Pulmonary regurgitation (leaky pulmonary valve): symptoms, tests and treatment

The heart has four valves that keep blood moving in one direction. The British Heart Foundation likens them to a one-way traffic system, with small flaps called leaflets that open and close like doors with every heartbeat. The pulmonary valve sits between the right side of the heart and the pulmonary artery, which carries blood to the lungs to pick up oxygen.

Heart valve disease happens when a valve does not work as it should. The NHS describes two main ways this can happen: the valve does not open fully (stenosis) or it does not close fully and may be leaky (regurgitation). In pulmonary regurgitation the pulmonary valve does not close properly, so blood that has been pushed towards the lungs leaks back into the heart instead of moving forwards.

When a valve leaks, the NHS explains that the heart has to work harder to pump blood around the body. A small leak can be tolerated for many years. A larger leak, over a long time, puts extra strain on the right-sided pumping chamber.

The NHS lists several general causes of heart valve disease: being born with a heart problem (congenital heart disease), changes to the heart as you get older, conditions that affect the heart such as rheumatic fever, cardiomyopathy or endocarditis, and damage from a heart attack. The British Heart Foundation adds that the main causes include being born with an abnormal valve, and infection of the heart.

In practice, the situation most often discussed for the pulmonary valve is surgery for a congenital heart problem. Tetralogy of Fallot is a congenital heart defect that includes a narrowed pulmonary valve. The British Heart Foundation explains that complete repair usually includes widening the narrowed pulmonary valve and artery, and that part of the thickened pulmonary valve may be removed. Widening the valve relieves the obstruction but can leave it leaky, which is why pulmonary regurgitation is described as a common problem for people with repaired tetralogy of Fallot.

This means many adults with pulmonary regurgitation already know about their heart history and are already under specialist follow-up. Others may first hear about it as a finding on a scan or when a doctor notices a heart murmur.

The NHS says some people with heart valve disease do not have any symptoms, and that it is sometimes found by chance when a doctor hears an unusual sound, a heart murmur, through a stethoscope. When symptoms do occur, the NHS and the British Heart Foundation list shortness of breath, tiredness or weakness, dizziness, palpitations, swollen ankles and feet, and chest pain or discomfort.

For people with a leaky pulmonary valve after tetralogy of Fallot repair, the British Heart Foundation says the extra strain can cause symptoms such as feeling more tired and out of breath, and that over time it can increase the risk of other heart conditions. This is one reason regular review matters even when you feel well: the British Heart Foundation notes that changes in the heart may appear before symptoms do.

• See a GP if you are regularly short of breath, feel tired, weak or dizzy during normal activities, have palpitations that keep coming back or are getting worse, have swollen ankles or feet, or have chest pain that comes and goes (NHS advice).

• Call 999 or go to A&E if you are struggling to breathe, have sudden chest pain that spreads to the arms, back, neck or jaw or lasts more than 15 minutes, or have chest pain with shortness of breath or palpitations (NHS advice).

• The British Heart Foundation also advises an urgent appointment with your doctor for worsening or new symptoms, an unexplained temperature, night sweats, unexplained weight loss, or feeling unwell for two to three weeks.

A GP will listen to your heart and may arrange tests or refer you to a cardiologist, according to the NHS. The British Heart Foundation says the most common test is an echocardiogram, and that you may have other tests such as a chest X-ray, an ECG, blood tests, a cardiac CT scan, cardiac MRI or an angiogram.

An echocardiogram uses ultrasound to make a moving picture of the heart. The NHS says the most common type is a transthoracic echocardiogram, in which a sonographer moves a probe over the chest with gel, and the scan takes around 30 to 40 minutes. Sometimes a contrast agent is injected to make the heart show up more clearly. A transoesophageal echocardiogram, where a thin tube is passed into the gullet, is sometimes used for a more detailed image.

The leak is usually described as mild, moderate or severe. The British Heart Foundation says mild disease with no symptoms may need no treatment, with check-ups including an echocardiogram every 3 to 5 years, whereas moderate or severe disease without symptoms means a check-up and echocardiogram every 6 to 12 months. New or worsening symptoms should prompt an earlier appointment.

The NHS says mild heart valve disease without symptoms may not need treatment, only regular check-ups. If you have symptoms or severe disease, treatment may involve medicines, surgery or both. The British Heart Foundation explains that medicines can reduce the workload of the heart and improve symptoms, and that surgery will either repair or replace part or all of the valve.

The type of surgery depends on the cause of the valve problem, its effect on your heart and your quality of life, the British Heart Foundation says, and a specialist team will discuss the options. For a repaired congenital heart condition this decision is normally made in a specialist congenital heart disease service. The sources used for this page do not give figures for when a pulmonary valve should be replaced, so that timing is a matter for your own cardiology team.

The British Heart Foundation says many people live well with heart valve disease and that healthy lifestyle choices can help stop it getting worse: exercising safely, keeping a healthy weight, eating a balanced diet, stopping smoking and cutting down on alcohol. It suggests asking your doctor or nurse specialist about exercise, work, holidays and flying, driving, contraception, having children, and antibiotics and going to the dentist.

For people with repaired tetralogy of Fallot, the British Heart Foundation says that if there is no obstruction or leak you may be able to enjoy exercise fully, but if complications such as a leak remain, some activities may not be suitable, so it is best to talk to your cardiology team. People with congenital heart conditions also have an increased risk of endocarditis, and the doctor or dentist might recommend antibiotics before or after some procedures.

The NHS advises anyone with heart valve disease who is pregnant or planning pregnancy to get advice from a heart specialist, since pregnancy can make symptoms worse. Most people can have a safe pregnancy with extra monitoring.

Heart valve disease and congenital heart disease are managed through NHS cardiology and specialist adult congenital heart disease services, which is where scans, monitoring and any valve procedure are normally arranged. Some people also see a cardiologist privately for an echocardiogram or a second opinion. If you do, it helps to share your NHS records so that scans can be compared with earlier ones, and your NHS team should remain aware of any change to your plan.