In 2004 I was diagnosed with right ventricular outflow tracttachycardia (RVOT). Before this I was a pretty goodsportsperson: I had won international medals for 400m hur-dles and the 4x400m relay at junior level, including theEuropean Juniors and World Student Games. I competed atthe Commonwealth Games and European Championships in2002. I was just breaking through as a professional athlete.

In 2004 I noticed a significant dip in performances whichwere unexplainable by me or my coach. Blood test afterblood test and still no answer. I trained harder. One visit toProfessor Greg Whyte at the Olympic Medical Institute (OMI)and the reason began to unfold. The initial test (ECG on atreadmill) showed an irregular heartbeat – really fastbeats followed by a very slow beat. I was quickly referred toanother cardiologist, Dr Stephens, and told to stop train-ing immediately. I was devastated.

In 2005, after an eight month course of medication, I wasreferred for radio frequency ablation surgery. It was suc-cessful. After months of monitoring I was told I couldresume sport. Not so easy.

Physically the illness hadn't created many complications.The doctors were experienced and extremely approach-able. Psychologically, I was damaged much more deeply.There were so many questions – if the trigger for RVOTcouldn'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 sup-port of Greg and his team I realised that, physically, I couldgo back to track if I wanted to. They would take care of myheart so I could get back where I belonged.

It was a great feeling when I first stepped back on the trackin 2006. I had no fitness whatsoever but the body even-tually remembers. With gentle encouragement and slowprogress I began to regain fitness.

In July 2007 I had my first competition. I felt like I was fly-ing. It was seven seconds slower than my best but it did-n't matter. I was a new athlete now. I was happy just to bethere.

So now I train two to three times a week (rather than the six-day week I used to do) and I have fun. I respect my body andlisten to warning signs. If I am more tired than usual on atraining day or if I have a cold then I take the day off – I havenothing to prove. Even if I couldn't return to track, I diddiscover 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 relaxand enjoy my sport.

Unfortunately, I was unable to compete at the champi-onships this year because of injury. But that's OK, I am sothankful that I have overcome the mental and physicalchallenges to compete again and to actually enjoy it.

1CRY Surgery Supporters Network Autumn 09 |

CRY Surgery Supporters

Network

A few weeks ago I received some exciting news. I had qualified to compete at theUK Athletic Championships in July this year. For anyone, this would be great news. For me, it was so much more than that.

Back to trackTracey Duncan’s story

P2 CRY Philips ‘testmyheart’ 09

P3 James Doherty’s Wimbledon

P4 About the CRY SSN

Newsletter 01 Autumn 2009News and information for fit and healthy young people living with cardiac abnormalities

CRY’s new heart screening tour savesyoung lives.

‘Testmyheart’, a national campaign that aims to reduce thenumber of undiagnosed heart conditions, kicked off inDurham on 2 May 2009.

CRY, together with health company Philips, created amobile heart screening unit which toured England to offerfree heart testing. This was the first free tour of its kind inthe country.

More than 2,000 young people underwent heart testingduring the tour. Heart abnormalities, some of which couldhave led to sudden cardiac death, were detected in 14young people.

CRY's consultant cardiologist Professor Sanjay Sharma hascalled the ‘testmyheart’ tour a success; "which identifiedpotentially serious conditions in a minority, and reassuredthe majority, preventing many unecessary visits to GPs."

Anyone who would like to learn more about the screeningtour or the CRY ‘testmyheart’ programme should go towww.c-r-y.org.uk/testmyheart.htm.

The CRY and Philips screening website can be found atwww.testmyheart.org.

2 | CRY Surgery Supporters Network Autumn 09

testmyheart 09CRY and Philips screen the UK

A teenage tennis player who ‘died’ for 11 minutes, fulfilledhis dreams of walking onto a Wimbledon Centre Courtfinal – in the excellent company of Roger Federer andAndy Roddick.

James, now aged 14, stopped breathing after collapsingwhile playing tennis .

