Overview

Considerations

As donor hearts are scarce, you'll need to be assessed carefully to determine whether a heart transplant is suitable if your doctor thinks you could benefit from one.

When heart transplants are considered

A heart transplant may be considered if:

• you have significant heart failure, where the heart is having trouble pumping enough blood around the body (usually the result of coronary heart disease, cardiomyopathy or congenital heart disease)
• you have severe symptoms, despite medical treatment
• you could die within the next few years if you do not get a transplant
• you're otherwise fit enough to survive major surgery

If it's thought you could benefit from a heart transplant, you'll be assessed at a transplant centre to check whether having one is suitable.

Assessment for a heart transplant

An in-depth assessment at a transplant centre is needed to find out more about your health and check whether there are any underlying problems that could affect your suitability for a transplant.

This will usually involve having several tests, such as:

• blood tests and urine tests to check for infections and assess the health of organs, such as your liver
• chest X-rays
• blood pressure tests
• lung function tests
• a CT scan to check the health of organs like your heart and lungs
• an ultrasound scan to assess your kidneys  (immunosuppressant medicines can cause kidney problems, so it's important that the current state of your kidneys is checked)
• cardiac catheterisation and coronary angiography – a special type of X-ray used to study the inside of your heart
• an electrocardiogram (ECG) – this measures the electrical activity of your heart

You'll also have the opportunity during your assessment to meet the transplant team and find out more about the procedure.

You may find it useful to write down a list of questions you would like to ask the transplant team before your visit.

Who might not be suitable for a heart transplant

Not everyone who could benefit from a heart transplant will be suitable for one.

This is because the operation places a major strain on the body and may mean the risks outweigh the potential benefits.

For example, you may be considered unsuitable for a heart transplant if you:

• have irreversible damage to other organs, such as your kidneys
• have an active infection – this will need to be treated first, if possible
• have cancer – treatment to bring it under control (known as being in remission) will usually be needed before a transplant is considered
• have damaged blood vessels as a result of diabetes
• are obese – you may need to lose weight before a transplant is considered
• drink alcohol excessively or smoke – you may need to stop before a transplant is considered

Age is not a factor in determining whether a heart transplant is suitable, although they're rarely performed in people over the age of 65 because they often have other health problems that mean a transplant is too risky.

Decision to recommend a transplant

The final decision about whether you're suitable for a heart transplant is a joint decision made by the transplant team.

You may be informed about the decision before leaving the transplant centre.

But if your case is not straightforward, it may be several weeks before you're told the decision.

The transplant team may decide you are:

• suitable for a transplant and ready to be placed on a waiting list – read more about being on the heart transplant waiting list
• suitable for a transplant, but your condition does not require a transplant – you'll usually be monitored in case your condition gets worse
• unsuitable for a transplant – the reasons will be explained in detail by your transplant team

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 list

Because of the lack of available hearts, it's rarely possible to have a heart transplant as soon as it's needed, so you'll usually be placed on a waiting list.

It may be several months, or possibly years, before a donor heart of the right size and blood group becomes available.

Many people are well enough to stay at home until a heart becomes available, although some people will need to remain in hospital.

The 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.

Waiting for a suitable donor

While waiting for a donated heart to become available, it's important to stay as healthy as possible by:

• having a healthy diet
• taking regular exercise, if possible
• not smoking or drinking excessive amounts of alcohol

The transplant centre will need to be able to contact you at short notice, so you should inform staff if your contact details change.

You should also let staff know if your health changes – for example, if you develop an infection.

Prepare an overnight bag and make arrangements with your friends, family and employer so you can go to the transplant centre as soon as a donor heart becomes available.

Coping with being on the waiting list

Living with a serious heart condition can be strenuous enough, and the added anxiety of waiting for a heart to become available can make the situation even more difficult.

This can have an effect on both your physical and mental health. Contact your GP or the transplant centre for advice if you're struggling to cope emotionally with the demands of waiting for a transplant.

