myheart Newsletter 2018 by Cardiac Risk in the Young

myheart Newsletter 2018

News and Events | Research News | myheart My Story

In this

Newsletter

Tel: 01737 363222

News & Latest Updates

Research News

Meetings

| 10

CRY Ambassadors #MyHeartMyStory

| 12

myheart My Story

| 15

Getting involved

| 23

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

@myheart_UK

Website: www.myheart.org.uk

myheartnetwork

myheart Newsletter 2018 Welcome from

Inside the newsletter Welcome News & Latest Updates Research News Meetings CRY Ambassadors #MyHeartMyStory myheart My Story Getting involved

2 3 9 10 12 15 23

The Front Cover 1

1. 2. 3. 4. 5. 6. 7. 8. 9.

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:

CRY Heart of London Bridges Walk by Zenia Selby P5 Cake Bake by Liz Bowers-Keable P3 Colour Run by Hollie Bell P6 Cake Bake by Liz Bowers-Keable P3 Joe Street and Evan Phillips’ Swansea to London Run for friend and myheart member, Tim Butt P4 My meeting with Caroline Lucas MP by Joseph Tanner P3 I feel like me again by Nicole McShane P15 Slaying the Dragon… by Sam Godfrey P7

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.

Lily Burke Support Programme Manager Email: myheart@c-r-y.org.uk In 2018, 78 young people with cardiac conditions joined the myheart network, and we now have over 450 members in total. Thank you to everyone who has shared their stories, personal experiences and feelings, to help others who have also been diagnosed with a heart condition. During the year, we added further videos to the myheart website where myheart consultant cardiologist, Dr Michael Papadakis, answered more of your questions. To watch any of these videos, please visit our ‘frequently asked questions’ webpage www.myheart.org.uk/faq. 1,375 people joined CRY at the Heart of London Bridges Walk in June, to help to raise awareness, including a number of myheart members with their family and friends. Registration is now open for the 2019 Bridges Walk, which will follow a new route through London, starting and finishing at Southwark Park Bandstand, followed by the first ever CRY Family Picnic. If any members would be interested in joining the 2019 Bridges Walk on 23rd June, or volunteering at the event, please visit www.c-r-y.org.uk/ heart-of-london-bridges-walk. During CRY’s Raising Awareness Week in November, we were delighted to announce the support of 5 new CRY Ambassadors; Montana Brown, Jade Moore, Calum Haggett, Ivan Thomas and Ben Coleman. England football player, Jade Moore, and Kent County Cricket player, Calum Haggett, were both diagnosed with cardiac conditions during routine heart screenings. They have shared their stories with myheart about how they felt when they were told about their condition, as well as their commitment to helping to raise awareness, which you can read on pages 12-14. Thank you to all members of the myheart network who helped to fundraise for CRY, raise awareness on social media and in your communities, volunteered your time or took myheart literature to be placed in your cardiology departments throughout 2018. We produce this annual newsletter to bring you the latest news and members’ stories from across the year. If you have any questions, find anything amiss or have any thoughts about anything that we could include in the future, please do not hesitate to contact the myheart support team at myheart@c-r-y.org.uk.

myheart newsletter 2018

News & Latest Updates Nikki and Zak Selfi’s Candle Party

Cake Bake by Liz Bowers-Keable

My son and I held a Partylite Candle party on the 22nd February 2018 in our coffee shop, managing to raise £310 for CRY, an amount we are thrilled with!

My meeting with Caroline Lucas MP by Joseph Tanner On Friday 23rd February, I had the pleasure of meeting Brighton Pavilion MP, Caroline Lucas. The meeting was set up by Caroline’s office because she was unable to attend Cardiac Risk in the Young’s Parliamentary Reception in November and she wanted to learn more about the work CRY do. The previous year, Caroline signed the CRY pledge to support a National Strategy for the Prevention of Young Sudden Cardiac Death to help save young lives. Armed with CRY literature and information, I told my story and how lucky I was to be here today. The meeting was brief but informative, pictures were taken and Caroline Lucas showed interest in joining the CRY All Party Parliamentary Group (APPG) and I hope that we will be able to work together in the future. CRY is urging all MPs to sign a pledge to support a National Strategy for the Prevention of Young Sudden Cardiac Death to help save young lives. Current UK policies are contradictory, with guidelines based on inconsistent assessments of the incidence, methods of diagnosis and management of cardiac conditions in young people. By the end of 2018, 130 MPs had signed the pledge for a National Strategy for the Prevention of Young Sudden Cardiac Death. We are so grateful to all CRY supporters who have contacted and visited their MPs to share their personal story, raising awareness of both young sudden cardiac death and cardiac conditions in young people, and encouraging them to support this campaign. If you would like to find out more information about the campaign, including the list of MPs who have already pledged their support, visit www.c-r-y.org.uk/my-pledge. If you are considering writing to or visiting your MP and would like to receive any CRY literature to send or take with you, please email parliament@c-r-y.org.uk.

www.myheart.org.uk

When thinking about fundraising for a charity, CRY was an obvious choice for me as they’ve done so much for my family and I when we were younger. When I was just six years old and my brother hadn’t even turned two yet we lost our Dad; he was just 34 years old himself. This was back in 2003 when knowledge wasn’t as advanced as it is now, so his death was classed as SADS, which can be known as Sudden Adult Death Syndrome. Mums always have a sixth sense when it comes to their children which is why mine insisted on making sure there wasn’t another reason my dad passed away so young. My mum first heard about CRY from the newspaper, she contacted them about our story and we were fast tracked for screenings at St George’s Hospital in London which is where we have remained for annual non-invasive heart tests. Last year, I turned 20 years old and the clinic decided it was time for me to have an Ajmaline test, which diagnosed me with Brugada syndrome. Following my diagnosis, I have created a blog called Brugada Syndrome Diaries to write about my story. This was to let others know that having a heart condition can be scary at times but I found strength and comfort in knowing I’m not alone and that’s what being involved with CRY has made me feel. I contacted my local secondary school in hopes they would be able to facilitate a fundraiser day for CRY. This was about two months in advance of when I was planning the event to happen so there was plenty of time to order posters from CRY and have A LOT of practice tests with the cakes! Luckily my brother still goes to this school and his lovely head of year got back to me and we began throwing ideas back and forth and it eventually came to a two-day bake sale for years 10 and 11. The bake sale was open to all years, but the awareness video I then created was aimed for the two eldest years. This was because CRY’s

News & Latest Updates heart screening programme is for those 14-35 years old, so this gave me a target audience within the school to work with.

me because I have raised some money for the charity that has done so much for me and my family over the years. I have raised a total of £78.72 which, for a local secondary school in a village in the middle of nowhere, is pretty good going! If you would like to read any more about my story, please feel free to visit my blog via the link to learn more http://brugadasyndromediaries.wordpress.com

Joe Street and Evan Phillips’ Swansea to London Run for friend and myheart member, Tim Butt After a close friend of ours, Tim Butt, suffered a near-fatal cardiac arrest we decided it’d be a good idea to go for a run. When preparing for a fundraiser such as a bake sale, make sure you practice again and again just to make sure there are no slip ups! It’s a good job everyone in my family has a sweet tooth because I practiced my cakes that many times I don’t think they’ll be eating anymore cupcakes anytime soon! I knew that I was catering for potentially a lot of people, so around 40 cakes were made each day I had the bake sale and that is a lot of work to do by myself. So, I recruited some help: one of my friends, Natalie, who actually attends sixth form at the school and also my mum, who both iced cakes beautifully and a lot better than I was doing them!

Both days I sold out of cakes and to be honest I never expected to sell out completely on the first day let alone both! I did also make a video which was circulated around all of the tutors who were supposed to show it to their group of kids just to raise some awareness for CRY and the amazing work they do. I decided a video was the way to go because it encourages active engagement within that age group. I wanted it to be something they actually paid attention to and learnt from.

Setting off from the Liberty Stadium in Swansea, we spent two weeks averaging fifteen miles per day across South Wales and through England, all the way to London before then taking part in the London Marathon.

