Newsletter Issue 7 Summer 2012 News and information for previously fit and healthy young people living with cardiac conditions
P2 Your news P3 Up the Pace
Adam Payne - Men’s National Lifesaving Champion 2011 Five years ago Adam Payne, a member of the City of Rochester Swimming and Lifeguard Club, had to give up lifesaving after being diagnosed with hypertrophic cardiomyopathy, a potentially fatal hereditary heart condition, when his uncle died suddenly at the age of 30. He was fitted with an ICD (implantable cardioverter defibrillator) in January of 2009. Adam found out about CRY by reading a poster on the wall of his hospital which gave information. This was at a time when the only thing in his life was complete confusion. Adam’s mum contacted CRY for advice and then CRY became a contact point for Adam’s questions and further support. He wanted to share his experiences in the hope that it may help someone else like him.
P4 About myheart
the results were announced. Adam had won the Rope Throw and the Dry Side Incident and was third in the Aquatic Incident. Then it was the overall result. Adam’s dream had come true; he had reached the pinnacle of Men’s Lifesaving by winning and becoming the Men’s National Lifesaving Champion 2011. He had proved to himself that life does go on and that you can find a way forward even when something has a major effect on your life.
Adam was out of the water for about eight months before he began to join in training again at the pace of a rookie. However, under the close supervision of The London Heart Hospital, the club’s coach, Paul Paulding, and members of the Kent Branch, Adam began to compete and started winning again at club and county level - hoping to eventually reach his goal at National Level. But, he still doubted himself and needed at times to be told not to give up. Qualifying through each round of the National Lifesaving Championships in 2011, although emotional, gave him the encouragement to continue as he recognised this might be his last chance to compete at this level. Each check up at the hospital risked him being told he could never compete again. Eventually, the weekend of the National Lifesaving Championships arrived and the competition began. Clear focus took over. Once the competition was finished Summer 2012
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Your news North of England meeting Sarah Bond, Brugada syndrome I attended the myheart meeting feeling a little unsure, however, how more wrong could I have been. I met young people who are going through what I am and understand my condition. I met some great friends - it was more like talking to your friends than a meeting - in a very relaxed environment, as well as it being very informative. I truly felt that it was all about me and not my heart condition. All I can say is if you are thinking of attending you are half way there. Come in and talk with people the same age that understand and are experiencing the same as you, it will be worth it.
Left to right: Lucy Challis, Sarah Bond and Joseph Tanner
Midlands meeting Jodie Pearson, long QT 1 I decided to attend the myheart meeting, along with my sister who also has long QT 1, because I wanted to find out more about long QT as there doesn’t seem to be much knowledge or awareness of this condition. I also wanted to meet other people with heart conditions and find out their feelings and how they deal with their conditions. I found the myheart meeting very interesting and it made
Fundraising Chris Smith, Wolff Parkinson White My mum and I raised £657 through holding a raffle. There were many prizes, some being generously donated by; West View Leisure Centre; Andrew Wallbank Limited; Ocean Palace Chinese Restaurant, Blackpool; and friends and family. A special thanks goes to Fleur Boutique, Penwortham, where Elise has gift wrapped many prizes over the years which make them stand out. Billy Worswick won the first prize of £100 Love2Shop Vouchers, which I presented.
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my sister and I feel that we weren’t alone. It was lovely meeting the other members and listening to their different experiences. We all got on very well and felt comfortable to speak out and ask questions in front of one another. I would like to thank Karla Griffith and all the members who attended the Birmingham myheart meeting for not judging us and making us feel welcome and comfortable about telling our stories.
Midlands meeting Adam Lovatt, ventricular tachycardia I decided to go to the myheart meeting after reading an article about the footballer Fabrice Muamba which included information for the myheart website. As I had experienced a similar episode to Fabrice I contacted the myheart coordinator and found out they were holding a meeting locally. I was eager to go along as it had only been a year since I had my defibrillator fitted and I really wanted to find out that I am not the only person going through abnormal heart rhythm problems. It was great to meet other people who had, or were experiencing, similar problems to me. I found the meeting really helpful and would advise other people who have the same condition to go - it could really benefit you.
Left to right: Emma Jackson, Hayley Homer, Jodie Pearson, Ema van Souwe, Matt Beard, Adam Lovatt and Neil Stevens
I was also invited to the Preston District Scouts AGM to accept two cheques for CRY. I was asked to say a few words about CRY and my own personal experience of being diagnosed with a heart condition. The donation is from a collection from the St. George’s Day Parade in the town centre, then at the Guild Hall, as CRY was the nominated charity.
