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Hope you all got lots of presents!

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Have a very Merry Christmas!

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Apps

Apps are the future. You can find an app to do almost anything nowadays so it was only a matter of time before people started inventing them for more serious reasons than aiming a bird at a load of pigs stacked up in a tower and seeing how many points can be earned, although I believe this to be a very valid use of an app! There are now apps out there that can help you manage your medication, appointments and help store your medical history all in one convenient place as well as providing convenient information. Here are some I looked into on the advice of Lindsay Kay, specialist cardiac nurse at Great Ormond Street Hospital.

·        DoseBox – This is a free app that you programme the name, form, dose and frequency of your medication into and then it will remind you throughout the day.  It is very easy to set up and does the job without complicating the issue. A good app to get you into the routine of taking your medication, or even just for your peace of mind so that you know you are not going to forget.

·       Wellnote – Another freebie - in my opinion this is the best app as you can programme your medical history, medication reminders, appointment times, monitor blood pressure and sugar levels, find medical services nearby and all sorts of other useful bits and bobs. And the best part is it is all password protected. Having your history in one app means if, for any reason, you have to go to a new GP or A and E you will have all the information needed at your fingertips which can save valuable time and stress. A brilliant app.

·        Drinks tracker- again free, this app is very useful if you are 18 and going off into the world of work or Uni. It helps you manage how much you are drinking, not just the number of glasses but the number of units you are consuming as well. As well as tracking your drinking throughout the evening it will tell you how many you have consumed that week and advise you on the lower alcohol by volume (ABV) options, which will ensure you don’t drink more than your body is able to handle.

Exercise apps – you may have heard the new government scheme trying to encourage young people to be active for 60 minutes every day. Exercise is very important for all young people and, although exercise needs to be tailored to suit your needs, it is still vital that you maintain a healthy lifestyle and take part in some form exercise every day. There are so many apps available now that monitor or offer guidance on exercise so have a browse and find one that suits your needs and helps to motivate you to get off your sofa and do something active. Lindsay says ‘the best way to keep fit is to find something you enjoy doing, exercise with a friend or do something fun.’  Just remember the ‘talk test’. 

For more information on what physical activities you can take part in call us at Little Hearts Matter 0121 455 8982.

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Anthony talks about his experience of Endocarditis

Anthony was born with a Coarctation of the Aorta, and had surgery at 7 months old to stabilise his condition. He was then put on beta blockers to lower his blood pressure so that his heart could heal after surgery. He went on to lead a relatively normal life, with only daily medication and check-ups at St Thomas’ hospital.

Studying at Canterbury College Anthony realised his passion for cooking and gained a level 3 NVQ in professional cooking and hospitality. He then went out to France to learn to prepare and cook French delicacies. After this training he went on to work at events in Wembley stadium. However, after three years of dealing with worrying low energy levels he decided he had to leave his job and take a break as he felt he had pushed himself too far.

He turned his mind to other pursuits but felt his energy levels lowering further. He told us; ‘It felt like my body was shutting down.’  He was forced to take sick leave and focus on his health as he felt more symptoms developing; night sweats, palpitations, shortness of breath and loss of appetite. His GP and doctors at the local hospital couldn’t work out what was wrong and six months later Anthony contacted the team at St Thomas’ who immediately recognised the symptoms of Endocarditus. He had surgery immediately after scans showed the infection has caused damage to his aorta and tricuspid valve and his condition was stabilised with a course of Benzyl penicillin and Gentamicin (forms of antibiotics) through an IV drip.

In total Anthony had to spend two months in St Thomas’. As he started to feel better the doctors began investigating the initial cause of the infection. He believes it entered his system after a tooth removal eight months previously.

Anthony is now fully recovered but told us ‘it was honestly the scariest thing I’ve ever been through.’ He is now working as a volunteer at The Somerville Foundation and the Children’s Heart Federation as he wants to help provide information and support for young people with congenital heart disease.

As Anthony has proven, if you feel something is wrong or you aren’t getting the correct help or information from your local health services it is important to contact your specialist team to tell them your concerns. They will be able to give you a more accurate idea of what is happening to your body.

