myheart Newsletter 2016
News and Events | Raising Awareness | Members’ Stories
In this
Newsletter
Tel: 01737 363222
What our members have been up to
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Other news
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myheart Meetings
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CRY events attended by members
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Members’ stories
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Email: myheart@c-r-y.org.uk
@myheart_UK
Websites: www.myheart.org.uk
myheartnetwork
What our members have been up to
Kanika Bhateja myheart Coordinator Email: myheart@c-r-y.org.uk I am delighted to announce that the revamp of the website and new videos by our cardiologist, Dr Michael Papadakis, and by myheart members this year have had a very positive impact on raising awareness about CRY and myheart. This year more than 85 young individuals joined our support network. We are grateful to members who raised awareness or funds for CRY through collection boxes, fundraising events or through donations. We also had a successful year in terms of the website with many of our members using the members-only area to pen their thoughts and experiences of being diagnosed or living with a cardiac condition. BBC Lifeline Appeal was another highlight for 2016 which did a lot to raise awareness of CRY and myheart’s work. It featured our Patron Pixie Lott and stories of two of our members. myheart’s presence on social media and news websites also increased considerably. As the coordinator of CRY’s support group, it is my responsibility to put this newsletter together and it is my endeavour to get you all the news and event stories relating to members accurately. Please do not hesitate to contact me by emailing myheart@c-r-y.org.uk or by calling 01737 363222 if you find anything amiss or if you have any views to improve our support network. Thank you for your help!
Spinnaker Tower abseil by Cat Burns Opting to do something small to help three personally significant charities that help thousands of people was the best thing I have done this year… first stop; abseil down the Spinnaker Tower, Portsmouth. Firstly, I would like to say a huge thank you to everyone who has supported me, both through donations and via messages etc. It really does mean a lot. I am chuffed to bits to have gone past my original target in a couple of weeks, and now hope to increase it even more. Why I chose CRY and two other charities to fundraise for is explained on my fundraising page. For the seasoned adrenaline-seeker, a 300ft (or thereabout) abseil down a building probably seems fairly mundane… but my life-long instinct has been to avoid heights with edges (usually anything that you can’t jump
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off without injury) at all costs. My ideas of being an adrenaline-seeker and risk-taker usually remain a daydream… survival instinct and all that tends to kick in in reality – so it was about time to put my money where my mouth is (I’m self-funding any challenge cost) and do something well outside of my comfort zone! I signed up in an impulsive moment; probably the only way I ever would. At the back of my mind I was aware that having a heart condition and a fairly well wired/glued/stitched body with a few other issues might be something of a kink in the plan, I figured I would deal with that later. Luckily I was allowed to do it – disclaimer – not an approach I should advocate. On the day I was joined by a very good friend for moral support and celebrations after. I spent about an hour watching others do it before finding myself in the lift to the appropriate floor. I can’t actually repeat the exact wording that sprung from my mouth, but let’s just say I went from being nervous to a complete wreck in a matter of seconds. Being up there was way worse than it had looked from below. Without the reassuring wit and professionalism of the abseil team I would have frozen, chickened or timed-out up there; or turned around and recoiled into the lift back to ground level. That, and the amazing support, messages and donations from friends and family really did spur me on. I soon found myself harnessed up and waiting by what can only be described as a gang plank with the three others doing it at that time. I opted to go first so I didn’t know what was coming and wouldn’t have an excruciating wait. Once I started the abseil after hanging there for what felt like ages, it was really quite “easy” …. In so much that I basically started to slide down without really any control (at least that is what it felt like to me). Happily, the guys operating it and keeping us safe could control it from the plank or the ground if need be. My right arm quickly gave out on me and before I knew it I yelled above that I was going too fast (apparently you can’t) thanks to losing the strength in my arms and hands much more quickly than I envisaged. We all wore thick gloves, and accompanying me on the descent was a strong smell of burning and heat in my right hand that was attempting to control my speed. My left hand was pretty well glued to the rope from the moment I stepped off the gang plank. I was relieved when
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What our members have been up to my feet hit the reassuring solidity of the ground beneath, and let go of the ropes! I am not sure you would persuade me to do it again now, at the time I agreed I probably would!
Kesha Watson’s Charity Week Even before my diagnosis I had always been a big supporter of CRY and their work, so when I was diagnosed with Wolff-ParkinsonWhite in April 2016, I just knew I had to give back to them for all of their amazing support. I am a fully qualified personal trainer and nutritionist and run my own fitness company on the Isle of Man so it was a no-brainer that my fundraising event would be something fitness related. As I am still undergoing treatment with my condition I wasn’t able to take part in my events, but I organised and ran each and every session. I decided to run a charity week, whereby my 1-to-1 personal training sessions would be free of charge, however it would be up to my clients to decide whether or not to donate to CRY, so I was massively overwhelmed when each of my clients donated the full session fee (£25). I also ran three charity classes at my local gym, Quay Fitness. I ran a charity ‘Ab Attack Class’ (and was made up to see so many people turn up at 9am on a Saturday for it!), a ‘Bums, Legs & Tums’ class and I finished my charity week with a good old ‘Circuits’ class, however with a twist – with Christmas so close, I made my circuits Christmasthemed, based all of the stations on festive things (my ‘Tinsel Twister’ station was Russian twists and my ‘Load the Sled’ station was shuttle runs… the list goes on!) and asked everyone to bring their Santa hats along, however they soon came off once everyone started working hard!
