myheart Newsletter 2015
News and Events | Raising Awareness | Members’ Stories
In this
Newsletter
Tel: 01737 363222
What our members have been up to
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CRY events attended by members
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myheart Meetings
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Other news
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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 The myheart Network was abuzz with activity in the year 2015! myheart members were busy raising awareness or fundraising, and the team at CRY have been making the Network more resourceful and useful for the members. Amongst other initiatives in 2015, we have launched a myheart Twitter account: @myheart_UK, myheart Cardiologist Dr Michael Papadakis recorded a series of videos to answer the most frequently asked questions, and some myheart members have sent in their own videos to help support anyone with similar conditions.
New myheart website
A blogging area for members to write and share their stories, thoughts and experiences.
If you are a member aged 16–35 and would like to access the members’ only area on the website, please register via www.myheart.org.uk/register. CRY will send you an email confirming that your membership has been approved after you register. Once the membership is approved (requests sent over the weekend can only be approved on Monday morning), you can start using the forum and write a blog if you are willing. There have also been several other improvements to the website and its content. We have added videos from members because we understand that, as well as medical information, young people who are undergoing cardiac investigations may also like to hear from others who have undergone similar tests or received the same diagnosis. A new series of useful videos have been added to the website which answer frequently asked questions, including one about exercising with a cardiac condition. The questions have been answered by CRY myheart Cardiologist Dr Michael Papadakis.
We are delighted to announce that we have revamped the current myheart website www.myheart.org.uk to make it more resourceful for our members.
James Bailey’s story featured in the British Journal of Cardiac Nursing
There is now a members’ only area on the website, exclusively reserved for myheart members who are between the ages of 16 and 35. An activation code is sent to new members to give them access to the website. This area contains a forum and blog for members only.
myheart member James Bailey was diagnosed with Wolff– Parkinson–White syndrome shortly after what doctors described as a “panic attack” on the football field. Luckily, James was signed up for a CRY screening at his school two weeks later and his underlying cardiac condition was uncovered. Following a request from the British Journal of Cardiac Nursing, James’s story was published on the 10th February in Volume 10, No.2, with the title: “One of the lucky ones: early diagnosis saved James’s life”. You can read James’s full story on the website: www.myheart. org.uk/james-bailey
Eight myheart members become CRY Representatives •
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A forum where myheart members can connect with each other, as a safe place to discuss any issues or concerns relating to living with their diagnosis and any concerns that the members feel unable to share with others. This is a great place for members to gain support and discuss their experiences with other young people who have a cardiac condition.
Paula Beck (Surrey), Mallory Brand (London), Cat Burns (Southampton), Tim Butt (Essex), Lucy Challis (Surrey), Sian Donnelly (Kent), Rebekah Goddard (Dorset) and Joseph Tanner (East Sussex) have volunteered to become myheart Representatives. Representatives act as an advocate for CRY and help to raise awareness of cardiac conditions affecting young people, whilst continuing to offer their valuable advice and experience to newer members of the myheart Network.
myheart newsletter 2015
What our members have been up to At the annual CRY Information Day on 7th March 2015, held by Chief Executive Alison Cox MBE, five of the new myheart Representatives were in attendance to receive an update on CRY news and initiatives for the year ahead.
to the patients how muscle can be built around the ICD and, from personal experience, was able to inform them which exercises they should avoid and how to prevent injury or damage to their ICDs and leads. Paula reported that many people showed interest in CRY following her talk and took information on the upcoming CRY Bridges Walk, whilst the arrhythmia nurses took CRY leaflets to display for their younger patients.
Paula Beck’s presentation on exercising with an ICD myheart member Paula Beck gave a presentation on “cardiac rehabilitation into exercise” at St Peter’s Hospital, Chertsey, on Saturday 11th April. ICDC Surrey were holding their annual education day for Surrey patients with implantable cardioverter defibrillator (ICD) implants, and the families and carers of people with ICDs were also invited to attend. Paula was supporting Dr Michael Papadakis, clinical lecturer in cardiology at St George’s Hospital and myheart Cardiologist, who spoke about the types of cardiac disease that affect young people and the challenges of having an ICD implanted.