If you have any concerns about Endocarditis, or would like more information please contact us at LHM on 01214558982 or info@lhm.org.uk

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'Put 'em up!'

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Nadine McGaffin - My Heart Journey

When asked would I share my story with you all, I struggled to think how I would put this journey into words but I hope that the words I write will be words of encouragement to you all.

On the 9^th September 1988, I was born in Belfast, to all I seemed the healthy, perfect baby girl and that was the case until 5 days later when concerns were raised by my mum about my lack of energy and my inability to cry. That evening I was transferred to the maternity unit attached to the Royal Victoria Hospital for Sick Children in Belfast. The following morning I was taken by the cardiologist on call to the children’s cardiac ward where they performed an echo and discovered that I suffered from a complex congenital heart condition known as hypo plastic right heart with transposition of the great vessels. Within hours of this discovery I received an emergency balloon septostomy, which was followed by open heart surgery the following morning. Six weeks later I left the hospital and remained at home with regular check up’s over the next few years.

Weeks after my 4^th birthday I went for a routine check-up, only this check-up would show that the hole between my two ventricles was beginning to close over so I was booked in the following week for a cardiac catheterization ahead of my fontan surgery that would now be brought forward due to me being in urgent need of it. In October 1992 I underwent my fontan procedure, an experience that I don’t remember in great detail as I was so young, but I do have a few memories like my endless glasses of Ribena at night from the nurses when I couldn’t sleep and becoming so used to the ward that I cried when the doctor said I could go home! I guess in many ways Clark clinic ward became like a home away from home at the time and in the years that followed.

After receiving my operation, I recovered well and was a very fortunate child in that I only really ever attended hospital for review appointments and medication monitoring.  I grew up and still live in a small town in Northern Ireland called Moira, where I attended the local primary school. It was such a small school at the time it just felt like family. While at primary school I took on as many of the activities as I could alongside the other children in my class. The only difference that I had from other children was that when going out to play I had my hat, scarf and gloves on to keep me extra warm and if it was too cold and my lips were blue, the teacher would make me stay inside. I always took part in sports day at school and was able to join clubs such as choir.

I guess when I began High School, life began to change slightly and the differences between myself and others in the class were more noticeable. I struggled with the weight of my school bag, so I was the only person in my first year of High School to have a locker. All my friends thought it was great, I didn’t!!! To me I suddenly felt different and I struggled with that. I also found that my ability to take part in PE was beginning to decrease in not being allowed to take part in hockey and other contact sports and eventually it reached the stage that I didn’t take part in PE at all and instead went to the library. On games day the teachers granted me an early pass and I left school at lunchtime that day. In the first few years I didn’t enjoy this noticeable difference from others in the year but as I got older I found that a half day in the week was a treat that no one else in the class would get and so I embraced it.

While at secondary school I had a number of inpatient stays in hospitals that meant that I missed some school but I always tried to get back to school as soon as possible. One example of this was when I had my teeth taken out and because of my condition I had to have this done in the hospital. Despite the fact I’d had the roof of my mouth cut open and my cheek bone broken to get the teeth out I still went to school the next day. I loved my school days and I was blessed to have such a family-like school and teachers who would have gone out of their way to ensure that I was cared for and anything I needed they would have provided for me. This support and encouragement allowed me, despite my complex condition, to go on to achieve 9 GCSEs, 4 As Levels and 3 A levels. School were fantastic in aiding me through my exams with the support I needed in relation to my heart. From extra time in my exams if necessary to a seat at the back of the room so I could slip out to the toilet whenever I needed to… diuretics in the morning made exams a nightmare at times!!!

Alongside school I was able to join after school clubs like choir, band and Christian Union and outside school I even found the energy to join the local Brownies and then Guides, where I was best Brownie 3 years in a row for the best attendance. Through Brownies I also had the chance to go on pack holidays with the girls and much more…The only thing I had to remember that the other girls didn’t was I had to take my tablets!! Not always an easy task when you’re having fun!!!

Throughout my teenage years I did the same amount of activity as my friends and although at times I tired easier I did my very best to keep up.  I believe that it is important your friends know about your condition. My friends always did and were brilliant at looking out for me and helping me if I ever needed it.