Fitness has always been and will always be my passion, so when I was first diagnosed, it was hard to come to terms with the fact that I may no longer be able to keep up my fitness/personal training as I had done beforehand. However, thanks to the support of my amazing fiancé, family and friends and under the close watch of my
www.myheart.org.uk
cardiologist, I soon bounced back to my regular ways, but focussing more on pushing my clients hard than pushing myself! I was so made up to have so many people asking about CRY and their work, it was great to be able to raise awareness and support for CRY, even to people who didn’t take part in any of my charity week activities. As a personal trainer, educating people on how to live a healthy life is SO important to me and if I can also teach them how to have a healthy heart, then that is even better. I still face my everyday battle with WPW, but that doesn’t mean I can’t help other people along the way by raising awareness on the importance on having your heart checked out. The work CRY do is incredible and of course, so close to home, I look forward to supporting them again in the future.
myheart members interviewed by the Yorkshire Evening Post Following the news of England cricketer James Taylor’s diagnosis of ARVC, some of our members were approached by their local media to share their own experiences of living with a cardiac condition. CRY and myheart are grateful to myheart members Lucy Challis and Tim Butt for sharing their stories with the Yorkshire Evening Post. Lucy Challis was diagnosed with ARVC after the tragic death of her brother, Stuart. Tim Butt, another myheart member and a cycling enthusiast, also featured in the story. Tim suffered a cardiac arrest when he was 23 and now has an ICD after being diagnosed with long QT.
The full article can be read at www.yorkshirepost.co.uk/ news/analysis/why-there-is-life-after-cricket-for-jamestaylor-1-7848495. Thank you also to another member, Nicola Kenton, for writing a blog about heart conditions. Her blog can be read in the members-only area of the myheart website.
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Other news Dr Michael Papadakis Records Videos for the Website
Paula Beck Simmonds featured on Healthista During raising awareness week, myheart member, Paula, was interviewed by Women’s Health website, Healthista about her experience of being diagnosed with Brugada syndrome following the tragic sudden cardiac death of her brother, Craig, and her return to exercise following the diagnosis. The full article can be read via www.c-r-y.org.uk/ young-fit-people-dying-cardiac-arrest/
Spire Radio interview with myheart member Annamarie Dr Michael Papadakis, CRY and myheart Cardiologist, was filmed at St George’s answering some more frequently asked questions for the website including lifestyle advice for young people with different cardiac conditions. The videos are now available on the myheart website www.myheart.org.uk.
Poet and myheart member, Annamarie Vickers-Skidmore spoke to Spire Radio, Derbyshire about her pacemaker at just four and a half and her subsequent fundraising for CRY through her poetry book, Heartfelt Thoughts. The book is available via Lulu.com for £4.50 with all profits going to CRY.
Dr Papadakis’s videos are our newest initiative to answer questions of members who are unable to attend meetings. We will be filming some new questions sent in by members with Dr Papadakis a few times per year from now onwards. If you feel you have any question that you haven’t had a chance to ask your cardiologist, please send it to myheart@c-r-y.org.uk.
Blogs Thank you to all the members who shared their experiences of being diagnosed with a cardiac condition. Their blogs can be read in this newsletter (as these members have kindly given permission to share their stories for the benefit of others in similar circumstances) and in the members-only area of the website. Any UK resident between the ages of 16 and 35 with a cardiac condition can access the members-only area by registering for the website here: www.myheart.org.uk/ register. Once your website account is activated, as well as reading other people’s experiences you could write a blog, comment on another member’s post, or share a video about your diagnosis or about any tests if you would like to.
Listen here: soundcloud.com/spire-radio/annamarievickers-skidmore-interview
Stand at Up The Pace organised by Bristol Children’s Hospital CRY was very kindly invited to hold a stand at Up The Pace, an annual event in its sixth year, organised by Bristol Children’s Hospital at At-Bristol Science Centre in Bristol on 5th March. Kanika Bhateja, CRY myheart Coordinator, attended the event. There were about 100 young pacemaker and ICD patients who go to Bristol Children’s Hospital and their families who attended the event. The event – with a combination of workshops, discussions, speeches, trainings, and games – lets the patients and their families meet each other and provides useful information, an enjoyable experience, and 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
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myheart newsletter 2016
Other news & myheart meetings speak to representatives of these charities about the services and support they offer for ICD and pacemaker patients and their families.
every two years and in 2016 was held at the Great Ormond Street site like the previous year. Charitable organisations were invited to hold a stand at the conference so that the course attendees could have an opportunity to talk to them about the services they offer for children with cardiac conditions. Kanika Bhateja, CRY myheart Coordinator, manned CRY’s stall on 21st July. Some of the nurses who we spoke with were interested in myheart because they felt there were hardly any support groups for young people with cardiac conditions who are making a transition from children’s hospitals. CRY’s medical and myheart booklets were all taken very quickly by the nurses. Some of the nurses also showed interest in the upcoming annual CRY conference.
