Feel Good Friday

A special Feel Good Friday today as one of our young members, Andrew (18, HLHS) has written a brilliant blog post for LHM about what it's like having half a heart. (As part of our Handmade Hearts series, LHM’s young members talk about life with half a heart. To learn more about Handmade Hearts, click here.)

"If there’s one thing that frustrates me about having a handmade heart, above the tiredness, above the fact that I can’t keep up in sports and above all the guinea pig stuff, is when I look at people who have a regular heart and I see them wasting their life away. Life is so short, and whether you have a handmade heart or not, live your life! Don’t waste your time worrying about what people may think or say about you, because every second spent worrying, is time that you can never get back."

Click here to read it in full.

meet@teenheart

The British Heart Foundation’s meet@teenheart programme offers 13-19 year olds in the UK who have heart conditions an opportunity to meet other young people like them, gain confidence, learn new skills and have fun.

They've got a great new events programme. These events will focus on providing young heart patients with increased confidence, communication and problem solving skills as well as building up their determination and resilience. Over the coming year they will be delivering three exciting one day events and a residential experience. The three one day events will run the same programme so you will only be eligible to attend the one closest to where you live :    

One day events...

· 13 August – Bristol -Register interest by 16 July

· 29 November – Manchester -Register interest by 1 October

· 21 February – Glasgow- Register interest by 4 January

Residential event...The Stunner is back for 2014!

· 21-22 August – Birmingham -Register interest by 16th July

You can register your interest now to join BHF for a creative adventure (combined with fun outdoor activity sessions on the residential). Register here: www.surveymonkey.com/s/BHFEvents

The events are totally free to attend and BHF will reimburse reasonable travel to and from the event.

If you have any questions, you can get in touch with Amanda Kenn: kenna@bhf.org.uk 

Hannah's Story

Hannah is one of our youth council members, as well as the first young trustee member with a heart condition for Little Hearts Matter. Here's a bit of her story:

When I was born, actually about 6 hours after, I was diagnosed with having Half a Heart. There is a list as long as your arm but I won't bore you.This is me at 15 months old, just after my first major open heart surgery. 

 

I was lucky that my array of conditions balanced my condition out for a lot longer than most children born with Half A Heart. But it was a very trying time for my mum and dad, and I'm really not sure how they got through the first few months to be honest. This is me at my second op when I was 9.

When we became members of Little Hearts Matter, everything became a lot more bearable and for the first time I met kids with the same condition as me and mum and dad could speak to parents with similar problems.

This charity has basically helped me become who I am today, yet many people are still not aware of Congenital Heart Disease and the life time effects.

Half a Heart, Not Half a Life!!!!

LHM Spring 2014 Newsletter

Little Hearts Matters's spring 2014 newsletter is now available here! It features an article explaining what an MRI scan involves, advice on the dreaded DLA, an article on Education and what schools need to know, family stories and lots more. Make sure to head to page 19 for the Youth News!

We Got Mail!

So I (Laura) always love to get mail (messages, pictures, jokes... anything!) from the young members of Little Hearts Matter because it really brightens up my day :) I always put a little note in the youth newsletter to ask people to get in touch because I love hearing from them. After the most recent newsletter came out, I had a great message and photo from one of our young members called Mia. This is what she had to say:

Hi, Laura! My name is Mia, and I have just got the LHM newsletter today, and I decided to write to you........and I can't ride a bike either!
Anyway, I was just writing to you about my Operation. I am the only person in my school who has half a heart, but my best friend understands me though. I am really lucky that I am still alive!!!! So thank you and everyone at LHM for Everything.
From,
Mia :-)  ♥

Those cupcakes look delicious! I wonder if I'll ever get cupcakes sent to me...

Heart Selfie

Some of our young members came up with the idea of doing a "heart selfie" (a selfie with a heart!) to raise awareness during Children's Heart Week last week, and were asking their friends to do the same.

Here's some pictures of people who got involved:

Feel Good Friday - Special Edition!

This Feel Good Friday is a little something different, to mark the fact that we're coming to the end of Children's Heart Week. We've collected some of the wonderful little hearts moments that our young members have shared about their heart journey! Rachel talks about her sister, Sophie, who has Hypoplastic Left Heart Syndrome (HLHS). Evie has HLHS too and talks about her life with the condition, and Carys who also has HLHS has shared some brilliant pictures of her heart journey.

