In 1998, Andy Cook was told he had just two days to live, but when a donor heart became available, a transplant saved his life. He now works full time in an outdoor job he loves, and travels the world to meet other transplant recipients.

Andy, from Halesowen in the Midlands, was 37 when he developed cardiomyopathy – a disease that causes the heart to become enlarged.

“I had a cough that my doctor couldn’t cure and, after several visits, I became more and more short of breath,” Andy says. “I was admitted to the Wordsley Hospital in Stourbridge, where I was diagnosed as having fluid on the chest that was affecting my heart. A little later, I was told I had cardiomyopathy.”

Six days after he was admitted to hospital, Andy had two heart attacks. He was treated, but his condition got worse and he was sent to Queen Elizabeth Hospital in Birmingham for transplant assessment. He was told by his consultant that a transplant was needed. He was put on the transplant list and sent back to the Wordsley to wait.

“Over the next few weeks, my condition worsened and the need for a donor heart became more desperate. My weight plunged from 11 stone to just 7.”

With time running out, a donor heart became available, and Andy was transferred back to the Queen Elizabeth Hospital.

“The last thing I remember before the operation was the needle being put into the back of my hand. When I woke up, I was being transferred from intensive care to a ward after two days of sedation.”

Bit by bit, Andy regained his strength, but his journey back to health had some setbacks.

“After I had been allowed home, I spent the next six weeks in and out of hospital with rejection, a stomach problem, a collapsed lung and another related problem. I finally came out of hospital the week before Christmas 1998 and returned to work as a gardener 13 weeks after the transplant.

“I genuinely believe that if you follow medical advice, you will be back to your previous fitness and way of life. I am very grateful for all the help and treatment I received.”

A heart transplant is carried out under general anaesthetic (where you are unconscious) and normally takes between four and six hours.

You will be connected to a heart bypass machine, which acts as an artificial heart, circulating and oxygenating your blood while the transplant is being performed.

A thin flexible tube called a catheter will be inserted to drain your bladder during and after the operation.

The procedure involves the following steps:

• A cut (incision) is made over your breastbone and the bone separated, allowing the surgeon to access your heart.
• Your heart is removed, leaving behind a portion of the right and left atria (the two upper chambers of the heart).
• The new heart is then connected to the aorta (main artery from the heart), pulmonary artery and the remaining part of the atria.

When the heart begins to function and the medical team is satisfied, you will be taken off the bypass machine.

After the transplant

When the procedure is over, there will be drains (tubes) coming out of your chest. Your breastbone will have been closed with stainless steel wires, and the tissues and skin will have been closed with dissolvable stitches.

You will wake up in the intensive care unit, under sedation and attached to a ventilator to help your breathing.

Once your team are happy with your condition, you can be moved to a high-dependency ward for further monitoring.

Read more information about recovering from a heart transplant.

If it’s thought you could benefit from a heart transplant, you will be invited to your local hospital for an initial assessment.

The assessment is to check whether you are a suitable candidate (see below). 

Further assessment

If you are thought to be suitable, following an initial assessment, you will probably be invited to your nearest transplant centre to have a more in-depth assessment.

In England, there are a number of specialist transplant centres that carry out heart transplants. They are:

• Great Ormond Street Hospital for Children and the Royal Brompton and Harefield Hospital, which are both in London
• University Hospitals Birmingham NHS Foundation Trust
• the Freeman Hospital in Newcastle
• the Northern General Hospital in Sheffield
• the Papworth Hospital in Cambridge
• University Hospital of South Manchester

The purpose of having a more in-depth assessment is to build up a more detailed picture of your current state of health, and to check whether there are any underlying problems that could affect your suitability for a transplant.

You will also have the opportunity to meet the transplant team and to find out more about the procedure.

Before visiting the transplant centre, you may find it useful to write a list of questions you would like to ask the transplant team.

Tests

As part of your assessment, you may have some of the tests described below:

• blood tests and urine tests to check for viral or bacterial infections, and to assess the health of organs, such as your liver
• chest X-rays
• blood pressure tests
• a lung function test, which uses a machine called a pulse oximeter to measure the amount of oxygen in your blood
• computerised tomography (CT) scans and magnetic resonance imaging (MRI) scans, which are used to check the health of certain organs, such as your heart and lungs
• coronary angiography – a special type of X-ray used to study the inside of your heart
• an electrocardiogram (ECG) – which measures the electrical activity of your heart

The whole assessment process usually takes two to four days to complete.

Final decision

The final decision about whether you are suitable for a heart transplant is not made by one person, it is a joint decision made by the transplant team as a whole.

You may be informed about the decision before leaving the transplant centre. However, if your case is not straightforward, it may be several weeks before you are told the decision.