Thank you to Bristol Children’s Hospital for giving us the opportunity to raise awareness of myheart at this event!
Stand at the Congenital Heart Disease Conference 2016 This established annual course runs for nurses and allied health practitioners working with infants, children and young people who have congenital heart disease and related cardiac conditions.
CRY’s myheart member, James Doherty spoke about living with a life-threatening cardiac condition called LQT. The presentation was the highlight of the day as James went about the presentation with funny anecdotes and was absolutely optimistic about his condition. James gave an inspiring and personal insight into what it is like for young people with cardiac conditions and their parents. Thank you to the CHD conference for inviting us to hold a stand to raise awareness of the myheart Network.
The course is run collaboratively by the practice educators and specialist staff of the London congenital heart centres and attracts attendees from cardiac centres in the UK, Ireland, Europe and further afield. The course rotates around the three London centres
National myheart meetings Anybody between the ages of 14 and 35 can attend a myheart meeting if they have an ICD, are being considered for an ICD; have had a cardiac arrest, or have been diagnosed with an inherited or a potentially inherited cardiac disease.
17th April 2016 The first national myheart meeting of 2016 was held at the Holiday Inn in Sutton, with 11 people registering to attend. Counsellor Alan Jones took the group to address any social problems created by their condition, and myheart cardiologist Dr Michael Papadakis offered the opportunity for those attending to informally discuss any of their medical queries.
www.myheart.org.uk
20th November 2016 17 people registered to attend the second national myheart meeting. The day began with an informal chat with Alison Cox MBE, CRY’s Founder, giving members the chance 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. Date/s and information about the meetings in 2017 will be added to the myheart website here: www.myheart.org.uk/meetings-2.
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myheart members at CRY Events CRY Heart of London Bridges Walk 2016
Miccoli, Zenia Selby and Joseph Tanner travelled to Westminster for the prestigious annual event at which CRY Patrons, Representatives, Research Fellows and MPs gather to raise awareness of inherited heart conditions affecting young people.
myheart members Mhairi Morrison, Laura Gibbs & Amanda Okunola
Sunday, 26th June witnessed a huge number of walkers gather at London’s scenic green space, Potters Fields Park, 1,266 walkers registered to take part in CRY’s 10th annual 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 again with others similarly affected and to raise awareness of cardiac conditions in young individuals. 11 myheart members registered to take part in the Bridges Walk last year. Some of them got a chance to meet other members and share each other’s experiences. While it was the first time for some members, some had taken part in the Bridges Walk annually for a few years. myheart member Sian Donnelly took the long route despite taking part on crutches. To read the full write up of the event please visit: www.c-r-y.org.uk/cryheart-of-london-bridges-walk-2016.
myheart members Emma Jackson, Tim Butt, Paula Beck Simmonds, Dr Michael Papadakis, Joseph Tanner, Cat Burns, Sian Donnely, Lucy Challis & Chris Currie
Zenia Selby described her experience at the Reception in the following words: “The beating heart of British democracy was certainly an appropriate place for the Cardiac Risk in the Young reception! And what a beautiful location. The imposing statue of Oliver Cromwell greeted me at security, paintings of significant moments in British history lined the corridors on the way to the reception. The room itself overlooked the Thames – it was so close you could have stepped out onto its gently lapping waters! “The whole event was at the same time enjoyable and very moving. The two patrons who gave speeches highlighted the pain of bereaved families and emphasised the importance of screening to help save lives in future just like those we have lost. Vincent Regan gave a powerful reading of a lament written by Shakespeare for his son through the voice of one of his characters. I must say, it brought tears to my eyes.
The CRY Heart of London Bridges Walk will again be the main event of the CRY calendar, if you would like to join ‘Team myheart’ or just walk to help raise awareness, on the 9th of July please visit: www.c-r-y.org.uk/bridges-walk. Register online via: www.c-r-y.org.uk/events/events/cryheart-of-london-bridges-walk-2017/
CRY Parliamentary Reception 2016 The CRY Parliamentary Reception 2016 at the House of Commons on the 23rd November was attended by 10 myheart members – including 6 myheart Representatives. Paula Beck Simmonds, Cat Burns, Tim Butt, Lucy Challis, Chris Currie, Sian Donnelly, Emma Jackson, Alessandro
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“Professor Sharma revealed the exciting news about CRY’s significant contribution to the new international sporting guidelines on cardiac health. “I was pleased and humbled to meet other myheart
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myheart members at CRY Events members whose heart conditions were still undiagnosed, or who would live with their conditions for the rest of their lives. I realised just how lucky I was to have had the option of a simple ablation. It motivated me to continue to support CRY so that in the future, others may have just as straightforward cures for their heart conditions. After all, once upon a time an ablation was a revolutionary operation, and with increased technology and research in cardiology, other, as yet impossible procedures will be able to save even more young lives.”