Spending anywhere between three and six hours on the road each day was certainly not the most pleasant experience either of us have ever had. After suffering from separate injuries very early on, it certainly wasn’t as simple a task as we’d both hoped, but the key, as with anything, was to keep moving in the right direction. A massive thank you to everyone who helped out along the way, most notably to Swansea Tennis Centre who enabled us to film our trip. Also a big thank you to those who contributed towards our final fundraising total of £2,808.40. You are all wonderful. To find out more and watch the short video about Joe and Evan’s adventure visit: https://bit.ly/2CVaY4r

For the bake sale to be such a success meant so much to

myheart newsletter 2018

News & Latest Updates Channel Pool Swim by Rachel Collins In 2015 the CRY heart screening at the University of Chester found that I had a congenital heart defect called an ‘atrial septal defect, a.k.a. a hole in my heart nearly 3cm wide! I had a series of tests based out of my local hospital over the next 12 months and in 2017 had keyhole surgery at Manchester Royal Infirmary Heart Centre. This involved placing a wire mesh device across the hole and, over time, the heart muscle grows over it, closing the hole. On 26th July it was 1 year since the operation to repair it and I wanted to do something on the anniversary to repay the charity that helped me. Therefore, to raise money for them, and to raise awareness of the charity, its work, and of undiagnosed heart conditions, I attempted to swim the channel distance in pools over 1 week. I suffered an early set back when I learnt that my workplace pool does not open after working hours outside of term time (which this was), so I had to find public pools to swim in. This was difficult as: 1. Many operated very limited public swimming times so I couldn’t swim for long enough to get my lengths in. 2. Many of them were quite expensive. 3. As it was the school holidays, they were largely packed with kids, requiring some quite zig-zagged lengths!

Once I found places to swim, early progress was good, a bit too good! By Monday I was totally wiped out and getting quite bored of swimming! The monotony was getting to me… 2-3 hours each day of listening to myself blowing bubbles underwater. My neck was also suffering. I had to look forward constantly to ensure I didn’t bump into people, as the public pools were always quite crowded. This eventually put quite a strain on my neck. I had one rest day then cracked back on and eventually arrived in Cap Gris Nez (where ‘real’ swimmers often make landfall) on Friday 27th July. Although 8 days (rather than 7) after I started, discounting

www.myheart.org.uk

the rest day, I still managed to complete the swim in 7 (non-consecutive) days. I was very glad to have finished and although glad I did it, I would not rush to do it again. I was overwhelmed by how many people sponsored my swim and their generosity and kindness. People I have met once many years ago were sponsoring me and wishing me well. They also relayed their own experiences of losing people from cardiac conditions which really emphasised the importance of the screening programme. My colleague at the university who organised the screening has been very supportive, as have Jools and Jonathan Pilkington of CRY who emailed me to wish me well. I’m grateful to all who have supported me during my swim, whether through sponsorship or words of encouragement and I am pleased I can repay CRY in some small way for what they have done for myself and so many others. Without their screening, I would never have known about my condition as I had no symptoms, and would likely have had a shortened life expectancy, preceded by many years of heart problems. I hope the money raised will help CRY continue it’s great work screening young people for undiagnosed heart conditions and supporting loved ones of those lost to them.

CRY Heart of London Bridges Walk 24th June, 2018 by Zenia Selby

This was just my second CRY Heart of London Bridges Walk, and for the second year in a row we had a glorious sunny day for it! Last year my mum and sister joined me and my partner for the walk; this year my partner’s parents came along too. We hope to increase our group every year!

News & Latest Updates We had a wonderful time in the sun, passing London’s iconic landmarks. My sister, a vintage car enthusiast, got excited when she found an orange Mustang, and I had to pay homage to a mosaic of my favourite historical figure: the emperor Hadrian. In fact, he is quite an appropriate icon for CRY – he actually died of a heart condition. But the most memorable moment for me was when we crossed the Millennium Bridge over to the Tate Modern, and looked back to see a stream of CRY T-shirts coming towards us. In fact, as I looked back towards London Bridge, white balloons bobbed in the air all along the river. What a brilliant way to raise awareness. We can’t wait for next year!

Colour Run by Hollie Bell I suffered 1 cardiac arrest out of hospital in my sleep and 2 in the hospital at the end of May at the age of 32. After having palpitations for a year and a half and never really being checked properly it was a bit of a shock. I have a 2 and a halfyear-old at home so it was such a worry he nearly lost his mummy at such a young age. I’ve been diagnosed with a very rare heart condition called Idiopathic Polymorphic Ventricular Tachycardia and fitted with an ICD. I am currently waiting for a plan of action moving forward. I have recently had another episode but luckily my heart recovered without the need for the ICD to shock. I decided to use this very scary thing as a positive to propel myself forward and make sure that I try and raise as much money for CRY as possible, as I was very lucky but so many aren’t. So my first run I did was 8 weeks post-op, 10 weeks since the event happened. I didn’t run the whole distance but managed to walk it in an hour and ran the last bit. I’ve got another couple at the end of September and October. So far I have raised £900 and hopefully by the end will have raised £2,000 (fingers crossed).

Awareness Talk by Liz Bowers-Keable Being a university student, the only public speaking I’ve ever done has been in front of my classmates and even then, I knew who most of them were. When the opportunity came about to speak at one of the West Midlands CARE Team lectures, I was nervous, but I know I just have to keep raising awareness of Brugada syndrome and CRY in every way possible. The CARE Team is ‘A charity providing advanced medical care throughout the West Midlands’ and they are an amazing group of people who volunteer their time to help others and if you would like to read more about them then please visit (www.wmcareteam.com/ index.php)! The aim of me speaking was to raise awareness for CRY and to give an insight to what it is like living with a heart condition like Brugada syndrome. I was so nervous about speaking to a crowd, especially because we never had a definitive number of people confirmed to be attending, we could only guess! Preparing for this I made a PowerPoint presentation to go along with my speech, which included many family photos for people to look/laugh at. But that was the easy part, the hard part was standing there in front of about 40 people trying not to look down at my paper and mumble through every word. My advice would be to definitely rehearse time and time again and also just to take a deep breath if you feel like you’re mumbling or talking too fast! Also have some water with you; dry mouth almost got the better of me at some points during the lecture. We were also kindly gifted a giant Thornton’s chocolate hamper to sell as part of a raffle after the lecture. As you can imagine the raffle tickets sold very quickly! Overall that evening we earned just over £60 and I gained some experience I will definitely use again in the future. Big thank you to the West Midlands CARE Team for having me! If you’d like to learn more about why I fundraise for CRY, then feel free to visit my blog on https:// brugadasyndromediaries.wordpress.com!

Wedding Gift Donations for CRY by Mallory Brand I recently got married and gave guests the option of donating to CRY as part of my gift list, and raised £120 from several of my guests.

myheart newsletter 2018

News & Latest Updates You can read Mallory’s story of being diagnosed with Wolff-Parkinson-White Syndrome at www.myheart.org.uk/ mallory-brand

and conditioning work. That’s a full-time job, on top of all the others ‘adult’ responsibilities. I was lost. Anyway, we continue to move forward, my diagnosis remained what we thought and the options I was given were limited. I take 10mg of Ramipril - I did not want to be on Beta-Blockers or blood-thinners for personal reasons - but fortunately my diagnosis wasn’t severe enough to give me no other options. So, I changed my diet to a plant-based diet and altered my training style to a very calculated and limited one, allowing me to work on a better ‘base fitness’ and drop some unnecessary muscle that would only continue to add more workload to my already struggling heart.

