and immediate impact on clinical practice.

Likewise, inexperienced cardiologists were more likely to request a higher frequency of further investigations (e.g. echocardiogram, MRI, exercise test, Holter) following ECG interpretation with poor-fair inter-observer agreement for these tests. Experienced cardiologists demonstrated a higher degree of inter-observer agreement (ranging from fair-moderate) than inexperienced cardiologists, which is reflected in the lower cost per athlete screened for screening performed by this group. These findings are not entirely surprising given that there is very little guidance on investigating asymptomatic young athletes with ECG abnormalities. In this regard, the recently published international recommendations are unique in that they provide a list of minimum investigations for ECG abnormality. Such guidance will hopefully reduce variation in individual clinical practice which should improve efficiency and reduce costs.

Q: What do you hope to research next?

I hope to report on the outcomes of the CRY general population screening programme of nearly 27,000 young individuals. The results are highly anticipated in the scientific world as it is now appreciated that sudden cardiac death in non-competitive athletes is higher than previously thought, questioning the ethics of limiting screening to elite athletes as is the case at present. The preliminary findings were presented at the American Heart Association and EuroPrevent with excellent feedback.

For more information on this paper and other research published by CRY, please visit www.c-r-y.org.uk/research

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CRY’s research - overseen by Professor Sanjay Sharma, who is recognised as one of the world’s leading experts in this field - is vital in helping us to better understand the prevalence of cardiac conditions, as well as improve our ability to diagnose and manage cardiac conditions in young people.

CRY’s research focuses on both athletes and the general population. In 2017, over 27,000 young people aged 1435 were screened through the CRY screening programme (www.testmyheart.org.uk). Approximately 10% were elite athletes, the other 90% of the people we tested were fit and healthy young people who will enjoy sport at various different levels.

We are sometimes asked why there is such a focus on ‘sports cardiology’. What sports cardiology really represents is research and clinical practice applied to fit and healthy young people. Elite athletes who are pushing themselves to the limits represent an extreme, and the knowledge gained from studying these athletes then filters through to better inform diagnosis and management of all young people with inherited cardiac conditions. When most people think of cardiology they think of the elderly, whereas sports cardiology is the opposite, it is about young hearts.

Clinical data obtained through the CRY screening programme, at the CRY Centre for Inherited Cardiovascular Conditions and Sports Cardiology and the CRY Centre for Cardiac Pathology, is analysed and reported by CRY’s research team in peer reviewed journals to influence policy and practice in the UK and internationally.

The knowledge of cardiac conditions in young people has increased enormously since CRY was founded in 1995.

Undertaking important and pioneering research remains one of CRY’s core initiatives, so that our understanding will continue to expand in the future.

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CRY Events CRY Heart of London Bridges Walk 2017 Sunday 9th July witnessed a huge number of walkers gathered at London’s scenic green space, Potters Fields Park, with 1,423 walkers registering to take part in CRY’s 11th annual CRY Heart of London Bridges Walk.

As ever, it was incredibly moving to see so many people coming together to walk in memory of a friend or family member. It was also an opportunity for people to meet up with others similarly affected and to raise awareness of cardiac conditions in young individuals.

11 members of the myheart network registered to take part in the 2017 CRY Heart of London Bridges Walk, many joined by family and friends. This was a great chance for members to meet each other and share experiences. The event has become a calendar favourite for some of our myheart members and this year they were joined by a few new faces.

Although this event has no obligation for participants to raise funds, this year’s event raised over £85,000 - a truly incredible amount.

CRY Parliamentary Reception 2017 Six members of the myheart network – including three myheart Representatives – attended the 2017 Cardiac Risk in the Young Parliamentary Reception on November 22nd at the House of Commons. Cat Burns, Tim Butt, Jessica Maranzano, Zenia Selby, Joseph Tanner and Sinead Watts travelled to Westminster for the prestigious annual event at which CRY Patrons, Representatives, supporters, Research Fellows and MPs gather to raise awareness of inherited heart conditions affecting young people.

The reception was hosted by Kevan Jones MP. The evening included speeches from Kevan Jones MP, CRY Chairman Hugh Mulcahey, CRY Consultant Cardiologist Professor Sanjay Sharma, CRY Founder Alison Cox MBE, CRY Chief Executive Dr Steven Cox and guest speaker Montana Brown, who appeared on ITV’s ‘Love Island’ and now presents for MTV News. All of the speeches and photos from the evening can be viewed here: www.c-r-y.org.uk/cryparliamentary-reception-2017

CRY Great Cake Bake 2017 We are very grateful to everyone who supported the CRY Great Cake Bake as part of Raising Awareness Week 2017, helping to make the event such a success. We were delighted to have 116 CRY supporters registering for packs, although the actual number who took part was higher. Four myheart members - Charlotte Leyland, Zenia Selby, Zak Selfi and Stephanie Young also raised awareness and funds for CRY through the CRY Great Cake Bake in 2017.

We are delighted with how the CRY Great Cake Bake has continued to grow since it started. The event raised over £30,000 which is fantastic, and helped to raise awareness in numerous local communities. There was even one CRY Great Cake Bake effort that was promoted nationally via a feature that aired on ITN News, a first for the event!

If anyone is interested in taking part in the 2018 CRY Great Cake Bake on Friday 23rd November, they should email ben@cr-y.org.uk to register to receive a CRY Great Cake Bake pack (when they are ready)! We are hoping to make this year’s event even bigger than last year’s, to raise vital funds and awareness for the work that CRY does. Our CRY Great Cake Bake packs will again be filled with advice and goodies to help you with your baking efforts.

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myheart newsletter 2017

New YouTube Channel Launched

At the end of Heart Month 2017, a powerful but pragmatic new YouTube channel was launched by CRY to help support the growing numbers of young people who are learning to live with the shock diagnosis of a potentially life threatening heart condition. myheart’s very own channel was created to help answer the questions young people who have been diagnosed with a cardiac condition have, including questions on exercise, ICDs or various tests and procedures including ablation or ajmaline testing. CRY’s myheart cardiologist, Dr Michael Papadakis, has recorded several new videos dispensing advice on living with a cardiac condition, including on exercising with a cardiac condition, travel insurance and driving with a cardiac condition. The myheart YouTube channel, also includes videos sent in by members of the myheart network. We urge you to subscribe and check out the new channel: http://bit.ly/2EGDmXh As well as videos sent in by members to help others – sharing their experiences of being diagnosed or undergoing certain tests and procedures – the new myheart YouTube channel features a number of frequently asked questions which have been sent to myheart and are answered by Dr Papadakis.

The development of the YouTube channel follows the launch of a new myheart website in 2016, which includes a ‘private area’ where young people with cardiac conditions can connect with and support one another.

The myheart YouTube channel is one of our free, online, open access resources designed to help those young people who are having to face new life-changing challenges.

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There are over 50 videos on the channel including: • How much exercise can I do with an inherited cardiac condition?

• What are the advantages of both subcutaneous ICD and the ICD? • Can I continue to drive after being diagnosed with a cardiac condition?

• Are there certain sports you should avoid with an ICD? • Am I allowed to get pregnant after being diagnosed with a cardiac condition?

• If diagnosed with an inherited cardiac condition how often should you be retested?

• Why would you need to repeat an ablation?

If you have any questions that you would like us to include when we film future Q&As with our myheart cardiologist, please email them to myheart@c-r-y.org.uk. All questions are included anonymously.

If you are comfortable talking about a test or treatment that you have had and would like to share your experience with others, you could record it (even on your mobile) and send it to us at myheart@c-r-y.org.uk. We have had feedback from members that they find it really useful to hear others’ experiences before they are about to undergo a procedure themselves. It can also provide reassurance that they are not alone in their experience.

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myheart My Story Super Ventricular Tachycardia (SVT) by Samantha McLaren I have been suffering from SVT attacks since March 2010 when I suddenly collapsed at work. I was taken to A&E for tests and my heart rate was very high, reaching over 200BPM. I remember being very scared as I was never in hospital and was always fit and healthy. They gave me a 6mg jab of adenosine and it slowed my heart rate back down. I was told this can happen at any time as I have an extra pathway which produces a rapid heart rate (arrhythmia) when the blood is trying to get around the abnormal pathway. There aren’t any symptoms except the palpitations can be very uncomfortable, cause chest pain and tightness as well as becoming lightheaded. You may even blackout.

