Heart-lung transplant

A heart-lung transplant is a major surgical procedure. It is used to treat people who have severe, or life-threatening, conditions that are affecting both their heart and their lungs, such as severe congenital heart disease (birth defects that affect the normal working of the heart).

The British Heart Foundation has more on congenital heart disease.

During a heart-lung transplant, a donated heart and pair of lungs are taken from a recently deceased donor and are used to replace the patient’s diseased heart and lungs.

A heart-lung transplant is a complex and demanding procedure that carries a high risk of complications, some of which can be fatal. Therefore, a heart-lung transplant is usually only performed when all other treatment options have been exhausted, and there is compelling evidence to suggest that the benefits of the transplant outweigh any risks.

How common are heart-lung transplants?

The first heart-lung transplant carried out in the UK was in 1983 and there are now an average of 9 transplants carried out each year in the UK. This number may seem low in numbers, but it is due to the fact that the availability of suitable donors is severely limited, and medical interventions continue to be the mainstay of most patients' management.

The 2 main reasons for the low number of donors for transplant operations are discussed below.

Firstly, most donated hearts are taken from people who are brain dead. Although there is no activity in their brain, and they are legally dead, a ventilator can be used to keep their heart beating and oxygen circulating through their blood. However, the prolonged use of a ventilator can damage the lungs and make them unsuitable for transplant.

The second problem is that lung tissue rapidly deteriorates once it has been removed from the body. Therefore, a successful donation is only usually possible if the transplant is carried out within 4-6 hours of the lungs being removed from the donor. This means that a successful donation can only go ahead if the donor and recipient of the transplant are in relatively close geographical proximity.

Due to the limited availability of organs, there remains an important clinical need for members of the public to join the NHS Organ Donor Register.

Cardiothoracic

The heart and lungs work in close partnership with each other. Healthcare professionals use the term ‘cardiothoracic’ to describe this partnership.

The partnership of the heart and lungs means they work together in the following way:

• the heart pumps oxygen-rich blood from the lungs to the rest of the body (the cells of the body)
• the body’s cells use the oxygen for energy
• the oxygen-poor blood is then pumped back to the lungs
• the lungs supply the blood with more oxygen, and
• the process starts again

Due to the important partnership that exists between the heart and the lungs, any underlying problems with the heart can damage the lungs and vice versa. Therefore, in order to effectively treat certain health conditions, it is necessary to replace both organs.

Common reasons for heart-lung transplants

There are a number of different reasons why a heart-lung transplant may be required. Some of the reasons are outlined below.

Congenital heart disease

Congenital heart disease is a condition where children are born with birth defects that affect their heart.

In some cases of congenital heart disease, damage to the heart means that the blood is pumped at a higher pressure than normal into the lungs. The excess pressure weakens the heart and damages the lungs.

In the most serious cases, the damage to the heart and lungs may be untreatable and a heart-lung transplant will be required.

Primary pulmonary hypertension

Primary pulmonary hypertension is a rare condition where, for reasons that are unknown, the blood pressure within the lungs is much higher than usual. Over time, the excess pressure can weaken the heart and then damage the lungs.

Cystic fibrosis

Cystic fibrosis is a common, inherited condition that affects over 8,000 children and young adults in the UK. In cases of cystic fibrosis, a thick sticky mucus develops inside the lungs which can damage them.

Cystic fibrosis can often be successfully treated using a lung transplant, but there may be some circumstances where if a donated set of heart and lungs are available, a heart-lung transplant will be performed.

For example, if the blood supply that connects the heart to the lungs becomes damaged, it is more likely that transplanting both the heart and the lungs will be successful.

There is also the additional benefit that the original heart, which is usually undamaged except for the nearby blood vessels, can be used as a transplant organ for somebody else. This is known as a ‘domino transplant’.

As a result of the lack of available donor organs, transplant teams have to assess potential recipients very carefully. They need to establish whether there are problems, or factors, that may result in the donation proving unsuccessful. The outcome of the assessment may mean that the risks of a heart-lung transplant outweigh the benefits.

Contraindications

Healthcare professionals use the term ‘contraindication’ to describe factors, or problems, that mean that a person is not suitable for a particular treatment.

