5 ways to manage your heart condition as you grow up

Younger patients tell us that growing up their healthcare fell to their parents or carers, from arranging tests or appointments, to reminding them to take their medication. Transition from child to adult health services means you’ll see a different team at your local hospital or at another hospital. You’ll now be responsible for going to the appointments.

Here are 5 things you need to know about managing your condition as an adult, with tips from other young people on how they dealt with the transition.

1. Have regular check ups

Having regular appointments with your specialist throughout your life is important. Even if you feel fine, going to these appointments will give you the support you need to stay well. Doctors will keep checking your heart and circulation are working well and can spot any problems early on so they can be treated.

If you don’t know who your specialist is, or you’re not sure how to make an appointment, your GP can refer you. Once you've been referred to a specialist or clinic, you should receive an appointment letter in the post. If you’ve moved to a new house recently, make sure to update your medical team with your new contact details as soon as possible.

If it’s been a while since your last check-up, you might be feeling a little worried or anxious. Your specialist will be able to talk to you about any questions or concerns you have and offer you reassurance.   

Our top tips for making the most of your appointments are to:

• have a dedicated notepad to take notes of any questions you have for your next appointment
• note down any symptoms you’ve been having in between appointments so you can talk about them with your healthcare team
• talk to people close to you and find out if they have any questions they want you to ask
• arrive early before the appointment so you’re ready to focus
• bring someone along for support if you need it.

‘I take a notepad and pen to my appointments’ Hannah tells us. ‘I go there with questions I have and I take notes. I’ve tried to remember the answers so many times and forgotten, which is so frustrating when you’ve waited so long for that conversation.'

Don’t be embarrassed to talk about any concerns you have, you won’t be the first or the last person to ask. 

Make sure you know how to contact your specialist if you need to. If you feel unwell, contact your GP or specialist team if you can. Always call 999 if you're having chest pain or difficulty breathing.

• Read our article covering 12 questions to ask before you see your doctor.

2. Keep on top of your medication

It’s important to get into a medication routine and stick to it daily. Not taking your medication when you should, could put strain on your heart and make you very unwell.  

Some easy ways to manage your medications are to:

• store them in a cool, dry place like a cabinet and don’t leave them in the sun.
• put reminders on your phone so you remember to take your medications at the right time or build it into a daily routine.
• talk to your cardiologist about any issues like side effects.
• if you’ve missed a dose, check the leaflet it came with for advice. Usually you should take it as soon as you remember, but if you’re close to the next dose just take that. Never double dose.
• check with your doctor if you want to take supplements, as some of these can effect medications.

If you have any concerns about your medication, discuss them with your doctor.

• Have a look at our list of medications for more information.

3. Get familiar with your condition

Heart conditions can be tricky to understand. As a child there’s so much to learn and your parents or carers might have been the ones to take on that mental load. Being able to explain your condition in simple terms will give you the tools to talk about it and feel confident managing it. 

‘It’s surprising how long I went without actually being able to explain what my condition was’, says Vicki, ‘as a teenager I wanted to pretend it wasn’t there. As an adult, learning about my condition made me more interested and helped me to accept it.’ 

• Find out more about how the heart should work.

4. Eat healthily

Whilst taking your medication will help to keep you well, diet is also very important for long term heart health. Eating well allows your body to get the nutrients it needs to work as well as possible. It also can help you stay at a healthy weight so you can avoid any further strain on your heart.

We have some quick tips that are easy to remember:

• Eat 1 to 2 portions of veg with every meal.   
• Swap sugary drinks for juice mixed with sparkling water or chose low sugar versions.
• Snack on fruit, oatcakes or fruit scones instead of biscuits or chocolate if you’re craving a sweet treat.
• Add fibre to your meal at least twice a day (e.g wholegrain breads and cereals, oats, jacket potato beans, nuts and seeds).

Foods such as chocolate, biscuits and cakes aren’t nutritional, so try to eat them less often and in smaller amounts.

5. Get moving

Regular physical activity is important for everyone, including if you have a congenital heart condition. The benefits are keeping to a healthy weight, increasing endorphins for mental health and building up physical strength. 

Everyone is different so always talk to your medical team about how much you should do before you start any new exercise.

‘I was doing intense training to be in the army. When I found out about my heart condition I didn’t want to stop, even though I couldn’t do that job now. I adapted my lifestyle and still trained, but just not as hard.’ Alex 26

150 minutes of moderate intensity exercise is recommended a week. People with congenital heart conditions can aim for this too. If that’s much more than you’re used to, start with what you’re doing and build up slowly. If you’re worried about going too far, there’s lots of low intensity options that can still help to build up your strength and fitness. 

You could try:

• pilates or yoga; these help to build strengthen your body gently but are also challenging
• cycling; use a bike to get to places instead of public transport or driving
• a daily powerwalk; 30 minutes a day can build heat and is great for mental health
• taking the stairs instead of the lift; an easy way to sneak exercise into your day.

Moderate intensity activity might make you warm, sweaty, breathless and get your heart beating, but you should be able to hold a conversation. You may experience these symptoms as part of your condition so always check with you specialist if you have concerns about exercising. If you’re struggling to talk during exercise then you should stop. 

‘Some days I prefer not to do the more intense exercise and I’ll do yoga instead. That way I’m still doing something and building up strength. Yoga helps me to tune in to what my body needs, which helps me manage my condition better’ Vicki.

Other things to consider

Connecting with others like you

Getting to the age where your heart condition becomes more of a responsibility can be overwhelming. You might have lots of questions or find it hard to relate to people around you.

Lots of young people with heart conditions have told us that finding a support group in person or online has been very valuable to them. Joining a group can help you to stay on track, ask questions and find others who are in a similar position to you.

• Join Health Unlocked, an online forum where you can discuss your concerns about your heart condition and hear from others too.

Work

If you’re in a job, it’s a good idea to tell your work about your heart condition. That way you can have a chat about any support you might need going forward. This could include asking for time off to go to appointments and talking about any activities that might not be right for you to do.

• Having a heart condition might mean your career is affected at times. Find out what financial support is available.

Sex and relationships

If you’re over the age of consent, you should be able to enjoy a healthy sex life and relationship just like anyone else. If you have any concerns then try to communicate these with your partner. If there’s anything specific to your condition or medication that might be affecting your sex life, talk to your doctor. It’s ok to feel a bit embarrassed but they’ll be very used to answering questions about sex.

Contraception is very important if you have a congenital condition and it’s important to plan for pregnancy with your specialist. 

• Read more about sex, relationships and pregnancy.

We worked with 6 young heart patients to produce Transition: Your Journey. This film guides you through the transition process and helps you think through any questions you might have.

Heart Helpline & other support:

• Call our Heart Helpline to speak to one of our cardiac nurses.
• Speak to others with heart conditions by joining a support group or online community.
• Sign up to our Heart Matters magazine and online information packed with health and lifestyle advice.

Page last updated: Oct 2021
Next update due: Oct 2024

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