Living life with half a working heart can be hard, but we’re here to provide you with the information you’ll need to be able to make an informed choice about different areas of your life.
Tattoos and piercings
All tattoos and piercing carry some risk and most cardiologists and health professionals recommend that 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.
However, the decision to get a piercing or tattoo is yours, and if you choose to proceed, what follows will help you to make the procedure as safe as possible;
Information taken from The Somerville Foundation
Drinking, especially as a young adult (and ESPECIALLY if you go to University!) has become more and more a part of growing up and a part of life as a teenager. However, having a single ventricle heart condition makes navigating the issue of alcohol all the more difficult. There are 2 sides to this—the medical side and the social side. We’ve put together information on both of these, as well as quotes from our youth experts.
Remember: drinking is a personal choice that no one can make but you. Whatever you choose make sure you know the risks and never put yourself in a position that is likely to impact on your health.
There is a lot of information about alcohol and a complex heart condition that you need to know, so whatever your decision about drinking, after reading this article you’ll have all the facts at your fingertips.
- Drinking large amounts of alcohol regularly has risks for anyone—liver disease, reduced fertility, high blood pressure and increased risks of cancer and heart attacks being some of them, and these harms can stay hidden for many years.
- For someone with a reduced heart function that risk is increased and can be more immediate. Large amounts of alcohol can cause your heart rate to speed up rapidly and effect the efficiency of the heart. It can also effect your liver function, interfering with the absorption of some medications, preventing them from working correctly and lead to arrhythmias.
- Alcohol can be especially risky for people on Warfarin or other anticoagulants as it increases the effects, thinning your blood further and therefore increasing the risk of bleeding.
All of this sounds really scary but it’s about being safe. It is important you ask your cardiologist what they would recommend as your maximum daily/weekly intake, as each person is different and you need to know how much you can reasonably expect your body to handle. If you are sensible and stick to your recommended amount it is unlikely to have a huge impact on your health, and is also unlikely to interfere with your warfarin levels. However, binge drinking (of which there is a lot of amongst young people, especially at university) is the real risk. As well as the aforementioned problems there is also the risk your liver may not cope, you can end up vomiting and not absorb medication, and it can contribute to accidents, loss of memory and poor judgement which can risk your personal safety and wellbeing.
If you decide to drink here are some tips…
- Decide on your limit before going out and stick to it.
- Alternate every alcoholic drink with water to dilute the effects.
- Eat a good meal before going out to slow the absorption of alcohol into the system.
- If you decide to drink, do it in moderation and stick to lower alcohol by volume (ABV) options. Cider and lager are around 4-5% ABV while a single shot of vodka is 40% ABV—you do the maths!
- Plan how to get home safely and always have money for a taxi home in case you need it.
- Stay with people that you trust.
- On most phones you can download an app to track your drinks—most of these are free and will give you information on units and how much you have drunk. These are handy to have in your pocket while you’re out, and will make it easy to keep on top of your drinks so that you can drink safely.
Stimulant Drinks: Although non-alcoholic, stimulant drinks, such as red-bull have an effect on the heart as they cause an instant rise in blood pressure and heart rate and could be detrimental to your health. I would recommend you stay away from the popular student drink of vodka and Red Bull, especially because they don’t taste nice anyway!
Drinking can be a very sociable thing (including things like drinking games) however it’s really important that you think about how much your body can handle.
Tips on how to handle the issue of alcohol…
- Work out where you stand on the issue of alcohol. If you know your own mind it will be easier to stay true to yourself and not make an impulsive decision while out without thinking through the consequences.
- Trust your own judgement and don’t be swayed by peer pressure.
- If you are with people you feel comfortable with then explain the situation, you don’t need to go into details but most people will probably be quite fascinated as they are unlikely to have met anyone with a complex cardiac condition. (This is especially true once you get to University: it isn’t like school where you are expected to fit in, at university being different and individual is often celebrated)
- If you are with a big crowd – the likelihood is no one will notice if you aren’t drinking. If you are having a lemonade or coke people will assume that you have vodka or gin in there too!
Drinking games: drinking games are a way some people ‘warm-up’ for a night out. They get very drunk in their rooms, or communal areas so that they don’t have to spend as much money when they go out. Drinking games may look like a lot of fun but the combination of a large amount of alcohol drunk vey quickly can have a severe impact on your heart. Drinking this much this fast poses risks for everyone but having a complex cardiac condition makes the risks more severe. If you want to be involved but are uncomfortable explaining the situation you could:
- Drink out of a can, which will mean no one knows how much you drink and no one will question it.