They do occur unpredictably and when you least except them, in the middle of the night, for example. You may be able to control them with techniques; I used to try going for a cold shower or put a cold washcloth around my neck and I have also tried holding my breath for a few seconds to help slow the heart rate down. Sometimes this isn’t always effective and I have to go to my local A&E Department to get an injection of adenosine which returns your heart beat to normal.

After my first SVT attack, I was frightened and unaware of what was happening to my body. I immediately Googled the problem and got linked up to the Cardiac Risk in the Young (CRY) site. I registered with them, they sent me out some leaflets and books explaining everything, and straight away I felt relieved that it wasn’t just me going through this and there are other people to share these experiences with.

Both my family and myself can’t thank CRY enough for their support throughout my journey.

Following all of the above procedures and tests carried out over the years, I still suffered from occasional SVT attacks and needed something to prevent this. I was told I could get an “ablation” operation, which would burn out the abnormal pathway to my heart. At the thought of it, I said “no” straight away and put it to the back of mind. As I began to get more and more SVT attacks due to stress and anxiety, after a few years I decided I had had enough suffering and should get the operation, as it would help me and give me a better lease of life.

I received the phone call on the 19th of February 2013; I was told there was a cancellation for 7.30am the following day. I was in work and couldn’t believe it was finally going to happen. I was in shock and excited at the same time, while another part of me was terrified. I had to convince myself I would be fine, this would be life changing!

The following morning my boss drove me and my mum to the hospital, the Golden Jubilee National Hospital in Glasgow. I was shown to my own room in the cardiac day unit and given my gown, where I prepared myself for the op. One of the nurses came in to take blood, I started crying uncontrollably and realised this was all happening very fast, and I felt uneasy and scared.

Professor Rankin, who was doing my procedure, came into my room with his team and tried to relax me. They all introduced themselves to me and were very nice and friendly. He talked me through everything and reassured me I would be fine. I felt more secure, stopped crying and told myself it would all be over soon and I would have a better quality of life.

As I walked to the theatre room I wasn’t scared but curious about all the tools and needles. I was a bit teary again and there were so many nurses around me to attach leads, which are used to monitor my heart and to make me comfortable. They gave me a little sedation and I was still anxious and upset so I was given more. I could feel more relaxed and stopped crying. I was awake during the whole procedure which lasted around 2 hours.

• An exercise test ECG – where my condition was monitored and I had to run on a treadmill whilst attached to the ECG monitor.

Throughout I could only feel the doctors pressing at my groin where surgery was taking place. I could hear them talking about what they were doing and every time I tried to sit up to look they kept telling me to lie flat and stay still. I think it was just an automatic reaction to see what they were doing. They made an incision to my right groin into the femoral artery which is how they get the wires up into the heart chamber. They stimulated my heart with an electric current so they could vision my problem area on the monitor and know where to ablate.

• An echocardiogram test – where my condition was monitored using ultrasound waves to look at the structure of my heart, similar to the test used in pregnancy.

Once the procedure was over I was lifted off the table onto my bed back to my room, and told to try and get some sleep for a few hours. I felt very unsettled and a bit groggy.

The tests carried out on me during my journey with SVT were: • An electrocardiogram (ECG) – where my condition was spotted and diagnosed.

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myheart newsletter 2017

myheart My Story I was in denial that I couldn’t move and thought I would be able to go to the toilet and get ready to go home after I woke up. As I tried to sit up I told my mum I couldn’t move and I couldn’t feel my legs, I panicked, but my nurse who was looking after me, Jacqui, insisted it was just the drugs wearing off and I shouldn’t worry.

After I woke up the second time I still couldn’t move and was told to stay in bed as long as possible. I was given some aspirin to help with blood clots and some paracetamol to help with the pain.

After my ablation I was advised to take a week off work for full recovery as any heavy lifting or stretching may cause my wound to burst. I had a lot of bruising at my groin and some internal bruising which caused me more pain at my groin and my thigh.

If anyone is told to have an ablation, I advise they get it as soon as they can and not wait like I did; there is nothing to be afraid of! I’m so glad I went through with the operation and haven’t had any problems since; and it’s now 2017!

I’m now looking forward to a great future, all thanks to CRY!

My Journey with ARVC by Gavin Boyce My journey with ARVC started on January 16th 2012 when I woke up in hospital to see a nurse looking back at me trying to offer me some reassuring words. She said I was in hospital and that there was a lot to explain; she was going to call my wife to let her know that I had come around. I laid back and waited for the answers.

8 days earlier, a month before my 31st birthday, I was training with a friend for our third London Marathon. We had planned a quick 5k run as part of our training. Shortly into this run, I felt dizzy, collapsed and went into cardiac arrest.

My friend Colin barely had time to check what was wrong when two police officers (Ed and Jess) who were driving to work stopped to see what was wrong and to help.

They quickly realised that I wasn’t breathing and began CPR. They kept on with the chest compressions until two ambulances arrived with defibrillators. I was shocked twice on the side of the road, twice in the ambulance and I think once in the hospital by the resus team. They managed to stabilise me and I was then put into an induced coma.

The initial recovery from what had happened was really

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hard. I was told I’d probably be in hospital for a few months whilst I recovered. Now I know not many people like hospitals, but I really dislike them and had to work hard to get out of there as quickly as possible.

Initially the docs didn’t know what had happened but I was still too poorly to test. I still had tubes in my throat and had to communicate with an alphabet board. Just pointing to the letters to spell words. Once the tubes were all out I then had to build up the strength in my legs to start walking again. After about 2 weeks of not using them there had been some muscle wastage so that was really tough, but moving up and down the corridor of the ICU unit with my Zimmer frame was amazing. Doctors and nurses who hadn’t seen me since they’d played a part in saving my life stopped to say how shocked they were at my speedy recovery and to encourage me to keep up the good work.

I was now strong enough to undergo various tests to establish what had happened. To be honest, before that I was just concentrating on being fit enough to go home and believed I was close, so receiving the ARVC diagnosis hit me for six. An incurable condition that can result in sudden death! I was devastated. I didn’t want to accept the diagnosis or the recommendation to have the ICD implanted but eventually woke up to the reality of it all and relented.

2 days after the ICD was implanted, just 3.5 weeks after I’d collapsed, I was allowed home. I think by then the docs were just happy to not have to listen to me begging to be released. I was still really, really weak but I knew I could get stronger at home.

It took longer than I wanted but I was strong enough to return to work within 3 months – by then I was going a bit stir crazy and just wanted to be back to “normal”. Doctors, nurses and my cardiologists were all amazed at how quickly I’d got back on my feet.

It’s now been almost 6 years. Living with ARVC is tough at times and there are some drastic lifestyle changes to be made. Things like caffeine and strenuous exercise can trigger bad heart rhythms and so I had to give up those strong morning coffees, running, football and squash; but I still do a lot of walking, I can swim and still play golf, so that helps.

The mental and emotional impact is huge; you look normal on the outside but have a machine attached to your heart that can deliver a huge shock at any moment to prevent sudden death – I’m sure that’s enough to give anyone anxiety issues. There are times when I want to absorb as much information about the condition as possible, raise awareness of it, or fundraise for various charities like CRY or to purchase a defibrillator for a local school. There are also times I can’t stand to think about it and just want to

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myheart My Story forget about it and be “normal”.

All in all, I know I am very lucky to still be here, to see my young children grow up and to cherish every memory made with them. I’ve been told that there is something like a 3% chance of surviving an out of hospital cardiac arrest and I give thanks every day to all the people involved in saving my life that day and who have helped look after me ever since.

As my amazing wife said to me before I went in for my ICD operation “ARVC is not bigger than you and will not define you. Life will be as good as its always been, just a little different!”

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 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 a risky operation when you are an adult

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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 and 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 such as pregnancy, it feels great to hear other stories, share experiences and know I’m not alone with my condition.

Fiction vs Reality of Brugada by Joseph Tanner When I read that Eastenders had done a Brugada storyline with one of their characters, I decided to check it out on BBC iPlayer.