that we can match and hopefully beat last year’s total once all the money has been received. We are also grateful for all the awareness raised, including the first radio interview we have had specifically about the Cake Bake! For anybody interested in taking part in the 2017 Great Cake Bake on Friday 24th November 2017, please email ben@c-r-y.org.uk to register to receive a Cake Bake pack when they are ready! Zenia Selby held a CRY great cake bake at her work:
The event was hosted by Sir Roger Gale MP (Conservative), Dr John Pugh MP (Liberal Democrats) and Kevan Jones MP (Labour). Speeches were given by Mims Davies MP, Hugh Mulcahey – CRY Trustee and Chairman since 2007, Jack Clifford – CRY Patron and rugby union player for England and Harlequins RFC, Vincent Regan – CRY Patron and Hollywood, TV, and theatre actor, screenwriter and director, Professor Sanjay Sharma – CRY Consultant Cardiologist and Dr Steven Cox – CRY Chief Executive To listen to the speeches please go to: www.c-r-y.org.uk/ cry-parliamentary-reception-2016 For more information and an updated list of those MPs who have signed the pledge go to www.c-r-y.org.uk/mypledge
CRY Great Cake Bake 2016 Thank you so much for your support of the CRY Great Cake Bake as part of Raising Awareness Week 2016 and for helping to make the event such a success. We are delighted to have had 115 supporters registering for packs and we are sure the actual number who took part will be higher as supporters continue to send their money in.
We are delighted with how the Cake Bake has continued to grow since it was started. The event total has already reached over £20,000 which is fantastic and we are sure
www.myheart.org.uk
“I got to work early on the CRY Great Cake Bake. I carefully opened two big cake tins, one full of coconut macaroons, each topped with a glacé cherry and resting on a square of CRY rice paper, the other full of Deliciously Ella almondand-sea-salt brownies. This was only my second week at this new job, so I was a bit apprehensive about how enthusiastic people would be, and whether my semi-vegan brownies would be a source of contention! Once I’d arranged the collection box and some CRY information leaflets around the cake tins, I went back to my desk and sent round a group email, explaining what the cake in the kitchen was for and my experience of being diagnosed with Wolff-Parkinson-White syndrome. Five minutes later, I realised I needn’t have worried about my brownies! I received so many wonderful supportive emails, thanking me for the cake and for raising awareness about the charity. By the time I went back to make a cup of tea midmorning, all the cakes had gone! I’m very grateful to my new colleagues for helping to raise £59.02 for Cardiac Risk in the Young. And now I know I’ll have to bake double quantities next year to keep the cake supply going till the afternoon!”
If you would like to raise awareness of CRY, please email myheart@c-r-y.org.uk for literature and posters.
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BBC Lifeline Appeal
CRY Patron Pixie Lott
CRY and myheart’s biggest awareness event this year was the BBC Lifeline appeal, broadcast on BBC One and Two on 21st February, presented by CRY Patron Pixie Lott. She not only made her West End debut that month but her presenting debut too, and it helped make a huge impact. The film attracted an audience of over a million watching terrestrial television and social media. You can still view the programme at www.c-r-y.org.uk/bbc-lifeline-appeal. 25-year old Pixie has been involved with CRY for six years and is a loyal and proactive supporter of the charity. CRY’s cause is close to her heart as her childhood dance teacher Matt Beadle died following a cardiac arrest.
sister, myheart member Sian Donnelly, talked about how CRY came to their aid in the wake of his death, and how the charity helped provide an answer to why they lost Adam so unexpectedly. CRY screened the rest of the family for heart conditions, and discovered that Adam’s sister Sian also had an inherited heart condition. CRY’s ambition is for every young person to be screened for life-threatening heart conditions, so that as many as possible of the 600 young people who die each year of sudden cardiac problems can be saved.
The film also features the powerful and poignant story of Adam Donnelly, a close friend of Pixie’s sister, who died suddenly when he was just 17. Adam’s mother, Julie, and
James Bailey myheart Member
CRY Representatives Sian and Julie Donnelly
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James Bailey, another myheart member and a football enthusiast, also featured on the programme. James was screened at a CRY screening on an otherwise regular day at school. He was diagnosed with Wolff-Parkinson-White syndrome, a potentially lethal heart condition, and told
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BBC Lifeline Appeal he’d have to stop playing sport immediately. James was eventually treated. James and Sian also wrote their stories to be included in the myheart booklet which can be found on the myheart website here: www.myheart.org.uk/booklet.
“It happened to someone I know… out of the blue. He was my big sister’s friend, and his name was Adam Donnelly. When Adam was 17, the family went on holiday to Cyprus with friends. One day everyone went to the beach, while Adam decided to stay behind to swim in the hotel pool. Adam was found floating in the pool. He was rushed to hospital, but his heart had stopped and doctors couldn’t revive him. “When someone dies young, it’s always completely devastating to everyone around them and I remember the impact that Adam’s death had on my sister. And I still can’t quite believe that 12 apparently fit and healthy young people (aged 35 and under) die of undiagnosed heart conditions every week in the UK. Pixie added: “Last year 23,000 young people aged 14–35 were screened by CRY. It’s a completely free service that no one else offers. Over the years, CRY has raised millions for medical research, developing effective methods for screening and identifying young people at risk.