At the time James was a county player and one of the UK'smost promising tennis players.

He has a heart disorder known as long QT syndrome (LQT)which alters the heart's electrical pulsing rhythm and cancause the heart to stop beating.

Prior to his cardiac arrest, James' condition had not beendiagnosed.

James was saved by the quick and professional actionsof a spectator, Alan Percy, who, together with James’ fit-ness trainer, Karen Browne, performed cardiac massageand mouth to mouth resuscitation. James was thencared for by the team at Great Ormond Street Hospital forchildren and an implantable cardioverter defibrillator(ICD) was implanted.

The defibrillator is implanted in James' chest wall. This isto prevent James from having another cardiac arrest by

delivering a life saving electric shock to kickstart hisheart back into a healthy rhythm should it ever stopbeating again. You can read more about James’s storyat www.c-r-y.org.uk/wimbledon_2009_coin.htm

3CRY 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.

Another CRY SSN member, Laura John, took on theimportant role as official coin tosser in 2004 at theWimbledon Men's Singles Final.

Interestingly this final was also between Roger Federerand Andy Roddick and, yes, Federer went on to win bothfinals!

History repeats

4 | CRY Surgery Supporters Network Autumn 09

About the CRY SSN

What we can do for you

How to become involved

It is estimated that one in 300 young people aged 35 andunder who undergo cardiac screening are found to have apotentially life-threatening condition that will require treat-ment. With an increasing number of young people nowbeing screened every year through CRY clinics and mobileunits, even more people are likely to need emotional supportand information to help them cope with their diagnoses.

The CRY Surgery Supporters Network (CRY SSN) wascreated in 2002 to offer support to young people (and theirfamilies) who have been diagnosed with a heart condition,and who are recovering from cardiac surgery or perhaps liv-ing with a pacemaker or ICD.

Members email each other regularly to share experiencesand help each other cope with important issues such as:

starting new schools, university or workmanaging sports and social activity living with an implant and being able to tell friends about their condition.

In 2010, CRY SSN meetings will be held on two weekendsin the North, Midlands and South, to enable members totake part in group counselling and talk to an expert cardiol-ogist in comfortable surroundings – a unique opportunity.

This is your newsletter. We need you to let us know aboutthe issues that matter to you and what you want to seecovered in these pages.

We could, for example, have a Questions and Answerssection to deal with important issues such as travellingadvice, getting back to sport, recovering from surgery, livingwith a pacemaker or ICD, etc. Tell us what you think.

And, of course, we would like to include your own storiesand photos. Please send these to us, along with yourcomments and feedback.

Network members can be contacted through the CRYoffice. They are happy to help any young person who hashad or may be undergoing implantation or ablation surgery,or those diagnosed with a cardiac condition who would justlike to link up with others with similar experiences to share.

To get started, you can email news and contributions to thenewsletter editor, Morag McLaren, at morag@c-r-y.org.uk

If you would like to join the CRY SSN or contact networkmembers, please email Maria Carter in the CRY office atmaria@c-r-y.org.uk

Your contributions and comments are greatly appreciated.

Joseph Tanner held a Dolly Parton Tribute Night last October as partof CRY’s Raising Awareness Week.

Bradley Farrow accepted the challenge of having all his hair shavedoff in front of a packed audience to raise funds for CRY.

Julie Mills and Caroline Byrne took part in the CRY Heart of Londonsponsored walk in July 2009.

www.c-r-y.org.uk/ssgroup.htmThe CRY SSN webpages

www.c-r-y.org.uk/living_with_condition.htmPersonal stories from young people living with rare heart conditions

www.c-r-y.org.uk/Implantable_Cardioverter_Defibrillators.htmUseful information about implantable cardioverter defibrillators (ICDs)

What you can do for us

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

I was diagnosed with long QT and given apacemaker which has now become mybest friend. I thought I’d never get used toit, but now I wouldn’t ever consider nothaving it. It’s a good conversation starter!”Rebekah Goddard

Brief news and useful links...