Many years ago Eastenders had a slogan ‘Everybody’s Talking About It’. Oddly for me, nobody was talking about it. I didn’t get messages or comments from friends or family, I came across this story via a Facebook newsfeed. My weekly phone call to my parents and not a word was mentioned, there was a time my mum would fill me in on what went on in the soaps. Maybe this story is not relevant to me anymore, it’s been 9 years since my cardiac arrest and my diagnosis of Brugada syndrome is something of the past, though I live with it every day of my life.

So I sat down and watched these episodes, with the hope that this storyline would raise awareness of my condition and enlighten people to the actual risk of sudden death in young people. Kush Kazemi suffered his cardiac arrest towards the end of the Tuesday 12th September episode, after Denise snubs the idea of them living together. He walks out onto the Square and collapses. Sonya Jackson jumps into action, knowing that the mini-mart has a defibrillator, which she demands Kim to get whilst she performs CPR. Watching Kush collapse sent a shiver down my spine.

Since my cardiac arrest I avoid shows like Casualty because I don’t like seeing the use of defibrillators, so seeing Kush collapse was very distressing for me.

I liked that it happened this way because there were no

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myheart My Story warning signs, and that is the reality for so many with undiagnosed heart conditions.

Go back to 2012 and watch Fabrice Muamba collapse on YouTube; or this powerful video from Cardiac Risk in the Young https://youtu.be/amULgZg6zEQ My story is a little different. I suffered my cardiac arrest on the finish line of the Hastings Half Marathon in 2008 with a finish time was 1hr 49 minutes. I don’t remember running that day. I travelled to Hastings that morning with other runners from the Brighton Jog Shop. I do remember it being a miserable rainy day, and I remember messaging a couple of people saying something wasn’t right, I will message everyone once I finished. Still, to this day it doesn’t make sense to me. I was a fit, healthy young person, and the year before I had run the London Marathon and I was part of a run group.

I should be thankful that it happened to me in Hastings where the Red Cross and emergency services were on hand to save my life. Had it happened any other time, well, you wouldn’t be reading this now.

I can only imagine what it was like for the people on the scene the moment they realised that I had gone into cardiac arrest; and for all the people to witness such an event; and for my sister getting the phone call from the police, informing her what had happened to me and that sinking feeling that they could possibly lose me.

Thankfully my sister was back home visiting my parents that weekend, so they all jumped in the car and drove to Hastings. They were warned that by the time they got to Hastings that I could be gone. The fear and tears my whole family went through - that car journey must have felt like the longest car journey of their lives.

I’m almost in tears writing this now, a cardiac arrest has an emotional impact on everyone. Then, my sister having to go through my phone to contact people to tell them what had happened to me, trying her hardest not to break down and stay strong for me. My friend Charlie said she was at work when she got the call, and that she could not process what my sister was telling her.

Back to fiction and Kush is now unconscious in the hospital (they mention that he is on drugs, which suggest an induced coma, although this was not confirmed) and by the end of this episode he is awake. On the Square the rumour mill was running, some characters questioning what happened. “He is young and healthy”; “He must have been on something?”; “It’s not right”. After my cardiac arrest, my room was searched by the police (this is hearsay by my housemates at the time). They were looking for probable cause as to why a young person had a cardiac arrest. The police also went to my place of work and

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informed my colleagues what had happened to me.

In reality, a cardiac arrest it is different for everyone.

Personally, I was put into an induced coma (a deep state of unconsciousness) brought on by a controlled dose of a barbiturate drug, usually pentobarbital or thiopental.

Due to having a cardiac arrest they were unable to carry out further investigations due to suffering from a chest infection (pneumonia post cardiac arrest syndrome). Kush having no ill effects from his cardiac arrest didn’t ring true to me. I understand from a story point of view people want a quick conclusion, but for me this story needed time to develop.

Coming out of my induced coma was like a scary movie.

I was wired to the elevens, naked bar a hospital gown which doesn’t cover your modesty if you’re thrashing about - blurs of nurses checking in on me, family surrounding me, and the tears that followed. Thankfully my sister fetched my childhood cuddly toy Sweep from my house, she knew that I would want him to comfort me from this pain. I was informed very early on during my hospital stay that I would be getting an ICD (Implantable Cardioverter Defibrillator) and at the time it felt like I had no choice in this matter.

One of the books that was given to me to read was called ‘When a Young Person Dies’. I do believe that there are better publications out there now. I remember taking everything in my stride. In truth, I was numb inside and I wanted to put a brave face on for everyone. I didn’t understand what was going on. Being in Hastings I was mainly alone. My parents only stayed until I woke, my sister visited as much as she could and so did a handful of friends. I had lots of well wishes from friends, including the TNT driver who sent me a get well soon card. I didn’t realise how much this could affect people.

For 3 weeks I would stay at Hastings Conquest Hospital.

My 3-week stay was due to the chest infection, that took nearly a week of antibiotics to clear up. Then there were lots of consultants consulting what to do with me, hundreds of ECGs, so much blood taken, Easter Holiday and Bank Holiday all happened so everything took longer.

I was punctured so much with needles that one nurse severed a nerve in my right hand - for 2 years I would suffer from pins and needles in the palm of my hand.

Having a cardiac condition I was in a ward surrounded by the elderly - old people with dodgy hearts.

One night the elderly guy next to me passed away; the nurses lied and said that he had been transferred to another ward. It was tough because they didn’t know what condition I had. Some nurses wouldn’t allow me to leave the bed for the toilet, in fear that I would have a cardiac arrest. So a commode or piss bottle would be given and the curtains would be drawn. My dignity had been stripped.

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myheart My Story In hospital after my cardiac arrest, with my finishing medal, I did become something of a celebrity in hospital. BBC South News came to the hospital and interviewed me from my deathbed. The nurses wheeled in a TV so everyone could watch the news that evening. It was then decided that I would have an MRI scan at Royal Brompton Hospital in London, I remember this day being transported in an old ambulance with a nurse. We stopped at a burger stand on the highway on route; that hot dog with onions never tasted better. After my MRI scan I travelled back to Hastings Conquest and it was decided that I had Brugada syndrome and I would finally be transported to Brighton Royal Sussex County Hospital to have my ICD implanted.

In Eastenders, due to having no ill effect from his cardiac arrest, Kush was able to go straight into consultation and it was quickly determined that he should have the ajmaline challenge (test) to determine if he had Brugada syndrome.

It was briefly mentioned what the drug would do, and the risk, but I was more surprised about how quick the ajmaline challenge was decided on. It was confirmed that Kush had Brugada and that he will have an ICD implanted and that his family would need to be tested. They rush Kush into theatre, Denise is afraid that she is going to lose Kush, so asks him to marry her as he is wheeled away.

With a smile he says “Yes”.

Personally, I would have ended that episode without an answer, the drums, leaving people wondering his answer and if will he survive to give Denise his answer, but I don’t write soaps. Once I got my diagnosis, I was transferred within a couple of days to Brighton and my procedure for the implantation of the ICD was the very next day. So I don’t have much of a problem with Kush getting rushed into theatre, though maybe a couple of days would have been more realistic.

The day of my procedure I could not sleep the night before, my main fear was that I wasn’t going to wake up after the procedure. I’d never had an operation before. I remember washing twice that morning before going to the theatre, calling my parents and trying not to cry; scared that I may not hear their voices again and not knowing what life will hold for me after this day if I even had a life. When they came to collect me, I wanted to say that I did not want this, I just wanted to go home. Laying on the bed, being wheeled to the theatre, a solitary tear rolled down my cheek. The nurse tried to reassure me that everything was going to be

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okay, but it really wasn’t.

The next episode of Eastenders and Kush is out of the hospital and in the cafe having a coffee with Denise.

Later on in that episode, he visits his mum (Carmel Kazemi) in the hospital and she is also diagnosed with Brugada syndrome and it is advised that she should get a defibrillator implanted, so she goes into theatre for an ICD. There was a Twitter outrage wondering if an episode of Eastenders had been missed; there hadn’t. I had to double check myself if I had missed an episode. After I had my ICD implanted I have to admit I was released from hospital within 24 hours, so I guess Kush being out of the hospital in the next episode isn’t unusual. My problem is the actor movement after having a cardiac arrest. My defibrillator was placed under the collarbone. After having a defibrillator implanted, I was unable to lift my arm above shoulder height for 6+ weeks. The technology of ICD is getting better, and Kush may have received a side implantation which isn’t as intrusive. The thing is, I don’t believe Kush should have been able to hug or move in the way that he did after the implantation of any device.