There are 2 types of contraindication:

• absolute contraindication - which means a person should not, under any circumstances, be offered a treatment
• relative contraindication - which means that while the treatment would generally not be recommend, there may be special circumstances where treatment could go ahead

Absolute contraindications

Absolute contraindications for a heart-lung transplant include:

• being over 65 years of age and having another serious health condition
• having blood poisoning (septicaemia)
• having an incurable form of cancer
• currently misusing alcohol or drugs
• currently smoking, or
• having a mental health condition, such as schizophrenia, that means you are highly unlikely to comply with the treatment that will be required during the recovery period, such as taking immunosuppressant medication

Relative contraindications

Relative contraindications for a heart-lung transplant include:

• having HIV
• having hepatitis B
• having hepatitis C
• being obese
• having severe diabetes that has caused damage to your organs, or
• having severe osteoporosis (brittle bones) - as many of the medications that are used in the recovery period can weaken bones, they are usually unsuitable for people with severe osteoporosis

Initial assessment

If a heart-lung transplant is thought to be an appropriate treatment for you, it is likely that you will discuss this with your specialist and then be invited to your local hospital for an initial assessment.

Further assessment

Once the contraindications have been considered, it is likely that you will be invited to your nearest transplant centre to have a more in-depth assessment.

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 having a transplant.

You will also be given 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 that you would like to ask the transplant team.

As part of your assessment, you may have some of the tests that are described below.

• blood and urine tests - to check for viral or bacterial infections, as well as assessing the state of organs, such as your kidneys and liver
• chest X-rays
• blood pressure tests
• lung function test - where a machine called a pulse oximeter is used to measure the amount of oxygen that is in your blood
• computer topography (CT) and magnetic resomrinance imaging (MRI) scans - which can be used to check the state of certain organs, such as your lungs
• coronary angiography - a special type of X-ray that can be used to study the inside of your heart
• electrocardiography (ECG) - a test that can measure the electrical activity of your heart

The whole assessment process usually takes between 2 to 4 days. If your child is being assessed, the transplant centre will be able to arrange accommodation for you if you need it.

The final decision about whether you, or your child, is suitable for a heart-lung transplant is not made by one individual - it is a joint decision with a person-centred approach that the transplant team discusses to consider all of the tests and person as a whole.

If the decision is straightforward, you will be informed quickly, perhaps before leaving the transplant centre. However, if the decision is more complex, the transplant team will want to carefully discuss all of the issues. Therefore, it may be several weeks before the decision is discussed with you.

Once the decision has been made, you will have the opportunity to discuss the decision in person with a member of the transplant team. If it is decided that you, or your child, is not suitable for a heart-lung transplant, you will also be given the opportunity to discuss the treatment options that are suitable for you.

The waiting list

If it is decided that you are suitable for a heart-lung transplant, your details will be added to the NHS Organ Donor Register, and you will be added to the waiting list.

You will be given a pager so that staff at the transplant centre can contact you at any time during the night or day if a donated organ becomes available. You should also keep a suitcase packed with clothes and other suitable items, so that you are ready to leave for the transplant centre as soon as you are notified.

It is your responsibility to inform the transplant centre if:

• there are any changes to your personal details - for example, if you have changed address, or if you are going on holiday
• you become more unwell or have changes to your normal symptoms
• you are admitted to hospital
• there are any changes to your medication

It is impossible to say how long it will take for a suitable donor to be found. It may be several months, or even years, before a donated heart and lungs of the right size and blood group become available.

Your transplant centre will be able to offer any support, guidance and information that you may need while you are waiting for a suitable donor to be found.

The transplant process

Once a donated set of heart and lungs become available, your transplant team will contact you and arrange for transport to take you to the transplant centre as quickly as possible.

You will be taken to the operating theatre and given a general anaesthetic. A machine called a heart-lung machine will be attached to your body using tubes that are inserted into your blood vessels. The machine will pump oxygen-rich blood around your body until the operation is complete.

An incision (cut) will made in your chest, and your heart and lungs will be removed. The donated set of heart and lungs will then be put in place and reconnected to the surrounding blood vessels. The incision in your chest will be stitched up, and you will be transferred to an intensive care unit (ICU) where your recovery will be closely monitored.

A heart-lung operation usually takes several hours to complete.

After the transplant

Following your heart-lung transplant, it is likely that you will have to stay in the intensive care unit (ICU) for several days. There are several reasons for this:

• Your new organs will be very vulnerable to infection immediately after the transplant, so you will need to stay in a sterile (germ-free) environment.
• There is a risk that your body may reject the heart and/or the lungs, which would require emergency treatment.
• You will require additional assistance with breathing and feeding until you begin to recover.

You will be given pain relief as required both at this stage (when you are less mobile) and as you recover and begin to move around the ward.