Joseph Tanner’s Brighton Marathon Joseph: This story begins on Sunday 16th March 2008; I entered the Hastings Half Marathon. The week before the half marathon I had a cold, and at the time I didn’t think much of it. On race–day I felt all right, although I texted a number of people saying something wasn’t right, and that I would text them after the race. I never sent that text because that day my life changed; I collapsed at the finish line and had a cardiac arrest. If you think about it, running saved my life. I have a condition where it is common to die in my sleep. My condition decided to show itself on a day that I was running, a day that defibrillators were at hand and I could be saved – so, yeah, running saved my life.
Paula is a personal trainer and fitness instructor who was diagnosed at age 30 with Brugada syndrome, a condition found in her family’s genes after her brother Craig suddenly died at 31. Her family were screened at St George’s Hospital and both parents as well as her sister were found to have the condition. Paula’s presentation was aimed at introducing a positive approach amongst patients towards facilitating their return to exercise in a safe and controlled environment. She hoped it would build patients’ confidence in their ability to return to safe daily activity or community–based exercise and increase their understanding of ICDs. She emphasised
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I was then diagnosed with a heart condition called Brugada syndrome, and doctors/cardiologists/specialists said that I would never run a marathon again. It was tough to take in, the idea of not running again, even though I came away with my life. I wouldn’t run again until 2010 when, after some support from the myheart crew, I finally found the courage to put on my running shoes again. It did take a lot of courage to put my running shoes on. I had a cardiac arrest whilst running and I feared it would happen again, that is a hard hurdle to climb over! I never knew how far I should or could run; no–one would/could give me those answers. My burning desire to run another marathon returned in 2014 when I volunteered to cheer on CRY runners during the Brighton Marathon.
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What our members have been up to So with my mind made up I decided to sign up for the Brighton Marathon. I was honest when filling out the application, a part of me wanted them to refuse me entry for the marathon.
if it wasn’t for all the support I received from myheart members that I met through CRY.
Runner: Joseph Tanner
Time: 04:28:43
Joseph and Paula interview with myheart Cardiologist Dr Michael Papadakis
Saturday 11th April 2015 – a night that I won’t ever forget – the night before the Brighton Marathon. I am being very generous saying that I had three hours’ sleep the night before. I had run many miles before the marathon day, but I did have a fear that this would really be my last run. I felt bad because my sister was pregnant at the time and I felt that maybe I was being selfish. I also had my parents in a tailspin not wanting me to run this marathon. I had to do this for myself, though I really wasn’t sure what I was trying to prove. That night I talked myself out of running a million times, and yet I laid in my bed until my alarm went off – though I really didn’t need it! I walked to Preston Park, the starting point of the Brighton Marathon, en–route passing so many people that were on the same path as me, yet on a very different journey. At Preston Park I waited around anxiously until the race started, then I lined up with all the other runners, my nerves building up more than ever. It was just the waiting – once I started running I knew I would be fine. I had felt fine all the time – tired due to lack of sleep – but fine.
On the morning of April 21st, myheart members Joseph Tanner and Paula Beck were filmed at St George’s Hospital in discussion with Dr Papadakis about exercise with a cardiac condition. Both Joseph and Paula have been diagnosed with Brugada syndrome and have an ICD fitted – yet were hugely enthusiastic about fitness before learning of their condition and have since been keen to establish how to exercise within safe limits. The film is now available on the myheart website, along with a series of other videos in which Dr Papadakis answers several frequently asked questions, particularly concerning exercise.
myheart at the Congenital Heart Disease Conference
Around the 17/18–mile mark I started thinking to myself, I’m going to get around this course without hitting the wall. Sadly, I got a bit ahead of myself, even before the race I had a mental barrier of 18 miles because that is all I had done in training. At the 19–mile mark my legs gave in and I had to start walking, I text Charlie to let her know, from this point forward I would walk five minutes and then run five minutes. The five–minute runs felt like the longest run in the world, and the walking time went far too quickly!
Sian Donnelly, a myheart member and CRY Representative, kindly accompanied Kanika Bhateja, CRY myheart Coordinator, to the Congenital Heart Disease Conference in London on July 9. There were 50–60 nurses from all over the UK who attended the conference. The 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.
I would have never been able to run a marathon again
In 2015 charitable organisations were invited to host a
I loved every single minute of running, through the city that I love, the place that I now call home. What also felt good was all the people that I was overtaking, damn that competitive side came out of me! I was doing a good time; my friend Charlie informed me that at one point it looked like I would finish in 3hrs 45mins.