Slaying the Dragon… by Sam Godfrey A little about me. I’m 34 and have spent most of my life in competitive team and solo sports, from football, rugby, athletics, weightlifting and powerlifting to running and cycling. I was active from a young age, starting to play competitive football from the age of 7 and it was my physical ability that lead me on to join the Royal Marines when I left school. It was my departure from the Royal Marines back in 2004 that highlighted to me that physical well-being went handin-hand with mental well-being, which is something that I will continue to actively promote and encourage to anyone who would like to listen. Fast-forward to late 2016/early 2017. I’m weightlifting and cycling. I’m not tall, a short 5’5, pushing 5’6 with a good night’s sleep and some smart shoes, but I weighed a very compact 80kg. But the cycling bug had got me and mixed with my determined (and stubborn) mentality, I was going to drag my very heavy frame up hillsides and mountains on a bike, by hook or by crook. Well, until I started to get palpitations and the long-standing jokes about my incredibly high heart rate painted a much more sinister picture. I went to my GP. I had no idea what was next. I was unaware of CRY at the time, but fortunately I have private medical care and I was put through a number of screenings and tests within a very short space - ECG’s, Echo’s, 24/7 monitors, bloods tests and MRI’s. We found the problem. Dilated cardiomyopathy. Although it was hard to confirm 100% at the time, the signs suggested this was the case. I was put on immediate rest by my cardiologist for 3 months, not knowing if or when I would ever be able to train again. We worked out that I trained anything between 25-35 hours per week, a mix of cycling and functional strength

www.myheart.org.uk

It’s June 2018, I’m around 30lbs lighter than I was during my symptoms, I’ve not had a palpitation since and my working heart capacity has increased by approx 10%. The training paid off. Here’s a couple of images from the Dragon Ride (I’m the ginger one), a 153km cycling sportive over the Brecon Beacons, South Wales. It’s a monster, but I finished it strong and damn did it feel good. For this event, my amazing friends and family shared my story and my employer also helped raise more money for CRY. In total we reached £1,600. I’m so happy. I hope that it can be used to support others wanting a diagnosis or support when needed.

But what next? In March I am doing my first half-marathon in Bath and in June I’m returning to the Brecon Beacons to attempt the 230km (143 miles) Dragon Ride. Wish me luck. I would like to say a huge thank you to everyone at CRY for their support throughout the event and I cannot wait to continue my support for an incredible charity over the coming years.

News & Latest Updates New Videos Filmed with myheart’s Consultant Cardiologist In February 2017 CRY launched a new YouTube channel for the myheart network. Videos have been posted from our Consultant Cardiologist, Dr Michael Papadakis, as well as videos from members of the network where they talk about their own personal experiences. In 2018 we invited members of the myheart network to send in any questions they had which they would like to see Michael answer in future videos. A number of new Q&A videos were added to the channel throughout the year, including:

Some of our members have shared their own personal vlogs where they discuss how they felt when they were diagnosed, or their experience of having different tests or procedures done. If you would like to send a short video of your own experience, please could you send this to myheart@c-r-y.org.uk.

New DVLA Guidelines for individuals with cardiac conditions We have been told there has been an update to DVLA advice for medical professionals when assessing drivers with cardiovascular conditions. This may not be relevant to some of you so please check their website according to your circumstances.

• What are the arguments for and against ablation?

They have included specific sections on LQTS and Brugada syndrome.

• I had a successful ablation for Wolff-Parkinson-White syndrome – is there an increased risk that the condition could return during pregnancy?

All LQT patients must inform the DVLA and those with a QTc >500ms must not drive until formal DVLA communication, regardless of symptoms.

• Does a catheter ablation procedure weaken the heart in any way?

There is information on the government website which gives guidance to medical professionals to use when assessing drivers with cardiovascular disorders

• What is the normal recovery time following a catheter ablation?

www.gov.uk/guidance/cardiovascular-disordersassessing-fitness-to-drive

• What happens during an ajmaline test? • How do we know if ajmaline just happens to produce an ECG change that only looks like Brugada?

It is important that any questions regarding driving are discussed individually with a specialist cardiologist who will be able to help with offering the best advice for your personal situation.

• What does the input of ajmaline ‘mimic’ in terms of lifestyle? To watch these videos, visit www.myheart.org.uk/faq. If you would like to submit a question to be asked next time we film members’ questions with Michael, you can also find a form on this webpage to submit a question. All questions are asked anonymously.

If you would like to raise awareness of CRY, please email myheart@c-r-y.org.uk for literature and posters.

myheart newsletter 2018

Research News Interview with Dr Sabiha Gati about her review paper, ‘Exercise recommendations in patients with valvular disease’ Sabiha started as a CRY Research Fellow in 2010. She was the first CRY Fellow to complete a PhD, winning several awards and prizes for her research. After completing her PhD and specialist training, Sabiha embarked on a 12 month fellowship training in cardiac MRI at Royal Brompton Hospital and subsequently worked as a Consultant Cardiologist in the unit. Sabiha currently works as a Consultant Cardiologist at Lister Hospital, Hertfordshire and continues her CMR work at the Brompton Hospital. Sabiha is also an associate editor for the EHJ-Case Reports. Sabiha has had publications in a number of leading medical journals and is actively involved in CRY’s screening programme. Why is valvular heart disease important in the young population? Valvular heart disease affects approximately 3% of young individuals. Many of whom aspire to partake in competitive sport or high intensity recreational exercises. Research supported by CRY screening program has shown that 1 in 100 individuals have a minor cardiac structural abnormality such as bicuspid valve disease, mitral valve prolapse which requires surveillance throughout life. Therefore, early identification may prevent future heart complications. Why does valve disease progress with exercise? Reports on the natural history of valvular heart disease in exercising individuals is limited. However, there is a theoretical possibility that a large blood volume pumped out by the heart during exercise associated vigorous heart contractions may accelerate valve problems and may subsequently causes changes in the heart structure, function, electricity and even lead to sudden death. How is valvular heart disease managed in exercising individuals? The management of exercising individuals with valvular heart disease requires a structured approach which incorporates 1. Assessment of symptoms such as chest pain, breathlessness, dizziness and fluttering in the chest. 2. Assessment of functional capacity

www.myheart.org.uk

3. Type and nature of valve disease. Is it a left sided or right sided valve problem and is the valve narrowed or leaky. 4. The impact on the heart structure and function Which valve abnormalities are common in young individuals? Mitral valve prolapse and bicuspid aortic valves are the most common valvular abnormalities in the young exercising individuals. The good news is that the risk of adverse events is low but both valve abnormalities can be associated with important complications that require monitoring with an ultrasound scan of the heart. Young people with minor valve abnormalities can compete in any sport. Those with moderate level of disease with require some further tests including an exercise treadmill test to assess how they do. What advice would you give to exercising individuals with valve disease? Exercising individuals with valve abnormalities should undergo yearly to 2 yearly assessment depending on the severity of valve disease they may have and we should inform them about the warning symptoms of progressive deterioration of valve disease.

For more information on CRY’s research please visit www.c-r-y.org.uk/research

Meetings March 10, 2018 The first national myheart meeting of 2018 was held at Friends House, Euston with 18 members registering to attend. The day began with an informal chat with cardiac nurse, Amanda Potterton, giving members the chance to introduce themselves and share their experiences. After Amanda’s session, guest speaker, Sue Jones, former Pacing and ICD manager, facilitated the session. After lunch, myheart cardiologist Dr Michael Papadakis offered the opportunity for those attending to informally discuss any of their medical queries.

November 24, 2018 Again the national myheart meeting was held at Friends House, Euston, with 11 members registering to attend. Cardiac nurses Amanda Potterton and Polly Castello opened the day, inviting members to introduce themselves and share their experiences. After lunch, Dr Aneil Malhotra, former CRY Research Fellow and Clinical Lecturer in Cardiology at St George’s Hospital, held a session where members were given the opportunity to discuss any queries about their cardiac condition.

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 • Have suffered a cardiac arrest • Have been diagnosed with an inherited or potentially inherited cardiac disease 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. 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 2019 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.

