Staying active with adult congenital heart disease

Congenital heart disease covers many different structural problems, from small holes that rarely cause trouble to complex conditions repaired in childhood. The NHS says that for some adults this means regular check-ups, with treatment only if symptoms worsen, while others have symptoms that limit their activity.

Because of that spread, there is no single exercise prescription. The most reliable approach is to ask your specialist team what your heart and any repair allow, then build activity within that.

The NHS says to stay physically active and notes that your care team can advise on what level of activity is safe for you. The BHF likewise encourages adults to discuss exercise with their healthcare team.

Sensible starting points are regular walking, cycling on the flat and gentle swimming, increased slowly. Stop and seek advice if you notice chest pain, fainting, unusual breathlessness or palpitations during activity. Some conditions or repairs carry restrictions on very heavy lifting or competitive sport, so ask before taking up anything strenuous.

• Ask what heart rate or effort level is appropriate for you.

• Tell fitness instructors about your condition and any medicines.

• Keep a note of activity and symptoms to bring to clinic.

The NHS says many adults need regular check-ups after diagnosis and treatment. Services for adults are often provided by cardiologists with a special interest in congenital heart disease, sometimes at regional centres, and your GP can refer you if you have lost touch with services after childhood.

Moving from children’s to adult care is a vulnerable point, and the BHF has information on transition. If you have not been seen for years, ask for a review rather than assuming nothing has changed.

The NHS lists endocarditis, a rare type of heart infection, as a possible complication. It advises taking care of your teeth and having regular dental check-ups, because gum infections can cause complications.

Report unexplained fever, night sweats or feeling generally unwell promptly, and tell any dentist or doctor about your heart condition. Your cardiology team can say whether any additional precautions apply to your particular heart.

The NHS advises telling your care team if you are pregnant or trying to get pregnant so they can help make the pregnancy as safe as possible. The BHF says most people living with a congenital heart condition can have a family, but stresses planning ahead and understanding associated risks.

The BHF also says sex is safe with a congenital heart condition. If you are unsure about contraception or medicines, speak to your team before changing anything.

Living with a long-term condition from birth can bring worry, isolation or a sense of being different. The BHF mentions support groups and an online community for people with congenital heart disease to speak with others in a similar situation.

If low mood or anxiety is affecting sleep, work or activity, speak to your GP or your congenital heart team, as talking therapies are available.

Contact your specialist team or GP if breathlessness, swelling, tiredness or palpitations are getting worse, if you notice blue-tinged lips or fingers that are new, or if you faint. Chest pain with collapse, severe breathlessness or stroke-like symptoms need 999.