- Just drink a non-alcoholic drink.
- Drink something with a low ABV (Alcohol by volume) and drink slower and less than the others.
Drinking is a social thing, and if all your friends are doing it, you may worry that you’re friends won’t like you if you don’t get involved. Drinking is your own personal choice, and the only person who can make that decision is you. As long as you are aware of the risks for your heart (and general health!) you should feel comfortable making the decision.
Keeping warm in winter
Poor circulation (movement of blood around the body) and an inability to exercise to keep warm cause problems when you have a single ventricle heart condition. Often your feet and hands feel like ice and your lips go blue very quickly when the weather is cold.
Pile on the clothes
Lots of thinner layers are better than one thick one, as they trap and warm air. Go back to buying vests; lots of shops have good thermal ones! Put tights on under trousers and put socks on top. Yes even you boys! Batman wears tights! Find a hat with earflaps and nice thermal gloves. Try the local ski shop, they have gear especially designed for very cold weather.
Warm up from the inside
Have hot cereal for breakfast; warm the morning drink of milk. Make hot chocolate or tea for snack time. Have soup with a sandwich for lunch and plan warm snacks throughout the day. Remember that you need food little and often so you’ll be helping your diet and keeping warm.
Cover those noses
Remember scarves or a balaclava can help keep those noses warm.
Snug in bed
Onesies with extra socks can help when the duvet slips. If it’s really cold, think about using a sleeping bag.
Prevent sore lips by using lip balm or simple Vaseline.
If a runny nose persists, talk to your parents about getting advice from your health visitor or the GP. It might develop into an infection.
Staying safe in the sun
It is important for everyone to protect themselves from the effects of the sun, but it is essential when you have only half a working heart.
Protection from the sun’s rays
Your skin is very sensitive, especially along your scar area, so you burn easily in the sun (some medications make the skin even more sensitive—if you’re on Amiodarone, you can be particularly sensitive to sunlight, so you need to be especially vigilant about keeping yourself well protected). Always protect your skin by using sun cream—high factor creams are the best. Tanning shouldn’t really be a priority, just being out in the sun will give you a healthy glow. Try to make sure that your shoulders are covered and that you are wearing a hat and sunglasses—proper UV light protection ones. Always make sure that there is shade in the garden, park or beach. Getting sunburned isn’t nice and can be very dangerous for you.
You can overheat but even in the sun you can get cold
If you are going out, try and dress in lots of thin layers so that you can have as many or as few layers on as you need to keep warm but also to keep cool. A change of clothes is essential if there will be water where you’re going (beach, lake, stream, etc) Having half a working heart, you will get cold quickly after being in the water—even for a quick paddle—and even in the sun so a towel and fresh clothes will soon warm you up. Always remember a waterproof because the weather can change very quickly and a sudden downpour can leave you soggy and cold. Be careful when using air conditioning, like in the car, as you may find it too cold, even though it feels comfortable for everyone else.
Energy levels in the sun
When the sun is out, we all go outdoors—It’s great to get some fresh air! When you’re outside, you might get more active (playing games, walking far, etc) so you’ll probably tire easily. Try and make sure you can have short breaks, just ten minutes sitting down before you’re up and about again can be enough to give you a good rest. Even on the beach or at the park, listen to some music, read a book, play a game etc (probably all of these are on your phone!) whilst you take a break.
Swimming with half a heart
Swimming is great exercise when you have a heart condition, the water supports your body making exercise a little easier. If you are swimming in the sea or an outside pool a wetsuit can keep you warm. If you are swimming outside in swimming costumes you need to cover your skin in waterproof suncream and if you are not diving under the water a hat can keep the sun off your eyes. Remember that playing around in the sea/pool can be very tiring so make sure to have regular breaks still (like mentioned above).
Medicines in the sun
Even when the sun shines you need to take your medications. Some of you might need them even when you’re out and about. If you’re taking liquid medications it is often important to keep them cool. A little ice pack bag with drinks and medications stored in it will keep them safe, but be careful it isn’t too cold as you don’t want frozen medication!
Eating in the sun
Not many of us want to eat large heavy meals when the weather is hot and the sun is shining. Having half a heart you’ll probably feel the same, but you need the calories to fuel your heart. Lots of small meals and planned snacks that are filled with calories will help to keep your intake high. Ideas include fat-filled ice cream, sandwiches filled with protein like eggs, ham or peanut butter, finger food like chicken dippers, mini sausages or cheese chunks and chopped up vegetables like carrot and celery, and milkshakes made with fruit and ice-cream.
