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Please find below a range of helpful tips and information around living with ACHD that you may find useful.

Living with ACHD

Living with ACHD

For general support and advice about living well with ACHD, here are some useful resources.

Infective Endocarditis

Infective endocarditis is a rare but serious infection which can cause problems such as stroke or even death.  It most commonly affects the heart valves, but may also occur around holes in the heart, major arteries or at the site of previous surgery.

Treating endocarditis involves admission to hospital for additional tests, intravenous antibiotics are usually required for six weeks and in some cases heart surgery is needed.

Some people with ACHD are at greater risk of infection so precautions must be taken to minimise the risk. You may have been notified that your particular condition has a higher risk, if you are not sure you should ask your ACHD team.

 

Further reading:

NHS - endocarditis (opens in new window)

 

Dental hygiene

Dental hygiene is very important to prevent endocarditis.

  • Brush your teeth twice a day
  • Visit your dentist regularly
  • Get checked promptly if you have toothache or a mouth infection
  • Make sure you have a check-up with your dentist before any surgical procedures
  • Please make your dentist aware of your heart condition and the current advice for preventing endocarditis in patients with ACHD.

 

Tattoos and piercings

Due to the risk of endocarditis through breaks in the skin, tattoos and piercings are not recommended.

 

Beauty treatments

Beauty treatments such as botox, microblading and fillers can also increase the risk, as they include processes which break the skin and could introduce infection in the blood. They are not recommended.

General lifestyle

Smoking and vaping

Smoking and vaping are not good for your heart. It may surprise you to learn that there is nicotine in almost all vapes which is equally deleterious to heart health.

 

Further reading:

British Heart Foundation - Smoking (opens in new window)

NHS - Quit smoking help and support (opens in new window)

 

Alcohol

The current advice is to stay below 14 units a week and have some drink free days, but for some conditions even this may not be safe, so always check with your ACHD team about what is best for you.

 

Further reading:

NHS - Alcohol support (opens in new window)

British Heart Foundation - Alcohol (opens in new window) 

 

Recreational / illegal drugs

Drugs such as cannabis, opioids, cocaine, ketamine, magic mushrooms, ecstasy / MDMA etc increase the risk of serious cardiac (and other) complications and should not be used.

 

Further reading:

NHS - drug addiction: getting help (opens in new window)

Little Hearts Matter - Illegal drugs (opens in new window)

British Heart Foundation - 'Cannabis linked to damaged heart' (opens in new window)

Talk to Frank

 

Energy drinks

These should be avoided as they can lead to arrhythmia (abnormal fast heart rhythms or palpitations) which may be harmful to your heart health. This risk is greater for people with existing heart conditions.

 

Further reading:

Association of British Dietitians - Energy drinks and young people (opens in new window)

UC Davis Health - How do energy drinks affect your health? (opens in new window)

 

Healthy eating

Healthy eating is important for heart health. Make sure you are eating lots of fresh fruit and vegetables, wholegrains & protein and limit the amount of processed/fast food and sugary snacks you eat.

 

Further reading:

Association of British Dietitians - Heart health (opens in a new window)

 

Hydration

Make sure you are drinking enough water especially in warm weather and exercising. If you have been given a specific advice in relation to your fluid intake it is important that you stick within the guidelines given by your team regarding how much is acceptable for you. If you are unsure, please contact the ACHD specialist team.

 

Sleep

Sleep can have a huge impact on your general wellbeing. It is sensible to try to have a regular sleep pattern and ensure you are getting enough rest.

If you are still struggling after following the advice under self-management talk to your GP.

 

Further reading:

NHS - how to fall asleep faster and sleep better (opens in new window)

Exercise

As everyone is unique, it is important to talk to your ACHD team about your particular mode of exercise.

General advice is available on Somerville Foundation, British Heart Foundation and Little Hearts Matter websites.

Exercise is generally recommended for heart health, but you may need to find out what the guideline limits are for your particular condition by discussing with your consultant.

If you wish to undertake more adventurous activities such as skydiving, scuba diving and bungee jumping then check with the ACHD team first as they may not be safe for your condition.

 

Further reading:

NHS - Staying healthy guidance (opens in new window)

British Heart Foundation - Staying active (opens in new window)

Heart Research UK - Congenital heart disease (opens in new window)

British Heart Foundation - Can I still exercise with a heart condition? (opens in new window)

Sex and pregnancy

Safe sex and contraception

There should be no reason why you cannot safely have sex, however using appropriate protection to avoid both sexually transmitted infection or an unplanned pregnancy is really important, as both infection and pregnancy can place extra demands on your heart. Talk to your consultant about the best mode of reliable contraception for you.

 

Further reading:

NHS - contraception advice for women and birthday people with heart disease (opens in a new window)

British Heart Foundation - will my congenital heart condition affect sex and my relationships? (opens in a new window)

Somerville Heart Foundation - contraception leaflet (opens in a new window)

 

Pregnancy and childbirth

If you are hoping to start a family, it is really important that you talk to your cardiologist in advance. You made need some of the tests for your heart updating to help to plan a safe pregnancy.