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. 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.

myheart newsletter 2018

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 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

www.myheart.org.uk

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 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

CRY Ambassadors

CRY’s wealth of support continues to grow in new ways. For years our Patrons have supported us, accompanying the valued attention that celebrity brings with efforts to raise funds and awareness that we have always greatly appreciated. Now, we’re expanding this kind of backing with a new role: CRY Ambassadors. CRY is looking for individuals who have achieved recognition in their field, who can work with us to raise awareness and share our key messages with their followers. Ambassadors may also attend certain events and support CRY’s campaigns, as Montana Rose Brown did last year with our #CRY4Friends campaign. Most Ambassadors will have a personal connection to CRY’s work, whether it’s due to their own experience with a heart condition or knowing someone who has been affected. Currently, our Ambassadors are: Montana Rose Brown, who appeared on ITV’s Love Island and has since gone on to present for MTV News. Montana lost a close friend, Harry Faulkner, to a young sudden cardiac death in 2013. Jade Moore, a professional footballer for Reading FC and

the England Women’s National team. When Jade was 17, a routine heart screening at a football development centre found that she had two holes in her heart. Calum Haggett, a professional cricketer for Kent County Cricket Club. When he was 19, Calum was diagnosed with aortic root dilation and a leaking heart valve at a CRY screening. Ivan Thomas, a professional cricketer for Kent County Cricket Club. After the death of Thomas Hardman, a former teammate who tragically died at just 21 years old, Ivan has had a personal connection to the charity for several years. In 2015, Ivan completed a Land’s End to John O’Groats cycle and the Three Peaks challenge for CRY. And in 2017, a CRY screening found that he had an issue with his heart which required surgery. Ben Coleman, a professional squash player who represents England. Ben lost a close friend 10 years ago while they were participating in a cross country race. To get to know a couple of our Ambassadors a little better, we spoke with Jade and Callum about their experiences as professional athletes after being diagnosed with cardiac conditions, the impact it had on their lives at the time, and why they were so keen to support CRY.

myheart newsletter 2018

CRY Ambassadors - Jade Moore It’s been 11 years since Jade Moore’s diagnosis. While waiting to head to an afternoon practice following a routine cardiac screening, she was suddenly told she’d have to stay put.

miss games, because I’d have a really big swelling on the leg if I took a big contact or anything like that… I’m quite a physical player when I play football, so it was very hard for me – I couldn’t change that, so I had to deal with the aftermath.”

The tests had found a hole in her heart Recent CRY-supported research, published in the New England Journal of Medicine, found that out of 11,168 young footballers screened over a 20-year period, 74% of those who were diagnosed with a condition were able to continue playing after corrective procedures. This shows just how effectively many conditions can be dealt with once a screening is completed. One of the benefits of being an athlete is having access to this kind of routine screening. However, all young members of the general population, including grassroots level athletes, need to have access to screening as well. Thankfully in Jade’s case, her diagnosis did at least bring more attention to the issue. “I think with one of us out of a potential 60 or 70 players [at the development centre] to have something like that, and then it would have to be operated on, I think it sort of hit home a little bit that it could happen to anyone… “I think for the FA at the time that it happened it really sort of opened their eyes that they probably need to do more to make sure that women players within the leagues and the structures below are screened.” “One of the first things that happened when they’d seen something on the first echo was they stopped me from going to training that afternoon,” Jade said. “So, I think one of the first emotions was I wasn’t scared, I was more frustrated at the fact that I would have naturally been training anyway, do you know what I mean? If I hadn’t have had that scan. So, I was frustrated at the fact that these people had come and done the scan and were like, ‘no, you can’t train now.’ And I was like, ‘well, how is that even possible? I would have trained if you wouldn’t have been here.’ So, I think it was more the disbelief that they were stopping me doing something that I was at Loughborough to do.” A couple of days later Jade found out that there wasn’t just one, but two holes in her heart. She had surgery and was able to return to playing football after about three weeks. Jade explained that the biggest adjustment for her following surgery was being put on blood thinners. “Obviously with football being a contact sport, after any sort of training or game if I’d had a knock I’d really, really bruise bad. Those were the things that would end up hindering me more in that sort of next six months when I’d come back from the surgery. They would be the thing that sort of either made me miss training or made me

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As Jade continued to talk about screening it was evident how much things need to improve in women’s football. “I think for the Premier League players a routine screening is part of their medical to get signed at the club, but I know that’s not the case in the women’s game,” she explained. “I think it was probably only a couple of years ago that the FA had to go around and make sure that the clubs within the women’s Premier League that they had to make sure that their players had been screened. So, there’s still a lot of work to make it mandatory within the women’s game.” The need for all young people to be screened is something that Jade wants to make more people aware of, and a key reason why she wanted to support CRY. “I think obviously being diagnosed with what I had, with two holes in my heart at a young age, opened my eyes that even though you’re an athlete it doesn’t stop you from having a potential heart problem. So I think that was a big thing for me that it doesn’t matter if you’re fit and healthy, you can be training to the best of your ability but still have something that’s sort of under the surface that you may not be quite sure about. So that side of it was a massive pull for me [to support CRY], because it doesn’t matter who you are, what you do, it’s definitely something that you need to go and get checked out.”

CRY Ambassadors - Callum Haggett The last thing on Calum Haggett’s mind was a potential heart problem, let alone open heart surgery. As a young, fit athlete who had just been selected to play for England in the Under-19 Cricket World Cup in New Zealand, he made the assumption that most young people do – I feel healthy, so why question it? Then, thanks to the routine heart screening completed by CRY, Calum, now 28, received his diagnosis. Then, thanks to a routine heart screening completed by CRY, Calum, now 28, was found to have aortic root dilation and a leaking heart valve.

about three months just sort of ticking along, getting my base fitness level up, which was quite hard to start with.” Of course, professional athletes are in a different situation to the general population, requiring them to participate in consistent high-level training. But once a diagnosis is made, there are various ways to ensure a safe, healthy life moving forward. CRY screened 29,045 young people in the 2018, and at least 280 will have received treatment, lifestyle advice or surgery having been diagnosed. “I’ve definitely been one of those people that would have said, ‘I’m healthy, why do I need to get checked?’” Calum said when discussing how his diagnosis and surgery impacted his teammates. “That would have been my view beforehand. I’m sure that would have been the case with a lot of other players. I was with Somerset and now with Kent for quite a number of years, and I guess when they see it first-hand that it can save lives it does open their eyes. It’s happened twice in our team with Ivan Thomas having an irregular heartbeat. He had to have an operation on his heart and it just brings it home again.” If there’s one positive to take away from situations like these, it’s that vital awareness can be raised. Due to cases like his own and that of former England cricketer James Taylor – who was forced to retire at just 26 years old after he was found to have arrhythmogenic right ventricular cardiomyopathy (ARVC) – Calum feels that awareness in the cricketing world is starting to increase.

Shock was Calum’s first reaction. “I definitely wasn’t expecting anything like that,” he said when recalling his diagnosis. “I can remember thinking, ‘can they actually do anything?’ Because I had no idea what was wrong really.” 80% of young sudden cardiac deaths occur with no prior symptoms. In most cases, the only way for young people – from professional cricketers, to grassroots-level footballers, to any young member of the public – to find out what’s wrong is through screening. A common lack of symptoms and people simply not realising the potential risk means that many conditions tragically go unnoticed. “I didn’t really know what would happen,” Calum said when discussing his diagnosis. “I guess at that time I didn’t really worry if I couldn’t play cricket again as long as I was healthy. That was the big thing for me. Then as soon as I found out that once the surgery had gone well I’d be good to go, then I was pretty happy to get back going again.” Thankfully for Calum, he was able to return to cricket a few months after corrective surgery. “It was a pretty easy process considering it was quite a major operation. I spent a month not doing very much afterwards and then spent

“The James Taylor [diagnosis], because he was playing for England at the time, having someone like him – I mean, it’s tragic what happened – it’s now raised a little bit of awareness,” Calum said. “And I think players are definitely more aware of it, and hopefully kids and parents will be. Because someone like him was at the top, and for it to happen to him means it can happen to anyone.” When asked what he hopes to achieve through his role as a CRY Ambassador, Calum said: “Definitely raising awareness and getting rid of that ignorance of, ‘I’m healthy, so I won’t get checked.’ Because I know that I would be in that boat if I hadn’t have had it or seen it firsthand… I know there’s a lot of work that needs to be done.” CRY is so thankful to have Calum’s support. There can often be a misconception that heart problems only occur later in life, but that simply isn’t true. We need to continue increasing awareness, and work to gain the support of policymakers and MPs who can help make a difference. With the help of our new CRY Ambassadors, such as Jade and Calum, we can continue to raise awareness of how vital screening is, reaching fans of their respective sports (football and cricket) who might not otherwise know about young sudden cardiac death.