Respecting your heart
Growing from childhood to adulthood is an exciting time, hopefully full of new opportunities, a bit more freedom from parents and family and the chance to gradually step out on your own. Even if you have been born with a complex heart problem you still have every right to reach your full potential, basically to achieve as many goals and aims in life as your heart, mind and body will let you, but to make sure that you have as healthy a life as possible you also need to respect your heart because you are your hearts keeper, you are the main person responsible for keeping it fit and healthy. Of course the surgery, medicines and checks up help. Without those you would not be able to do anything but you are also part of the team looking after your heart function.So here is the deal, these are areas of life where you need to think about your choices, no one can tell you what to do when you are an adult but you need to understand why some choices are safer/better than others.
Seeing your cardiologist regularly
OK we know that when you were young someone took you to see the cardiologist. As you get older you can choose who goes with you to the doctors. The point is you are now responsible for making sure that you go to your medical appointments. Other areas of your life are not more important, so even if you move away to study, have other fun things to do or just get fed up of all the tests, you have to remember how important those MOT visits are, the car has a check every year why shouldn’t you? The doctors can balance your heart function, tweak your heart efficiency, maximise its potential but they cannot do any of that if you don’t go to see them. Put the date of appointments in your diary, on your phone and tell someone else about them so you don’t forget. Oh and by the way if the doctor thinks you need medications then take them, they don’t prescribe them to be difficult, they are trying to give your heart a boost. If you think you don’t need a medicine any more talk to your Cardiologist before stopping anything. You are part of the medical team here so you have the right to say what you think but don’t put yourself at risk. So point one is respect your heart and medical team that look after it.
Keeping fit and well
Ok we all know that sometimes your heart struggles to cope a bit and the doctors will need to treat that but what things can you do to help keep fit and well. Firstly eat properly . Not lots of snacks but proper food, learn how to cook! Plan your meals and if you have a takeaway each week that’s ok but try not to live on burger and chips because too much salt and fat is not good for anyone. Remember to get all of your Jabs. The yearly flu jab helps to protect you from most Flu’s. You don’t need an infection on top of your heart condition, go and get the Jab and any other immunisations on offer.
Keep fit – I don’t mean enter a marathon or even joining a football team because the competitive sport may push your heart too far but a bit of exercise (check which sort with your Cardiologists) will keep your body fitter. Email us if you would like our new Sports and Exercise booklet.
Keeping warm – We know it is not glamorous to wear a coat and of course a hat may muck up your hair but being cold is not good when you have only half a working heart. Keep warm so your heart doesn’t waste energy trying to pump blood down to your toes and fingers because you haven’t bothered with gloves and socks.
Alcohol – We know that teenagers and young adults like to have a drink. Most social occasions include some sort of alcohol. It can be tough to be different from your friends so firstly find out what the doctor thinks is safe for you, it can be different for every young person. Having gained their wisdom, think about how you are going to fit that into your life. It is your decision but think wisely about it.
Sex – Ok I know that this can be a bit embarrassing to talk about but sex and relationships are part of life and are very much part of being happy as an adult. Relationships are all about respect, understanding each other and in your case your heart condition may be very important for your relationship. If you have questions go and speak to your Cardiologist or Specialist Nurse. They talk about these things all the time and so they will not be embarrassed so you needn’t be either.
Smoking – Yes everyone knows that smoking is bad for your health but lots of young people do it. I bet lots of your friends smoke. So the decision is yours but let me tell you why it will affect your health. Your heart has a tough time pushing blood around your body. Normally two pumps do the job of sending blood to the lungs and then sending oxygen filled blood around the body, you only have one pump trying to do the whole job. Smoking does two things to make that job harder. It fills your lungs with gunge that stops oxygen passing easily into your blood and it causes your blood vessels to go hard making it more difficult to move blood around your body. So you are in charge here. If you choose to smoke you need to understand that you are making your heart work harder. So point two is respect your heart and yourself.
Mum and dad – Yes even though you are becoming independent you do still need to think about mum and dad or whoever has been looking after you. It is completely right that you take over the lead in your medical care as you get older but you also have to remember that your family have watched over you, worried about you and where possible have protected you since you were born, sometimes even before. Work with them as you gain your independence. Listen to what they say and use their knowledge to make your decisions. Don’t assume that everything they say is wrong even if you don’t want to hear it. Sometimes it is good to take on board everyone’s information and then go away and quietly make a choice. So point three is respect your heart and your family.