CRY CEO Dr Steven Cox, CRY Patron Pixie Lott, CRY Representative Sian Donnelly & CRY Founder Alison Cox MBE
Speaking exclusively to the BBC, Pixie Lott said; “The really shocking thing is just how many apparently healthy young people die from sudden cardiac arrest each year.
“The reason why there are over 600 sudden deaths each year is because young people who are fit and well, are not routinely tested for heart conditions. So CRY believe that a screening programme for everyone is the best way to save lives.”
Pixie Lott with CRY and BBC
www.myheart.org.uk
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Members’ Stories 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.
Living with ARVC and an ICD by Katie Warrington Six days after my 26th birthday I went for a run one evening (15th June 2016) with a friend and a group of runners and I suffered a cardiac arrest after finishing the run. I have no memory of it, it’s what I’ve been told by others. I had CPR performed on me at the scene and was shocked twice when I got to hospital. I was then put into an induced coma for three days.
Thomas’ in London. I broke down – all I wanted to do was go home. A couple of days passed and I was eventually transferred to St Thomas’ on the Saturday. When I got there I was told I would be having tests done for different conditions. The main one they wanted to do at first was the ajamline test for Brugada syndrome, but then after they did an ECG one night they said they only wanted to do an electrophysiology (EP) study with a possible ablation. I had an ICD check while I was there and everything seemed to have calmed down since I started my medication. Two weeks later I finally had the EP study, was given a definite diagnosis of ARVC and was allowed home the next day. Coming home was a very scary process – I now suffer with really bad anxiety and am scared to leave my house. I have just begun to go back to my boyfriend’s house but I won’t walk anywhere. I feel like I’m constantly living my life in fear. Living with an ICD is going to take a lot of getting used to for me but I’m hoping with the right help I will get there.
Life with Wolff Parkinson White Syndrome by Kesha Watson I wanted to write an article to talk about my experience with a heart condition and how important it is to get checked out, even if you feel okay.
Two weeks later I had my ICD fitted (29th June 2016) and I was allowed home the day after. I don’t have much memory of being in hospital for the two weeks in June; I just piece it together by other people, Facebook statuses and Instagram posts. It didn’t bother me that much but it was a struggle as I became very dependant on other people when I first came out, I couldn’t dress myself or anything as my left arm was very sore. As time went on I got used to it. I went to see my consultant in July at St Thomas’ – he gave a possible diagnosis of ARVC. Three months later (1st September 2016) I had my first shock. I was on my own walking from the town to my boyfriend’s house. It was horrible, I cried, but after a while I felt normal again. I got checked at the hospital – everything was fine, it did what it was supposed to do. Two weeks later (14th September) I was walking to the bus stop and I had another two shocks, one after the other. Again I broke down, I was shaking and I phoned an ambulance. Luckily people were around to help me and stay with me until my mum and the ambulance came. I was taken to hospital and straight to A&E. They told me I wasn’t allowed home that night as I had to see the consultant in the morning so I prepared myself for what I thought would only be a night back in hospital. I was wrong, the consultant came round the next morning told me he is going to start me on medication (bisoprolol – beta blocker) and told me I wasn’t allowed home and had to be transferred to St
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As a 21-year-old personal trainer and owner of a health and wellbeing company, I never could have imagined that I would be diagnosed with a heart condition. Looking back, I wish I hadn’t spent so much time worrying about how many miles I could run or what salad was for dinner tonight in an aim to be healthy, because anybody can be diagnosed with such a condition. After my uncle was diagnosed with a genetic disorder known as cardiomyopathy and fitted with a defibrillator, it was a big worry when I started experiencing heart palpitations at such a young age. I fought with my mind and my body for a few days before deciding that I really needed to be checked over by someone. As a typical mother, of course my mum was panicking when I mentioned my symptoms to her and looking back, her wise words ‘it’s better to be checked out and have nothing wrong with you, than not to get checked out and there be
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Members’ Stories something seriously wrong,’ couldn’t be more true. I booked an appointment with my local GP and funnily enough, whilst in the appointment, I was experiencing heart palpitations so my GP was able to get a true feel of how I felt when I was experiencing an episode. He sent me straight across to my district hospital for blood tests and an ECG to make sure nothing was untoward, but it was. Whilst wired up to the ECG, my heart was jumping from 50bpm to 190bpm and this lasted for about 10 minutes, although I have to say I was never too worried because I was in the right place. My doctor called for an ambulance and I was rushed up to the main hospital where I spent the day undergoing further tests. I was experiencing tachycardia all day whilst in hospital, however they sent me home and put it down to my electrolyte levels!
Zenia Selby’s blogs Zenia has written a series of blogs about her training for an event and of her return of WPW.
1. Hearts in Haringey
For the following two weeks, I tweaked my diet in case it was my electrolytes that were causing the problems and I honestly did think that it had just been a short-term illness, I couldn’t have been more wrong! It all started up again (a week ago from writing this!) and so I decided that I had to go back to my GP. The episodes were much worse this time around and I was getting really bad chest pains and episodes of breathlessness, at one point my partner could even see my heart beating through my chest, scary!
