Infective endocarditis (IE) is a relatively uncommon but potentially fatal infection concerning patients with congenital heart disease (CHD) that you must be aware of and understand, so that you can help to protect yourself. It is caused by bacteria entering the blood stream either from the mouth, gut or the skin, which then settle on the lining of the heart (often where there is turbulent blood flow e.g. around narrow valves, heart shunts and/or on prosthetic material used at previous operations) causing an infection.
Patients with IE need several weeks of intravenous antibiotics and hospital admission to eradicate the infection; some patients may require an urgent cardiac operation, whereas sadly a minority may not survive it, no matter what we do. This is why it is important that you know about it and, most importantly, how best to prevent it from happening.
Infective endocarditis usually presents itself like a 'flu-like' illness, fevers, night sweats, weight loss, that has no obvious focus for the infection, like a sore throat, and lasts longer than the usual few days. The diagnosis of IE is made using a combination of: patient history of such symptoms for those at risk; taking blood samples to isolate the organism that is causing IE on blood cultures; and heart imaging, where the infection can be seen.
If you experience similar symptoms as above it is very important that you do not take nor accept antibiotics. This is because oral antibiotics are not strong enough to treat IE and they may deem blood cultures false negative. This in turn makes the diagnosis difficult or doubtful and compromises specific intravenous antibiotic therapy, essential to full recovery. You must tell the doctors that you have CHD and they should first take your bloods for blood cultures, as well as a c-reactive protein (CRP) test (an infection marker).
Healthy diet, daily exercise and avoid smoking
We are what we eat. Eat healthy/whole foods, take up cooking as a hobby, avoid processed and comfort food, and optimise your weight (your Body Mass Index (BMI) should be between 18.5 and 24.9; visit www.nhs.uk for a BMI calculation and further information on diet).
Exercise is the best medicine. Daily exercise should boost your immune system, in a way similar to keeping a healthy diet. You should exercise daily, which will not only strengthen your immune system, but boost your well-being, too. The Ancient Greek phrase 'healthy mind in a healthy body' still holds true 25 centuries on.
Smoking and processed fatty food cause damage to the soft tissues of the mouth (gums) and to the teeth. A chronic inflammation that follows affects the way the inner layer of vessels (called the endothelium) of the heart, coronary arteries and other organs function and make patients - and all of us - more susceptible to disease. It also allows freer entry of bacteria into the blood stream, increasing the risk of IE for patients with CHD. Visit the NHS website for advice, support and resources to help you quit smoking.
Gum disease and tooth decay can cause infective endocarditis. Brush your teeth twice a day using fluoride toothpaste and see your dentist for dental cleaning every six months. More importantly, eat healthy and avoid smoking (see above).
Infections on the skin
Millions of bacteria sit on your skin, so taking good care of your skin is essential. If you suspect infection on a cut or graze (i.e. one that is not healing normally) or have infected eczema, infections around fingers and toe nails (called paronychia) or chickenpox spots that become septic, contact your doctor for further advice immediately. Habits such as nail biting are potential sources of bacteraemia.
Body piercing and tattoos
If you can, avoid cosmetic procedures that involve body piercings or tattoos, as these can increase the chances of infective endocarditis.
While intravenous antibiotics are necessary for treating IE, the role of oral antibiotics in preventing it is unclear. Previously, patients with CHD, who are at high risk of endocarditis, were offered antibiotics for certain dental and medical procedures. The guidelines on this have changed in recent years, so please consult your ACHD provider for specific advice concerning yourself as an individual. It is far more important to follow a healthy diet, good dental hygiene, avoid smoking, exercise daily and look after your skin, as discussed above, than simply taking antibiotics.
Produced by Professor Michael Gatzoulis and Ms Hajar Habibi, June 2020. We would value your feedback on how we can do a better job in educating and empowering ACHD patients to lead richer and more independent lives. Please email us on firstname.lastname@example.org with your comments or feedback.