Rachel's Little Hearts Moment

Sophie is my role model. Before she was born, Sophie was diagnosed with a very serious heart problem called Hypoplastic Left Heart Syndrome (what a mouthful!). In short, Sophie has half a heart. 
By the time Sophie went to school, she had completed three stages of open heart surgery. As she got older, she got stronger and today she seems just like everybody else- happy, bubbly and full of energy. 
But having half a heart has its struggles. Sophie is part of the first generation in the UK to survive- parents and families just like ours are faced with a unique set of challenges and an uncertain future.This is where Little Hearts Matter comes in. Little Hearts Matter is a UK run charity, and a gift to families like mine. They offer ongoing support, allow families to access the latest information, and give Sophie the opportunity to meet other children with her condition. Without them, we would be lost. 

Evie's Little Hearts Moment

When I was born, I was very ill and was diagnosed with a life-threatening heart condition called Hypoplastic Left Heart Syndrome. In other words, I only had and still have half a working heart. 
After three lots of open heart surgery before I was four, I began to grow like a normal baby and with the care and support of my brilliant Mum & Dad, I have been able to enjoy most things that children do as they grow up.
However, what has made it more bearable is the support, love and advice that Little Hearts Matter has provided me and my family.
Little Hearts Matter is a UK run charity, small yet perfectly formed, and offers ongoing support to families like my own, holds their hands as their children go through surgery and then begin to thrive, as well as provides all important information to help them make the best decisions. However, more importantly Little Hearts Matter has given me the opportunity to meet and become special friends with people facing the exact same challenges I face. Without them, I'd live in a very lonely place.

Carys's Little Hearts Moment

So, that's a few Little Hearts Moments that some of our young members have shared with us! Make sure to share your story and use #littleheartsmoment!

If you'd like to support Little Hearts Matter, you can donate by texting LHMO14 £2 (or the amount you wish to donate) to 70070.

Remember, half a heart - not half a life.

22 Year Old with HLHS Lives Life to the Full

Woman born with half of a heart lives every day to the fullest, unsure of tomorrow (Article from WCPO)

Doctors told Tri-State parents that their baby girl wouldn't live long because she was born with a heart defect. But 22 years later those doctors stand corrected.

Meghan Roswick lives with half of a heart due to a life-or-death decision her parents made more than two decades ago. "I was born with a congenital heart defect called hypo-plastic left heart syndrome," Roswick said. "Which means I was born with virtually half a heart."

Patty and Rick Roswick, Roswick's mom and dad, consulted the doctor when their daughter was born in danger. "We asked the doctor what he would do and he said honestly if it was his child, he would give her morphine and let her die," Patty Roswick said. The Roswicks found a new doctor who was willing to perform experimental surgery to reroute Meghan's blood circulation. The procedure would force the right side of her heart to do the work of the left. "First surgery I was 11 days old, second surgery at six months, third surgery at 13 months, then heart failure again and had surprise fourth surgery," Meghan Roswick said. 

From that point she began pushing the envelope every chance she got by taking up various sports. "I started gymnastics, and my mom was on the phone with the surgeon, saying, 'Is this good? She's ramming herself into the vault, falling really hard on the bars. Is this OK?'" Meghan Roswick said. "(The) surgeon said, 'Yep, it's fine. That's why we do this.'" Her adventures didn't stop with gymnastics. She's pushed herself to the next level ever since. "It gives me kind of a rush," Meghan Roswick said.

"We made a decision that we weren't going to limit her, nor say, 'Meghan, don't do that,'" Patty Roswick said. Roswick took up skateboarding three weeks ago. She skied over the winter. She has the symbol for adrenaline tattooed* on her neck. "I always just wanted to live, to feel adrenaline pumping through my veins, to prove those doctors wrong," Meghan Roswick said. "Who said I would never have a good quality of life?" Roswick makes each day a new adventure, but she's not in the clear yet. Within the next few days, she is scheduled to undergo tests to see if she needs more surgery. "It's really scary, especially getting older because you don't know," she said. "The oldest people with it (hypo-plastic left heart syndrome) are not much more than 10 years older than me, so sometimes I think to myself, I only have 10 more years."