Another aspect of this episode that I didn’t like was that Carmel and her other son were tested so quickly. I love the NHS, but to get the family consulted can take months, if not years. Then to be given an ICD is laughable, I have known so many people that have to fight for this.

Cardiologists won’t give an ICD to people so easily, especially to someone who has shown no symptoms. This whole process was too rushed for me, and is far from reality. In other words, another missed opportunity for the storyline to develop. Carmel could have declined the device, gone into denial, which would have left Kush and his brother distressed about their mother’s welfare.

I woke from my procedure with a room full of friends, people that couldn’t make it to Hastings, and my sister. I was overwhelmed. I remember coming over funny after having my procedure and being sick. It wasn’t because of the operation, it was seeing everyone and being alive that got to me; bruised and battered after my ICD implantation.

The next day I was released from the hospital, and this horrible ordeal was over. I was so thankful to be outside after 3 weeks. They told me to rest up for a few days, but I wanted to get out and walk, I wanted to breathe and see the world again, go to the cinema and do the things that I wasn’t able to. On this day we saw Son of Rambo, on route to the cinema I remember seeing a ladybird and getting teary-eyed because I had forgotten about such beauties in life and that I was alive to witness them. If I could have gone out and danced on the dancefloor of a Revenge [nightclub], I would have gone, because I wanted to live.

A couple of months after my cardiac arrest I would go to

myheart newsletter 2017

myheart My Story Hastings to an award ceremony, to give an award to the people that saved my life. At the award ceremony, there was a clip of the ambulance that took me to the hospital.

It was unsettling to know that behind those doors I was fighting for my life. Every time I hear an ambulance siren, I freeze. Why? Because I fear that behind those sirens is death and the aftermath that follows. Did Kush thank Sonia for saving his life? No, he hasn’t from what I have seen.

I would like to see people acting funny around Kush, not knowing what to say to him or how to treat him. I would have liked to see Kush breakdown, or get emotional walking the Square where he collapsed, hitting home that his life had nearly ended. After an event, people want to treat you with kid gloves, don’t know what to say to you.

For me it got very suffocating. Early on I was told that I should tell people my condition. For a few years my life was Brugada and not Joseph Richard Tanner. I would return to work 5 weeks after my cardiac arrest. I went back to work because I felt that I had to, the support was very limited at the time.

I would later find out that I could have had up to 6 months off work paid full, but no-one tells you these things. On one hand, it was a good thing because I wanted everything to go back to normal; but on the other hand, I needed time to process what had happened to me.

Kush then informs Stacey that baby Arthur may have Brugada because it is an inherited condition. They visit the consultant that informs them they will have to see a paediatric specialist which will take a week.

Stacey starts losing it, not wanting to wait a week, she wants to see someone now, which in truth would mirror any mother or father in this situation. In reality, it can take months to get an appointment with a paediatric specialist, though the NHS will try to rush through in a situation similar to Stacey and Kush’s. Brugada is hard to pick up on an ECG and consultants are unlikely to perform an ajmaline challenge on a child, so the best possible way to find out is genetic testing. With Carmel and Kush having Brugada it will help identify the gene, but it doesn’t mean they will. Getting a result from genetic testing can take 6 months to a year.

If they can’t find the Brugada gene, unless baby Arthur shows symptoms, they won’t be able to do anything for him until his young adulthood, with a check-up every 6 months to a year. This could lead to a very interesting storyline for Stacey and the child that plays baby Arthur, but sadly I fear this will be ended and forgotten within a few weeks.

A month after being released from hospital my cousin Lenny passed away after drowning, trying to save someone in a canal. I feared that maybe he hadn’t drowned and

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maybe that he had a cardiac arrest when jumping in. A few years later his sister Marcelle was running a marathon and posted about feeling sick and needing to rest after the race. I contacted her with my concerns and she dismissed them. Personally, if I was her I would want to get checked out, not just for her own well-being but her kids. Only a few people within my family have been checked, some of these people with nothing more than an ECG. The one fear that I live with every day is that one of my cousins, my nephews, or a child within my family drops dead because of this disease; and the amount of guilt I will feel for not pushing hard enough for them to get tested.

Throughout the last 9 years, I have met many families with various heart conditions. These conditions can break up families or bring them together. Some family members want to bury their head in the sand; at times it can be a never-ending battle. These conditions can affect us on so many levels. If you are a driver, you are unable to drive for 6 months after a cardiac arrest. If you receive appropriate shock therapy from the ICD, you’re unable to drive for 3-6 months. If you receive inappropriate therapy, you may be able to drive within a week. The impact of not being able to drive affects people’s day-to-day lives which can include their jobs. When you go on holiday you have to make sure that your travel insurance covers your condition. With that in mind, what will the treatment be like abroad? There are certain things that, having Brugada, I have to be cautious, of like not eating heavy meals at night and not drinking too much. There are certain drugs people with Brugada should avoid and you have to remind your GP that you require a flu jab every year because high fever and sickness can be dangerous.

I’ve heard the horror stories of people suffering from inappropriate shock from their device. Thankfully I haven’t received shock therapy appropriately or inappropriate since the implantation of my device.

I had to get my device replaced after 3 years due to a low battery; they are meant to last up to 10 years so that was a disappointing setback. Will Kush or his family suffer any setbacks after their diagnosis and bring it to the reality that life isn’t that easy?

This condition changed me. After many years and personal battles I have achieved so much, like my counselling qualifications and training to be a Personal Trainer. After being diagnosed with Brugada I was told that I would never run a marathon again; well, in 2015 I completed the Brighton Marathon in a faster time than my London Marathon in 2007.

There is another fear that lurks in the back of my mind, and that is that I have been lucky not to suffer further with this condition. Yes, I had a cardiac arrest, but I’m lucky to have not needed my device since. I’m lucky that Brugada

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myheart My Story doesn’t affect me in other ways like fainting spells or heart palpitations, that I’m somewhat able to live a normal life; but one day that may change and I’m not sure how I will deal with that.

2 black eyes, 1 broken nose, 3 fractured ribs and 2 weeks later, I had been implanted with an ICD and discharged from hospital. I had an undiagnosed Hypertrophic Cardiomyopathy.

People have said to me many times in the past that I’m an inspiration to other people. I’m not, I’m just me and I’m very fortunate to have survived a cardiac arrest. Fiction vs reality of Brugada, this is my reality.

2. Friend’s Kitchen - 21 years old

The 8 Times I “Died” by Jamie Poole These are the stories of the 8 times I died (well, episodes of VT/VF).

It wasn’t until a year and a half later that I was dead again.

I had taken my computer over to my friend’s house for a night of gaming, movies and football — and we stayed up all night doing so. At 6am I thought it was time to go to bed, so I headed downstairs to the sofa. But I had forgotten my phone, so turned face and ran back upstairs. When I got back downstairs, I realised that I had also forgotten to take my medication (beta-blockers and ACE inhibitor) — so turned around again, and skipped back upstairs.

1. Train Station - 20 years old I don’t remember much about the initial cardiac arrest that started it all, only third party stories from my family and friends who had to experience it for me, and some of the bystanders who were nearby when it happened.

It was a Tuesday, I think, and I was on my way to my new internship in the city. It was at an airline in the marketing department and I was very proud and happy that I had got the position. It was 7am and I was at my local train station.

The train station has an overpass in order to get to the platform I needed, so I skipped up the stairs, and rounded the corner onto the walkway. At this point, bystanders nearby said that I dropped down to one knee and they asked if I was alright. I replied “I’m fine”, but stood up, turned and walked straight into the wall – before collapsing for good.

I once got hold of my medical records and I read the paramedics report. I required over 40 minutes of CPR, 5 attempts using the defib and 3 shots of adrenaline. I was taken to the nearby hospital unconscious and I was put in a medically induced coma. My mum is a nurse who works at that hospital and a colleague saw her name on my phone. I can’t imagine how that call must have been. Apparently when she first saw me, they were still performing CPR on the gurney.