When I was 18 years of age, I became a volunteer at the local Church youth centre that I attended in my early teens and this sparked my love for youth work, a passion that I have continued on to this day. Through my role as a youth worker I have been on outdoor adventure weeks, zip lined over lakes, completed high rope courses, caved and much more in the world of outdoors. It allowed me to experience things that normally I would have worried about doing because of my heart condition. My love of youth work has opened doors for me to become a guide leader, setup up programmes for girls, run summer schemes and even taken me to London in pursuit of my dream to become a fully qualified youth worker!! 

As a child you know you have something wrong with your heart, as a young adult you come to fully understand what that something is. I am approaching my 25^th birthday in September and I think the last 5 years have been the hardest for me in terms of my condition and the challenges I have faced but what I have achieved has also been incredible.

At 20 years of age I went off to the big world of University, I went to Queens University Belfast…not wanting to venture too far from home. I embraced student life for all it was worth while holding down 2 part time jobs at home at the weekend as a youth worker and shop assistant. Trying to hold all this together very quickly brought me difficulties and 2 weeks after my 21^st birthday I ended up in hospital, not able to breath properly, exhausted, sore and with chest pains. I had never experienced any problems with my heart since my surgery at 4 and now all of a sudden here I was in hospital and very sick. In the 2 weeks that I was there I underwent many different tests, a catheter and a MRI. I had developed an infection that had never cleared. It had become a virus and had multiplied my cardiac symptoms. With a few months of rest and learning to pace my life better I would be back on my feet again. While in hospital that time I made a new friend. He too was a young adult with half a heart and it was amazing. For the first time ever I had met someone who totally understood what I was going through and how I felt. We laughed together, moaned together and gave each other invaluable support and advice. Having never taken warfarin before this transition was difficult for me and he was able to help me and give me great advice when my blood failed to be in range! Even after that hospital stay we remained great friends. After leaving hospital I was forced to cut my university hours to part time to enable me to fully recover. It was great in the months that followed but a year later when I was back on my feet it was frustrating. Rather than moan about it I saw it as an opportunity to try new things and so I became a volunteer classroom assistant one day a week and then began to volunteer with Children’s Heartbeat Trust, the charity in Northern Ireland that works with children with heart conditions. Also that year I began training in the gym and completed my first 9 mile marathon walk in Belfast. The following year I decided to embark on a new adventure and I went to London to begin a youth work degree, I studied in central London 2 days a week and worked as a youth worker the remainder of the week in Surbiton, Co.Surrey. I loved my London life and the fast paced life that I had acquired but very quickly learnt that my heart didn’t and 8 months later I returned home to Northern Ireland. This time I needed new medication and a lot of rest to make my heart better and so I rested up and took life easy. This experience showed me that although I think I am like everyone else, at times I’m not but that’s ok, because although I came home early the achievement of doing it at all was amazing. Since coming home I have had a number of inpatient stays, 3 in total to get my medication sorted and I am happy to say we have finally got it sorted! Each visit I embrace and count as a few days off from life! Every experience makes you that little bit stronger. Although I have had a number of inpatient visits in the last year, it has also been a year of great achievements. My recent catheter showed no change in my heart since my fontan 20 years ago, I returned to my studies at Queens University Belfast and graduated last month with a BA Hons in English and Theology, I completed my second 9 mile marathon walk, was heavily involved in the campaign to retain heart surgery for children in Northern Ireland, through sharing my journey in Parliament buildings, undertook the role of leader in charge in my Guide troop, became an employed youth worker in the evenings and just last week I got my first ever full time office job.

Also as this goes to print I will have undertaken my first ever half marathon walk as well!!!

I really want to leave you with some words of encouragement, I may have half a functioning heart but I do not have half a life. I never let my condition discourage me from attempting my dreams, sometimes it doesn’t work out but I give it a go.  If I could give two pieces of advice they would be ask questions…no matter how stupid you think it sounds ask it. I ask the stupidest questions at times but the doctor and nurse will always listen and answer the question and through those questions I understand so much better my condition and the life I can have with it. Secondly if you ever get the opportunity to meet others with half a heart, do it. A friendship like that is invaluable and so special, we all have our own individual journey but we can support and encourage each other in that journey.