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myheart newsletter 2015
What our members have been up to stand at the conference so that the course attendees could have an opportunity to talk to them and the services they offer for children with cardiac conditions. Many of the nurses we spoke with were interested in myheart because they felt there were hardly any support groups for young people with cardiac conditions. Just before lunchtime, myheart member James Doherty and his mum Sarah gave a presentation on James’s life–threatening cardiac condition, long QT syndrome. The presentation was the highlight of the day as James and Sarah peppered their talk with funny anecdotes and were absolutely optimistic about his condition. James and his mum gave an inspiring and personal insight into what it is like for young people with cardiac conditions, and their parents.
that will be stored in the British Library archives. You can listen to the four–minute programme at www.bbc.co.uk/ programmes/b05xqbw6
Billericay Town Football Club screening CRY held a two–day screening at Billericay Town Football Club in Essex on May 16th and 17th, and a total of 195 people were screened over the two days. This screening was funded by myheart member Tim Butt’s myheart fund.
Chris Currie’s radio interview myheart member Chris Currie and his friend Clare recently took part in BBC Radio 4’s The Listening Project. They talked about how Chris’s acquired brain injury as a result of a cardiac arrest has affected their friendship. This was extracted from an hour–long conversation between Chris and Clare
myheart members at CRY events CRY Heart of London Bridges Walk 2015
team was led by myheart members Cat Burns and Joseph Tanner. The Bridges Walk warm up was again led by fitness instructor and myheart member Paula Beck.
CRY Parliamentary Reception 2015
On Sunday 28th June, a record number of walkers – 1,925 – congregated in London’s Victoria Embankment Gardens ahead of CRY’s 9th annual Heart of London Bridges Walk. With almost 2,000 participants, it was, once again, a poignant yet positive occasion – more so in 2015 with the charity marking its 20th anniversary.
The CRY Parliamentary Reception 2015 at the House of Commons was attended by seven myheart members – including four myheart Representatives – on November 25th. Chris Currie, Alessandro Miccoli, Joseph Tanner, Cat Burns, Emma Jackson, Tim Butt and Paula Beck all 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.
It was an opportunity for many walkers to meet up again with others similarly affected, and also to talk to CRY staff and those who may have offered them support. 2015’s Bridges Walk saw nine myheart members in attendance. Some of them chose to be a part of “Team myheart” while others walked with their families. The Patron John Inverdale with myheart members
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Interview with Miccoli
Miccoli is a three–member alternative–indie band from Birmingham, made up of twin brothers, Alessandro and Adriano, and sister, Francesca. Whilst their popularity is soaring musically, they are becoming powerful youth icons too. Alessandro was born with the heart condition Wolff–Parkinson–White (WPW). He remained unaware until a frightening episode when he collapsed backstage after a gig in Birmingham in 2009. He has since undergone four rounds of corrective surgery – a procedure known as an ablation. Whilst the band continue to write and perform their music, Alessandro is still waiting for the final all–clear after his most recent, and hopefully final, treatment. Alessandro’s twin brother Adriano has also been diagnosed with WPW as well as atrial fibrillation (AF), for which he is taking medication. The band’s youthful fans not only admire them for their amazing music but also because of their positive attitude, spreading CRY’s message in spite of two of their band members suffering from life–threatening heart conditions. From 30th August 2014 to 15th February 2015 Miccoli undertook a nationwide tour of shopping centres in the UK to raise awareness of CRY in all the places they visited. Below are excerpts from a July interview with CRY to mark the end of their 2014/15 tour. The full interview with links about their tour for CRY can be found here: www.myheart.org.uk/interview-with-miccoli
Interview with the Band Q: Congratulations! Your recent CRY awareness tour has been a great success and we much appreciate you doing this for CRY. I understand that you influenced many people from different walks of life with your soulful music and CRY’s important message. Your tour must have been both emotional and exciting and I would appreciate your thoughts about it. We met so many different people – so many different stories – some were heart breaking, some were reaching out for help and some were just concerned about keeping healthy. What was so rewarding in all this was being able to give back instantly in some small way, whether that was through telling them about CRY, sharing our experiences or simply sharing our music with them. Q: Were people curious about your condition and did they ask questions about CRY?