Most of Meghan Roswick's time goes to things that don't make her worry. "The time we have on this planet is short," she said. "We never know when our time is up and I want to do as much as I can, jampack my life with a bunch of experiences and adventures."

You can keep up to date with what Meghan's doing via her Facebook page.

*There are things for you to consider when you have a single ventricle heart condition if you’re thinking about piercings and tattoos. All tattoos and piercings carry some risk and most cardiologists and health professionals recommend you avoid tattoos and piercing altogether. Any procedure which breaks the skin carries a risk of introducing bugs into the blood stream. These bugs can settle on the heart causing endocarditis. The most important thing to know is that good hygiene is vital. Keep the area clean with a skin disinfectant containing alcohol or chlorhexidine before and after the procedure, until the wound is healed.

Remember, the decision to get a piercing or tattoo is yours, and if you choose to proceed, this list will help you make the procedure as safe as possible:

• Visit a reputable place that follows rigorous hygiene guidelines

• Make sure pre-packed sterilised needles are used only once and then thrown away

• Ensure left over ink is thrown away

• If the piercing becomes red and sore, you should remove the ring/stud and seek medical attention

• If you need to remove the ring/stud because of infection, you should not replace it until the infection is completely cleared

Cardiac MRI Scans

Many children and young adults now undergo MRI scanning as one of their cardiac tests. At our Open Day on Saturday Simon McGuirk, a Radiologist, showed us a film that the Birmingham Children's Hospital team have created to explain a bit more about the test so that children and young people will worry less when they have their MRI appointment.

If you are looking for more information about going into hospital or an outpatient test visit your hospitals website, they may have films that will help you and your children prepare for your next visit.

Some Musings from Andrew...

One of our young members, Andrew has written this blog piece about the Open Day on Saturday, living with half a heart, and why you should smile if you have half a heart :) Oh, and something about guinea pigs...

Hey everyone! I'm Andrew and I have Hypoplastic Left Heart Syndrome (HLHS). It was lovely seeing lots of you at the Open Day and I'm sure you’ll agree that it was a great day! :)

I'm a people watcher. I'm not a massively sociable person. I’d happily have a conversation with someone, but also, I’d be just as content sitting in the corner in my own little world (Yay for being introverted!). And as I was sitting in the corner, watching on on the morning’s happenings I just loved how everyone was smiling and happy! I'm sure if you put 50 young people who didn't have heart conditions in a room together they wouldn't be as outgoing and chatty as we all were on Saturday, but because we have this common ‘thing’ that unites us, I feel like we’re all great friends without knowing much about the other person! I guess it just made me happy! :’) (cue emotional music...).

As much as Little Hearts Matter being around for 20 years is a long time and an amazing achievement, in the grand scheme of things, 20 years isn't that long. The surgery that many of us went through when we were born is still relatively new, so as I stand here, an 18 year old guy, I feel really old! When I was born, Dr Norwood, who came up with the Norwood procedure, (aptly named...) came over to the UK to perform the surgery on me and teach the medical team in London how to do the surgery, so I think I was the second survivor of HLHS from London because of Dr Norwood. That is a weird thought. What also is weird, is that I've never met Dr Norwood since, so I've never been able to meet, let alone say thank you (and give a big hug) to the guy who saved my life... But I guess that’s why doctors and nurses do an incredibly amazing, fantastic job. They save the lives of regular people like you and me everyday and don’t always get the recognition that they deserve.

I'm going to be honest and say that there are times when I go “man, having half a heart really sucks!” Being the one that’s left out at school, or not being able to go somewhere because I'm too tired or whatever it may be, I can’t deny that fact that there are times when I just wish I had a whole heart! There are also times when the thought about having half a heart really excites me! The relatively new surgery that we went through when we were born has now been perfected on us and is a fairly routine procedure in specialist cardiology centres and is saving lives daily! Because of you and what you've been through, lives are being saved! You are amazing! It’s not just the doctors and the nurses that are the unsung heroes. Because of what you've bravely been through all of your life, children now have the chance of life!! That’s the exciting bit!!  We are ground-breakers, not guinea pigs! You are special, unique and the best version of you that there will ever be, so don’t let anyone tell you that you’re not good enough!!

