CRY Surgery Supporters
Network Newsletter 01 Autumn 2009
News and information for fit and healthy young people living with cardiac abnormalities
Back to track Tracey Duncan’s story P2 CRY Philips ‘testmyheart’ 09 P3 James Doherty’s Wimbledon P4 About the CRY SSN
A few weeks ago I received some exciting news. I had qualified to compete at the UK Athletic Championships in July this year. For anyone, this would be great news. For me, it was so much more than that. In 2004 I was diagnosed with right ventricular outflow tract tachycardia (RVOT). Before this I was a pretty good sportsperson: I had won international medals for 400m hurdles and the 4x400m relay at junior level, including the European Juniors and World Student Games. I competed at the Commonwealth Games and European Championships in 2002. I was just breaking through as a professional athlete. In 2004 I noticed a significant dip in performances which were unexplainable by me or my coach. Blood test after blood test and still no answer. I trained harder. One visit to Professor Greg Whyte at the Olympic Medical Institute (OMI) and the reason began to unfold. The initial test (ECG on a treadmill) showed an irregular heartbeat – really fast beats followed by a very slow beat. I was quickly referred to another cardiologist, Dr Stephens, and told to stop training immediately. I was devastated. In 2005, after an eight month course of medication, I was referred for radio frequency ablation surgery. It was successful. After months of monitoring I was told I could resume sport. Not so easy. Physically the illness hadn't created many complications. The doctors were experienced and extremely approachable. Psychologically, I was damaged much more deeply. There were so many questions – if the trigger for RVOT couldn't be explained, then how could I be sure it wouldn't
return? If I really am OK, what do I do now? With the support of Greg and his team I realised that, physically, I could go back to track if I wanted to. They would take care of my heart so I could get back where I belonged. It was a great feeling when I first stepped back on the track in 2006. I had no fitness whatsoever but the body eventually remembers. With gentle encouragement and slow progress I began to regain fitness. In July 2007 I had my first competition. I felt like I was flying. It was seven seconds slower than my best but it didn't matter. I was a new athlete now. I was happy just to be there. So now I train two to three times a week (rather than the sixday week I used to do) and I have fun. I respect my body and listen to warning signs. If I am more tired than usual on a training day or if I have a cold then I take the day off – I have nothing to prove. Even if I couldn't return to track, I did discover other activities that are less stressful on the body. Most importantly, I am being looked after by my cardiologist. This way he can worry about my heart and I am able to relax and enjoy my sport. Unfortunately, I was unable to compete at the championships this year because of injury. But that's OK, I am so thankful that I have overcome the mental and physical challenges to compete again and to actually enjoy it. CRY Surgery Supporters Network Autumn 09 |
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testmyheart 09 CRY and Philips screen the UK
CRY’s new heart screening tour saves young lives. ‘Testmyheart’, a national campaign that aims to reduce the number of undiagnosed heart conditions, kicked off in Durham on 2 May 2009. CRY, together with health company Philips, created a mobile heart screening unit which toured England to offer free heart testing. This was the first free tour of its kind in the country. More than 2,000 young people underwent heart testing during the tour. Heart abnormalities, some of which could have led to sudden cardiac death, were detected in 14 young people. CRY's consultant cardiologist Professor Sanjay Sharma has called the ‘testmyheart’ tour a success; "which identified potentially serious conditions in a minority, and reassured the majority, preventing many unecessary visits to GPs." Anyone who would like to learn more about the screening tour or the CRY ‘testmyheart’ programme should go to www.c-r-y.org.uk/testmyheart.htm. The CRY and Philips screening website can be found at www.testmyheart.org.
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| CRY Surgery Supporters Network Autumn 09
An ace day out
James Doherty, who had his Wimbledon dreams shattered by a devastating heart condition, took a starring role at world’s most famous tennis tournament. A teenage tennis player who ‘died’ for 11 minutes, fulfilled his dreams of walking onto a Wimbledon Centre Court final – in the excellent company of Roger Federer and Andy Roddick.
delivering a life saving electric shock to kickstart his heart back into a healthy rhythm should it ever stop beating again. You can read more about James’s story at www.c-r-y.org.uk/wimbledon_2009_coin.htm
James, now aged 14, stopped breathing after collapsing while playing tennis .