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When telling people about my personal experiences with heart conditions – for me CRY is also at the forefront, as they were there throughout my journey from diagnosis to operations. It’s very hard not to mention one without the other. Q: Do you think people relate to you better as a band member rather than they do CRY as an organization? Yes I guess in some instances it did, purely just as a way of showing people I can still do what I’m passionate about and live a fairly normal life – in the process showing people how CRY helped me achieve that. Q: How do you think you might be able to spread CRY’s message in the future? CRY will always be an important part of our life and as our career develops we want to include CRY as much as possible – continue to spread awareness – whether that be a concert for CRY or simply being there when/if they need us.
myheart newsletter 2015
Interview with Miccoli Q: Were there any questions asked about screening? Many people approached us concerned about their symptoms and how they were feeling, the best direction we could give was towards CRYs screening. This information gave them tremendous relief in knowing there was help somewhere for them after being ignored and unfortunately turned away by their GP. Q: Your CRY raising awareness tour sounded really challenging – getting burgled in your tent, getting lost, playing guitar and piano with a cut finger. What is your most memorable incident? We had a few bumps along the way but I guess that’s one of the many charms of being on the road, we had an amazing time, it was so rewarding giving back to people and knowing you probably saved a person’s life that day, by giving them information they may not have otherwise found. Q: They say that young people are getting addicted to your recent acoustic version of ‘Addiction’! Could you describe this feeling for me? It’s a good addiction to have, we create songs that hopefully will inspire people in some way so it’s rewarding when people like a track and respond in the way they do. Q: Your new EP, Idle Stranger has been nominated for many awards. You mentioned in one of your interviews that “Fear”, your track from Idle Stranger is “a small taste of things to come.” Would you, could you “spill the beans”? With the new album it’s a little darker, edgier, detailed harmonies and more of a fuller sound then what we have done before –”Fear” was one of the darker, melancholy tracks off the EP . Q: The fact that it’s all in the family is endearing, and rare. You are being compared to other sibling bands like the Corrs and Gallagher. Do you think being family strengthens the band? Are there complications – silly sibling fights, or perhaps some differences of opinion? We have had a few little disagreements/fights they have gotten better as we are a little older from when we first started out. I think it is easier being in a family as you can be more honest and upfront with each other, you go through so many emotions and pressure in a band that you can rely on each other to lean on and push each other forward and trust more as a family. Q: I believe there is no family background of music. What inspired you to start your own band? We all started playing instruments from an early age, listening to our parents records, having a love for music and from there it kind just grew, we started writing songs
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in high school and then took an interest in recording them, slowly over time its evolved to what it is today. Q: Your music video for “Idle Stranger” has received massive play on popular music channels and the radio. You are becoming youth icons for budding musicians and an inspiration for young people living with heart conditions. Do you have any advice for youngsters? If you have a passion for something just go do it, don’t let anything stop you including heart conditions, as soon as you see it as a problem it becomes a problem, always remain positive. Never give up on your dreams regardless of how many hurdles you have to overcome. Q: Can you reveal who is your music icon? We have many, but main icon(s) growing up would be Fleetwood Mac. Q: How important do you think cardiac screening for young people is? It’s vital, I believe it’s now mandatory in Italy that all children are screened in schools – consequently the death rate has dropped dramatically by 90%, surely that is all the evidence needed for this country to follow suit. Early detection is key to saving lives and preventing such devastating and unnecessary tragic losses. Q: Are you conscious of your condition when you perform? After collapsing on stage with a heart rate of 250 it’s hard to forget! But after four heart procedures, I’m now secure in the knowledge that I am finally on the mend – freeing up my mind to focus on the performance. Q: How often and for how long do you practice? When we have gigs it will be every day, when we are recording its in–between as were working so much in the studio. Q: Is music discussed all the time at home? Pretty much all the time, we live, breathe, sleep it. Q: Are there more albums in the offing? At the moment we are finishing off recording our album “Egos and Idiots” which will be released this August. Q: Are you touring a lot this year as well? We will be playing gigs towards the end of this year, currently we’re busy in the studio finishing up the album. Q: Do you have any suggestions on how CRY can increase awareness with young people? To simply continue the great work they already do, the awareness with CRY keeps growing more and more each year.
