Treating your heart condition.

At least one out of every 125 babies born each year has a heart condition. About half of these babies have a minor ailment and will not need any treatment. The rest will require medical treatment or surgery.

However, not all conditions are discovered in early life. And, regardless of when a diagnosis is made, many CHD patients will need treatment and surgery into adulthood.

Furthermore, some people may need more than one heart operation. For example, if an artificial valve or plastic tube is inserted into the heart as a child, this will need replacing as they outgrow it. This can occur several times. Sometimes just ageing and growth can reduce the effectiveness of the first surgery.

If you are an adult living with a heart defect, you should have access to a cardiologist regularly throughout your life. This is necessary to talk about treatments, medicines, and the ongoing and long-term care of your specific condition. And so you can make the best possible choices for your health.

The right, ongoing medical care will help children and adults with a congenital heart defect to live as healthy a life as possible.

Check out our Frequently Asked Questions on living with and managing a heart condition.

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How do you start an exercise programme which you can stick to, especially if you have previously been sedentary?

Living with a pacemaker.

What is a pacemaker?

A pacemaker is a small electrical device. It sends electrical pulses to your heart to keep it beating regularly and at the right speed. Smaller than the average matchbox, a pacemaker weighs just 20-50g.

With wires that attach to your heart, it emits electrical impulses that are programmed in response to your body’s needs. Some send out electrical impulses all the time, while others only activate when needed.

How common are pacemakers?

In the UK, thousands of pacemakers fitted each year and pacemaker implantation is one of the most common types of heart surgery. Having a pacemaker can vastly improve your quality of life and can be life-saving.

When do you need a pacemaker?

Symptoms that indicate that a pacemaker might be needed include:

  • An abnormally slow heartbeat
  • An abnormally fast heartbeat
  • Irregular heartbeats (tachycardia)
  • Cardiac arrest.

How is a pacemaker fitted?

Getting a pacemaker implanted is a relatively straightforward process.

Most pacemakers are fitted just under the collar bone and will have one or more leads which are passed into the heart via a vein.

The type of pacemaker fitted will depend on your specific condition.

The procedure tends to be done under local anaesthetic, which means you’ll be awake during the surgery. You may be prescribed a very mild sedative so that you feel relaxed.

Surgery takes about an hour, and most people can leave the hospital the next day.

A pacemaker might feel a bit uncomfortable at first, but most people soon get used to it.

It is recommended that strenuous activities are avoided for around four to six weeks after having a pacemaker fitted. After this, you should be able to return to normal physical activities including exercise and sport.

You will need to attend regular check-ups to make sure your pacemaker is working correctly.

With the right, ongoing medical care people with pacemakers can have a good quality of life.

What do you need to know about scans?

When might you need a scan?

There are many different tests to diagnose a heart condition or to find out how your heart is doing.

A scan might be needed if your doctor suspects that there might be problems with the valves or chambers of your heart, or if they think that heart problems are the cause of symptoms such as shortness of breath or chest pain.

A  scan can:

  • Diagnose structural abnormalities such as holes in the heart chambers or leaking or narrowed valves
  • Measure the function of the heart muscle
  • Detect fluid that may have collected around the heart.

Types of scan

  • A transthoracic echocardiogram (commonly known as an Echo). This is a scan of the heart using a machine, a probe and gel. The probe is placed on the chest wall and ultrasound pictures are taken of the heart.
  • A transoesophageal echocardiogram (commonly known as a TOE). This is also an ultrasound scan of the heart, but the probe is passed into the oesophagus
  • Magnetic Resonance Imaging (MRI). MRI is  a way of creating detailed images of your heart and blood vessels. Unlike an X-ray, an MRI scan does not use radiation.
  • Myocardial perfusion scan (MPS). MPS uses a small amount of radioactive substance to create images which show blood flow to the heart muscle. The scan usually consists of stress and rest periods so that doctors can see the effects of physical exercise on your blood flow.

Once the scan is completed, the results are sent to the doctor who has requested the test, to help them to make a decision about your care.

How long does a scan take?

Scans can be performed on outpatients. They can be done in as little as 30 minutes. However, some appointments can take a few hours, and, if you’ve been given a sedative, you won’t be able to drive and will need to be taken home by a friend or relative.

However, it is unlikely that the results will be available immediately. Usually, your doctor will discuss the results with you in a couple of weeks.