History repeats
At the time James was a county player and one of the UK's most promising tennis players.
Another CRY SSN member, Laura John, took on the important role as official coin tosser in 2004 at the Wimbledon Men's Singles Final.
He has a heart disorder known as long QT syndrome (LQT) which alters the heart's electrical pulsing rhythm and can cause the heart to stop beating.
Interestingly this final was also between Roger Federer and Andy Roddick and, yes, Federer went on to win both finals!
Prior to his cardiac arrest, James' condition had not been diagnosed. James was saved by the quick and professional actions of a spectator, Alan Percy, who, together with James’ fitness trainer, Karen Browne, performed cardiac massage and mouth to mouth resuscitation. James was then cared for by the team at Great Ormond Street Hospital for children and an implantable cardioverter defibrillator (ICD) was implanted. The defibrillator is implanted in James' chest wall. This is to prevent James from having another cardiac arrest by
CRY Surgery Supporters Network Autumn 09 |
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About the CRY SSN What we can do for you
What you can do for us
It is estimated that one in 300 young people aged 35 and under who undergo cardiac screening are found to have a potentially life-threatening condition that will require treatment. With an increasing number of young people now being screened every year through CRY clinics and mobile units, even more people are likely to need emotional support and information to help them cope with their diagnoses.
This is your newsletter. We need you to let us know about the issues that matter to you and what you want to see covered in these pages. We could, for example, have a Questions and Answers section to deal with important issues such as travelling advice, getting back to sport, recovering from surgery, living with a pacemaker or ICD, etc. Tell us what you think. And, of course, we would like to include your own stories and photos. Please send these to us, along with your comments and feedback.
How to become involved
I was diagnosed with long QT and given a pacemaker which has now become my best friend. I thought I’d never get used to it, but now I wouldn’t ever consider not having it. It’s a good conversation starter!” Rebekah Goddard The CRY Surgery Supporters Network (CRY SSN) was created in 2002 to offer support to young people (and their families) who have been diagnosed with a heart condition, and who are recovering from cardiac surgery or perhaps living with a pacemaker or ICD. Members email each other regularly to share experiences and help each other cope with important issues such as: z starting new schools, university or work z managing sports and social activity z living with an implant and being able to tell friends about their condition. In 2010, CRY SSN meetings will be held on two weekends in the North, Midlands and South, to enable members to take part in group counselling and talk to an expert cardiologist in comfortable surroundings – a unique opportunity.
Network members can be contacted through the CRY office. They are happy to help any young person who has had or may be undergoing implantation or ablation surgery, or those diagnosed with a cardiac condition who would just like to link up with others with similar experiences to share. To get started, you can email news and contributions to the newsletter editor, Morag McLaren, at morag@c-r-y.org.uk If you would like to join the CRY SSN or contact network members, please email Maria Carter in the CRY office at maria@c-r-y.org.uk Your contributions and comments are greatly appreciated.
Brief news and useful links... Joseph Tanner held a Dolly Parton Tribute Night last October as part of CRY’s Raising Awareness Week. Bradley Farrow accepted the challenge of having all his hair shaved off in front of a packed audience to raise funds for CRY. Julie Mills and Caroline Byrne took part in the CRY Heart of London sponsored walk in July 2009. www.c-r-y.org.uk/ssgroup.htm The CRY SSN webpages www.c-r-y.org.uk/living_with_condition.htm Personal stories from young people living with rare heart conditions www.c-r-y.org.uk/Implantable_Cardioverter_Defibrillators.htm Useful information about implantable cardioverter defibrillators (ICDs)
Cardiac Risk in the Young (CRY) Head office: Unit 7, Epsom Downs Metro Centre, Waterfield, Tadworth, Surrey KT20 5LR Tel: 01737 363222 Fax: 01737 363444 email: cry@c-r-y.org.uk web: www.c-r-y.org.uk 4
| CRY Surgery Supporters Network Autumn 09