10 things adults with congenital heart conditions want to know

How is my heart now?

It may be a while since you last saw your specialist or had a check-up. You might be thinking: ‘Is my heart OK, and is there anything I need to know?’ By attending regular appointments, your specialist can check if your heart and circulation are working well, and let you know if there’s anything new you should know about.

It’s important to attend regular appointments even if you feel well. Getting this information can reassure you and help you feel on top of things. It also means you can take the right steps to manage your condition.

Should I be exercising?

It’s normal to feel anxious about exercising if you have a heart condition. For example, you might be worried about getting out of breath or putting your heart under strain. As a child you may even have been told to avoid certain sports or activities - but bear in mind that this advice may not apply to you any more, so check with your nurse specialist or cardiologist.

We now know that most people with congenital heart conditions will benefit from regular exercise, as long as you keep within your limits. If you exercise in a way that’s safe and right for you, it’s a great way to boost your fitness and heart health. You’ll also benefit from immediate improvements to your mood and sleep.

If you’re keen to be more active, speak to your nurse specialist or cardiologist about what types of exercise are best for you, and any you should avoid.

• Read our 8 ways to get active every day 

Can I smoke, drink or take drugs?

Cigarettes, alcohol and drugs each carry some risk for everyone, but if you have a heart condition it’s important to find out if your condition puts you at a higher risk.

People with certain heart conditions will be advised not to drink any alcohol. You should check with your cardiologist. Alcohol and non-prescription drugs can sometimes interact with some heart medications, including Warfarin, an anticoagulant that thins the blood and prevents blood clots.

Your cardiologist can advise you on the risks of smoking, drinking alcohol or taking drugs with your heart condition. Having this accurate information will help you to make up your mind, so you can stay as well as possible now and in the future.

• Read more about what smoking and drugs do to your heart.
• Read more about what smoking and smoking alternatives, like vaping and shisha, do to your heart.

What do I need to know before having children?

You may have a lot of questions if you are thinking of starting a family, and it’s important to seek expert advice that is tailored to you. Some of the things you might want to consider are:

Is it safe for me to get pregnant?

It’s very important to talk to your specialist if you are thinking of having a baby, or as soon as you know you are pregnant, so that you can get all the extra care you need.

If you are a woman who was born with a heart condition you may be able to have a successful pregnancy, but you will need some extra care during your pregnancy and the birth, to look after your and your baby’s health.

If you have had surgery, you may have some scarring on your heart, and that can lead to problems, such as an irregular heartbeat during pregnancy. Being pregnant puts an extra strain on the heart as the volume of blood in the body increases and the heart has to work harder to pump more blood around the body. Other problems can arise during pregnancy, for example some people develop fluid on their lungs, or some can experience symptoms of heart failure. .

Will I pass on my condition to my children?

Depending on what your heart condition is, there is a possibility that your baby may inherit it. This can be true for both men and women who are planning to start a family. You can discuss the likelihood of this with your cardiologist, who may wish to refer you to a genetic counsellor to help you understand what options might be available, such as prenatal screening.

If you were born with a heart condition, you will usually be offered a scan for your baby at around 20 weeks into the pregnancy to check for any serious heart problems.

There are other ways that your heart condition can affect your baby. For example, if your heart doesn’t pump well, your baby may not get all the oxygen and nutrients it needs to develop and grow, and your baby may be born prematurely. It’s important for you to talk over the risks and the possibilities with your specialist so you have all the information you need to make a decision.

What do I need to do before trying for a child? 

Whether you are a man or a woman you may want to talk to your cardiologist about whether you could pass on your heart condition (described above).

If you are a woman, you should talk to your cardiologist to see if being pregnant will affect your heart condition or if your heart condition will affect your pregnancy.

You may need to adjust the medication you take for your heart during pregnancy, or even stop some of it. Your specialist will be able to discuss this with you, but you should keep taking all the medicine you’ve been prescribed unless your specialist tells you to stop.

Every person is different, and that is why it’s very important for you to speak to your specialist. They will assess you, talk to you about the risks and possible problems there may be, and help you make a decision that is best for you. If you do get pregnant, you will be looked after by a hospital team that includes a cardiologist.