To prepare for a scan

  • Talk to your doctor if you have any medical implants (e.g. a pacemaker), stents, or if you are pregnant
  • Wear loose clothing that is easy to remove. You will be given a gown or sheet to maintain your dignity
  • You might be advised not to have any food or drink containing caffeine for 24 hours before the test
  • Be prepared to lie still for about 30 – 60 minutes
  • Let the sonographer or doctor know if the scan is causing too much discomfort.

What do you need to know about heart transplants?

A heart transplant is when a diseased heart is replaced by a healthy human heart, provided by a donor. Over the last 50 years, the success of cardiac surgery for the treatment of CHD has avoided or delayed the need for heart transplantation for many children and adults.

When might you need a transplant?

Transplantation may be considered if you have severe heart failure. If your condition is serious, and if other treatments are not improving or controlling your symptoms. However, you will first need to undertake a transplant assessment.

If you are considered suitable for a heart transplant, you will be added to a waiting list.

How long will you have to wait for a transplant?

Around 50% of people accepted onto the waiting list receive a transplant within three years. Unfortunately, suitable hearts do not become available for everyone. But 8 out of 10 people do now receive the heart transplant they need.

What happens during heart transplant surgery?

You will be given a general anaesthetic before the procedure begins and be connected to a heart-lung bypass machine.

During the surgery, the surgeon will cut across your breastbone to access your heart. They will then work on transplanting your new heart.

Once your new heart starts beating the heart-lung bypass machine will be switched off.

How long does heart transplantation surgery take?

Heart transplant surgery usually takes between four and six hours. After the operation, you will spend a short period in intensive care, and you’ll be monitored in the hospital until you are well enough to go home.

Find out what it’s like waking up in intensive care.

Most people leave hospital within about a month of the operation, but you may need to stay longer depending on your condition.

Living with a heart transplant

Heart transplantation has become a standard treatment for end-stage heart failure, with excellent survival rates. However, in the months following surgery, you will need to spend a lot of time going to and from the hospital. Your breastbone should be fully healed in about three to four months, and you should avoid activities that require pushing, pulling or heavy lifting until then.

The International Society of Heart and Lung Transplantation database shows excellent long-term survival for CHD patients after a transplant.

What do you need to know about heart medication?

Why might you need heart medication

Heart medication can keep your symptoms under control, and even prevent or treat a heart condition. Your doctor, pharmacist or nurse will advise you on the most appropriate medicine for your condition. If you are an adult CHD patient, you may be on more than one type of medication.

Different types of heart medication

The most common heart medications include:

  • Angiotensin-converting enzyme inhibitors (ACE inhibitors)
  • Angiotensin-II antagonists (ARBs)
  • Angiotensin-II receptor-neprilysin inhibitor (ARNi)
  • Antiarrhythmic medicines
  • Anticoagulant medicines (e.g. Warfarin)
  • Antiplatelet medicines
  • Beta-blockers
  • Calcium channel blockers
  • Cholesterol-lowering medicines (e.g. statins)
  • Digoxin
  • Diuretics
  • Nitrates.

What to ask your doctor?

When given a new prescription, speak to your doctor about:

  • Its potential benefits and risks
  • How to take it safely and what to do if you miss a dose
  • Whether it will cause side effects
  • What to do if you notice any side affects
  • Whether the medication might affect other medicine you are taking at the same time
  • Whether it’s okay to continue taking other medicine (including any over-the-counter medicines or supplements).

Helping you make healthy decisions

Get your Personal Health Passport and manage your heart condition more effectively.


With your help, we’ve helped fund new and improved treatments for congenital heart disease. we opened the UK’s first dedicated Congenital Heart Research Centre. we’ve organised receptions at the House of Lords and House of Commons, a film première, concerts, parachute jumps, marathon runs, annual sponsored walks and masquerade balls. we ensure that adult CHD patients enjoy access to every opportunity, are free from discrimination, and are fully supported throughout their lives. we’ve staged annual conferences, regional patient information days and workshops throughout the UK. we’ve published a range of leaflets for CHD patients on a wide-range of topics. we’ve launched a Freephone patient helpline to provide practical advice, a listening ear, and emotional reassurance at times of stress. we’ve created online networks where congenital heart patients can connect with each other. we successfully applied for a Comic Relief grant to help develop mental health support services. we’ve contributed to adult congenital heart disease nurse training days and taken part in various study days and conferences for medical and health professionals. we’ve established a benevolent fund for members who are in financial hardship. we’ve organised residential weekends and outward bound holidays for teenagers and adults, providing congenital heart patients with the opportunity to meet and gain support from each other.

Just think what else we could do if you donate, fundraise or volunteer for us.