I was in a coma for 4 days and they told my family and friends that when I woke up I would probably suffer from brain damage. Once I woke up, I probably didn’t help alleviate these concerns when I asked the same questions over and over and over again. Not out of curiosity — just that I was so out of it I was forgetting I had asked. I failed my first psych exam, failing 1 question — “Who is the Prime Minister of Australia” they asked; I answered “George Bush”.

On that third time down, I began to feel… “funny”. I thought I was just unfit and feeling tired from the all-night gaming, so wasn’t too concerned. I laid down on my bed to try and momentarily catch my breath — but it didn’t help. I figured perhaps I should take my medication now, so hopped up off the bed and headed to the kitchen.

I remember reaching for a glass, feeling intensely dizzy and the noise got really, really loud. I held onto the counter to rest and then silence.

I woke up with my neck at an odd angle, staring at a roof. I couldn’t remember where I was and I felt strangely peaceful. I felt good, like I had just had an 8-hour sleep — which really confused me. My first thought was literally, “Did I go to my friend’s last night? or was I just dreaming I did?”. It all felt like a dream and it’s one of the weirdest experiences I’ve had — not knowing what reality was.

It took a few minutes until I realised that I was in my friend’s kitchen and I had mostly likely had another sudden cardiac arrest (SCA). My heart was still racing and I tried to count my pulse with my fingers but came to a number faster than 160bpm twice.

As this was the “first” time I had had an SCA and been aware/awake for it, I was worried and didn’t know what to do. Part of me wanted to crawl to the bench and get my phone to call emergency, but the other part told me to stay where I am, shout for help and not risk it. I chose the latter, and started shouting for my friend to wake up.

3. Outside My Office - 24 years old A lot had happened in the years since that event. I had moved to a new country (and somehow survived carrying 50kg of luggage around a new city) and had a shiny new job right in the middle of town.

It was an ordinary Thursday and I began to walk to the

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myheart newsletter 2017

myheart My Story office after catching the train into the city. It was a nice day, cloudless and sunny, and I felt good — until about half-way to the office when I felt a little palpitation/flutter from my heart.

no doubt what had just happened. Immediately my first thought was perhaps the most depressing and scary thought I’ve ever had in my life.

“Thank f@!k I was dreaming, it means I’m still alive.”

Having been years since my last event, I had no reason to suspect anything was wrong, so continued my walk to work.

It wasn’t until I rounded the last corner, with my office just 20 yards away, that I began to feel out of breath. I felt my heart rate accelerate rapidly and I had a pretty good idea where this was headed.

I spotted some colleagues across the road from the office having a cigarette, so I thought that if I go and say hello, I could use that as a decoy to try and compose myself and calm myself down. It didn’t work.

I made my way across the road and said hello. I sat down on a ledge and I must have looked ill, as my colleague asked “Are you alright?”.

I said to him, “No, I think I’m about to have a cardiac arrest.”

But I knew I still wasn’t right. After congratulating myself on still being alive, I felt a palpitation. So far, after an ICD shocks me I feel “fine” relatively quickly — but not this time.

Within 15 seconds, I felt my heart go into VT. I was even getting better at diagnosing myself now.

A colleague rounded the corner and saw me sprawled on the ground and asked if I was okay. I said no.

BANG. I had a second, separate episode of VF. Speaking to my cardiologist afterwards, after the first VF where I passed out, my ICD administered successful therapy. Speculating, she thought that perhaps because of an adrenaline rebound effect, my heart immediately went back into a new VT, that led to VF and a second, separate ICD shock. I was awake for that one and I still hadn’t gotten use to the sting or the metallic taste in my mouth.

BANG. 6. Front Door of the Office - 3 weeks later I passed out for a few seconds and woke up leaning on my colleague’s shoulder. Unlike the last time, I definitely felt my ICD go off that time. I tasted iron/metal in my mouth and my heart rate was still rapid. Scared, I asked my colleagues to call paramedics.

I had a VF episode arrested by my ICD, which started as 10 minutes of Polymorphic VT when I felt that palpitation earlier.

4 & 5. Office Stairwell - 1 week later Perhaps stupidly after last week’s SCA I went back to work on Monday. I kept remembering my cardiologist’s words that if my ICD works, I should be good to go after 15 minutes. So I felt fine on Monday and had no concerns heading in.

So this is where I really started to fear Thursdays. After taking some time, this time, to relax and recover, I returned to work 3 weeks after my last two SCAs. I was feeling fine again and had hoped that the worst of it was behind me. My cardiologist had put me on new, stronger medication, and I was assured this would mean that I wouldn’t likely have an SCA again any time soon.

So that’s what I thought, until again, Thursday rolled around.

Walking to work as usual, much like the previous times, I was feeling great. I had no reason to suspect anything was amiss or anything was about to happen again. I felt no palpitations and expressly remember feeling even more energized/upbeat than usual. Life was good.

Until Thursday.

I actually still felt really good — I felt no palpitations heading into work, was taking it easy and had no reason for concern. I made it to my office fine and headed up the stairs to the 3rd floor where my work was. As I rounded the 2nd flight of stairs I got a few steps up, and then…

I turned the same corner as my third SCA, 20 yards from my office — still feeling fine. It wasn’t until 5 feet from my office door, when suddenly I felt it. I knew immediately what it was, I’d had 5 times worth of experience now so felt like I was getting good at spotting the early warning signs.

My heart was in VT, 5 feet from my office door.

LOUD NOISES – CAR HORNS – TRAIN NOISES – FLASH. I woke up and I was at the bottom of the stairwell. I had

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Scared, my first thought was to get help. There was no one around this time and I knew I didn’t have long. There

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myheart My Story was a button on the door to speak to our receptionist, but when I looked at the panel, the panel I’ve used 200 times already, I could not figure out how it worked. I knew this was probably anoxia, so thought my only option was to sit down lest I collapse and do damage.

When I sat down, I remember thinking about my mum. It stemmed from a comment a nurse said to me the last time — “You know your ICD isn’t going to work at some point, right?” — great nursing. So this time all I could think about was what I could have said to my mum if I don’t wake up this time.

BANG. 7. My Work Desk - 25 years old My cardiologist called that period a storm, and I was now well on the way to having my first SCA-free year.

Life was returning to normal. I asked for counselling to help cope with some of the mental side-effects of my “storm”. I was paranoid of Thursdays (can you blame me?) and I was acting out “safety behaviours” because I was too scared. I would stop walking every 100 yards; and I would stop after 3 or 4 stairs, even if I felt fine.

But by now, these were becoming less and less a thing and I was starting to get “adventurous” again.

It was raining this day and it was lunch time. Feeling nothing of it, I actually even “jogged” (walked briskly) to the cafe across the road. I didn’t think anything of it and “jogged” back to my office. I practically skipped up the office stairs, all 4 flights, and actually remember feeling proud of myself.

But this is where it went wrong.

I knew I should have taken a break at that point. I knew I should have given myself time to catch my breath — as proud as I was I knew that it even a healthy person would feel a little puffed after that. Unfortunately, my HR Manager came up the stairs just as I finished and began talking to me.

While I tried to catch my breath, she walked into the office continuing to talk to me. So as not to be rude, I followed her in and kept pace. Her pace. I was starting to worry and spotted an empty chair on our path. How desperately I wanted to sit down.

But I told myself in my head that if I just keep up with her until I make it back to my desk, I will catch my breath when I get there. So kept walking.

And I did it. I made it back to my desk, with my HR

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Manager still there talking to me. I knew I was in VT — but was hoping that now that I was sat down and relaxed I could wait it out and calm myself back to normal. If only it worked that way.

I can’t actually remember what I was talking about to my HR Manager, but I vividly remember what we didn’t say.

After a few seconds I began to feel fine and looked at my HR Manager — she said to me, “Jamie, write your name on the board 3 times” and handed me a pen.

Except she didn’t. And I woke up being cradled and lowered to the ground by my colleague. I died in my office chair. I took a moment to process it while I lay on the floor of my office.

8. Airport Gate - 26 years old So after all this I felt like I was becoming a pro at dying.

After last time, it only took a couple of months to recover and get over some of the mental effects — and I was back in my home country on holiday, as relaxed as I could be. It had been 7 months since my last SCA now, so I had once again forgotten to be careful.

In an ultimately serendipitous series of events, my very close granddad became very ill while I was back home, and we were asked to go to his hometown to be with him.

My mum, being a nurse, knew it wasn’t good when they asked that.