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myheart Meetings & Other news Spring National myheart Meeting The first myheart meeting of 2015 was held on 8th March at the Holiday Inn, Sutton, and was attended by 10 myheart members. There was a support session in the morning led by counsellor Alan Jones and the second session after lunch was led by Dr Papadakis, myheart Cardiologist and a clinical lecturer in cardiology at St George’s Hospital, London. The myheart meetings are an opportunity for members to meet other members and ask questions about living with a heart condition in an informal setting. Anybody between the ages of 14 and 35 is welcome to attend a myheart meeting if they have either been diagnosed with an inherited or potentially inherited cardiac disease, have an implantable cardiac defibrillator (ICD) fitted or have been offered an ICD, or have suffered a sudden cardiac arrest.
Autumn National myheart Meeting Eight members attended the second myheart meeting of 2015, held on the 1st November at the Holiday Inn, Sutton. Global’s Make Some Noise kindly agreed to fund the year’s second event. Alan Jones was the counsellor for the morning session and myheart Cardiologist Dr Michael Papadakis answered informal medical questions in the afternoon. Global is a media and entertainment company, home to the brands Heart, Capital FM, Classic FM, Smooth, LBC, Capital Xtra, XFM and Gold. Make Some Noise pulls together all Global’s stations, reaching a combined 23.2 million people every week, to change young lives for the better.
Other news myheart Twitter account launched
myheart member videos
myheart has continued to become more active on social media, posting updates about new website content and raising awareness of the myheart Network both on the CRY website and through CRY and myheart Facebook pages.
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.
We are happy to announce that now you can follow us at @myheart_UK for Twitter updates on myheart news and events!
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. If you would like to record a video or send in your story to be added to the website, please contact our myheart coordinator at myheart@c-r-y.org.uk.
Annamarie Vickers–Skidmore’s poetry book myheart member Annamarie Vickers–Skidmore released a poems pocketbook highlighting her experience of living with a heart defect in July 2014. The book is available via www.lulu.com for £3.15 with all profits going to CRY. Heartfelt Thoughts is a compilation of three poems highlighting her experience of living with a heart defect. (Video snapshot: myheart member Zenia Selby)
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myheart newsletter 2015
Members’ Stories Chloe Harris’s article on having a reveal device fitted My name is Chloe and in April 2006 I lost my half–sister to ARVC (arrhythmogenic right ventricular cardiomyopathy). Like so many other ordinary families, our loss was our first introduction to the reality that so many young people lose their lives to this type of condition that so regularly goes undetected. In the last nine years I have travelled once or twice to my hospital from my home in Kent to have tests carried out and repeated to monitor me for the same condition. In January 2015 they detected a change from the year before, and this – combined with a few unexplained fainting episodes in the October of 2014 – prompted the staff to want to fit me with a “reveal device”. [The device is used to record your heart rate and rhythm if you have an unexplained fainting episode, dizziness or palpitations.] I had the reveal device fitted at the start of April. I struggled to find anyone to talk to about how I felt about having this done, after all, the doctors can only tell you the medical side, and anything you find on the internet reads pretty much the same thing. This was really frustrating considering I was reassured that it was a very common thing for people to have fitted. This is what prompted me to contact CRY and write this. The medical ins–and–outs of the procedure was not the information that I needed. Medically it’s so simple my consultant wouldn’t even call it an operation, which is fine, but he wasn’t the one having it done. Facing the procedure was the first time (nine years down the line) that I had to face the fact that my and my family’s journey with ARVC might not have stopped at the loss of my sister. Leading up to my admission to hospital I went through the full range of emotions – I am very lucky to be so well supported by my family. I was exceptionally worried and nervous almost all of the time, more about the future and what this might uncover than the device–fitting itself. On the day of my procedure I travelled by car, as they advise that after you’ve had the device fitted you do not use public transport to get home again. I was admitted to the short stay ward, changed into a lovely hospital gown and had an ECG and blood pressure taken. I waited to meet the consultant doing the procedure and one of the theatre nurses who would be looking after me. I had a cannula fitted (in case of an emergency, and to give antibiotics to protect me against a very small risk of infection). I chose not to be sedated and had the procedure just under local anaesthetic.