I love long distance running. Like, really long distances. So when I was diagnosed with Wolff-Parkinson-White syndrome, it was very difficult to have to cut down to just the odd 5K, constantly monitoring my heart rate as I ran. But in November, I had an operation that fixed my heart condition, and to celebrate I am going to run around every park in my London borough, Haringey! All the money I raise from this crazy, roughly 30-mile (50K) run will go to CRY, so that they can help others with heart conditions the way they helped me.
I went to my GP and explained that it had all started up again and he gave me a small machine to use when I was experiencing the palpitations so that I could record my heart rhythms at the time, but that night when I went home things went from bad to worse when my partner found me collapsed on our lounge floor (I don’t remember and honestly don’t know how long I was out for). When I woke up I was hot and clammy and struggling to breath so I went straight back to my GP who sent me straight back to hospital and referred me to a cardiologist.
I hit the 27K mark in my training on Sunday, running over the gorgeous Cotswolds. When you push your body to that extent, time begins to lose meaning, and everyday stresses disappear, because your body directs all its energy towards just running. And it means that you begin to notice little things around you more: the view from the hilltop, the bird singing in the hedgerow, the golden stones in a disused quarry, the church spire in the distance. All those little, beautiful things we live for. Because at the end of the day, that’s why I’m running: I am grateful to be alive.
After further tests and ECGs, the doctors diagnosed me with WPW syndrome and started me on a course of verapamil to control my heart rate. I am yet to have a further appointment with the cardiologist, but I have been told that in order to continue my career as a personal trainer, catheter ablation will most likely be the route I will have to take.
2. Running in the rain
I just want everyone to know that doctors are there for a reason, if you don’t feel right, then get yourself checked out and don’t stop looking for answers just because someone says there is nothing wrong with you as this is what first happened to me, but thankfully due to further episodes of palpitations and many visits to the GP, I am finally getting somewhere. Your heart should be taken seriously and always listen to your body.
www.myheart.org.uk
The Easter weekend brought chocolate for many, hot cross buns for some, but for me it brought a 30K run through the wrath of Storm Katie! It was a hard, hilly run, but made infinitely better by the kindness of a family living in a tiny sandstone Cotswolds village who refilled by water bottle for me when I reached the halfway point. It was on this run that I found out downhills are harder than uphills – I found myself happily jogging uphill but waddling back down again! Just as well my final running route will be mostly flat… 30K is another milestone in the build-up to the final 30mile run, around every park in Haringey, which I’m putting myself through to raise money for CRY. It’s tough, it’s painful, but with the help of support and donations, I hope this will help another life be protected from an early heartcondition-related death.
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Members’ Stories 3. WPW – the risk of return I had been doing pretty well in my training, but on a couple of runs my heart went a little faster than usual. To be on the safe side, I referred myself for an ECG. I took the result to my GP, who took a look, said it seemed fine, but then paused. He looked something up, drew himself a little diagram, and then looked at the results again. As someone with only junior level cardiology training, he couldn’t be quite sure what he was seeing, so he has referred me back to my cardiologist. It’s only in 5% of cases that WPW can return. But it can, and does, return. So while I wait to find out whether or not I am one of the 5%, I have stopped running and instead would like to take the opportunity to raise awareness of this possibility.
Some heart conditions have to be lived with and carefully managed. Some can be resolved. Some are more difficult to resolve. And any undetected heart conditions can be fatal. The heart is such a vital, hardworking muscle that it is equally vital that we look after it, listen to it, and make sure it’s not affected by a heart condition, starting with the young. CRY works hard to make sure that heart conditions in young people are identified and managed early – and that’s vital in the most literal sense of the word: it saves lives.
4. A few more tests For those of you following my story, you will be aware that I went to the doctor worried that my WPW had returned. Since then, I had another consultation with a cardiologist who confirmed that it wasn’t WPW, but explained that what I was feeling was most likely an ectopic beat. This is perfectly normal, but can be what triggers the palpitations associated with WPW. It’s quite odd for me to feel this ectopic beat and realise that had I not been ablated, I would be having an episode at that moment… So I am relieved that my condition hasn’t returned, but to be completely sure it’s not a symptom of something else I’m having a few more tests done at the end of the month. Fingers crossed that’ll put me in the all clear for good!
5. Making sure As it approaches a year since I had my ablation, I’m coming to the end of the extra tests my cardiologists wanted
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me to have to make sure my heart condition had been completely fixed. I had two exercise tests and an echo, which all seemed to show normal results, so I’m very much hoping I’ll get the all clear at my consultation. In case you have these tests too, I’ll share with you what’s involved. For one of them, I had to walk on a treadmill, on which the speed and incline steadily increased. My heart rate was measured constantly and my blood pressure taken every few minutes. This threw up no heart rate anomalies, but we did discover that my blood pressure lowers much quicker than my heart rate after exercise, so the nurse recommended that I make sure I have an isotonic drink after a long run to help recovery.
For the second test, I had a 24-hour monitor. It was fun having this little measuring device hidden under my jumper for a whole day! Not so fun trying to hide it under tightfitting running gear while I took it out for a test run… I’m still waiting for the official results of these tests, and I’m waiting till then to get back into my passion, running. My promise to myself is that if I get the all clear, I’ll resume training for my ultramarathon!