Left to right: District Commissioner Judith Jamieson, District Chairman Joe Singleton JP, myself Chris Smith & County Commissioner Carl Hankinson. Cardiac Risk in the Young
Up the Pace Bristol ‘Up the Pace’ Education Day ‘Up the Pace’ is an annual education day held by Bristol Children’s Hospital for their patients with a pacemaker or ICD, and their families. Patients ranging from a few months old to 18 years old have the opportunity to attend workshops covering areas such as resuscitation and heart rhythms, as well as listen to a talk given by a young adult about their experience of growing up with a pacemaker or ICD. Different groups including charities and pacemaker/ICD companies are invited to hold stands so families can wander round taking leaflets and asking questions. Two of the myheart members, Laura Lees and Rebekah Goddard, went along to represent CRY and answer any questions people had about the myheart group. This is Rebekah’s account of the day: “It’s one thing dealing with your own heart condition, but nothing can prepare you for the worry that suddenly arises when you become a mother to a child with this potentially life threatening condition. It’s only now that I can see what my own parents were worried about. So when CRY asked me to help out with the ‘Up the Pace’ education day in Bristol, chatting to parents and children who are currently going through what I, myself have gone through in the past, I was more than happy to oblige. Both my youngest daughter, Jessica (aged 5 years old), and myself, have long QT syndrome. I have a pacemaker, and she has a ‘Reveal’ device implanted, which monitors her heart, until she is old enough to receive a permanent pacemaker. A good mix of people attended the day: babies, toddlers, youngsters and teens, and all with their families in tow. These families were so lucky, just having the opportunity to meet and chat to experts in their field, the cardiologists, the pacemaker and defibrillator manufacturers, as well as the various charities, which offer such incredible comfort, help and support to people who desperately need it. It was a great opportunity to be able to chat to several parents who were in similar positions to that of my family and me. I was able to share some of my own experiences, as well as lend an ear and listen to what each of them has had to cope with. There are some incredible people out there, who are dealing with so much on a daily basis, and just listening to how some of them were coping with their various situations was very Cardiac Risk in the Young
Left to right: Laura Lees and Rebekah Goddard
humbling. It was strange for me as I suddenly realised that I was able to relate to both the children/teens as well as the parents, as I have walked in both shoes. Those who did not want to talk were able to help themselves to leaflets, booklets, badges and bags - and by the end of the day they were almost all gone! Being able to represent CRY at such a day was a great experience. If only they had had this kind of event available to my family when I was diagnosed… it would have meant a lot less worrying! My only hope is that they can repeat this event again and again, and hopefully other hospitals all over the country will follow suit. Looking around the venue, and seeing the amount of people that such a day was helping, gave me a really tremendous feeling of hope. Hope that they now know that help is out there and they can maybe rest a little easier at night in the knowledge that they are definitely not alone.” Read Rebekah’s story at www.myheart.org.uk/rebekah-goddard
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About What we can do for you It is estimated that 1 in 300 young people aged 35 and under who undergo cardiac screening are found to have a potentially life-threatening cardiac 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 diagnosis.
We need your stories and news for future editions of the myheart Newsletter, please email to the newsletter editor, Mair Shepherd, at mair@c-r-y.org.uk
Get in touch myheart meetings are for those young people who have had or may be undergoing cardiac surgery, or those who have been diagnosed with a cardiac condition who would just like to link up with others with a similar experience to share. If you would like to join myheart and receive meeting details, please email the myheart Coordinator, Karla Griffith, at myheart@c-r-y.org.uk Or check out the myheart facebook page.
Useful links... www.myheart.org.uk
“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 myheart (previously the Surgery Supporters Network) was created to offer support to young people (and their families) who have been diagnosed with a heart condition, who are recovering from cardiac surgery or perhaps living with a pacemaker or ICD. Members meet up to socialise, take part in group counselling and talk to an expert cardiologist in comfortable surroundings.
How to get involved 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.
Parents of myheart group counselling CRY’s myheart group will now be holding parents group counselling sessions. This is for parents whose previously fit and healthy child has suddenly been diagnosed with a dangerous heart condition. The afternoon sessions will be facilitated by an experienced counsellor who is very experienced in working with families affected by dangerous heart conditions. The sessions are free to attend and will give the opportunity to meet other parents and discuss your experiences in an informal but supportive environment. The parents group counselling sessions are held in Birmingham, Leeds and just outside London. These sessions are independent of the myheart meetings for young people diagnosed with a heart condition. Parents can attend regardless of whether their child attends the myheart meeting. If you are interested in attending any of these events, or would like more information, please contact Karla Griffith, the myheart Coordinator, on 01737 363222 or myheart@c-r-y.org.uk. The Surgery Supporters Network is now called myheart. This change of name reflects that support is available to any previously fit and healthy young person (35 and under) who has suddenly been diagnosed with a heart condition. The change of name was inspired by the CRY Philips testmyheart tour.
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 E-mail: cry@c-r-y.org.uk web: www.c-r-y.org.uk 4
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