stitching they did to reduce the size of the scar as much as possible. After the stitches they scanned the device to make sure it was working. Back on the ward my family were waiting for me. I was given my other half to the device so I can track my symptoms (if I get any) and my patient card which has the device’s serial number on it; I have to keep both of these things with me at all times so they stay in my handbag. After two hours I was allowed home after being given all of my paperwork; I had to eat, drink, walk around and go to the toilet. After a week I went to the GP to have my stitches taken out – which was a big relief for me as I was very worried about catching them. I had to have a week off from work and now I can do everything that I could do before. It may seem strange but I was really concerned about being able to feel the device. Yes I can feel it when I move or lay on my front etc., but I am getting used to it being there and it isn’t anywhere near as pronounced as I feared it might be. No–one can see it and the consultant made sure that it was very low in placement in case I became concerned or self–conscious about it, even with the very small scar I will be left with. For anyone facing having this device fitted I would suggest the following; make sure you have someone to talk to, the emotions this stirred up for me were huge. Write down your questions to ask the doctor, and if you are not happy with the answer ask your question again and ask for clear answers. Ladies, get a comfortable non–wired bra for the first few weeks just in case. Find something to focus on to distract yourself if you aren’t very comfortable or happy in hospital environments; it really will help, especially if you opt not to be sedated like I did. In my head I repeatedly sung (Baz Luhrmann’s “Wear Sunscreen” to be precise), it may seem strange but it will give you something to focus on and will take you to a different place, it kept me calm anyway; find something you know will work for you. I hope that this might help someone with the non–medical information I needed but could not find. I wish you enough sun to keep your attitude bright. I wish you enough rain to appreciate the sun more. I wish you enough happiness to keep your spirit alive. I wish you enough pain so that the smallest joys in life appear much bigger. I wish you enough gain to satisfy your wanting.
I walked with the nurse into one of the catheter labs; just under an hour later I was wheeled back to the ward. The fitting takes a very short time; the rest of the time was taken up by the staff’s preparation and the careful
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I wish you enough loss to appreciate all that you possess. I wish enough “Hello”s to get you through the final “Good-bye”…
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Members’ Stories Zenia Selby’s story I was out on a 5K run when suddenly my heart starting beating several times faster than it should have been. I stopped, sat down, breathed deeply, but nothing would stop it. I was in the middle of a wood when it happened, exactly halfway through the run and so about 2.5km away from home. After about 10 minutes of resting, I made my way home, but even 20 minutes later when I got there my heart hadn’t stopped racing. My housemate told me to call 111; they told me to call 999. I was rushed to hospital, but no–one could find anything wrong with me – by the time the ambulance got to my house, the palpitations had stopped. But they had been ongoing for about 40 minutes. That sparked a whole series of hospital trips, ECGs and even an echocardiogram, all through my final year of university, when my dissertation was due and finals were looming. Two days before my Latin exam, and a week before I had to move to London for a new job, I was finally diagnosed with Wolff–Parkinson–White syndrome. My treatment was moved to London and there followed several more ECGs and hospital trips. During this time, I was very grateful for the support of CRY. I was told that my condition was relatively mild, but would have to be dealt with. I had two options; the first was to be on beta blockers for the rest of my life, which would keep me safe from the risk of further heart attacks, but would mean I could never run in the same way again. The second option was a catheter ablation, where they would simply cauterise the extra electrical signal in my heart that was causing all the palpitations. Keen to fix the problem, and keen to get back into training, I opted for the ablation. The cardiologists explained to me the minimal risks of the operation, and reassured me that they thought the extra signal was on the other side of my heart from the normal electrical centre, so the risks of damage to my heart’s normal functions was even more minimal. I waited a few months for the operation date, but it finally arrived, and I made sure that I went to my favourite comedian’s show the night before so that I was fully relaxed (for any other comedy fans out there, it was James Acaster – he really is incredible!). I ended up being in surgery for three hours, as they opened arteries in my groin to insert the catheter tubes that would lead to my heart. They then set off my palpitations, so that
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they could identify where exactly the extra electrical signal was (which, to be perfectly honest, was terrifying!). After an hour the surgeon came and told me that it was exactly where they thought it was, and they would ablate it. I was given a few extra doses of morphine, and after another hour or so (I lost track of time…) my heart was completely normal. They kept me in hospital for a further three hours, just for observation, so that they could be sure the bleeding in my groin had stopped. I was very lucky to have the support of my mother, my friends, and my boyfriend all the way through the procedure. I was completely overwhelmed by the number of supportive messages I received, and the amount of cake that I was brought! If I could draw a top three tips from my experience for anyone else going through the same thing, I would say: 1. Don’t worry too much. The risks are minimal. Stay positive, and trust the doctors – they will take very good care of you. 2. Equally, don’t downplay it too much. As much for my own peace of mind as for others, I dismissed the operation as nothing serious. It is serious. It is scary. Make sure you have a loved one with you. 3. Accept the sedative they offer you! Trust me, you will need it.