You may also find it useful to contact a support group, such as the British Heart Foundation or Little Hearts Matter, a charity for children with heart defects.

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'll be reassessed quickly to make sure no new medical conditions have developed.

When the medical team has confirmed that you and the donor heart are suitable, you will be given a general anaesthetic.

The procedure must be carried out as quickly as possible to have the best chance of success.

Find out more about what happens during a heart transplant.

Transplant centres

Heart transplants are carried out at a specialist heart transplant centre.

UK heart transplant centres are located in:

• Great Ormond Street Hospital for Children and the Royal Brompton and Harefield Hospital in London
• Papworth Hospital in Cambridge
• University Hospitals Birmingham NHS Foundation Trust
• University Hospital of South Manchester
• Freeman Hospital in Newcastle 
• Golden Jubilee National Hospital in Glasgow

What happens?

A heart transplant is carried out with you unconscious under general anaesthetic, and normally takes between 4 and 6 hours.

You'll be connected to a heart-lung bypass machine, which will take over the functions of the heart and lungs while the transplant is being carried out.

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

During the procedure:

• a cut (incision) is made down your chest over your breastbone and the bone is separated, allowing the surgeon to access your heart
• your heart is removed, leaving behind a section of the left atrium (the left upper chamber of the heart)
• the new heart is connected to the aorta, the main artery from the heart, the pulmonary artery, and the remaining part of the atrium

You'll be taken off the bypass machine when your new heart starts beating.

Your breastbone will be closed with metal wires, and the tissues and skin will be closed with stitches.

After the operation

Once the transplant is complete, you'll be moved to an intensive care unit (ICU).

A machine called a ventilator will assist you with your breathing, and a tube will be inserted into a vein to provide you with fluid and nutrients. These will normally be removed after a few days.

You'll also be given pain relief as required.

Most people are well enough to move from the ICU and into a hospital ward within a few days.

You'll usually be able to leave hospital within two or three weeks, although you'll need to have regular follow-up appointments and take medicine to help stop your body rejecting your new heart.

Living with

Most people can eventually return to their normal activities after a heart transplant, although it may be a few months before you feel up to it.

Follow-up appointments

You'll have regular follow-up appointments to monitor your progress after a heart transplant.

These will be quite frequent at first, but may eventually only be necessary once every 3 to 6 months.

During these appointments, you will have tests to check how well your heart and medicines are working, and to check for any complications of a heart transplant.

Immunosuppressants

You'll need to take several medicines called immunosuppressants for the rest of your life after having a heart transplant.

Without these medicines, your body may recognise your new heart as foreign and attack it. This is known as rejection.

Immunosuppressants are powerful medicines that can have a range of significant side effects, such as an increased vulnerability to infection, weak bones (osteoporosis), kidney problems and diabetes.

While these side effects may be troublesome, you should never stop taking your immunosuppressants without medical advice. If you do, it could lead to your heart being rejected.

Exercise

You'll usually receive support from a physiotherapist while you're still in hospital to help you get around and build up your strength.

You'll also be encouraged to take part in a cardiac rehabilitation programme after going home. This involves following a personalised exercise plan to help you regain your previous strength and mobility.

You can return to gentle exercise when you're feeling up to it. Avoid strenuous activities such as pushing, pulling or lifting anything heavy for at least 8 to 12 weeks.

Talk to your transplant team before taking part in contact sports and more extreme activities such as rugby, boxing or martial arts.

Diet

You do not usually need to have a special diet after a heart transplant. A generally balanced diet can help with healing and ensure you stay as healthy as possible.

A healthy diet may also help reduce the risk of some of the side effects of immunosuppressants, including weight gain, osteoporosis and diabetes.

Immunosuppressants also make you more vulnerable to infections, including food poisoning.

Make sure you practise good food hygiene to reduce your risk of getting a tummy bug.

Smoking and alcohol

Smoking can be very harmful, so you'll usually be advised to stop or avoid smoking after a heart transplant.

