Throughout the Covid-19 lockdown we have remained holed up at home desperately trying to keep the fears of Covid-19 at bay. Anyone with a single ventricle heart condition, or their families, has been fearful of the virus so many have not ventured out of the house and have not been able to exercise and stay fit as they would normally have done.

We know that the fitter you are the better able you are to fight off this virus and all infections We know now that being overweight and unfit means that Covid-19 can affect us more so we would like to join with the country to work towards being fitter for winter.

Over the next couple of months we are going to encourage more exercise, help with ideas about healthy eating and remind people about things like getting the Flu vaccination early and getting out in the sunshine a bit more

Exercise

We all need some sort of exercise to be fit. Everyone will have a different exercise tolerance so slowly increasing our exercise is the safest way to improve our fitness. There are very few children, teenagers and adults with a Fontan Circulation who are told that they should not exercise. Most cardiologists are really happy for their patients to get fit. 

The LHM team have produced a booklet about sport and exercise which doctors have agree but if you are worried about exercising safely or you are worried about your child taking on new sports, call your medical team for one-to-one advice. Click here to download the booklet.

Warm up and cool down

We all have a tendency to go straight into exercise without really preparing. As well as wearing the right clothes for the sport and the weather we also need to protect our muscles and our heart and lungs by warming up a bit before we walk, run or ride and then stretching down and gradually cooling the muscles off at the end of the exercise.

Here is the link to the NHS warm up guidance – click here

Stretching and cooling down really can help reduce those aching muscles. Here is the link to the NHS stretching guidance – click here

Getting out for a walk

Everyone is now encouraged to get out of the house. Going for a walk and increasing the distanced walked every couple of days can help general fitness. The Fontan heart likes exercising the legs as it helps the blood move around the body and back up to the lungs.

You can download step counters on your phone or get a fancy step counting watch. Gradually increase the number of steps you do each day.

The advice is gradually increase the exercise, do not go full pelt straight away.

Walking upstairs

Yes, we know that walking upstairs can make us breathless but if you gradually increase the number of steps you walk up and gradually speed up the walk upstairs it helps your heart and lung function. As always increase the challenge gradually, don’t run before you walk. 

The joy of walking up steps for exercise is that they are right there in most of our homes.

Going for a run

This might not be the right exercise for all of the LHM members but if you are fit and walking does not give you enough exercise your medical team might be happy for you to take short runs. Often a mixture of running and walking suits the Fontan heart best.

Riding a bike

Riding a bike is great exercise for children, teenagers and adults with half a working heart. It helps get you from A to B but is also is supported exercise for the lower body and therefore provides good support for blood returning to the lungs. There are many incentives to help get you on a bike, at the moment. Halfords are doing free bike checks to get an old bike on the road and the Government are helping with the costs of repairs.

Some children find the balance and co-ordination of riding a bike a challenge at first but practise can really help. Using a tag-a-long bike where the children get used to cycling but with the support of a parent is a great way to start or for a family to go on longer cycling trips.

Always wear a helmet to help protect against any knocks as often the children fall off the bike whilst practising.

Swimming

Swimming pools are just beginning to open for exercise swimming rather than just a splash around. If you have always been a good swimmer and like this style of exercise, it is a great way to exercise the heart.

Follow the guidelines set out to keep the swim Covid safe. We know that more chlorine is being added to the pool and fewer people are swimming at a time. Make sure you get dry and dressed quickly after being in the water because getting cold is a problem for some Fontan hearts. Wetsuits can help.

Exercise classes

Getting the whole family involved in taking an exercise class helps keep up the fitness but also can be a laugh. The online classes have been great over lockdown and they are still available for free online.

Jo Wicks morning workout can be found by clicking here.

The British Heart Foundation has some great rehabilitation exercise videos available if you want to start slowly and gently work up your exercise tolerance, they can be found by clicking here.

The British Heart Foundation also has a harder workout for people who are bit fitter.

 

 
 
You could explore what sort of classes are available locally now that gyms are open.
 

Gyms

Using gym equipment like the treadmill, bike or cross trainer are good ways to exercise, raise the heart rate and generally build up your fitness. Most gyms are open now with a reduced number of pieces of equipment and changes to the way the gym space is used. This may not be the first place to choose to resume your fitness if you have a single ventricle heart condition as you will be inside and close to other people, outdoor exercise would be a better choice as it holds fewer risks of catching Covid-19.

Weights, especially upper body weights or too much upper body exercise is not great for someone with a Fontan circulation as building up too much upper body muscle creates resistance for blood flowing to the head and then returning to the heart and lungs. General upper body fitness is fine.

Incentives, prizes and rewards

Getting fitter, losing a bit of extra weight and looking good in clothes could be incentive enough for anyone increasing their fitness but there are other ways to measure and record your progress.