Your transplant team may decide you are:

• suitable for a transplant and ready to be placed on a waiting list (see below)
• suitable for a transplant but your condition does not require a transplant – you will usually be monitored in case your condition gets worse
• unsuitable for a transplant – the reasons will be explained in detail by your transplant team (see below)

In some cases, further tests are necessary to make a final decision, or you may be referred to a different transplant centre for a second opinion.

Waiting for a suitable donor

It may be several months before a donated heart of the right size and blood group becomes available.

Your transplant centre can offer support, guidance and information while you wait for a suitable donor to be found. They will be fully aware that many people find this a frustrating and frightening experience.

In some cases, a planned transplant might not go ahead. This may be because your health deteriorates to such an extent that a transplant is no longer considered a safe or effective treatment.

Unfortunately, some people die before a donated heart becomes available.

When a heart transplant is not suitable

There are more transplants needed than donor hearts available, so the assessment process used to decide who can have a heart transplant is strict.

The operation also places a major strain on the body, which means the risks may outweigh the potential benefits for many people.

Therefore, a person is usually only considered a suitable candidate if they are in relatively good health (aside from the condition for which they require the transplant).

You will usually be considered unsuitable for a heart transplant if you:

• are over the age of 65 – though exceptions can be made
• have an incurable form of cancer
• have another serious health condition unrelated to your heart, such as chronic kidney disease
• have HIV and AIDS – medications needed after donation will lower your immunity, which could be extremely dangerous if you have HIV or AIDS
• are currently misusing alcohol or drugs
• are currently smoking
• have a long-term mental health condition, such as schizophrenia, which means it is unlikely you will regularly take medication or attend necessary appointments during the recovery period

The waiting list

Once you are on the active waiting list, the transplant centre may give you a pager so you can be contacted at short notice.

A suitable heart may be available within a few days, or it could take years. The length of time you wait will depend on your blood group, donor availability, how many other patients are on the list and how urgent their cases are.

Around one in three patients on the transplant list are too ill to go home and need to stay in hospital while they wait for a donor heart. Priority is usually given to these patients.

While you wait, you will be cared for by the doctor who referred you to the transplant centre. Your doctor will keep the transplant team updated with changes to your condition. Another assessment is sometimes necessary, to make sure you are still suitable for transplant.

Getting the call

When a suitable donor heart is found, the transplant centre will contact you and ask you to go to the centre.  

When you hear from the transplant centre:

• do not eat or drink anything
• take all current medicines with you
• take a bag of clothes and essentials for your hospital stay

At the transplant centre, you will be reassessed quickly to make sure no new medical conditions have developed. At the same time, a second medical team will examine the donor heart.

For the transplant to have the best chance of success, the donor heart has to be transplanted within four hours of being removed from the donor.

When the medical team has confirmed the heart is suitable, you will be given a general anaesthetic. The procedure must be carried out as quickly as possible for the transplant to have the best chance of success.

A heart transplant is an operation to replace a damaged or failing heart with a healthy human heart from a donor who has recently died.

When a heart transplant is needed

A heart transplant may be needed when a person’s heart can no longer work effectively, potentially putting their life at risk.

A heart transplant is usually recommended if a person:

• has severe heart failure – when the heart is having trouble pumping enough blood around the body
• is expected to die within in a year without a transplant
• has not responded to conventional treatments for heart failure (read more about the treatment of heart failure)

In a small number of cases, a heart transplant may also be performed in young children born with a serious heart defect. This is known as congenital heart disease.

However, you won’t be considered if you haven’t acted on your doctor’s advice – to quit smoking, for example – or taken the medication prescribed for you. Also, you may not be suitable for a heart transplant if you have poor kidney function. This is because some of the medication needed following the operation has an adverse effect on the kidneys.

The operation

When you receive the call, you must go to the transplant centre immediately. The donor heart will need to be transplanted within a few hours of being removed from the donor.

During a heart transplant, a heart bypass machine will keep your blood circulating.

A cut is made in the middle of the chest. Then your own, failed heart is removed and the donor heart is connected to the main arteries. The heart should then begin beating normally.

A heart transplant normally takes between four and six hours.

Read more about getting ready for a heart transplant and how a heart transplant is performed.

Risks

A heart transplant is a complex and risky procedure.

Possible complications include:

• failure of the transplanted heart to pump properly (primary graft dysfunction)
• the body rejecting the donor heart

Due to advances in treatment, the risks associated with having a heart transplant have been reduced, but not eliminated.

It is estimated that around 1 in 10 people will die due to complications in the first year after surgery. Most deaths occur in the first 30 days after surgery, and after this time the chances of survival improve dramatically.

Read more about the risks associated with a heart transplant.

Recovery

It can take several months to recover from the effects of a heart transplant, and frequent follow-up appointments at the transplant centre will be needed. 