During pregnancy your heart has to work harder to support you and your developing baby, so it can be a time of increased risk of complications related to your heart.

However, many women with repaired congenital heart disease have successful pregnancies.

We offer pre-pregnancy counselling in the Rosie Maternity Unit at Addenbrooke’s. In our counselling clinic you have the opportunity to meet with a cardiologist, an obstetrician and an anaesthetist and discuss how your pregnancy would be monitored, and how you might deliver your baby; it’s a great opportunity to ask all the questions you might have!

In pregnancy you will have close and careful follow up and a delivery plan written early.

We individualise care and provide additional scans of a baby’s developing heart alongside our colleagues from Great Ormond Street Hospital in London.

 

Further reading:

Somerville Heart Foundation - pregnancy leaflet (opens in new window)

NHS - congenital heart disease in pregnancy (opens in new window)

British Heart Foundation - pregnancy and your heart: why it's important to plan ahead (opens in new window)

 

Menopause

If you are experiencing symptoms of peri menopause, are in the midst of menopause or are post-menopausal, there may be issues about your health and wellbeing that need additional support. Please do feel able to talk to your team if these issues are impacting on you.

 

Further reading:

Somerville Heart Foundation - Menopause and your heart (opens in new window)

Somerville Heart Foundation - Caroline Wright on Menopause (opens in new window)

 

Driving

You must tell the DVLA and your car insurance provider about your congenital heart condition if you want to drive.  The ACHD team can provide you with information about your specific condition to support your application if needed.

 

Further reading:

Government - Congenital heart disease and driving (opens in a new window)

Pulmonary Hypertension UK - driving with congenital heart disease (opens in a new window)

Little Hearts Matter - driving tips with single ventricle heart condition (opens in a new window)

Compare the Market - a guide to driving with medical conditions (opens in a new window)

 

Insurance

Travel Insurance

If you are planning to travel, we would advise that you obtain suitable, comprehensive insurance and declare all your health conditions including your congenital heart disease, so that you are covered if there are any issues before or during your trip.

There are a number of specialist insurance companies who will cover you with an existing medical condition, it is usually worth shopping around to get the best option for your needs using a comparison site.

When travelling overseas we tend to recommend that you ensure you have enough of your usual medications with you and a copy of your prescription. A copy of your most recent ACHD clinic letter and a copy of your ECG can be helpful too, just in case a situation arises where you require these.

The ACHD team can provide you with information about your specific condition to support your application if needed.

 

Life insurance

It can be difficult to get life insurance with congenital heart disease, so it is really important that you speak to a specialist broker about your condition before you proceed.

You may find you are more limited in your options, and it may cost you more than people without congenital heart disease, but you should be able to get sufficient cover. Use a comparison site to help you find the most suitable provider.

The ACHD team can provide you with information about your specific condition to support your application if needed.

 

Further reading:

British Heart Foundation - life insurance with a heart or circulatory condition (opens in new window)

Somerville Heart Foundation (free to join) - Support and services (opens in new window)

Work and benefits

Employment

Achieving a work / life balance may look different for different people due to the impact of their condition. It is important that you understand how to manage your needs and how to get support and appropriate adjustments if needed. Your ACHD team can help you to work out what might work for you.

 

Further reading:

British Heart Foundation - work and a heart condition (opens in a new window)

British Heart Foundation - living with congenital heart disease (opens in a new window)

Somerville Heart Foundation - telling your employer about your heart condition (opens in a new window)

 

Benefits

You may be eligible for benefits, depending on how your condition impacts on your day-to-day life.

 

Further reading:

British Heart Foundation - can I get financial support or benefits if I have a heart condition (opens in a new window)

NHS - Money, work, benefits and social care guide (opens in a new window)

Government - Benefits (opens in a new window)

Other useful tips

  • Always take your medication and never run out. If you take Warfarin ensure you have your INR checked.
  • Please bring a list of your medication to clinic
  • Take care with alcohol intake as excess can cause heart rhythm problems. Rhythm problems can also be caused by caffeine containing stimulant drinks such as Red Bull, Monster and Relentless.
  • Taking any kind of regular exercise is very beneficial for the health of the whole body. Follow the ‘Talk Test’ (Still being able to talk whilst exercising, despite being breathless). Avoid lifting or pushing heavy weights (“heavy” = generally more than one third of your body weight). If unsure about exercise possibilities, ask the ACHD team
  • Eat a healthy and balanced diet
  • If travelling overseas ensure you have appropriate travel insurance. Always declare your medical conditions.
  • Have annual flu vaccination and pneumonia vaccination every 5 years
  • For female patients careful family planning is important, as pregnancy can be high risk. Speak to your ACHD consultant or specialist nurse for advice. Let us know immediately if you become pregnant.
  • Do not smoke
  • Avoid use of recreational or illegal drugs
     

Useful websites

Here are some useful websites to access further information about your condition:

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