Fitbit, Garmin and Strava are all examples of ways you can track your steps, measure your exercise distance and if you want, to share your improving fitness to  with the world. The kudos received for building the distance walked or cycled can help to encourage you to do more. Remember it is not a competition with other people but it is a personal incentive.

The LHM Brave Heart Awards will also be awarded to our young members who show how they have taken on healthy living and better diet to support their heart function.

Water

It should never be under estimated how important fluid is for keeping a Fontan heart healthy. We all rely on a good circulating volume (the amount of blood we have moving around our body at any one time). Although this might be restricted immediately after surgery but for the Fontan to work well it is good to have a good amount of blood for the heart to pump. Every think we drink ends up in the blood before it travels to the kidneys so it is this fluid that helps keep the circulating volume up. Drinking water is the best as it helps to keep our cells fresh and clean. 

How much children, teenagers and adults should drink can found clicking on the following links:

Hydration for children

NHS – six to eight glasses of water still the best

Fruit juice, squash and fizzy drinks are fun for a treat but are not great for a healthy diet and can cause tooth decay, which is not great if you have half a working heart – click here to find out more. 

Eating healthily

We know that small children with half a working heart find it difficult to put on weight. Parents are encouraged to get their children to eat as many calories as possible to gain the weight they need for surgery or to keep themselves at a healthy weight. We know that for many children this remains a problem for many year of their early life.

However during puberty this can begin to change, especially if the teenager or young adult is not particularly active. For some gaining too much weight can become an issue especially if they are still eating food that is filled with sugar and fat.

We are not suggesting that everyone with a Fontan circulation should go on a strict diet, unless their doctors or dietitian have told them to, we are suggesting that introducing a healthy diet early on can help children, teenagers and adults make positive food decisions as they get older.

Using the healthy plate guide can really help them get involved in healthy food choices and encouraging them to get involved in cooking helps them understand more about healthy types of food.

No one is saying that a treat is not a fun thing to have every now and then. We all like treats.

Here are some links to some ideas that may help.

https://kidshealth.org/en/parents/habits.html

https://www.nhs.uk/live-well/eat-well/healthy-eating-for-teens/

https://www.nhs.uk/live-well/eat-well/

Vitamin D

There is some evidence that the people who have suffered the most from Covid – 19 have had a low level of Vitamin D in their system.  Although the reasons for this link are unknown and Vitamin D levels go down in the elderly population it may also be because they spend little time outside  or it may be part of their genetic make up. Vitamin supplements may be prescribed for some people if there levels are low the easiest thing to do is to get outside and enjoy the sun and the light. Always remember the skin needs protection from hot sun so remember the sunscreen.

Vaccinations

Over the winter it will be important to keep as infection free as possible.

Making sure that all inoculations and vaccinations are up to date will help to prevent unnecessary infections.

Flu Inoculation

Everyone with a single ventricle heart condition is entitled to a Flu jab.

This year the Flu jabs/ sprays may be started earlier.

From six months old children with complex heart disease will be offered a flu vaccination once a year.

6 months – 2 years – Inoculation, the injection.

2 – 17 years – Nasal spray. This method of vaccination is fine for all children with a Fontan heart except for those on Aspirin, those with life-threatening reaction to egg, those with significant immune compromise and or those with breathing difficulties. They will be offered the injection instead of the spray.

18 years upwards – Inoculation

Parents should talk to their cardiologists if they are concerned about their child having the Flu inoculation.

RSV Inoculation

In addition to flu vaccinations, vaccinations against RSV (bronchiolitis) may also be offered to your child, but you should ask your child’s cardiologist for more advice on this. This is usually given monthly from October to February or March using a vaccine called Palivizumab and may require special arrangements with your GP or local hospital because of its expense.

Follow the link to all of the LHM vaccination information. https://www.lhm.org.uk/information/lifestyle-information/immunisations/

 
 

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    LHM Brave Heart Awards! Empowering young people living with half a working heart today.

    Maybe you know an LHM youth member who has achieved something great or has shown a real understanding of their heart condition? Let’s give them some recognition with a Brave Heart Award!

    You can nominate a young person with half a heart for a Brave Heart Award by going to our website here: www.lhm.org.uk/youth-zone/lhm-brave-heart-awards/
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    We are kicking off the week with some feel-good…

    “Tommy is absolutely smashing reception! He struggled to settle into nursery, but he started reception on the 3rd and absolutely loves it. He got a “star of the week” certificate on his first full week and he doesn’t want to come home on an afternoon! Tommy is doing 5 full days and is pre-Fontan, so I was expecting him to struggle, but he’s not ❤”

    Fantastic news sent in by LHM member Beth, mum to Tommy who was born with half a heart. So pleased he is settling in well.

    Parents, remember we have a new teachers pack created to help schools understand the needs of a child with a single ventricle heart. You can find it here: bit.ly/3jqAbpQ or email [email protected] to request a hard copy.
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