Paul Cowling’s story Before I share my experiences and try to give some idea of how I try to cope with what has happened, one thing should be made very clear: having a heart condition sucks. I mean, it really sucks. It’s a massive thing to have to comprehend; that the core element of us, the heart, doesn’t work as it should. Or might not at some unspecified time in the future. How do you process that? With all the other challenges that we face in life, whether it’s exams, or paying rent, or accidentally locking yourself out when doing the bins and having to wake up your neighbours at 7:30am to get back in (I’m still so sorry Flat 19), having your body fundamentally betray you is hard to take. In my particular case I had a cardiac arrest when playing football two years ago. If I hadn’t been with a group of such amazing people who knew CPR and kept me alive, or if I hadn’t been playing on the corner of Tooting Bec
myheart newsletter 2015
Members’ Stories Common closest to St George’s Hospital, I might not be here today. I have no recollection of the day, waking up in the ICU on a Tuesday afternoon and thinking it was Sunday morning. The details of what happened keep on changing depending on whom I ask. At first I was told that my heart stopped for a few seconds, but that turned into 4 minutes, which has now become just over 30 minutes after I spoke to one of the London Ambulance Service guys who kept me alive. He also went on to tell me: “You turned the colour of a dead person and you weren’t responding. I thought you were dead.” Thanks, Bash! And so here I am, diagnosed with dilated cardiomyopathy and with an ICD fitted and on more medication than I thought was possible. I am so thankful beyond words to my friends who not only saved me, but have also kept me sane throughout this whole time. The ambulance and NHS staff who have kept me alive also rarely get enough praise and I will never be able to thank them for what they have done. How to follow on from this good news tale? That really is the question that most of us need answering more than how to deal with the medical side of things – medically trained professionals are here for that! The technical information is useful and the detailed reasoning behind the medication they give you is comforting. Your friends and family will always be there and, while maybe not having had to go through the mill quite as horrifically as my lucky lot, you should never tire of their concern and support (even if it does grate on your nerves being asked about whether or not that shopping bag is too heavy…). But no–one, and I mean no–one, is going to know your condition as well as you because it’s your body and you are the one who knows its rhythms and how it is responding to activity, stress, medication – the list goes on. Your cardiologist can give the most detailed explanation of beta–blocker medication and why you need to increase your dose, but telling you about how rubbish it is to wake up to chest pain and freaking out because you don’t know if it is something serious, or just the fact that you did a load of carrying stuff yesterday (maybe that shopping bag WAS too heavy…), is not something they can help you with.
one–to–one set up with a doctor or therapist, just a group of people having a chat. These guys “get it” – you aren’t going to be asked “Are you sure you should be doing that?” or “I think you should take it easy”. They understand the frustration, the uncertainty, the fear that maybe you don’t want to show anyone else. CRY is a community that allows you to gain an understanding, and maybe acceptance, of your condition. And that should always be the goal – living with this condition (varied!) in the best way possible for you, without going insane through an overload of advice. Knowing that I am not alone and that the stories I have told has given others some positive reinforcement is one of the best things that could happen from getting this heart condition (which sucks). So don’t be isolated in this challenge – there are people ready and willing to help you. Yes, it’s a massive thing to have to deal with and you will carry it with you for the rest of your life. But you don’t have to carry it alone.
If you would
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.
This is why CRY has been so helpful to me and anyone with a heart condition, trying to find our places in the world. Sorry to sound dramatic, but it is really does feel that confusing and challenging at times. At others it feels like the biggest fuss in the world over something that had completely gone out of your mind today. The support that CRY offers, through both its dedicated staff and in the opportunity to talk to other people with similar experiences, if not conditions, is invaluable. Because let’s remember my starting point: having a heart condition sucks. CRY allows people like you and I to share our experiences with people who really understand the range of emotions that you are going through. I have been to three meetings so far and I have left every single one feeling more positive and well informed than when I went in. It is not the nerve–wracking
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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 a forum 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
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Websites: www.myheart.org.uk
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