So we booked the next domestic flight up and had an uneasy flight.

When we landed, thoughts of my own health and heart were far from my mind — and why wouldn’t they be — I felt fine. It had been 7 months since anything had happened and the fresh air of my home country was doing me good.

But you’ll never believe what day it was.

Of course, it was Thursday, and when we disembarked the plane our domestic airport did not have a walkway attached to the plane. You needed to take your carry-on luggage down the stairs and back up a set of stairs to get into the terminal.

Still thinking nothing of this, as I had even done domestic flights previously on my holiday, I made it back up the stairs into the terminal.

While I say I was over the mental side effects, they have never truly gone — and I still get worried at every staircase I need to climb. So after making it up these stairs, I knew I should take it easy. So I began to walk slowly up the gangway, careful not to over exert myself. Too late. I felt it.

myheart newsletter 2017

myheart My Story Being the pro at death that I was, I even had a name for this feeling now: “The 8 seconds of dying”. I called it this because I knew that once it started I had about 8 seconds until my ICD would charge up and administer the shock therapy.

I made it to the gate, where hundreds of people were waiting for the next flight to board. I knew it was coming and had only seconds left — so I dropped my bag and sat down in the middle of the gate.

In 2007, I had a cluster of seven over three days so a neurologist referred me to see a cardiologist as he thought it could be an arrhythmia problem.

After an ECG was taken, they decided to put a reveal device in to monitor my heart activity for up to three years.

After two and a half years, I had another seizure so they were able to take a reading which showed a prolonged QT interval. I was then diagnosed with long QT syndrome Type 2. A few days later I had an ICD fitted (pacemaker/ defibrillator) and prescribed Nadalol beta blocker for life.

BANG. A passenger asked if I was okay, and I said no, I just had a heart attack (I felt that if I called it a heart attack it would provide a bigger impact for the stranger) — and they rushed to the airline staff to get help.

My mum, who was with me, had disappeared into the crowded terminal and my phone started ringing.

“Where the f@!k are you?” (she was obviously upset because of the state of her father).

“I died back at the terminal,” I replied.

I was diagnosed with LQT after 20 years by Rebecca Scheffe My name is Becky and I was diagnosed with long QT syndrome in 2010 when I was 37 years old.

At the age of 17, I had a terrible experience as I went to bed one evening and had my first seizure; it was so terrifying I thought I was dying. The doctor was called but he suggested it was a panic attack. I had fallen out of the bed and had convulsed, thrashed around, arched my back and my eyes rolled back (this is what my friend who witnessed it had said). I can only describe the feeling like I was dreaming which stopped abruptly by manic, loud, distorted noises and the feeling of being pushed, pulled and falling all at the same time. When I eventually came around, I was very confused and unable to speak for a while.

I had more seizures every year or so and they diagnosed me with nighttime epilepsy and prescribed epilepsy medication, but I continued to have the seizures.

They usually came in clusters, which was horrible as I would worry about having one and stress and sleep deprivation would bring them on. I would never sleep in a house alone and I dreaded going to bed every night. I cracked my head and teeth a couple of times and chewed my lip so it was swollen and bruised. Sometimes I would have a migraine straight away so would have blurred vision, headache, numbness and sickness.

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Being diagnosed 20 years later was such a relief but also a shock that I had survived when others had not. I had EMDR Therapy due to PTSD from the seizures, which has helped so much as it used to rule my life.

Day-to-day I live a normal life, but unfortunately it’s not been smooth sailing. Six months after having the ICD fitted I had DVT on the vein where the lead is in my arm. A year later, a cyst burst on my ovary and because of the warfarin I had internal bleeding and was in hospital for nine days.

The following year my lead cracked so that was replaced and in a month’s time my battery is due to run out so I’m having the ICD replaced.

Having had these experiences, I think it has made me appreciate life and cherish every day. I have a great quality of life, I got married three years ago and we are lucky to have a gorgeous son who is six months old who unfortunately has inherited the long QT, so he is currently on a liquid beta-blocker. I just hope that he won’t have to go through any trauma and get to live life to the fullest!

Diagnosis Following a CRY Screening by Rachel Collins In November 2015, CRY did a screening programme at my place of work. I had no symptoms but went along and they found an atrial septal defect (hole in the heart), a congenital heart defect I’ve had since birth.

Due to the increased volume of blood, the right atria was enlarged which, in time, would likely be damaged and it was the consultant’s opinion that it should be closed.

I was referred to my local hospital, Wrexham Maelor, for tests over the next 18 months or so. Then I was referred to The Heart Centre at Manchester Royal Infirmary for surgery to close the hole.

My surgery was on 26th July and it involved a wire being sent through the femoral vein in my leg, into my heart,

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myheart My Story where it deployed a wire mesh device that sprung closed both sides of the hole. Over time, the heart muscle will grow over this, sealing the hole closed.

From scans, the hole was expected to be 22mm in diameter but in surgery was found to be 30mm!

Since surgery, my heart rate has dropped considerably (around 85 BPM to between 50-65 BPM) and it isn’t pumping as hard. This is because it isn’t having to work as hard to pump enough blood around my body as it is no longer losing a substantial amount through the hole.

The surgeon explained that those who don’t get such holes repaired have their life expectancy reduced by around 10-15 years, preceded usually by many years of heart problems. So, all in all, I’m extremely grateful for CRY and their screening programme. I would never have known about my condition were it not for them and would likely have experienced serious health problems later in life.

KEEP UP THE GOOD WORK CRY!

Living with HCM by Frank Arentz My whole life was based around sport. I grew up with intense sport being a huge part of my life. My family is very active with my brother being a very serious triathlete, competing in Iron Man Wales and numerous other events. I played at a highly competitive level in tennis, squash, football, rugby and triathlon; winning the National Sprint Triathlon Championship of my age category in 2015 and playing in the ‘A’ team for both rugby and football for Monmouth School. My large physique and addiction to intense sport meant it was an enjoyable thing for me to do and an outlet for me.

Due to our family’s sporty nature my parents decided for our family to get tested at the local school with a charity called CRY (Cardiac Risk in the Young). My entire family passed with no problems but I came up as an anomaly.

I never really thought of it much, mainly because I didn’t want to. So, I continued to do the things I did. However, after having numerous tests done, I was told to stop playing my intense sport during the exact morning I was expecting to play Pontypool rugby club. It was a huge shock to me as I had expected a positive outcome. I told my teammates I wouldn’t be playing in the changing rooms and explained why. They expressed their concerns and were disappointed

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in losing a teammate and as they went on to win the game, the realisation sank in.

That day will never leave my memory. From that day onward, there has not been a single day where I haven’t thought about my condition. It makes you realise how big a part of your life a diagnosis like this is.

However, I decided to try and find the positive outcomes of my diagnosis of HCM. I was expecting a Cyclocross bike for Christmas, however it would not have really come in handy anymore so I decided to ask for a DSLR sports photography camera instead, so I could stay with my team and support them off the pitch by capturing many unforgettable images. I have made a sports photography page on Instagram frank.arentz_photography, why not go and follow me?

I also decided to try to find a new sport where my competitive nature could come in handy. So, I started to play golf with my father and am now trying to get a place in the school team. It’s a great sport for me to fill in the time when I would have otherwise been cycling. It also brings great joy to me to humiliate my father when he tries to teach me how to play and I then go on to beat him!

I also have been able to fill in the spare time I now have with music. I have learnt a few pieces on the piano and I love learning how to play the guitar. I see this as a new side to me which may not have materialised if it wasn’t for the diagnosis.

Coaching has allowed me to partake in sport but on a different level. I really enjoy being able to pass on my sporting knowledge to lower years students and seeing them improve from my efforts. This is certainly a hobby I would like to have when I am older.

I truly believe that the number one thing to remember is to think of what you can do rather than what you can’t do. I never would have taken up photography, golf or music if it wasn’t for this diagnosis; and I would probably have ended up in hospital with lifelong injuries if I was to continue my love for rugby. So at least my mother is now happy! I still, however, fully immerse into the rugby and triathlon world by watching it on TV and supporting events and games in person or with a camera or bells. So, it’s not really goodbye after all.