myheart newsletter 2018

#MyHeartMyStory I feel like me again by Nicole McShane 12 years ago, last year, last week or even yesterday; it doesn’t matter how long ago it was when they died of an undiagnosed genetic heart condition. Unfortunately, they’re still not here today and the pain of losing them most likely won’t have subsided. However, as time moves on, you’ll remember what it feels like to feel again. To feel hopeful and optimistic and, dare I say it, happy. Of course between these occasional positive moments there will be regular feelings of hopelessness and a deep sense of loss, but this doesn’t last forever. 12 years ago I was almost 14 and my aunt was 13. She died. She’d passed out many, many times from the age of 7. She’d given up almost all physical activity. Relaxing and ‘taking it easy’ indoors became the norm on warm summer days, getting over excited was cautioned against; surely not what you’d expect for children! Her blackouts became part of our normality, that was until one day when she would pass out, faint, black out for the last time, die for the first time. It didn’t matter what we’d call it, she just wasn’t coming back. A loved daughter, aunt and niece gone, leaving a whole family devastated, for a second time. We’d later find out that what went undiagnosed was a genetic heart condition, though it would be some time before we’d discover which of the many it was. It may seem as though I’m making light of this truly traumatic time, however I feel I can only speak this way now because of time itself. 4 months later, school had finished that day for summer. I was due to perform solo on stage to an audience of 200 for the first time at an end of year celebration. I clearly remember walking on stage. I next remember holding my granny’s hand in a hospital bed (I was in the bed). I was so concerned that the nurses would be judging my dreadful costume and I was terribly confused as to why I was there. I later found out that I’d walked on stage, got most of the way through my performance before passing out, just as my aunt had many times before. It was happening again, my family thought. As a naive teenager I protested that I wasn’t the same, it had never happened before on stage, I was just nervous this time, it was the heat, I hadn’t eaten enough that day, I’d exercised and played sport a lot and it never happened to me the way it happened to her – the adults in the family were having none of it!

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4 weeks in hospital during the school holidays followed, as did many tests. It became apparent quite quickly that I had an irregular heart beat rhythm. I thought this was great – I know what’s wrong, can I leave now and enjoy my summer holidays please? NO. They needed to pin down which heart condition I had. I was bored. The sun was shining. I had too many leads keeping me within a short distance of my bed in the “old people’s” ward. I wanted to be out enjoying the sun on my holidays. I simply could not have the same condition as my aunt, I haven’t had a single symptom since. I haven’t passed out since. They can’t find a condition that I’ve got. Just LET ME GO HOME! But no, that treadmill test was the only one that faithfully highlighted that my heart beat was irregular. The weeks went by, frustration mounted and then I was informed – You’re having an ICD implanted. A what now? No, they hadn’t figured out what was wrong with me. They just decided that having this large box put in my shoulder was the best precaution they could come up with to allow me to live a “normal” life. To say I was reluctant would be an understatement. I had no choice. My parents and the doctors were in control as I was not legally old enough to consent. As a hormonal teenager, I was not the most pleasant person to my parents at this time. They did this to me and there was ‘nothing wrong with me!’ The operation went ahead. My first T-shirt afterwards had to be cut off as I couldn’t raise my arm high enough to remove it. I spent the rest of the summer living in vests which were easy to remove and scarves which covered the wound plaster. To the dismay of my parents I was on my bike the day I returned from hospital – I could only reach one handlebar (it wasn’t the best decision I’ve ever made). Rumours of me almost dying had just barely subsided when I returned to school that September. Though it was not the same, I was no longer allowed to take P.E as a GCSE option, I wasn’t even allowed to participate in any of the P.E lessons – this was incredibly difficult for me to deal with – I was competitive and had always loved P.E. Outside of school when I played football with my friends, I was rarely passed the ball now and noone dared to tackle me on the field. My whole world had changed. Oh and I had this lump in my chest and a horrid scar as a result of an infection when healing. Life had reached a new low. 18 months later I was, figuratively speaking, dragged to see a psychologist. I said nothing for the first two sessions because ‘I was fine and didn’t need to be there’. In the third session I just cried, in the fourth we finally started talking. I hated going every week. However, with the power of hindsight and perhaps a dash of maturity I can say that those sessions were one of the most beneficial things to aid my recovery. My body had long healed. My family were more than supportive. But my head was messed up after

#MyHeartMyStory my world had been shaken harder than a magnitude 10 earthquake. The sessions certainly weren’t an instant fix but they did a lot to help. I eventually got a diagnosis. CPVT. Catecholaminergic polymorphic ventricular tachycardia, what a mouthful! I remember being relieved – who would have thought? It meant that all of this hadn’t been for nothing. Nothing really changed with diagnosis other than having peace of mind. I continued to be treated medically in the same way – I just knew what I was being treated for now. My mum and grandad also had the same condition and mum would later have an ICD fitted too. 3 years after having my ICD implanted, I was sat in an English lesson and I began ringing like an old mobile phone. I didn’t know at the time, but my battery was low and I was due for a replacement. It went smoothly and the scar was much more incognito than the first. Life went on as ‘normal’. I was now used to having this thing in me. I knew how to field the questions that came when wearing a vest or bikini in new company. I knew what to say when asked why I wasn’t drinking that jagerbomb. I knew what to say when everyone else was going scuba diving and I was sitting out. I still struggle to communicate just feeling tired for doing nothing. I still struggle to express that I physically don’t have the energy to have a shower right now. I still struggle. At some point in 2015 I first attended the gym with a friend that knew me well and all I’d been through. They talked me through the equipment and how to use it. They understood how to push me just enough that I was pushing myself but fully understood the difference between ‘my heart can’t do this’ and ‘I’m just not trying right now’. These gym sessions were a far shout from the adrenaline junkie roller coaster rides and roller blading I loved in the past but despite being new to me, I felt like I’d missed them. Over the next few years I began going to the gym, attending gym classes, playing recreational netball, I began regularly riding my bike – I was beginning to enjoy many of the things I had done before my life came crashing down. I even took adult swimming lessons and had a surf lesson. I moved away from home again and began commuting to work on my bike. Until one Friday when that old mobile phone sounded again. I was due another battery replacement. I lived alone over 100 miles away from family: ‘how would I cope?’ is how some people might have felt. For some reason I felt I could do this on my own this time. I mean

I’d mastered the side plaits. I’d get the bus to work, what else would I need? I scheduled my operation for the beginning of the 2 week Christmas holidays. I returned to see my family over the same period and my, my, wasn’t I glad. There were many silly things I’d forgotten that I’d need support within the seven and a half years since my last operation. Though nothing so defeating to prevent me from returning to work as normal after Christmas. A kind colleague offered me a lift for a while and before I knew it, I was back to riding my bike to work again. That first cycle was difficult. The first gym class was worse! Where had my fitness gone? I vividly remember fighting to the end of the 11 minutes it took me to run 1km on a treadmill. After all the effort I’d been putting in the gym before my operation, my PB’s seemed like they’d belonged to someone else. But I needed and wanted so badly to get back to that level. Every gym weight felt like 10 tonnes! I gave up. I’m not a defeatist person, I turned to a new challenge. A year prior my mother had run two 5km races. She is not into exercise and had never done this before. I was 20 years younger and struggled to run 1km; yes I have a heart condition, but so does she! I could do this! (It never once felt like I could). But I did! I trained and I found it boring and difficult but I finished my first 5km park run in 33:25 and I even enjoyed it! Or at least I enjoyed it enough to do it again. This time I did a 5km Santa Run in aid of CRY and raised £220 as a result. I’d go on to do 5km park runs twice monthly; summit Angel’s Landing in Utah, USA in 30+ degrees; climb Croagh Patrick and Culcaigh Mountain at home; and finally, after two failed attempts (one due to weather, one due a shock from my ICD), climb Mount Errigal. By this point I was back attending gym classes and soon to be hitting my late twenties, I began thinking about my ‘before aged 30 bucket list’ – triathlon was still unticked. I completed a novice triathlon! It felt amazing! It was the first time in longer than 12 years where I truly felt the zest for life that I guess I’ve always had but that had somehow got a little dusty. The training was difficult. There were many a days when my heart just could not do it despite having trained harder at other times. These are the days when it’s easy to feel hard done by and get a sense of feeling sorry for yourself. But that achieves nothing. It doesn’t make you feel good mentally or physically. Today is

myheart newsletter 2018

#MyHeartMyStory a bad day but this evening or tomorrow will be better. I’ve never spoken publicly about my heart in this way before; but something yesterday inspired me. After 12 years I wanted to share my story. It’s hard, it really is at times, but that’s a side I only barely let my family see. They know I’m more than my heart condition and I know I’m more than that, even when they have to remind you to think of all that you can do and have done when you’re jealous of their planned Thorpe Park escapades. Having a heart condition sucks. There will be hard times, but there are also pretty spectacular times. It’s important to just pick yourself back up and let the heart keep beating!