6. All Better Now Just before Christmas I got the results of my extra tests back. The good news is that the ablation was completely successful – I definitely don’t have WPW anymore! However, the tests did throw up a few little anomalies. It seems as though my heart has a mind of its own. Sometimes it’ll start racing for no reason – once when I was fast asleep! Sometimes it’ll skip a beat, like it’s just forgotten it had to do something. It seems as though these strange little moments of arrhythmia are to do with the ‘sinus’, the
myheart newsletter 2016
Members’ Stories heart’s own electrical system, and therefore completely benign. So as long as I can cope with this rather silly behaviour – and as long as it’s not life-threatening, I can – then all is well for Zenia’s ticker.
always tired, felt out of breath on occasion and so on. I was pleased to have an answer to a question I didn’t even know needed asking at the time; why do I feel so unwell all the time? Here was my answer.
Having a heart condition by Guy Heywood
Despite the diagnosis and following shock I felt like a small weight had been lifted. I was still very unwell and going through the motions of preparing for surgery but at least I could take comfort in the fact I knew what was going on and why I felt the way I did. This brought a great sense of calm over me. I was glad to finally know and happy I paid attention to the signs my body was giving me. It’s best to check things out, you never know and either way it’ll put your mind at rest.
Does it mean I am unable to live life how I want? In a word, no. Does it mean I have to make sacrifices and resent those sacrifices, again no. Do I feel debilitated and as though I suffer from ‘a condition’, NO! So what’s going on then and do I have a ‘condition’ or a ‘disease’? In brief, I was born with a defective heart valve. My aortic valve was bicuspid, which meant it was missing a part, and was gradually self destructing, until, when I got to 29, it all but failed and within a few months I had open heart surgery to replace the defective valve. At the time I was engulfed in a whirlwind of appointments and seemed to spend my time listening to specialists in the cardiology world telling me that I needed more tests before a letter would arrive in the post with a date booked in. I got used to looking at the doctors and nurses and seeing a vacant stare, as if they were holding something back from me. They weren’t really looking at me, or rather they were looking through me and I could tell they were hiding something. When the day came and I met with the surgeon, who was frank and quite casual about the matter, it actually came as a relief to finally know what was going on. This relief was quickly followed by a sense of shock that I had never felt before. I was lucky to be alive and wouldn’t last much longer unless they operated. In the surgeon’s own words ‘you know how you hear of young people just dropping down dead? Well this is why,’ and I was left to go and prepare for the operation.
So here I am now with a new tissue valve replacement, by new I mean new to me, it’s from another animal and I often joke that I am now part cow. After I had recovered, I realised that I felt the best I had ever felt in my life, as for the first time I had a fully functioning heart! Any news to do with your health may appear to be all encompassing and may even seem to signify the end of what you know. However, it’s down to you to interpret and deal with it the best way you can. We all possess a wonderful ability to change, adapt, learn and improve from any situation and we can always do this. In every sense what doesn’t kill you makes you stronger. So if you have been given news of a heart condition and feel that it’s a weight or a burden and that life as you know it won’t be the same again, and it’s not fair, I would encourage you to remember that it’s up to you how you view the situation. Things could turn out, and often do, better than before. None of us know what is coming and how one event will lead onto the next, but they do. What we can do is take ourselves forward with life and embrace who we are. I should have died three years ago and been one of those statistics; a young person dropping down dead suddenly. Instead I went skydiving last week. It’s up to you.
This news would be a shock at any age and having just turned 30 I kind of thought life was well and truly ahead of me. It wasn’t that I thought I was invincible; it was just something that had never occurred to me. I was fit, healthy and I had competed in a boxing match a few months ago... what was going on? As mentioned, I felt relief more than anything else as all of a sudden everything made sense. This was why I was
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Members’ Stories WPW recovery and running the London Marathon by Beth Mahon After becoming active and running my first half marathon in October 2014, I became unwell – suffering from dizziness, tiredness and palpitations. A few weeks later, after a number of tests, the doctors told me they thought I had a condition called Wolff-Parkinson-White syndrome. I’d never heard of it and at the time it didn’t strike me that I had a heart condition, I was more upset that I was told I wasn’t able to run or exercise whilst they carried out more tests and confirmed the diagnosis. I later found out it was a condition which I had had from birth but due to a previously sedentary lifestyle I hadn’t been aware of it. Once I began to understand the condition more I remembered episodes I’d had in the past of what felt like panic attacks where my heart had raced whilst either scuba diving or running. At the time I’d put it down to feeling anxious but it was all beginning to make a bit more sense. After a few months of tests I was told I could begin light exercise again, this was music to my ears and off I went and carried on my training. In the summer of 2015 I had an appointment with my consultant who recommended I go for an ablation procedure. This would confirm definitively if I had Wolff-Parkinson-White syndrome and if I did they would be able to fix me there and then. At first I hesitated, by now I wasn’t getting regular symptoms and I generally felt okay but in the back of my mind I knew the right thing to do was attempt to get fixed whilst I was young, and generally healthy. So I booked in and had the ablation in January 2016.