The thing I found the hardest to deal with was realising the fact that I had a lifelong condition which was potentially life threatening. I got a lot of attention from teachers and family

myheart newsletter 2017

myheart My Story trying to be overly nice to me and help me through a hard time which was much appreciated. Nevertheless, I hated to show my true emotions and so ended up hiding them.

This was hard to do and I ended up getting into trouble at school and finding it hard to keep it together. This also had a secondary impact, which was that some of my friends didn’t take it seriously and took it as an opportunity for a cheap joke. Once I fully explained what I had and the implications and how I felt about it, they couldn’t have been more apologetic for what they did and said. It was after this incident that I then decided to open up a bit more and talk to people about it, which helped me massively. Being able to discuss my feelings helped take a huge weight off my shoulders.

I am now living happily with Hypertrophic Cardiomyopathy and am working hard for my upcoming GCSE exams whilst looking forward to a long summer holiday full of golf, guitar and photography.

A simple heart screening could save your life! by Nicola Kenton I am a geography graduate of the University of Birmingham and the former online editor of the sports section of Redbrick – the university’s paper.

“Have you ever heard of Fabrice Muamba?” was the message my doctor greeted me with, not knowing I was a sports fan - but the answer was of course ‘Yes’. “It’s similar to his heart condition” - not quite the words you want to hear at a doctor’s appointment.

From the age of eight until I was about 14 I swam competitively. I trained up to five times per week and never suspected any problems. After a gala, when I was 12, the next morning I had a ‘blackout’ type event. I went to the doctor, had blood tests conducted and heart tests such as an electrocardiogram (ECG) and an echocardiogram performed, but nothing was found. It was a one-off incident.

Jump forward to my second year of university and I began to swim again, partly for fitness and partly to relax. I went to the doctor for a repeat prescription and the nurse did not like my low pulse rate alongside my high blood pressure. I explained that my low pulse rate was normal, as it had been like that when I had my heart tests earlier on and was informed that it was because I was so ‘fit’. At a follow-up appointment to double check, my blood pressure had returned to normal but my pulse rate was even lower

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– from 42 to 34 beats per minute. At this point, I had to have an ECG and blood tests; these were carried out and my ECG results flagged up as abnormal. I went to A&E and discovered that I had congenital heart block and could have collapsed and gone into cardiac arrest whenever my heart was in a ‘block’ state. I needed a pacemaker inserting and it ended up being my 20th birthday present – the operation was just four days after my birthday.

I was completely asymptomatic and did not know I was living with a condition that could potentially end in my downfall. However, I am not the only young person in the UK to have had an undiagnosed heart condition. Statistics have shown that 12 young people, aged between 14 and 35, die every week through unknown heart conditions. This fact is shocking, but there is something that can improve this statistic – cardiac screening.

If screening was compulsory for those between the ages of 14 and 35, the risk would be significantly reduced.

Furthermore, testing at the professional level of some sports still needs to be improved. Athletes competing at national and, more so, international levels have systems in place where they are tested more regularly, but loopholes still exist. Moreover, on a non-professional basis, the testing which occurs is few and far between and could lead to unexpected tragedies occurring. If these loopholes were sewn up, with the national organisations providing a framework for amateur clubs, it could lead to a more rigorous screening process and thus fewer preventable deaths would occur.

The cost of screening is always an issue, but if teams wanted to have their participants tested I am sure that fundraising could take place to ensure that these checks could be carried out. Most of these deaths are preventable. If only heart screenings were commonplace, the impact of this type of tragedy would be greatly reduced.

Testing is vital. I would not have my pacemaker without that ECG test. I was lucky to find out about my heart condition when I did. I’ve had it since I was born and it had silently been there throughout my competitive swimming days; it could have ended so badly. Thankfully, my increased amount of exercise at university meant that an abnormality was spotted and I could have my life-saving pacemaker fitted. I now know that I’m safer than I was before and would urge everybody to get their heart tested.

I didn’t know I had suffered a cardiac arrest until 3 days later by Lucy Patey In February 2017, my wife, Zoe, our 13-month-old daughter, Frankie-Louisa, and I were visiting a friend in Lincoln. We had a nice dinner and I had one beer. Then, we went to bed.

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myheart My Story I woke up at 3am to go to the toilet but instead collapsed on the floor. The next thing I remember was that I was on the floor with Zoe beside me asking what had happened. It wasn’t until three days later that I decided to visit the A & E in Southampton as I had whacked my head on the floor and had a nasty bump due to it. The doctors advised it was important to check it out as I could have suffered internal head injuries. Thankfully, there was no memory loss, but I had suffered a concussion. The doctors also decided to do an ECG and it was only then that I coincidentally found out that I had suffered a cardiac arrest that night! Totally unbeknown and unpredicted!

but decided to raise awareness and to comfort others by sharing my story. My wife, Zoe, is also fundraising for CRY to raise awareness for young people who have a life threatening condition; and to raise funds for promoting screening programmes and medical research into these conditions: www.justgiving.com/fundraising/zoepatey.

It didn’t occur to me that I could have suffered a cardiac arrest as I was diagnosed with LQT almost 13 years back.

I suffered a cardiac arrest four years ago but I am still undiagnosed! by Lee Gerrard

My licence was revoked and I wasn’t allowed to drive for 6 months. However, I am glad it didn’t happen when I was alone with my daughter or when I was driving. Had it not been for a shock from my ICD, I wonder what would have happened that night. It was only in 2011 that the doctors and I decided to re-insert the ICD in my body to improve the quality of my life. Although it is on the left side now, almost under my armpit, it is more comfortable than the ones I had before and has given me my life back. You might like to read my story of how my ICD made me uncomfortable when it was initially inserted: www.myheart.org.uk/lucypatey Although having a diagnosis has changed my life, I would say I still try to stay as positive as possible. I used to be very sporty and played hockey and loved horse riding, but now that I can’t do much sport, I still love watching it. I did have a rough couple of years but I pulled myself up and decided to move ahead in life.

After my diagnosis, I moved to Dubai and was the manager of a Kids Club at a posh hotel. Whilst there, I suffered a nasty tachycardia but the doctors took really good care of me. In 2013, I decided to return to England and settle in the New Forest. It was a homecoming, as I grew up in this beautiful place. My love for dogs prompted me to open a dog grooming business. I also grew busy with my lovely daughter who was born last year.

Although I may not be as sporty now, my child and dog grooming business ensure that I get enough exercise. I do get tired but take breaks as I have stopped being a hero and started listening to my body. There are tough days but a hug from my wife puts me back on track.

I have recently got my licence back now after a letter from my cardiologist explaining that I was fit to drive again. I understand I have LQT but I don’t let it ruin my life. I treat life as a glass half full.

I am still coming to terms with my recent cardiac arrest

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I would just advise newly diagnosed people not to read too much from the internet and stress yourselves out. Instead, speak to someone from CRY as they offer help, support and information, because the technical words on the internet can be quite intimidating.

I was 32 when I had my cardiac arrest. I was with my best mate and my fiancée who was 8 months pregnant.

I have no recollection of the day, had no symptoms and had no chest pains.

I remember pretty much everything up until the attack.

I have had various tests to see a cause but this still remains unknown.

Luckily my best friend knew CPR and was ex-army. There is a separate article of my story in the Portsmouth News under Lee Gerrard.

I’m still left shaken up by the ordeal, not knowing my future fate but also the reason why.

I now have an ICD as a precaution but would love to see my story told as I want others to know that they are not the only ones out there.

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 flecainide challenge tests… which all fortunately came back clear, which was a huge relief.

At 18:30 I received a phone call from my cardiologist, who

myheart newsletter 2017

myheart My Story 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 am 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.

Professor Mary Sheppard and Cardiac Risk in the Young helped with Alanna’s heart personally, in the much 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 physical 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 increasing.

www.myheart.org.uk

During this time, I saw a cardiologist who, in front of 6 students, laughed and told me I was imagining things as I was probably suffering with pregnancy anxiety and sent 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. 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 was already known to my cardiology department, which at the 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 test 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 - ha ha! 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 specially ordered me a full English breakfast to my bed?! Winner winner!

Then 3 days later it was confirmed - 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 world’s against me.

In March I was admitted to hospital after falling unconscious at my mum’s, where I was then kept on continuous monitoring on the Coronary Care Unit for a week, which was... erm... a bit lonely. Being the youngest by around 40+ years and watching all these 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 dual lead ICD and pacemaker. This is where it gets weird!