Get more advice and information about stopping smoking

You can usually still drink alcohol after a heart transplant,but it should be in moderation. 

Speak to your GP or transplant team for advice about drinking alcohol.

Sex, pregnancy and contraception

Speak to your transplant team if you want to try for a baby after having a heart transplant.

They'll talk to you about the possible risks, any extra care you might need, and any possible changes to your medicines.

You may be advised to wait until at least a year after your transplant operation before trying for a baby.

If you're not trying for a baby, speak to your transplant team about appropriate contraception, as some types of contraceptive pill can interfere with your immunosuppressant medicines.

Even if you're taking the pill, it's a good idea to ensure you or your partner use a barrier method of contraception, such as a condom, because you're at an increased risk of sexually transmitted infections (STIs).

Driving, travel and work or school

You'll need to stop driving for at least a month after a heart transplant.

Ask your transplant team for advice about when it's safe to drive.

Many people can return to work after a heart transplant, but how long it takes depends on your job and how well you recover.

Most people return to work within 4 to 6 months.

Children who have had a heart transplant may be able to return to school within 2 or 3 months.

You can travel after a heart transplant, but it's recommended to wait until the first year of frequent follow-up appointments has finished.

Speak to your transplant team for more advice on travelling.

Risks

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

Some complications can occur soon after the procedure, while others may develop months or even years later.

The main risks associated with a heart transplant are described below.

Rejection

One of the most common complications of a heart transplant is rejection of the donor heart.

This is where the immune system recognises the transplanted heart as foreign and attacks it.

Rejection usually occurs in the days, weeks or months after the transplant, although it can sometimes happen years later.

Immunosuppressant medication can reduce the risk of this happening, but can't always prevent it completely.

Symptoms of rejection can include:

• chills and aches
• tiredness
• shortness of breath
• puffy, swollen ankles
• noticeable fast or irregular heartbeats (heart alpitations)
• a slightly raised temperature
• tummy (abdominal) pain

Contact your GP or transplant team as soon as possible if you have these symptoms.

Rejection can usually be treated by increasing your dose of immunosuppressant medication.

Primary graft dysfunction

One of the most serious complications that can occur soon after a heart transplant is that the donated heart fails and does not work properly.

One of the reasons this might happen is primary graft dysfunction.

You'll be closely monitored after your transplant to check for signs of primary graft dysfunction so treatment can be started as soon as possible.

Treatments for primary graft dysfunction may include using:

• medication to support the new heart
• mechanical circulatory support - a machine that helps pump your blood for you and supports the new heart

Immunosuppressant side effects

The immunosuppressant medication you need to take to prevent rejection can have a number of significant side effects.

These can include:

• increased vulnerability to infections
• weight gain
• kidney problems
• high blood pressure
• diabetes
• weakened bones (osteoporosis)
• an increased risk of certain types of cancer, particularly skin cancer

Speak to your transplant team if you experience any troublesome side effects. Do not stop taking your medication without getting medical advice first.

Infections

Immunosuppressant medication will weaken your immune system and make you more vulnerable to infection.

While taking the medication, it's a good idea to:

• report any possible symptoms of an infection to a GP or your  transplant team immediately – things to look out for include a high temperature (fever), aching muscles, diarrhoea or headaches
• ensure your vaccinations are up-to-date – speak to a GP or transplant team for advice about any additional vaccines you might need, as some are not safe if you have a weak immune system
• avoid close contact with anyone who has an infection – even if it's an infection to which you were previously immune, such as chickenpox

To help prevent infection, you may be given antibiotics, antifungal medicine or antiviral medication to take for at least the first few weeks or months after your transplant.

Narrowed arteries

Narrowing and hardening of the 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). It tends to occur within the first 10 years after the transplant operation.

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.

To check for CAV, you may have a coronary angiographies – a type of X-ray used to look at the blood vessels of the heart in more detail.

Medication can help keep CAV under control if it does develop,or some people may need to have another heart transplant