If that’s not a reason to smile, then nothing is! I'm sure that every smile at the open day brought hope to a family who are just about to go through what we've already come through. So when the going gets tough, just remember that what you've been through and whatever you go through in the rest of your life, is giving another child the chance to live.


Phew! That was deep and meaningful! So to lighten the mood, here’s a picture of a dancing kung-fu* guinea pig. Adios.

*Andrew emailed a dancing guinea pig... But Youth Leader Laura has a stupid laptop that didn't want to show the image and she couldn't find a dancing one but she did manage to find a kung-fu one so...

Merseyside Mum Wants Law Changed So Newborns Are Screened for Congenital Heart Defects

Vicky Hughes & daughter Ava aged 18 months old,who was born with half a heart

A Merseyside mum wants to see the law change so that all newborns are tested for congenital heart defects. Vicky Hughes’ 18-month-old daughter, Ava, was born with only half a working heart. Fortunately, the problem was detected during a 20-week pregnancy scan and Ava subsequently had life-saving surgery.

But Vicky and others affected by Congenital Heart Defects (CHD) want the government to make it law that all babies are given a “pulse oximeter” test which would help those whose heart problems are not seen during pregnancy. Pulse oximeters are non- invasive medical devices that check the level of oxygen in a patient’s bloodstream and sounds an alarm as soon as it detects the slightest unsafe change.

For the full story, click here.

What do you think? Are pulse oximeters something the NHS should provide?

Man Survives 25 Years with a Donor Heart

A man over in America has become one of the longest-surviving heart transplant recipients on record - in fact, he's lived as long with a donor heart as he had with his own. In reality, however, the new heart became his own the moment surgeons transplanted it inside his chest 25 years ago.

When Thomas Cook, 50, (probably not the same guy as the travel agent) arrived at the hospital for his annual check-up, the physicians, nurses and other staff involved in his care, as well as the mother of his heart donor, surprised him with 25 red heart-shaped balloons, a heart-shaped cake, plates of heart-shaped sugar cookies, and a heart made of crystal engraved with "25 years strong."

Want to read the amazing full story? Check it out here.

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

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

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.

Are iPads and Pacemakers Secret Enemies?

A teenager from America has exposed what she thinks is a dangerous flaw with the iPad...it can accidentally turn pacemakers off.

However, not all pacemakers are affected, and the iPad has to be rested directly on your chest for it to potentially affect your pacemaker. Also, not all pacemakers are affected - but it's not clear which are and which aren't. As always, then, this is something that you need to talk to your cardiac liaison nurse about.

The problem is that some pacemakers are programmed to turn off if they come into contact with a magnet, and the iPad uses 30 magnets to keep it's smart cover firmly in place. Whilst the magnets aren't strong enough to affect pacemakers if the iPad is further than 6 inches (or 15 cm) away from the body, on your lap or on a table, it can turn off some pacemakers if it is left on your chest.

So, if you have a pacemaker, you may want to be a bit careful about falling asleep with your iPad on your chest, at least until you've checked with your cardiac team.

The news story below blows the story out of proportion a bit ("This is a SENSATIONAL story") and there is no need to panic. But it's still pretty interesting and something that it's probably worth being aware of. What do you think?

Original story here.

The Heart and How it Beats

A few weeks ago LHM ran a workshop for the older members of Little Hearts Matter where they were able to learn more about their hearts and how they work. This would allow young people like me to be able to understand the doctors and nurses.
It was great to see everybody there, there were some old friends and some new faces. I’m not always able to come to the LHM open days and workshops as I live down in Kent and it’s a long way to come. So I was quite excited to be able to come and see everybody. Once we had all arrived we introduced ourselves to everyone and created a web of trust between the group with a ball of bright pink wool.

We then got down to business. Suzie took us through how a normal heart works. In order to understand how ours are different we need to make sure we understand how a healthy heart should be. Then the messy practical came in! There were four ox’s hearts all set up so we could look at how a real heart looks and identify things we talked about such as the valves and the four chambers of the heart.

After we cleared up from the practical we talked about how having half a heart affects us and why it matters, we looked at the surgery that the doctors do to help our hearts do the best job they can. We rounded things off with a game that Jon had invented called 9 square which I never quite got the hang of but it was fun.