procedure I eased myself very slowly back into gentle exercise. CRY was a real comfort for me in those scary few days and weeks after the operation and it’s only since reading more about Wolff-Parkinson-White I have found out how fortunate I am that I have been ‘cured’ and it was a surprise to me to find out how many other people suffer from the same, or similar, heart conditions and how simple screening early on in life could detect these conditions and save lives. To thank CRY for the support I received my husband and I are both running the Virgin London Marathon 2017 for CRY. My place was deferred from April 2016 as I was too unwell to run post the ablation but now I am feeling strong and looking forward to raising lots of money for a charity who helped me in a time of need. Thanks CRY!
myheart member Videos We understand that as well as requiring medical information, young people who are undergoing cardiac investigations may also like to hear from other young people who have undergone similar tests or received the same diagnosis. A number of myheart members have sent in their own videos in which they talk about their condition, and how they felt when they underwent certain procedures. They have shared their experiences to help other young people who are living with a diagnosis or having cardiac tests. Our most recent video has been submitted by myheart member, Tim Butt. Tim talks about his recent ablation prcedure and follow-up appointment. www.myheart.org. uk/myheart-member-tim-butt-talks-about-his-ablation
It was at this point I discovered CRY. Following my operation I had a slower than expected recovery. I was told I would be fit enough to return to work after a week and well enough to run after two. Two weeks later I was still off work with chest pains and even walking was uncomfortable. I did some research and found articles on the CRY website from others who had been through similar situations to me. It was reassuring to see others had taken longer than expected to recover post the ablation and that they were now up and doing well. I took it easy and had some additional tests to check that all was well with my heart, it was great news and the ablation had worked. I no longer had an irregular heart rhythm! About six weeks after the
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myheart has recieved feedback that videos help support other members, especially those who have been recently diagnosed. If you would like to record a video or send in your story to be added to the website, please contact our myheart Coordinator via myheart@c-r-y.org.uk.
myheart newsletter 2016
Research news
Edited excerpts from an interview with Dr Gherardo Finocchiaro, who has been a CRY Research Fellow since 2014, and had the paper “The Safety of Exercise in Individuals with Cardiomyopathy” published in the Canadian Journal of Cardiology in April 2016. Why can exercise be considered a risk for people diagnosed with cardiomyopathies? Cardiomyopathies are a varied group of diseases which are characterised by mechanical and/or electrical abnormalities. They are a common cause of sudden cardiac death in young athletes. Intense exercise involves a series of physiological changes. These are well tolerated in individuals with a normal healthy heart, whereas they may constitute a trigger for potentially fatal arrhythmias in subjects affected by cardiomyopathies. Therefore both American and European guidelines suggest individuals diagnosed with cardiomyopathies avoid competitive exercise.
should be avoided. Why are certain types of sport particularly discouraged for cardiomyopathy patients? There are a few sports that are considered to be at low risk for sudden cardiac death even at a competitive level. These include sports with low static/dynamic exercise, such as bowling, golf or billiards. Generally all other sports are considered not safe for patients with cardiomyopathies if practised at a competitive level. Are there significant differences between the cardiomyopathies in terms of risk due to exertion? Recent studies showed that certain cardiomyopathies, such as arrhythmogenic right ventricular cardiomyopathy (ARVC), are likely to be significantly impacted by long-term exercise and sport. This condition is characterised by arrhythmias developing during exertion and the disease seems to be affected and worsened by sporting activities. Can an ICD help reduce the risk of intensive exercise?
Is exercise always important, regardless of whether someone has a cardiac condition?
Yes, it may do. However there is only one multicentre experience on this specific issue.
Yes. Exercise has been demonstrated to reduce the risk of cancer, high blood pressure and high cholesterol. Aerobic exercise is recommended in patients with heart conditions such as heart failure and coronary artery disease. Individuals with cardiomyopathies are not excluded, but given the risk of fatal arrhythmias related to their condition, explosive bouts of exercise and very strenuous exercise
We don’t have definitive data on risk and harms of competitive sport in patients with ICDs. Therefore both American and European recommendations advocate exclusion of patients with cardiomyopathy and ICDs from most competitive sports, with the possible exception of those characterised by low static and low dynamic intensity.
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Have you been diagnosed with a heart condition when you thought you were fit and healthy? Are you between the ages of 12 and 35? If you are between the ages of 12 and 35 Cardiac Risk in the Young (CRY) can help you. 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 between the ages of 12 and 35 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, pacemakers and undergoing ablation surgery.
How to join myheart
myheart offers: • Medical information about different cardiac conditions, tests, and treatments. • Personal stories and videos from other young people who have been diagnosed with a cardiac condition. • Videos from our myheart Cardiologist answering frequently asked questions. • A members’ only area of the website for members aged 16–35 which features an activity area and a blog. • National meetings for members 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.
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 own 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 The book – 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 book is for and by the growing numbers of young people who – thanks to greater awareness and early diagnosis – are learning to live with a diagnosis (often “out of the blue”) of a potentially fatal heart condition. Tel: 01737 363222
Email: myheart@c-r-y.org.uk
@myheart_UK
Websites: www.myheart.org.uk
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