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.

Young people with a single ventricle heart have less energy than their friends because less blood reaches their muscles and general tissues. This is due to the reduced pumping ability of their heart. When one heart pump is doing the job of two it concentrates all of its energy on sending oxygen to the brain, heart, kidneys and liver.

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. Climbing the stairs, running for the bus or even a long day at school uses up that energy quickly meaning that there is little spare for the rest of the day.

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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    If you are booking your summer holiday you might like to look at our Travel and Trips booklet to help with your planning. It is full of tips and ideas for how you can make sure you have a great time but also keep your heart warrior safe. www.lhm.org.uk/information/lifestyle-information/travel-and-trips/ ... See MoreSee Less

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    Children with half a working heart catch colds and coughs just like other children of the same age but of course when you already have a reduced energy level and less oxygen travelling around your body it can knock the children for six. Parents may notice that their child is a bit more cyanosed, a bit bluer, and that they may be a bit more breathless than normal. Keep the children well wrapped up and snug and warm, give them Calpol if their temperature is high, keep the fluids going, small amounts of nourishing food every couple of hours and lots of opportunity to sleep will all help a child recover. HOWEVER, if they have a high temperature for a couple of days or their breathlessness or colour becomes worse take them to the GP for a check-up. If the infection is Viral there will be no point in antibiotics but if the GP thinks antibiotics will help they will be prescribed. If you are worried at all always get your child checked by a doctor. ... See MoreSee Less

    2 days ago  ·  

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