After lunch we spoke about how the heart beats and the electrical activity in the heart. We looked at how artificial pacemakers are used to make sure the heart is beating at the right rate as sometimes the body’s natural pacemaker may be damaged due to our heart conditions. A few of us in the group have had to have artificial pacemakers including myself.

We then ended the session with some more 9 square before having tea and a chat with everyone talking about life with a heart condition and issues such as applying for university or certain courses as many of these things require a certain amount of UCAS points or hours in volunteering which we may find difficult to achieve due to our heart conditions.

I felt the workshop has given me more confidence in asking the doctors about my condition. It has also helped me to understand the answers. I recently had a pacemaker check up and my younger sister came along to see what it was all about. When the doctor was explaining the changes she had made to the settings for my pacemaker I felt I was more able to understand and explain to my sister what was going on.

Stuff you should know...

Hi everyone,

LHM is lucky because we have super intelligent teenagers who always talk to the charity about what we should be doing. They are complete experts, because they have lived (and are living) through their teenage years with a serious heart condition. That means that when something screws up, they can think about how it would have been better. They think about this stuff and get in touch with each other and LHM to see if together we can make life better for younger people.

Most recently, some of the teenagers that have made the move to adult hospitals (this is sometimes called 'transition'), got together and wrote a list of stuff that they think teenagers should know about their heart. The way that they looked at it, if parents and doctors and LHM talked to young people gradually over lots of years, it will make the whole move into adulthood smoother and easier, with no nasty shocks down the line.

So, here's their list. It's not just about what our Youth Council thinks though. If you disagree, or you think that maybe something should be added to the list, then just comment on this post or email us :)

Parents, if you're reading this, we'd love your thoughts as well!

Age 12
1. General information about our conditions. 2. Talk about high school exams (getting extra time etc.) 3. What to do in case of an emergency. 4. Learn our limits. 5. Know that transition will happen in a few years. 6. Learn the names of our tablets.

Age 13
1. Learn what each of our medication actually does.

Age 14
1. Learn the effects that drugs and alcohol can have on our bodies and hearts. 2. Start to talk about relationships. 3. Start to talk about transition in more detail.

Age 15
1. Be prepared for workload to increase massively with GCSEs 2. Talk about sex in detail, including how anything to do with our condition. 3. Talk about contraception, different options for girls. 4. Talk about problems with sex (for instance STIs) 5. Talk about realistic future careers and education options.

Age 16
1. Know everything that there is to know about transition and how it works 2. Talk about driving, whether you can learn early an if you can get motability. 3. Know fully how we can be affected by not keeping to our limits.

Age 17
1. Learn about becoming an adult. 2. Learn about what will be legal/illegal 3. If going to uni/college learn about our limits, and what support is available to us there. 4. More mature relationship information. 5. Learn about the implications of the condition and its effect.

Age 18
1. Should be a complete expert in your own condition. 2. Know all about career options.

So...what do you think? I think that we can continue to add to this list until we have a really complete guide of stuff that you should know. It could become a bit of a checklist of stuff to talk about with your parents. Thoughts in comments please!

How the heart works...

The internet changed everything when it came to publishing. It's now easier than ever to share your thoughts with hundreds, thousands or even millions of people.

This also makes sharing information really easy, which can be both a good thing and a bad thing. Unfortunately, for every great, accurate article out there, someone has written a load of trash that just doesn't make sense, is outdated, or completely incorrect. All of us still have this weird sort of in built respect for anything that is written down, and so sometimes we just accept any old nonsense because someone bothered to write it and publish it.

I think that we all need to be a bit more careful, and make sure that what we're reading is accurate and up to date. Little Hearts Matter just got something called "the information standard", which is only given to websites and organisations who know what they're talking about. You can check out www.lhm.org.uk and see all of their information.

I also like the website "how stuff works" because it has lots of interesting articles, is easy to read and it's written by professionals at the discovery channel, so it's fairly trustworthy. I thought that I'd share with you here their article on the human heart, which is excellent. It's important to understand how the heart works so that you can understand how the operations have helped to keep your heart working as well as possible. Anyway, here's the link:

http://www.howstuffworks.com/life/human-biology/heart.htm

Teenagers made a video about their heart condition, it took a while...

These are just the bloopers from our video, to check out all the other parts of the DVD (like professional interviews and the main video!) click here and pick what you want to watch from the "I've only got half a heart... understand me?" section.