Nadine McGaffin

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Scottish Parliament

Suzie would like to say thank you to the Scottish Heart Disease and Stroke Cross party Group for inviting her to attend their meeting last night. The aim of the meeting was to discuss the care pathway for children and adults with Congenital Heart Disease. There were two excellent presentations.

Liza Morton talked about her personal experience of living with a congenital condition and her need to raise the profile of care, she has orchestrated a petition to improve 24/7 access to expertise for Adults with Congenital Heart Disease.

Dr Hamish Walker Clinical Lead, Scottish Congenital Cardiac Network gave a very interesting talk on the building of the Scottish Network of Care and the results of a patient survey. Suzie has asked Dr Walker if he would send us his talk so that we can make it available to all of our members. The talk clearly sets out how important it is to listen to patients as their identified needs are not always the same as the professionals.

They both talked about adopting the adult standards of care as their bench mark to measure how the service is improving.

Suzie Says “ As the debate about networks of care continues in England it was very interesting to hear how Scotland, who reconfigured their surgical services a long time ago, have moved forward with joined up services very positively. Let’s hope that following the current review in England we are able to work to build the same regionally based network service”

Suzie had an opportunity to meet up with The Scottish Somerville Foundation team and the Scottish BHF team as well as meeting up with one of LHM’s own members who had attended to gain a greater understanding of the future service available for her child.

We will continue to work to gain a greater understanding of the Scottish network.

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Anticoagulation

Many young people with half a working heart are prescribed an anticoagulant, a medicine that slows the bloods ability to clot, to help ensure that their blood moves smoothly around the body. The medication used can vary but it is very helpful if young people, parents, carers and teachers understand what being on anticoagulation means to everyday life. If you would like to know more about anticoagulation, you can download a copy from our information publications.
Remember that Little Hearts Matter members can ask for a hard copy for free and remember we are always available if you have questions, email us at info@lhm.org.uk or call on 01214558982. 

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Oli's Transplant Story in Pictures

Oli received his new heart in August 2013, and he's doing very well. Here you can see him being flown to hospital in a private jet, post surgery, and looking very mischievous a few weeks later. 

If you would like to find out more about the transplant process visit www.organdonation.nhs.uk or if you have any questions contact a member of the LHM team on 01214558982.

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London to Surrey 100 Bike ride 2013

This year we had 9 cyclists giving up their Sunday and cycling 100 miles to raise money for Little Hearts Matter. They all did amazing well with some very impressive times. We are still waiting to find out the total raised but have a look at this fantastic video of this years team and what the event involves. Perhaps you know someone that might be interested in taking part next year so pass it on.

http://youtu.be/UX8nihS8l_o

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Summer fundraising idea - 24 hours of gaming!

Hi my name is Charlie Hylands, I’m 15 years old and have HLHS. I am writing to tell you about my plans for a 24 hour Game-a-thon to raise money for Little Heart Matters. My friend Josh Bradford and I are avid gamers spending quite a bit of time (to say the least)  on the Xbox!  Recently, at school we began talking about how cool it would be to play the Xbox for 24 hours straight and that we might be able to raise money for a charity. Josh made the suggestion of donating to Little Heart Matters and that's were it all began. There was a lot of interest from students and teachers at my school (The Eastbourne Academy) and very quickly we had lots of sponsors. The event will take place on Tuesday 6^th August at 10.00am, to date there are thirteen people joining the 24 hour gaming session which will include all different forms of gaming from Xbox, PS3  and PC gaming. We are planning to record the game-a-thon non-stop using Josh’s laptop and also record blog updates with my camera which I will then edit together and post on you tube. Josh and I have designed a sponsorship form and to date we have raised approximately £125, we hope that all those involved will also collect some sponsorship which will add to the overall amount raised in the end. 

If you would like to sponsor Charlie or would like some ideas of how you can get involved with fundraising this summer contact LHM (info@lhm.org.uk / -01214558982)

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Have fun on your summer holidays!