My Heart Story by Rich Morris Hi everyone, it has taken me a long time to find somewhere to share stories, thoughts and experiences with others in a similar position. And it feels good! I have been active throughout my life, playing every sport accessible to me. My first experience of any cardiac issues was at around age 18. I think I had overindulged on beer one evening and found my heart racing and struggling to catch my breath. It was only a brief episode and I soon recovered. A few months later, I was competing in a county golf match. I had just sank a winning putt and suddenly my heart started to beat rapidly. A team member took me to the nearest hospital. They rigged me up to an ECG, and decided to blue light me to Gloucester Royal Hospital where my heart rate was slowed from 220 bpm in AF, back to sinus rhythm. With no further diagnosis or medication, I carried on with my life, not thinking about it too much. At 20 I successfully joined the police force, starting my new career with West Mercia Constabulary. During my first year my cardiac symptoms started to repeat. With no official diagnosis and the force doctor unable to pass me as fit I was unfortunately discharged. After this knock back I decided I needed a diagnosis, otherwise my life would continue to be disrupted. It took years of 24 hour heart monitors, beta blockers, chest x-rays, ECG’s, and cardiac imaging to finally get to see an electrophysiologist. Dr Rajappan was fantastic, looked at my notes, and could see it was having an impact on my life. Being unable to play football with my son and go

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trampolining with my daughter was heart breaking. He offered an ablation to study the heart and see what was causing my symptoms. I did have a rough time leading up to the ablation - divorce and diagnosis of Ulcerative Colitis - however I was actually positive about coming out the other side even stronger. I had my ablation on 21st Jan 2015 (then 31) and finally found out what was causing the symptoms. I had an ablation for Atrial Tachycardia and probable AVNRT. These tachycardias were degenerating into Atrial Fibrillation and causing a dangerously high irregular heart rhythm. It took around 2 weeks to feel myself again, however the team at John Radcliffe were amazing. I have since had lots of palpitations, I am unable to sleep on my left side and unable to push myself physically as it reproduces cardiac symptoms. However, it has not gone into an abnormal rhythm since the ablation 3 years ago. I feel I need to see my electro-physiologist again soon as it is starting to impact my life again, however I have not given up hope in getting back to full fitness one day.

The price of always being right! By Charlotte Monins I’m always right! Friday 15th December was the one day I wish that hadn’t been true. That was day that after months, well years, I finally got a diagnosis. Brugada! A hereditary condition that puts me at risk of cardiac arrest (apologies if that’s not quite the definition it’s all still very new). I’m first in the family with the diagnosis. Since 15 I’d been mentioning palpitations. Having had a thyroid issue as a teen I was always just given blood tests to test thyroid levels (came back fine obviously) and told to just get used to it being one of those things. In the last year I wasn’t having it anymore; they were lasting hours. It turns out my definition of palpitations had been slightly different to what a GP had assumed. When the GP finally acknowledged it, I was at the point of screaming for help; I’d been given an echo/holter monitor and I don’t know how many ECGs are in A&E. Yet these showed nothing wrong. I was starting to think it was all in my head. I was right! There was something wrong!

#MyHeartMyStory Blogs by Adam Brown

employer wouldn’t accept this, so I had to find another job.

1.The beginning of surreal chain of events

From this day forward, I started to get palpitations quite often, normally when I was stressed about something. I always remember the time I thought I was running late for work and I had palpitations then for around 5 minutes. I went back to the GP many times just to be told I’m stressed.

It was a big day for me. It was the day I played my money match for a few thousand pound prize. It’s safe to say I felt the pressure. After going 1-0 up in a race to 15 games, things started to turn ugly. Firstly, I started to get confused about what I would do normally in simple situations in a game of pool. Then the nerves become greater, which made my vision start seeing stars at this point! I decided to grab some of my drink. As I returned to the pool table, the room went black and I fainted. My heart was racing and it felt like it was going to rip its way out of my chest. I went down like what can only be described as a tree. I felt hot and sweaty more than I ever have before. After a good 10 minutes of being crowded, I finally woke up. It was like my body cut out and went to sleep. Luckily for me, a keen pool player was watching the match and also is a paramedic. After 2 hours of waiting for an ambulance, I was taken to Leighton hospital and discharged a number of hours later. No follow up was to happen after this surreal event. 2. My condition made me realise how precious life is! June will mark 4 years since I first discovered something wasn’t right. I was playing pool at the time in a competition match for prize money. There was a lot of pressure and my body could feel it. I was winning 1-0 and all of a sudden I started to go dizzy so I decided to have a drink and try and relax. I returned to the pool table to take my turn and next thing I knew the room went black and my heart was racing. I woke up around 10 minutes later not knowing what had gone on. After 2 hours of waiting I was taken to hospital via ambulance. After explaining all of my symptoms which consisted of my heart racing, sweating, dizzy and effected vision, I was discharged with heat exhaustion and dehydration. I didn’t know what to think other than something wasn’t quite right. The next few days I felt unwell and underwater so I called into work sick. After being off for a few days I returned to work to be told to go home. They later revealed I wasn’t allowed to return to site until I could prove I wouldn’t black out again. This made the situation a million times worse. Nobody in the world can prove they will never black out. My GP even declared me fit for work, however my previous

The second time I collapsed was at work’s Christmas party. I did not drink much alcohol, just a bit of dancing which led me to collapsing on the dance floor. I got checked out by paramedics who said I was fine and okay to go. The day of a friend’s wedding was the next event and I attended the evening party. I was having a great time dancing and the next thing I knew I woke up around 5 minutes later in a pool of blood from my eye which I had split from the collapse. I was rushed to Nottingham Hospital and discharged the same day. A letter was sent to my GP. Each time tested my ECG was normal. My GP finally referred me to hospital under the Cardiology department as I explained I was still getting palpitations. I was put on a 24 hour ECGs which showed nothing and then a week long ECG which again showed nothing. My cardiologist made the decision to implant the reveal device. At this point, my heart was becoming progressively worse. Only 2 days later, I received a call to get to hospital right away as my cardiologist wanted to see me. He gave me a low dose of Bisprolol to try.