Immunosuppressant medication will also be needed to prevent the body rejecting the donated heart. Immunosuppressants are powerful medications that can have a range of different side effects, including making you more vulnerable to infection and weakened bones (osteoporosis).

Read more about recovering from a heart transplant.

How common are heart transplants?

Heart transplants are rarely performed in the UK, mainly due to a lack of suitable donors.

There were 197 heart transplants performed in the UK between 2012 and 2013.

After a heart transplant, you will be moved to the intensive care unit to recover. You will be under sedation and connected to a ventilator to help your breathing.

The specialist team will constantly check and monitor your condition. It may take anything from a few hours to a few days before you are able to breathe without the aid of a ventilator.

During this time you will be given fluid and medication directly into your veins (intravenously). When your condition is stable, you will probably be moved to a high-dependency ward to continue your recovery.

You will normally be discharged from hospital two to three weeks after surgery.

Follow up appointments

You will be asked to stay near the transplant centre for one month after your operation. For the second month, you will need to visit weekly for four weeks.

After that you will have a blood test every six weeks, and will be seen at the transplant centre every three months for the rest of your life.

Getting back to normal

For the first six weeks after surgery, you need to avoid pushing, pulling or lifting anything heavy. You will be encouraged to take part in a cardiac rehabilitation programme involving exercises to build up your strength.

You will usually be advised not to drive for between 6 and 12 weeks after your transplant, but ask your doctor for more information.

Most people can return to work after a heart transplant, but the timeframe depends on your job and how well you recover.

If you plan on going on holiday, it may help to wait until the first year of frequent follow-up appointments has finished. Speak to your doctor for more advice on travelling after a heart transplant.

Immunosuppressants

After having a heart transplant, one of the biggest risks is that your immune system will regard the new heart as a foreign object and start attacking it. This is known as rejection.

For more information about rejection, read our page on risks of a heart transplant.

To prevent your new heart from being rejected, you will need medication, known as immunosuppressants, to suppress your immune system.

Immunosuppressants work by interfering with the normal activities of specialised white blood cells called T-cells.

The immune system uses T-cells to attack foreign cells, such as bacteria, viruses and, in the case of transplants, donated tissue, such as your new heart and lungs.

Most people who have a heart transplant need to take a combination of two or three different immunosuppressants for the rest of their life. However, if you respond well to treatment, the doses of immunosuppressants may be lowered over the long term.

Immunosuppressants are powerful medications that can have a range of side effects. 

Possible side effects include:

• increased vulnerability to infection
• weakened bones (osteoporosis)
• muscle weakness
• feeling sick (nausea)
• being sick (vomiting)
• stomach ulcers
• blurred vision
• insomnia
• weight gain
• mood swings
• shaking of the hands
• acne

While these side effects may be troublesome, you should never stop taking or reduce the recommended dose of immunosuppressants. If you do, it could lead to your heart and lungs being rejected.

Your transplant team may be able to provide additional treatments to help reduce any side effects you experience after taking immunosuppressants.

A heart transplant is a major operation and there is a risk of several complications.

Risks of a heart transplant include:

• rejection of the donor heart
• infection
• failure of the transplanted heart to pump properly (primary graft dysfunction)
• narrowing of arteries connected to the new heart

These complications are explained in more depth below.

After a heart transplant you will need to take immunosuppressants and other medications, which may lead to side effects such as:

• problems with the kidneys
• high blood pressure (hypertension)
• diabetes
• an increased risk of cancer

Rejection

One of the most common complications of a heart transplant is rejection of the donor heart. Rejection occurs when the immune system – the body’s defence against infection – mistakes the transplanted heart for a foreign body and begins to attack it.

This can often occur even if you are being treated with medication to suppress your immune system (immunosuppressants)

There are two types of rejection:

• acute rejection – where rejection occurs just after surgery
• chronic rejection – where rejection occurs many months or years after surgery

Signs that your body may be rejecting your heart include:

• extreme tiredness (fatigue)
• swelling of your arms and legs
• weight gain
• a high temperature (fever) of 38°C (100.4°F) or above
• palpitations – the sensation of your heart beating fast or irregularly
• shortness of breath 

If you have any of these symptoms, contact your GP or your transplant centre as soon as possible. Rejection can usually be treated by increasing your dose of immunosuppressant medication.

Infection

Immunosuppressant medication will weaken your immune system and make you more vulnerable to infection. The three most common types of infection that affect people who have had heart transplants are:

• bacterial infection
• fungal infection
• cytomegalovirus (CMV) infection

CMV is a common virus that is part of the herpes family of viruses.

Bacterial infection

A bacterial infection of the lungs (pneumonia) is common in the first few weeks after a transplant.