Jamie is one of the oldest young adults with HLHS in England

Suzie has just been sent this amazing photo of Jamie and his lovely sisters Emily and Olivia with their good friend Louise. Jamie is 22 and one of the oldest young adults with HLHS in England. It is great to see him doing so well. Suzie is showing her age by admitting that she was Jamie's liaison sister when he had his first operations in Birmingham. We hope to see Jamie and his family at our 20th Anniversary Open Day in March. We wish them all a great summer and thank you for the brilliant photo.

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Misunderstood Spider!

Summer Theme Park Trips: Do or Don't??

THE LURE OF THE THEME PARK - LITTLE HEARTS MATTER DISCUSSES THE RISK FOR YOUNG ADULTS WITH SINGLE VENTRICLE HEART DISEASE.

Now that the schools have broken up many of you will be off on holiday, some of you will be visiting theme parks. The LHM team are often asked if children or young adults can go on the rides, especially ones that say you shouldn't go on if you have a heart condition. As always it is very important that you ask your cardiac team what their advice for your specific condition might be but for a general overview here follows discussions with cardiologists and surgeons who have raised a couple of reasons why the rides might create an added risk for a child or young adult with only one working heart pump.
*What is Adrenaline – Adrenaline is a hormone produced by the adrenal glands during high stress or exciting situations. This powerful hormone is part of the human body's acute stress response system, also called the "fight or flight" response. It works by stimulating the heart rate, contracting blood vessels, and dilating air passages, all of which work to increase blood flow to the muscles and oxygen to the lungs.

·     The rise in adrenaline* (see below) during a scary ride makes the heart work much harder and can, even in healthy heart children, cause the heart rhythm to fluctuate. Anyone who already has a heart condition will be at a higher risk of developing arrhythmias especially as they get older.

Anyone who has undergone a Fontan procedure and who relies on the redirection of blood to the lungs may find that the rotational rides create a G force that will affect their  circulation, even if it is only for short periods of time. This may leave them breathless and cyanosed (blue).

Doctors are keen to point out that it is up to each family and young person to decide which individual rides may pose a risk but in general the rides which are scary, go upside down or very fast are usually the rides with the greatest cardiac risk.

(Courtesy of Suzie Hutchinson)

Remember... always ask for advice from your cardiologist.
LHM are here throughout the holidays if you need any advice. Call 01214558982.

Keep updated on Safe and Sustainable via Suzie

On Monday Suzie represented the LHM members at a meeting where the new Standards of Congenital Cardiac Services were being reviewed and brought into line with the newly drafted Adult Standards. 

Although there have been concerns raised about the Safe and Sustainable process every team in the Country agreed that the newly drawn up Standards of Service were an essential way to ensure that every child in the country would have access to a high standard of treatment and care. 

LHM provides one of two user voices within a team of doctors and nurses.  This is a very big piece of work and an essential part of the future services whatever the new reviews final outcome. 

The Standards are not linked to any one unit but set out what any unit will need to provide in the future to offer a gold standard service. LHM’s comments are driven by our members comments on their vision for a future service. Follow the link if you wish to revisit your priorities of care. Safe and Sustainable

If you have any further ideas, concerns or services comments please feel free to email them to the LHM TEAM (info@lhm.org.uk) so that we can include them in further Standards work.

Your Charity needs YOU!

Did you know next year is Little Hearts Matter's 20th Birthday! Yep, that's right, the team at LHM have been providing services for young people with Single Ventricle Heart Disease since 1994! Back at headquarters we are very excited and are busy coming up with all sorts of exciting things for the Charity to do next year.

WHERE YOU COME IN....

We know you all have lots of time now you are broken up from school so we want you to get your thinking caps on and come up with ways we can CELEBRATE, raise AWARENESS of children and young adults with SVHD and FUNDRAISE - for money much needed for LHM to keep providing you with the services we do already and for new ones in the future.

Email any ideas, little or large, to info@lhm.org.uk - look forward to hearing from you!

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Doggy Dinner... Yum! Looks good!

Dissecting an Ox Heart at Our Last Event

You can learn a lot about a regular human heart by looking at the hearts of animals (you can get them at your local butchers if you feel like giving it a go!). Here some of our young members are exploring an Ox heart at our last event!

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Just a little something to cheer up your day!

