Diet and exercise
It is important for everyone to maintain a healthy lifestyle and a healthy weight to reduce the risk of health problems in the future.
Even for people with complex heart problems, we recommend exercise of some description. Exercise is not only good for physical health but for mental health too. Please ask your team for advice on what exercise is right for you.
Here are some links if you would like to get started:
Preventing infection in the heart
Infection in the heart is called infective endocarditis and is very serious. Please read our Infective Endocarditis information leaflet to find out how you can reduce your risk of your heart becoming infected. Some people require antibiotics before invasive dental treatment. Please ask your doctor or specialist nurse if this applies to you.
Travel information
The majority of people with congenital heart disease can and do fly/travel long distances around the world. If you are unsure, ask at your outpatient appointment or contact the Adult Congenital Nurse Specialist. The most important point to remember is to ensure that you declare your heart condition when purchasing travel insurance. Any omissions or mistakes made in relation to your medical condition can be used as grounds to refuse a claim.
If necessary, a medical letter can be provided, but the majority of companies do not require this. The Somerville Heart Foundation is a useful source of information about insurance.
Careers advice
It is important that you know where to get the right careers advice as you may need to be realistic about your career options. The Armed Forces for example are unlikely to accept anyone with congenital heart disease, even if it is mild. Those with rigorous fitness tests such as the police may not be an option. However, there will be a job out there that is right for you.
You may feel that your heart condition makes it difficult for you to find a job. The website www.gov.uk/careers-helpline-for-teenagers is a useful resource with information about disability employment advisers who can help you to find a job to suit you or help in practical ways to enable you to work.
Please also ask the specialist nurses for their advice.
Insurance
It can be difficult for people who have congenital heart disease to get insurance. This is often because companies do not have the medical knowledge relating to specific congenital heart conditions or there is a lack of long-term survival data available. Travel insurance isn’t usually a problem, but may be more expensive.
For life insurance, the best advice is to speak to a specialist insurance broker BEFORE you apply. It is important that you inform the insurance company of your medical condition to ensure that you are fully covered. Unfortunately it can be difficult for people with congenital heart disease to get life insurance, even if your condition is stable.
There are some more sympathetic insurers who can be identified and contacted through the Somerville Foundation.
Having children of your own
Both men and women need to be aware that if you have congenital heart disease yourself, your own children have an increased risk of having a heart condition. For this reason, we offer a specialised scan of your baby’s heart (fetal echocardiogram) at around 20 weeks of pregnancy. Please let yours/your partners midwife know. You can call the specialist nurses for more advice.
Contraception and pregnancy
Contraception and pregnancy may have implications for women with congenital heart disease. It is especially important for women with congenital heart disease to avoid unplanned pregnancies. It is also important that you know what types of contraception are okay for you to use, as not all are suitable for people with congenital heart disease.
Even though this is something you might not have thought about yet, contraception and possible future pregnancies will be discussed with you when you come to your appointments. We need to give you as much information as possible so that you can make choices about your future when you are ready.
If you would like some more information about contraception or pregnancy, you can contact the specialist nurses.
If you are considering pregnancy, please contact us and we will either discuss this with you on the phone or make an appointment for you to come to speak to someone in person.
If you have congenital heart disease and become pregnant, please let your team know as soon as possible.
Information for people with learning disabilities
We have lots of experience in looking after people with learning disabilities. Please speak to the ACHD specialist nurses who will ensure any reasonable adjustments are made to ensure your visit/stay is as comfortable as possible.
Patients can complete a Hospital Passport and send it to their team. This will help ensure that your team can understand you and care for you better.
Here are some resources you might find useful:
Cardiology Outpatient Appointment information leaflet (Easy Read format)
Your heart surgery journey – before your operation (Easy Read format)
Your heart surgery journey – coming to hospital for your operation (Easy Read format)
Your heart surgery journey – after your operation (Easy Read format)
The Leeds Hospitals Learning Disability and Autism Team are also available if you need any further help or support.
Advance Care Planning
There may be times in your life when because of your heart condition, you might wonder about what might happen in the future. We appreciate that these things are not easy to think about or discuss and some people would rather avoid the topic completely. There is good evidence, however, that people with adult congenital heart disease want to talk about their future health, good or bad, and often don’t get the opportunity that they want to.
‘It’s ok to ask’
We believe that everyone should be able to freely talk about how their heart condition might change over time and to talk about what is important to them for the future.
We think this is particularly relevant if you are becoming more limited (short of breath and fatigued, for example) and you may require more medicine to keep you feeling well. It should also be considered if you are contemplating major changes in your life such as getting married, starting or expanding your family, emigrating, or making significant financial commitments.
Your doctor or nurse will always be happy to discuss this with you in person or on the telephone. Please just ask.