Newsletter Issue 9 Spring 2013
News and information for previously fit and healthy young people living with cardiac conditions
CRY Parliamentary Reception Wednesday 28 November 2012 As part of CRY Awareness Week, CRY hosted its annual Parliamentary Reception in the Terrace Marquee in the Palace of Westminster. 44 MPs attended the event and Guest of Honour Andrew TriggsHodge MBE – Olympic Gold Medallist at London 2012 in the men’s coxless four rowing - brought his Gold Medal for everyone to see. Other guests at the event were CRY families, Bereavement Supporters and Representatives; CRY myheart Network members; CRY Patrons Rob Andrew MBE, Jeremy Bates, Simon Halliday, Bill Neely, Phil Packer MBE, Andy Scott and Matt Wells; medical professionals; representatives from sporting organisations; CRY Trustees; CRY Research Fellows; CRY staff, and many others. CRY’s Parliamentary Reception aims to raise awareness of heart conditions in young people in Westminster. To help achieve this, CRY invites supporters of the charity to attend and share their stories with MPs. CRY myheart network members have an important role to play in awareness raising at the event. The Reception received extremely positive feedback from those who attended, with many MPs and other guests commenting on what a good evening it had been.
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P2 Genetic Disorders UK grant Your fundraising P3 Your story P4 About myheart
The event was a powerful reminder of CRY’s various services and initiatives, and the continued importance of CRY’s work. Laura Lees was one of the myheart members invited to the reception in 2012, this is her experience: “I was excited to be invited to the parliamentary reception and looked forward to meeting more members of CRY and the charity’s supporters. I met up with my local MP and lots of other people who are really dedicated to CRY. I enjoyed chatting to many people including Andrew Triggs-Hodge, and holding his gold medal! All the people there really emphasised to everyone that if you have a heart condition and you are young, you are not alone, and everyone involved is working hard to promote the work CRY does to get young people monitored and diagnosed, to save young lives.”
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Genetic Disorders UK grant The charity Genetic Disorders UK provides advice and support for individuals and families affected by genetic disorders. Each year Genetic Disorders UK offers grants to a range of charities and support groups who care for children affected by genetic disorders. CRY’s myheart network is delighted to have been awarded a grant from the 2013 Grant Programme. The project the grant will fund is focused on raising awareness of CRY’s myheart group and the services offered by CRY. Through meetings with cardiology departments in hospitals around the country, we aim to encourage cardiologists and cardiac nurses to inform their patients about the additional support they can receive through CRY. These meetings will provide an opportunity to discuss and answer any questions the cardiology teams may have and provide further information they require to confidently advise their patients about our services. The aim of this project is to provide young people living with cardiac conditions with information about support as early in their diagnosis as possible, providing them with a place they can meet other young
people diagnosed with cardiac conditions and share their experiences. In the lead up to Genetic Disorders UK’s Jeans for Genes day, which will be taking place on Friday 20 September 2013, several members of the myheart group will be featured in the media to raise awareness of genetic disorders and the different organisations that Genetic Disorders UK support. You will also be able to find profiles on each of the members involved on the Genetic Disorders UK website. If you would like more information about Genetic Disorders UK or Jeans for Genes Day this can be found at www.geneticdisordersuk.org. This project will be taking place throughout 2014. If you have a contact at your local hospital such as your cardiologist or cardiac nurse, who would be happy for us to approach them, please send us their name, department and a contact number and we would be pleased to contact them and arrange a visit to meet with their department.
Your fundraising Chris Smith held a curry night on 21 October 2012 and raised £724.50. Chris said: “We held our very popular curry night at the Kashti Indian Restaurant, a huge great big thank you to the owner Khaled for his hospitality and great food. Also thanks to: Andrew & Angela Bradshaw - for their generous donations to our auction and raffle. Penwortham Leisure Centre - for raffle donation. West View Leisure Centre - for raffle donation. Chiquito Mexican Restaurant - for raffle donation. Vue Cinema - for raffle donation. Virgin Active - for raffle donation. Eloise at Fleur Boutique - for gift wrapping. Mr Slater at Slaters Scuba Centre - for auction prize. Geanette Brown - for helping collect raffle prizes. A good night was had by all!” 2
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The first CRY Great Cake Bake took place on Friday 30 November 2012, creating a headline fundraising event for Raising Awareness Week. We would like to thank everybody who took part in the CRY Great Cake Bake and for helping to make the event such a success. Money is still coming in but we are delighted to say that we have raised over £19,000 so far. We had almost 150 people sign up for CRY Great Cake Bake information packs and we are really pleased that we have had such a positive response to the idea. The HEARTFELT Group, Preston, (six bereaved families and Chris Smith who has been saved by screening) joined together to raise awareness for CRY. They took part in the CRY Great Cake Bake 2012 and raised £376.50. The money raised will be going to CRY’s Research Fund.