Symptoms of pneumonia include:

• breathing difficulties
• coughing up phlegm (thick mucus) that may be yellow, green, brown or blood-stained
• wheezing
• a rapid heartbeat (tachycardia)
• a high temperature (fever) of 38°C (100.4°F) or above
• pain in your chest

If you think you may have pneumonia, contact your GP or transplant team. The condition will need to be treated with antibiotics.

To help prevent infection, you may also be given antibiotics to take for the first few weeks after your transplant.

Read more about treating pneumonia.

Fungal infections

Fungal infections are not as common as bacterial infections, but they can also sometimes develop in the first few weeks after having a transplant.

Less serious fungal infections can develop in the skin, nails, mouth, feet and, in women, the vagina.

Symptoms of these fungal infections will depend on what part of your body is affected, although shared symptoms include:

• scaling and redness of the skin
• itchiness
• discharge of a thick white fluid from the vagina (in cases of vaginal infection)

More serious fungal infections can develop inside the body (invasive fungal infections), such as in the lungs (fungal pneumonia) or blood stream.

Symptoms of an invasive fungal infection include:

• a high temperature (fever) of 38°C (100.4°F) or above
• shortness of breath
• dizziness
• chest pain
• a change in mental behaviour, such as confusion or disorientation

You should contact your GP or transplant centre as soon as possible if you think you may have an invasive fungal infection.

Fungal infections can be treated using antifungal medicines. As a precaution, you may be given a course of anti-fungal medication to take for several months after your transplant.

Cytomegalovirus infection

Cytomegalovirus (CMV) infections are common during the second month after a transplant.

Symptoms of a CMV infection include:

• a high temperature (fever) of 38°C (100.4°F) or above
• shortness of breath
• the appearance of large, painful mouth ulcers; visual disturbances, such as blind spots; blurring; and floaters (tiny black or shadowy dots or lines that appear to be floating in your field of vision)

If you think you have a CMV infection, you should contact your GP or transplant centre as soon as possible.

CMV infections can be treated with antiviral medication. As a precaution against CMV, you may be given a course of antiviral medication to take for several months after your transplant.

Read more about treating cytomegalovirus infections.

Preventing long-term infection

After having a heart-lung transplant, you will probably need immunosuppressants for the rest of your life, because you will be more vulnerable to infection. This means you will have to take more precautions than most people. These include:

• avoiding crowds (if this is unavoidable, you should wear a face mask, particularly during the first year after your transplant)
• avoiding close contact with anyone known to have an infection
• avoiding anything that could damage your lungs and make them more vulnerable to infection, such as smoke, chemical sprays or chemical fumes
• keeping your house very clean to prevent the spread of infection

Read more about how to prevent germs spreading.

Primary graft dysfunction

One of the most serious complications that can occur after a heart transplant is that the donated heart fails to work and does not start beating, or stops beating soon after the surgery is completed.

This is known as primary graft dysfunction. It is the leading cause of death in the first 30 days after surgery, and occurs in around 1 in 32 cases.

Primary graft dysfunction can occur for a number of reasons, such as:

• damage to the donor heart (as soon as the brain dies, the heart will become progressively damaged, even though it is being kept pumping with a ventilator)
• underlying problems with blood vessels connected to the donor heart

Treatment options for primary graft dysfunction include:

• using medications to support the new heart
• continuing to use a ventilator to help oxygen reach the blood
• a bypass circuit (extracorpopreal cardiopulmonary membrane oxygenator) – to keep your circulation working until the new heart improves

If treatment can be provided as soon as the heart begins to fail, then the outlook is often favourable. One specialist unit reported being able to save around four out of every five lives in patients who developed primary graft dysfunction.

Narrowing of the arteries

Narrowing and hardening of the small and medium-sized blood vessels connected to the donor heart is a common long-term complication of a heart transplant.

The medical term for this complication is cardiac allograft vasculopathy (CAV).

CAV is thought to develop in:

• 1 in 12 heart transplant patients during the first year after surgery
• 1 in 3 patients during the first 5 years after surgery
• just under half of all patients (43%) during the first 8 years after surgery

Known risk factors for CAV include:

• experiencing acute rejection shortly after the transplant
• developing an infection shortly after the transplant
• receiving a donation from someone with high blood pressure

CAV is potentially serious as it can restrict the supply of blood to the heart, which can sometimes trigger a heart attack or lead to a recurrence of heart failure.

Because of this risk, it is usually recommended that you have regular coronary angiographies (a special type of X-ray used to study the inside of your heart) to check the heart is receiving enough blood

Treatment options for CAV include:

• statins – a medication that can reduce blood cholesterol levels, which in turn can improve blood supply to the heart
• calcium channel blockers – which can help widen blood vessels, thereby increasing blood flow to the heart