Energy

Living with half a heart can mean you face many different challenges. One of which is not having as much energy as your friends. This is because your body finds it harder to produce the energy it needs to do simple day to day activities.

Energy is made in every cell of the body from the oxygen, food and water transported in the blood and pumped around the body by the heart. 

 Children and Young people with a single ventricle heart, half a working heart, have less energy than their peers because they have less oxygen in their blood and only have half the pump needed to drive blood around to every cell. 

Doctors who have researched this say that most heart healthy teenagers run at 100% energy level at rest and are able to increase that to 500% on activity. Young people with half a heart run on a normal energy level of between 50% and 75% which can only rise to 200% when active. 

Every activity in a day takes up energy, walking, talking even digesting food. It also takes a huge amount of energy to concentrate and remember information or instructions.

So to help you understand your energy levels in an easier way, Little Hearts Matter have introduced The Spoon Theory.  This is a great tool for you to plan your day and make sure you have enough energy to complete activities like going out with your friends or completing homework. It is also a useful way to explain to your friends, teachers and parents how you get more out of breath or tired.

The Spoon Theory was first introduced by Christine Miserandino who needed a way to explain to her friend about her condition, Lupus. She found using spoons was a helpful way to show how fast her energy reduced throughout the day. She used 12 spoons to represent the amount of energy she started the day with and sometimes this reduced to no energy left at the end of the day.

Using this theory, some of our youth members adapted it to explain their heart condition. One of the youth members explains, “A normally person starts their day with 20 spoons of energy, just what they need for the day ahead. Throughout the day everybody loses spoons, as they do activities like walking to school, and gains spoons, for example when they take a rest or eat.  However, people with heart conditions, like me, start each day with 10 spoons.” Lucy (13).

Using this Little Hearts Matter and our youth members produced and starred in their film explaining what having half a heart can do to their energy levels.

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    A few weeks ago, we shared a news article about John and Kate Carlton who have been fundraising for Little Hearts Matter. This family’s amazing support doesn’t stop there, as their 9 year old daughter May also arranged for her school to take part in a non-uniform day for Little Hearts Matter. She put together a PowerPoint presentation and spoke to her Headteacher who agreed to hold a fundraising day for LHM.

    Just look at how many donations were received on the day – well done May, you’re a star! ❤️ To get involved and register your fundraising, click here: www.lhm.org.uk/get-involved/fundraising/register-your-fundraising/
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    Youth Support

    There are young people living with half a heart across the country, many aged between 11 and 18. It is massively important for all of these brave young people to have access to the care, guidance and support they need – allowing them to live life to its full potential that their heart will allow.

    Lexie runs our Youth Services, supporting our youth members in a variety of ways, throughout their half a heart journey. These young members are invited to Activity Weekends and Education Days where they will explore their heart condition and seek solutions to the challenges that having half a heart brings. They will also have an opportunity to meet with other young members, online and in person, making friendships and helping them feel less alone.

    Did you know our youth members also consist of siblings? We know it can be a tough road for them too, so they also have a chance to chat with each other for support from people their age that truly understand. You can find out more about our Youth Services by clicking here www.lhm.org.uk/youth-zone/
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