Talking to your specialist as soon as possible will make sure you get the best possible care for you and your baby.

• Read more about pregnancy when you have a heart condition.

Will I need more surgery?

If you had surgery on your heart when you were younger, you may think you are ‘fixed’. While some people may only need one operation in their lifetime, they will still need regular appointments to check that nothing has changed with their heart.

Depending on your condition, you may need further surgery to keep your heart working as well as it can throughout your life. If something in your heart changes, your symptoms worsen or you get new symptoms, your cardiologist may discuss having more surgery to improve the way your heart is working.

It can be helpful to ask your cardiologist what the likelihood is that you will need more surgery in future, and when that may be. Unless there is an emergency, surgery will be planned with you. Your cardiologist will see from the tests you have at your check-ups if anything has changed and when you may need another operation.

All surgery, including heart surgery, carries some risks, and your specialist will talk these over with you. Don’t be afraid to ask questions about future surgeries – knowing what is involved can help prepare you so you can go ahead understanding what will happen, how you will recover and what improvements you can expect after the operation.

 Am I at a higher risk of infection?

If you were born with a heart condition, we know that you are more likely to get infections of your lungs or airways, or an infection of the lining of the heart (endocarditis). The infections that lead to endocarditis can start when your skin is pierced, like tattoos or piercings. Poor dental health can also cause endocarditis, so it’s important for you to have regular check-ups with a dentist. Endocarditis is always taken seriously and needs to be treated with antibiotics in hospital.

You won’t necessarily get long-term complications, but having regular check-ups, taking your medication, eating well and exercising within your ability will all keep you as well as possible.

What does my medication do? 

When you are born with a heart condition, it means your heart doesn’t function in the same way as a normal heart. The heart’s main function is to pump blood that is rich with oxygen around your body to your vital organs. As well as surgery, different medications can help make sure your heart works as well as possible so that your body and brain gets the oxygen in your blood that it needs.

The medication you have been prescribed will depend on your heart condition. If you want to know more about the medication you have been prescribed, why you have it and what it does, ask your specialist to explain at your next appointment. You can also ask your local pharmacist about your medication. Pharmacists are qualified specialists, and many pharmacies have a room where you can have a discussion in private. Many pharmacists will also be happy to arrange to talk to you on the ‘phone if that suits you better.

• Find out more about heart medications.

What’s the latest research  on  congenital heart disease? 

While there are still many things we don’t know about congenital heart disease, research is happening all the time so we can understand different conditions and how to best manage them.

The British Heart Foundation is funding research into how the heart forms, how to protect children’s hearts during surgery and also how to make a 3D model of someone’s heart, which surgeons can use to plan surgery.

• Find out more about the research we’re doing on congenital heart disease.

How often will I need to see a specialist, and how do I make an appointment?

Your specialist will tell you how often you need to be seen. It will depend on your heart condition, how well you are feeling, what medication you take, and your current symptoms. Normally appointments would be in person (face-to-face) and you would receive a letter or email to confirm this. Since the pandemic many people have been hearing about their appointment via a text message, and appointments have been taking place on the phone or video link.

Sometimes you’ll need to follow up if you don’t hear from the hospital. If you need to make an appointment you will need to ring the department in the hospital where your specialist works. You will speak to someone called a medical secretary whose job is to make an appointment for you. You might want to keep their name and number for the future, in case you need to ring again. It’s important for you to be seen so you can make sure your condition is well managed and you stay as well as possible. When you get a time and date for an appointment, make a note straightaway so you remember to go.

What can I ask my specialist?

You can ask your specialist about your heart condition and any concerns or questions you may have about it. They’re used to answering personal questions and others will have asked similar things before you. If you find a subject difficult or embarrassing to bring up, you may prefer to write down your question. When you see your specialist it’s a good idea to tell them about any symptoms you have had, and if anything has changed. You may want to go to your appointment with a list of things you want to ask, so you don’t forget anything. You can ask if you can take someone with you for support. You can also make a note of what they tell you during the appointment, or ask if you can record what they say, so you can remember it afterwards.

• Read about the 12 questions to think about before seeing your specialist.