Cardiac Risk in the Young
Your story I had my operation in November 2012, the procedure
Mallory Brand - Wolff Parkinson White syndrome took quite a lot longer than the doctors anticipated Meat Loaf. That was the first fact that stuck in my head when I began my research into WolffParkinson-White after being diagnosed. Meat Loaf was a sufferer of WPW, and I thought if the bat out of hell can deal with it, then so can I! I was diagnosed after collapsing on a plane to Boston for a work trip in July 2012. I had experienced palpitations on and off all my life, but after being told at a young age that I had a fast/irregular heartbeat, I just accepted that the palpitations were part of that. They were very sporadic, sometimes they would come on during exercise, other times while I was sitting at my desk working. Some of the time they lasted for only a minute, other times for hours. They were never pleasant but I had always just got along with them and assumed they were “normal”. It was mega scary being in a strange country, in a weird medical centre, alone, being told that you have a heart condition but I was fed some divine cocktails by my work colleagues afterwards and flown back early so that I could begin to deal with the issue. After being referred to my cardiologist at St George’s Hospital in Tooting, it was decided that instead of being put on drugs to attempt to regulate my heart beat, I would be put straight onto a waiting list for an ablation procedure. In the mean time I had quite a few blood tests, further ECGs, a 24-hour heart monitor and an echocardiogram. These were all to make sure there were no further issues affecting my heart. Before my operation, CRY put me in touch with one of their myheart members so I could get more of an insight into the procedure itself and how it would affect me afterwards. This was SO incredibly useful, and reassuring to know that I was worrying about the same stuff they were (i.e. will my groin have a mega ugly scar afterwards. Luckily it just looks like a freckle Cake baked for Mallory by work colleagues just now!). before her operation
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as the anomaly was in a more dangerous place than they had anticipated, so I was on the table for 4 hours instead of 2. There’s no sugar coating the procedure, it’s really not nice, but the nurses and doctors were lovely and didn’t mind me making inappropriate jokes and swearing at opportune times. I was on a day ward with a lot of other people having similar procedures to me, but all of them were a lot older (I think the next youngest person was in her early 50s!) which felt a bit weird. Luckily, I was allowed home at the end of the day. Recovering was harder than I thought it would be. I assumed that because I would be awake for the procedure and out the same day that recovering would be quick and easy - not the case... Although the wound itself made walking and sitting painful for the first week, it was more the irregular beats and tightness in the chest that I found really difficult to deal with, partly as that wasn’t something I’d been told I would experience post-op. The specialist nurse at the hospital advised that I’d need 2 weeks off work to recover, but I actually needed 3 in the end. My boyfriend very patiently put up with me needing help in and out the shower, sleeping with pillows in weird places to get comfortable, and not being able to walk too far without getting out of breath. In February this year, I had my 3 month check with the cardiologist to see if the condition had come back but thankfully I got the all clear. It sounds ridiculous but I didn’t realise how relieved I would feel once they told me! Obviously, I made sure I celebrated with plenty of red wine in the evening. I did some proper exercise for the first time since my operation recently. It was strange as I didn’t feel the usual racing heartbeat that I used to, I think that means I have no excuse not to exercise now. For anyone who has just been diagnosed or who is thinking that their heartbeat is a bit dodgy, please do get checked out - I wish I had had it done sooner and not been at risk for my entire life. “This article is in memory of my super cool friend Rob Andall who died of an undiagnosed heart condition aged 29 on 31 March 2012.” Mallory xx. Spring 2013
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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. With the increase in awareness and more young people being diagnosed with cardiac conditions, even more people are likely to need emotional support and information to help them cope with their diagnosis.
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. Upcoming Meetings: Midlands - Sunday 23 June 2013 North England - Sunday 14 July 2013 South East - Sunday 28 July 2013 If you would like to join myheart and receive meeting details, please email the myheart Coordinator at myheart@c-r-y.org.uk Or check out the myheart facebook page.
Useful links... www.myheart.org.uk
Parents of myheart group counselling 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, 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. 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
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 a trained 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 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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Cardiac Risk in the Young