Safe and Sustainable

Would you like to be kept updated with the developments over the safe and sustainable plans?

Keep an eye on this link on our website.

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Misunderstood Spider!

A Big Hello to Everyone!

Hi everyone, my name is Olivia!

Jon is saying a sad goodbye to LHM and going off to start a new chapter of his life, teaching!

I will be taking over the position of Youth Project Development officer for the next six months. There will be lots more information about me coming out in the July youth newsletter.

I have lots and lots of ideas of how we can work together to build the youth services and am very eager to start.

I really want to hear from you if you have any ideas (big or small) of things the Charity could be doing for you guys so please contact me either via the Facebook page or email me at olivia@lhm.org.uk

Looking forward to hearing from you!

Adult 'Norwood' patient visits ECHO

This article was written by Jo Wilson, who is the Chief Executive of ECHO (the Evelina Children's Heart Organisation), a charity that looks after heart families treated at the Evelina Children's Hospital in London. You can go to ECHO's website by clicking here.

On 28th May my daughter Cissy and I were really lucky to meet a young man called Tory Jenkins. Tory is 25 years old and is one of the oldest surviving Norwood patients in the world.

In fact, Tory, who is American and lives in Colorado, had his surgery performed by the famous Dr Norwood who developed the Norwood procedure in the early 1980s.

The Norwood procedure is usually performed just after birth. It allows the right side of the heart to do all of the pumping. The procedure was first performed successfully in 1981.

Tory is the nephew of the ward clerk on the Cardiac Ward at the Evelina, and she had told him all about the work ECHO does at the hospital, so Tory was keen to be introduced to us and hear more about us, so we arranged to meet up at the Evelina. Tim Emsley, ECHO’s new Youth Development Officer also came along and was inspired to hear about Tory’s life and the challenges he’d faced as a teenager.

Left to right: Cissy, Tory, and Jo Wilson, Boss of ECHO (and Cissy!)

Tory is a wonderful, caring young man who has led life to the full, taking part in sport and lots of other activities. He is tall and fit and (I hate to say this – it’s such a cliché!) you would never know there was anything wrong with him from looking at him! He is engaged to be married, moving into his own place with his fiancé and hoping to start a family of his own. Interestingly, Tory told us that there was not much support available for heart families in the USA and that his dream would be to set up a support group like ECHO or Little Hearts Matter.

This video from the Children's Hospital of Philadelphia gives an idea of what the surgeon does during a Norwood procedure.

He also said that lots of families struggle to pay for their child’s treatment and that made me thankful that Cissy was treated here in Britain under the NHS! I thought you might like to see a couple of photos of Tory with his family.

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Actual size blue whale heart!

This is pretty cool, a scale model of a blue whale heart...

Here's some information about the heart from the wonderful wikipedia:

Due to its large size, several organs of the blue whale are the largest in the animal kingdom. A blue whale's tongue weighs around 2.7 metric tons (3.0 short tons) and, when fully expanded, its mouth is large enough to hold up to 90 metric tons (99 short tons) of food and water. Despite the size of its mouth, the dimensions of its throat are such that a blue whale cannot swallow an object wider than a beach ball. Its heart weighs 600 kilograms (1,300 lb) and is the largest known in any animal. A blue whale's thoracic aorta is estimated to be 23 centimetres (9.1 in) in diameter. During the first seven months of its life, a blue whale calf drinks approximately 400 litres (110 US gal) of milk every day. Blue whale calves gain weight quickly, as much as 90 kilograms (200 lb) every 24 hours. Even at birth, they weigh up to 2,700 kilograms (6,000 lb)—the same as a fully grown hippopotamus. Blue whales have relatively small brains, only about 6.92 kilograms (15.26 lb) , about 0.007% of its body weight.

Wanted: Teenager to review our sport booklet.

Hey all. As you know, LHM writes a whole bunch of useful leaflets about heart conditions. We've just finished writing one about sport and exercise, but we need a young person (under 25) with a heart condition to have a look at it for us. This is because we have the Information Standard, which shows that the stuff that we write is accurate. So if you could help us out, we'll love you forever.

In the meantime, here are 9 hilariously distressing letters from children, carefully stolen from another blog.
Jon