So, on the morning of the 27th the 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 was now fully on! My mum and sister, Kamarah, visited that morning as they were off to the other

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myheart My Story 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 said I was going for an X-ray!? 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 heart’s 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 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 and 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

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horrendous and life altering loss and 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 negative or morbid, 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 for 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 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 are 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” Remembering Alanna Marie Ketley 11.09.97 – 18.03.16

myheart newsletter 2017

myheart My Story myheart and CRY representative, Cat Burns, has written a poem to share with the myheart network, titled ‘Moments in Time.’

It’s the out of tune beats, the nearly passing out Running to its own time, playing musical chairs.

It was the passing out when lying n’ sitting – Cold sweats, sinking chest, fighting to stay awake.

It’s goose bumps shivering. Skin going blue under the sun’s warm rays.

It’s the doctors not listening; misdiagnosing.

My uterus obscuring.

It’s the guilt ridden pain that I should be dead.

It’s the “your complicated, complex, unusual” – yet neverquite-believed The test results, scalpels. Ignorance. Their arrogance.

Assumptions and attitudes, breaching confidentiality.

It’s being made to feel less than; patronised. The dirt beneath their shoes.

It’s losing yourself while never being lost…

The finding your new normal, whatever that is.

The three two-inch scars, raised above my chest: It’s the metronome beneath my skin.

so as soon as everyone realised I wasn’t breathing, they started CPR. I was also so lucky as the hotel had a defibrillator which they used to administer one shock which worked. The hotel was in London and the ambulance arrived in 8 and a half minutes and I was taken to Guy’s and St Thomas’ and put in an induced coma for 24 hours.

I was so lucky and was left with no lasting memory problems. I just can’t remember a few days around the event.

About 3 weeks later, once they had carried out a number of tests, they fitted an S-ICD. I also now take beta-blockers.

I am pretty much back to normal now apart from still very tired at times and anxious too, after what has happened.

New Vlog by Mike Sheldrick Hey guys, just weeks before I turned 35 I was diagnosed with WPW. I’m starting a YouTube channel and made a video about my experience thus far. I wanted to thank CRY for their early encouragement and support. Check it out here: https://youtu. be/5MxGjATFr18

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

It’s golden dust – the little things, that suddenly seem so big.

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.

I suffered a cardiac arrest at my sister’s wedding by Carly Williams

The next 24-48 hours are a blur to me. However, they were the most life changing moments of my life.

Restrictions. Contradictions. Never quite the same.

Being stronger than you realise.

It’s knowing you’re tougher than they think.

It’s being broken yet not defeated; defiant till the next.

It’s the constant metronome beneath my flesh…

Grateful it’s there, that I’m here and not ‘there’.

Adjusting to each stage. To yet a new ‘normal’.

I have no diagnosis for my sudden cardiac arrest (SCA) yet.

It happened in July this year and I have had all the tests but the cause is still unknown. I have mitral valve prolapse (MVP) but they have said that is unrelated.

I am 34 and was at my sister’s wedding as maid of honour.

As I walked down the aisle, I told my friend I felt dizzy and then as soon as I sat down at the end I collapsed onto her lap.

A wedding guest and my two cousins were first aid trained

www.myheart.org.uk

I was asleep upstairs and my mum was in the kitchen making herself lunch. She had the radio playing whilst

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myheart My Story 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 a 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 11 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 paramedics 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 of 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 ECG scans.

As I was brought out of 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. I also didn’t believe the doctors when they told me about what had happened.

I was transferred to the cardiac ward where I was

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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), 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 collarbone. I was scared and unsure, but the fear of putting myself and my family through all this again was too 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 brought on by a cardiac arrest which I somehow managed to come out of on my own.

I was 21 years 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 might set my heart off again.

9 months later and I am still dealing with the effects 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 many 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.

If you would like to submit your story to myheart please submit it via email it to myheart@c-r-y.org.uk with your full name and any photos you wish to include. myheart would like to thank all of the contributors to the 2017 myheart newsletter.

myheart newsletter 2017

#myheartmystory CRY holds a Raising Awareness Week in November every year to raise awareness of cardiac conditions in young individuals. In 2017, it was held d between 18th and 26th November.

During Raising Awareness Week, myheart launched a social media campaign #myheartmystory, requesting members of the myheart network to use the hashtag when sharing their story of living with a cardiac condition. The campaign was very successful and generated some great awareness and attention for myheart. We are thankful to all the members who used this hashtag and shared their story.

Following on from this success, myheart will now be adding the hashtag n to its arsenal of raising awareness tools. We hope to make the campaign a firm calendar event, as well as a social media tool that members can use throughout the year to connect and share their story.

With February being ‘heart month’ each year, we hope the hashtag will become a month-long trend of tweets, Facebook posts, Instagram nd photos and stories of young people sharing their experiences, feelings and thoughts online - to raise awareness and increase the presence of youngg people living with cardiac conditions.

Any messages shared using the hashtag will shared by myheart via our social media @myheart_UK and /myheartnetwork on Facebook.

If, at any other time of the year, anybody feels that they are comfortable sharing their story, we would be pleased to include it in our next enewsletter, on the website and in next year’s hard copy newsletter. You can send your story to myheart@c-r-y.org.uk or share it in the blogging area of the members-only area of the website.

Through raising awareness of these conditions, the public, medical and sporting communities will be alerted to the symptoms that can lead to a diagnosis in the young, as well as the potential risks that these conditions carry for an asymptomatic population.

myheart has a private group on Facebook where people aged 18 and over who have been diagnosed with a cardiac condition can connect and share experiences with other people who have also been diagnosed with a cardiac condition, often out of the blue!

So many people who contact myheart want to talk to others who are in similar circumstances to themselves. The group is a private community for members of the myheart network to share their feelings and experiences with others living with a cardiac condition, and be part of a support network for each other.

The group is private and can only be joined by invitation. The discussions within the group can only be seen by group members.

For more information or to register for the group please visit www.myheart.org.uk/online-support/ private-facebook-support-group

www.myheart.org.uk

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Have you been diagnosed with a heart condition when you thought you were fit and healthy?

We understand that being young and suddenly finding that you need to be treated for a heart condition is not easy. CRY’s myheart Network provides personalised help, support and information to individuals who have been diagnosed with a life–threatening cardiac condition. myheart is a support system for individuals to help develop effective coping strategies and reduce social isolation. The network was developed in response to feedback from young people who found that support groups available were not effective in helping them deal with issues such as fitting of ICDs and pacemakers, and undergoing ablation surgery. myheart offers: • Medical information about different cardiac conditions, tests and treatments.

• Personal stories/videos from other young people who have been diagnosed with a cardiac condition.

• Videos from our myheart Cardiologist answering frequently asked questions.

• A private area of the website for members aged 16–35 which features a members blogging area.

• Meetings for people aged 14–35 who have had a cardiac arrest; have been diagnosed with an inherited cardiac condition; have an ICD; or have been offered an ICD. • A private Facebook group for anyone over the age of 18 who has been diagnosed with an inherited cardiac condition.

How to join myheart Email: myheart@c-r-y.org.uk Online: www.myheart.org.uk Telephone: 01737 363222 (Please ask for the myheart coordinator)

Post: FAO myheart Cardiac Risk in the Young Unit 1140B The Axis Centre Cleeve Road Leatherhead KT22 7RD

How to get involved This is your newsletter - we would like to include your stories and photos. If you have been diagnosed with a cardiac condition and would like to share your story, thoughts and experiences with others, please send in your stories to myheart@c-r-y.org.uk.

Young, fit and suddenly diagnosed with a life-threatening heart condition This booklet – with an introduction from double Olympic gold medallist Tom James MBE, who was diagnosed with a heart condition known as atrial fibrillation in the run up to the London 2012 games – features 10 personal essays from young men and women who recount and talk through their own experience of suddenly being diagnosed with a heart condition. The booklet is for and by the growing number of young people who – thanks to greater awareness and early diagnosis – are learning to live with a diagnosis of a potentially life-threatening heart condition.

Tel: 01737 363222

Email: myheart@c-r-y.org.uk

@myheart_UK

Websites: www.myheart.org.uk

myheartnetwork