The tablets seemed to be working for a while, however, after some time, the palpitations returned faster and harder than ever before. It was winter 2016 and it was cold outside and my heart began to palpitate whilst de-icing my car. From here I knew this was going to be a bad day. I was midway through my warehouse shift and I felt dizzy. My heart raced and I went blind. My vision returned blurred, however I held my fingers close to my face and couldn’t

myheart newsletter 2018

#MyHeartMyStory see them. I knew this was serious, I was sweating like I had done a marathon. I wasn’t thinking straight at all. I decided to call my doctors and ask for an appointment and I strangely got one! However, my team leader stopped me and made me ring 999. I’m one of the people who are very reluctant to dial 999 for some reason. I didn’t feel this was important enough. The ambulance arrived in super quick time with a cardiologist who plugged me in. It was at this point we realised how serious this was. My heart was racing at 288 beats per minute. I remember him saying to the crew get the stretcher this is serious. At this point my hands were blue due to lack of oxygen in my blood. When chatting to the cardiologist who told me the situation he said two sentences which will stay with me forever: “If you were any older, you wouldn’t have survived this” “If you do go, then I’ll do everything I can to get you back” I asked questions like “will I be okay?” He didn’t reply to them. We made the trip to the Royal Stoke and the Resuscitation team managed to calm my heart down and move me into the Coronary Care Unit. I was being observed for several days with the odd run of palpitations and odd beats here and there. After a few days had passed, I was moved onto a ward and then my tablets increased to the maximum dose with the view to go home. I wasn’t happy with this as the tablets were having a bad effect on me with the side effects such as feeling down and not wanting to do anything. I stayed in because I refused to be discharged, this proved to be the right thing to do. Later that evening, my heart played up again with long runs of palpitations setting off the alarms connected to my chest. That same evening whilst resting, it happened again - so the doctors decided to run an ECG whilst having a 1 to 1 supervision - this lasted for 12 hours. The ECG showed where the problem was and put me in for MRI scans first thing. The results showed a scar in between my heart and heart wall which created these palpitation beats. My cardiologist decided to put me in for a VT ablation.

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I was told this would be a short operation in which they would go through my groin in the artery leading to my heart to ablate the affected area, which is burning on the area which was causing me problems. However, when this was taking place, my heart went into overdrive which caused me to black out twice which resulted in a shock from the defibrillator. I remember waking up and thinking I’m not coming out alive. This made me think of the people I love and the last things I did and said to them. We discovered the operation was unsuccessful and we needed to act differently so he placed me on two drugs and offered me an ICD (implantable cardiac defibrillator). I accepted this and had the device implanted. Since then (touch wood!) things have been great and I’ve only had the odd run of palpitations. I’m still being monitored 24 hours a day by my device which transmits data back every day. Not only does it provide me with a shock if ever required, but pacing to help my runs of VT. Before leaving hospital, me and my fiancée analysed life and how precious it is. We decided to try for a baby when I was fit and well. Natasha was my rock and helped me every step of the way. We have since had our baby girl who is now 9 weeks old. Life couldn’t be any better - I was so lucky! Now my defibrillator sends daily data from my heart’s activity for them to analyse - this is so clever and impressive. If any problems are found, they give me a call. I now take 2 types of tablet (Flecainide and Bisoprolol). I take these 3 times a day; they are so good and I feel a huge difference. Whilst I was in hospital, I had a text to say one of my friends had been rushed in too, due to his heart, but he didn’t make it. His brain was starved from oxygen for too long. The decision was made to switch off life support. I was thankful to the staff for letting me say my goodbyes even though it carried risk. I still carry Carl’s poker chip in my wallet as a good luck item. It’s working so far! Carl’s parents made the hard decision to donate his organs. Today he’s saved many lives. How amazing! If my experiences taught me anything it is that life is too precious and short. So, live it how you want to! Any concerns you have, whether it be your heart or any part of your body, always get checked out. Sometimes the smallest symptoms can lead into something much greater. I would like to give a special mention to the Cardiology team at the Royal Stoke University Hospital who looked after me every step of the way. Thank you also to Dr Morley Davis, you have given me the chance to live a normal life which I will forever be grateful for. If you’re in doubt about your heart and you feel the doctors aren’t doing enough or going in the wrong direction, don’t take no for an answer. I’m lucky enough to tell my story.

#MyHeartMyStory Ablation and the Road to Recovery by Mike Sheldrick It has been some 8 months since my diagnosis of Wolff-Parkinson-White syndrome. A lot has happened in this time, which has put a temporary hold on a few activities. This post is about my Catheter Ablation treatment, how it went and what happens next. My already hectic family life leaves me little in the way of spare hours to formally dedicated to shooting and editing video material. I have used my free moments reading and learning techniques which I can put into practice in my next projects. Wolff-Parkinson-White syndrome is a common heart condition which affects 1 in 1000 patients. It is congenital and means that sufferers have an additional electrical pathway in the heart which can cause palpitations and erratic heartbeats. Following my diagnosis, a daily dose of 2.5 mg Bisoprolol was prescribed to slow my heart rate down. This was to prevent any further episodes of palpitations. I suffered from overwhelming tiredness while taking these. I most often felt the effects coming home from work or in the early afternoons. I felt like I had no energy to do anything other than what was absolutely necessary. The tablets did work though. I could feel the odd occasion where the heart would start to beat faster, but the betablockers meant that the heart actually stayed at a normal rhythm. I remember a month or so ago, there were 3 episodes in one week. Initially, I was told that treatment time would usually be around 2-3 months. I was hoping to be successfully “cured” before Christmas of 2017. It was agreed the best course of action was a Catheter Ablation procedure. I had a follow up appointment in December in Bristol Royal Infirmary where the diagnosis was confirmed following a further ECG screening. I was then informed I could expect to wait a further 4-5 months. This coincided with the birth of our second child, Arlo Finn. To allow some time for him to settle in at home, the date was put back to 13th June. I was advised to finish taking my beta-blockers 5 days before. This was to allow the heart return to its normal state before treatment.

On the morning of 13th June, I made my way to Bristol Royal Infirmary. I checked in to the cardiology ward. Fairly quickly after I arrived, I was called in to the second internal waiting room while they prepared a private room in the ward for recovery. I was shown to a small curtained room in the ward and presented with my hospital attire to wear for the day. This included a hospital gown, some gripped red socks and some rather fetching semi-transparent disposable pants. My normal day clothes were put in a bag to be locked away securely. After a short ECG, blood pressure test and a brief questionnaire, a cannula was fitted to my wrist. I was told how the procedure would be undertaken and told I was next in line. A few minutes later, the room was ready and I made my way to the operating theatre. The Catheter Ablation is a non-invasive procedure. The Ablation is conducted under local anaesthetic and sedation. A tube is inserted into the groin and fed up through the artery towards the heart. The surgeons will use a form of dye and x-ray to track any irregularities which cause the arrhythmia or palpitations. Once they have found the problem area, a high energy laser is used to burn/scar the abnormality. Scar tissue forms and therefore nullifies the issue. For Wolff-Parkinson-White syndrome (WPW) the success rate is 95% but does carry a low risk of complications such as: • Bleeding • infection • Damage to normal pathways leading to requirement of pacemaker • Stroke The mortality rate for this procedure is believed to be <1:2000. I was pre-warned that I would be walking into a cold room, and they were indeed correct, the room was very cold. Given the limited attire I had on at this time, I was particularly chilly. I was ushered towards the bed and hopped up onto it to get comfy. Looking around the room, I could see a very large monitor to my left with a host of readings. On each side of the bed was an arm rest with a cool, gel-like substance at the bottom. After a few last minute checks, a breathing tube was placed below my nose. It was time to get started. I was told there may be some beeps and alarms that may go off throughout the procedure and not to worry as this is normal. The doctors asked me to lie still and I did my best to do so. If I’m honest, I think I started to get a little nervous and fidgety at this point. I don’t remember too much after that. I believe the sedative had sent me to

myheart newsletter 2018

#MyHeartMyStory sleep quite quickly. I can recall a few moments during the procedure where I was aware of beeping and alarms. My heartbeat fluttered on occasion. I believe they had triggered palpitations as part of the process. I could feel it happening, shortly afterwards, I felt a real tightening on my heart, a squeeze and a blast of pain. I let out a groan and I heard the surgeon say: “It’s alright, perfectly normal, we’re working on it” I felt some more pain and I think I remember hearing:

for my new-born son was a little hard to take. The next day, I was able to walk a little so we managed to take the kids to the park to let off some steam. On the return home, I did feel the strain around the groin area, a reminder to take things steady in the early days. As the days have passed, I have been increasingly more mobile. I can walk normally most of the time and can climb stairs without too much bother, I get the occasional twinge in that area so I will be taking things a little more cautiously over the next few weeks. I was advised to not lift anything heavy for 2 weeks. This has nearly passed now so I am more or less back to business.

