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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    Meet Matthew 👋

    He is the oldest Hypoplastic Left Heart Syndrome adult who had the classic Norwood procedure in the UK. We thought the heart-parents out there would love to see this picture, as Matthew is actually one of the children in the 25th anniversary poster that he is stood next to here!

    This one is much more than a Thursday throwback, it’s a glimpse into the future for our heart-heroes as they progress from childhood, to teenage years and then into adulthood. They cannot be cured, but with the right support they can live life to the fullest that their heart will allow, because half a heart does not mean half a life.

    This is where you come in. Because when you purchase a patch on our Visufund blanket, you are giving us the resources we need to continue to support people like Matthew, throughout their half-a-heart journey.

    Make a donation now: visufund.co.uk/lhm-wrap-a-blanket-2

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    12 hours ago  ·  

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    ❤️In our latest family story, Fiona shares her inspiring half-a-heart journey with us;

    “Lucia has grown with the charity that has supported her and our family throughout our half a heart journey. There is always someone from the charity at the end of a phone and we can connect easily with other families via social media. We can never thank them enough for the information and support they provide. Lucia has a very uncertain future ahead of her but one thing we are certain of is the support we have received from the LHM family.”

    ❤️Read Fiona’s story here: bit.ly/35nTucI

    As a non-profit organisation, we can only be there to support families like Fiona’s with your help. When you purchase a patch on our Visfund blanket, you are helping these families receive the care, information and support they need throughout their half-a-heart journey. We are now onto our second blanket, and we are confident you can help us fill it with your wonderful donations and messages!

    Make a donation now: visufund.co.uk/lhm-wrap-a-blanket-2

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    2 days ago  ·  

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