“We’re almost finished” The next thing I remember, I was coming round and they’d told me they’d finished. After I woke up a bit more, they wheeled me through to my ward room to recover. They’d been working on me for around 2 hours. I later learned that I had actually slept through most of the procedure, but woke up during the actual ablation. This explained the pain I could feel, my goodness me, it was some pain. They applied some more sedative after that. I fell asleep again until it was all finished. My parents joined me in the ward shortly afterwards. They told me that the doctors believed the treatment had been successful. They are confident that they have removed the accessory pathway and I should be cured. While I was in recovery, I was advised to keep my leg flat for 20 minutes, then was briefly assessed. A short while later, the ward nurse came by to check the wound around the incision site (the groin). It was still bleeding so they had to apply pressure on it for about 10 minutes. This hurt a fair bit.

The bruise on my leg grew over the first 5 days, but has now faded a bit in colour and is looking less angry. I have had the occasional beat skip in my heartbeat and a few moments where I have felt as if I was about to have another episode of palpitations. According to all my discharge advice and research, this is entirely normal. It is usual to expect the odd blip while the heart heals. As I am no longer required to take Bisoprolol, I think I can feel some of my natural energy returning. I do, however, have a new-born baby in the house. With the interrupted sleep that comes with that, I do still have a bit of tiredness, but I suspect this is not relating to the treatment or my heart’s recovery. As the treatment date for the procedure was far later than I was expecting, I regretfully had to withdraw from the #Tedicated 2 marathon challenge I set myself around this time last year. Although I have been told the treatment has been successful, I will have a follow up appointment where any further issues/complications will be assessed.

Apart from feeling a little tired, drifting in and out of sleep for an hour or so, I generally felt ok. Apparently, I was making less sense when I was speaking, but I had a bite to eat and felt much better.

Due to the nature of the procedure, total success can only really be determined once the scar tissue has formed and the heart has returned to its new normal state.

A few hours later, I was free to move around, pack my things and prepare to leave. Getting off the bed for the first time, I was aware of the extent of restricted movement due to the wound on my leg. I reluctantly shuffled around, struggling to put clothes on and had to ask my dad to tie my shoelaces. I was soon discharged and I slowly hobbled down the labyrinth of corridors, heading for home.

I should be able to start gentle exercise shortly. Once I feel confident my leg has healed enough, I plan to lace up and go for a very gentle jog for a mile or so and see how it feels. I have sought advice from other sufferers of the condition through the Cardiac Athletes. The key point is not to overdo it in the early stages of recovery. The journey back to full fitness may be a bit slow and steady.

The following 24 hours were somewhat of a blur. Fortunately, my family were on hand to help look after me. I was advised in no uncertain terms that I was not allowed to be left in charge or lift either of my children for the first 24 hours after discharge. This was due to the effects of the sedatives. Sitting around and not being able to help care

Thinking more long term, I will find out if there are any restrictions on activities I can pursue. I will then re-evaluate my goals before making any firm plans concerning getting back to more serious event running.

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Thank you for reading.

#MyHeartMyStory Idiopathic Polymorphic Ventricular Tachycardia by Hollie Bell Since having my little boy 3 years ago this month I haven’t really felt well and have been suffering palpitations, dizzy spells and feeling breathless. My GP just kept putting it down to postnatal depression and anxiety. I would only get the funny palpitations about 10 days before my period was due and then they would stop once it had begun. On the 31st May 2018, I went to bed as normal after not feeling all that well most of the week. My husband and I were trying for baby number two and because I was feeling unwell just assumed I might potentially have been pregnant. At approx 4am my husband woke to me making what he says were demonic noises, he elbowed me in the side and the noise stopped but I didn’t move; I’m generally a very light sleeper. He went to the loo and came back but still no movement from me at this point. He was alarmed and tried to wake me to discover I was unresponsive. He pulled me up into a sitting position and I remember coming round but feeling very unwell. I was cold and shivering and felt so sick and needed to be sick. I couldn’t walk to the toilet so he carried me. I knew something was really wrong and told him to call 111. He then went back into the bedroom and realised the bed was wet so I had obviously lost bodily function, which I had no idea about. An ambulance was called and I was taken to my local hospital. My mum looked after our little boy who was still sleeping. I walked into the hospital and was sat up talking, took myself off to do a urine sample and came back to the bed. Suddenly I felt dizzy and my husband said he saw a drop on the heart monitor, so he asked me if I could feel and I responded with that’s what my palpitations always feel like. Then I can’t remember much more. I had crashed and had gone into cardiac arrest and my husband couldn’t believe what was happening. A crash team came in and gave me two rounds of CPR followed by two shocks which I recovered from, but I woke up very confused and kept repeating myself. I was completely blind and there was a worry my brain function had been impacted. I then crashed a 2nd time and needed to be resuscitated and shocked again but this time I recovered quicker. The doctors and nurses had never seen the type of VT I was having and the electrophysiologist decided to get me into the cath lab ASAP to ablate. However, once detected

he was unsure of what he had seen and referred me to St George’s Hospital for a 2nd opinion. They took me off a drug used to stabilise me, and low and behold the funny episodes had stopped. All of my tests came back normal, so it was decided that I was fitted with a subcutaneous ICD as a precaution just in case it happened again. I couldn’t get my head around everything. I had been diagnosed with Idiopathic Polymorphic Ventricular Tachycardia which is very rare and they have not seen many cases. I went home after 2 and a half weeks in the hospital and tried to adjust to my new life. The ICD was painful and I was still very sore from all the chest compressions given but decided to throw myself into fundraising for CRY. I joined the myheart network whilst in the hospital and got loads of comments from others of reassurance about the ICD. CRY has been the best support network for me and such a comfort; I had to do something. I didn’t want this awful ordeal to happen to any more young people. I was so lucky I still had my life and fought death 3 times. Some people are not so lucky. We have currently just managed through tests to find the cause of my VT and I am currently waiting for an ablation which will be scheduled for the new year. Hopefully, I’ll then be able to continue with my plans for more children and progress all my other future plans. I just have a different outlook on life now...which is an amazing one! I’m determined to raise awareness to other women who might potentially be having palpitations after pregnancy because before my baby I was fine. I was a competitive Irish dancer for 20 years with NO symptoms. I will be talking to all my local MP’s to see if they will support the CRY pledge in parliament! I have currently raised £1,400 for CRY by doing six 5k challenges - I have so far done three and have three more to go at the beginning of next year! Life is short. We have to embrace each day and live in every moment! Regardless of age!

If you would like to submit your story to myheart please either submit it via our members’ blog area on the myheart website www.myheart.org.uk or email it to myheart@c-r-y.org.uk with your full name and any photos you wish to include attached.

myheart newsletter 2018

Getting Involved CRY Events in 2019

Heart of London Bridges Walk 23rd June

Heart of Durham Walk 5th October

Raising Awareness Week 16th – 24th November

Great Cake Bake 22nd November

For more information about any of the above events, please email events@c-r-y.org.uk.

Volunteering We are so grateful to our supporters who offer up their time. From being an official CRY ‘cheerer’ at a mass participation event, helping to marshal the route at the CRY Heart of London Bridges Walk, holding an awareness stall, sharing our key messages on social media, to volunteering at a UK festival – there are lots of opportunities to get involved by volunteering! Events volunteering - Providing your help on-site at any of our events is a great way to get into the action of our fastpaced busy events! Our events include Simplyhealth Great North Run, Virgin Money London Marathon, Heart of London Bridges Walk and more! Volunteering in your local community - Volunteering in your local community is extremely beneficial in raising awareness of the important work that CRY does. Raising Awareness - Help promote CRY by distributing CRY general information leaflets/collection pots at your workplace, local school, leisure centre or in theatres, pubs, shops, doctors and pharmacies. Social media - Follow myheart on Twitter and Facebook. By sharing any of our messages you are helping to raise awareness. Some members also help to raise awareness by sharing their own stories, including #myheartmystory. In-office volunteering - Our CRY in-office volunteers take on a range of practical and administrative tasks. We have limited space but are always grateful for an extra pair of hands in the office! If you would be interested in volunteering some of your time for CRY, or would like to receive a volunteering information pack, please email volunteering@c-r-y.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 18–35 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

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Websites: www.myheart.org.uk

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