You will then usually be transferred to a general ward within 3 to 4 days where your health will continue to be monitored as you recover from the effects of the surgery. Most people will be well enough to leave hospital within 3 weeks of having a heart-lung transplant.

The recovery process

Recovering fully from a transplant can be a long and sometimes frustrating process. You may be referred to a physiotherapist, or other specialist in rehabilitation, so that you can take part in exercises that are specifically designed to strengthen your new heart and lungs. This is known as cardiopulmonary rehabilitation.

During your recovery period, you will need to attend regular check-ups so that the function of your new heart and lungs can be regularly monitored. You may need as many as 3 check-ups a week during the first few weeks after the transplant. These appointments will become less frequent if you make good progress.

After having a heart-lung transplant, it may take up to 6 months before you are well enough to return to your normal daily activities.

Once you make a full recovery, you will still require regular check-ups on a long-term basis. Depending on your condition, the timing of these can range from every 3 months to once a year.

Immunosuppressants

After having a heart-lung transplant, one of the biggest risks is that your immune system will regard the new heart and lungs as foreign objects and begin to attack them. This is known as rejection. 

In order to prevent your new heart and lungs from being rejected, you will need to take medicines, 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 kill foreign cells, such as bacteria, viruses and, in the case of transplants, donated tissue, such as your new heart and lungs.

Most people need to take a combination of 3 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 medicines that can have a range of different side effects. Possible side effects you may experience include:

• increased vulnerability to infection
• weakened bones (osteoporosis)
• muscle weakness
• nausea
• 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 or reduce the recommended dose of immunosuppressants, because if you do, it could lead to your heart and lungs being rejected.

The transplant centre may be able to provide additional treatments to help you to cope better with any side effects that you experience after taking immunosuppressants.

One of the biggest risks after having a heart-lung transplant is that, despite taking immunosuppressants, your body will reject the new heart and lungs.

There are 2 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:

• fatigue
• swelling of your arms and legs
• weight gain
• a high temperature (fever) of above 38C (100.4F)

Signs that your body may be rejecting your lungs include:

• cough
• shortness of breath
• difficulties breathing
• a high temperature (fever) of above 38C (100.4F)

If you have any of these symptoms, you should contact your GP and/or your transplant centre as soon as possible.

Rejection can usually be treated by increasing the dose of your immunosuppressive medicines.

Infection

The immunosuppressants medicines will weaken your immune system making you more vulnerable to infection.

The 3 most common types of infection experienced by people who have undergone heart-lung transplants are:

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

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

You may be given antibiotics to take for the first few weeks after your transplant as a precaution against infection

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 above 38C (100.4F)
• feeling generally unwell
• sweating and shivering
• loss of appetite
• pain in your chest

If you think that you have pneumonia, you should contact your GP and your transplant team. If you have got pneumonia, the condition will need to be treated with antibiotics.

Fungal infections

Although not as common as bacterial infections, fungal infections can also develop in the first few weeks after a transplant.

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

The symptoms of these types of fungal infection will depend on what part of your body is affected, although shared symptoms include:

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

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

Symptoms of an invasive fungal infection include:

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

If you think that you may have an invasive fungal infection, you should contact your GP and/or transplant centre as soon as possible.

Non-invasive fungal infections can be treated using antifungal creams and tablets. Invasive fungal infections may require admission to hospital and treatment with injections of anti-fungal medication (intravenous antifungals).

As a precaution against fungal infections, you may be given a course of antifungal medication to take for several months after your transplant.

CMV infection

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

Symptoms of a CMV infection include:

• a high temperature (fever) of above 38C (100.4F)
• shortness of breath
• the appearance of large, painful ulcers in your mouth
• 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 that you have a CMV infection, you should contact your GP and/or transplant centre as soon as possible.

CMV infections can be treated with anti-viral medicines.

As a precaution against CMV, you may be given a course of anti-viral medication to take for several months after your transplant.

Preventing long-term infection

After having a heart-lung transplant, it is likely that you will need to take immunosuppressants for the rest of your life, because you will be more vulnerable to infection. This means that you will have to take extra precautions that most people are not required to take. 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 who is 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 (you may need support with this initially)

The results for heart-lung transplants have improved significantly since the operation was first carried out in 1983.

This is mainly due to the introduction of immunosuppressants, which help prevent the immune system from rejecting donated organs.

The most recently available data shows that:

• 66% of people will survive for 1 year after receiving a heart-lung transplant
• 63% of people will survive for 2 years after receiving a heart-lung transplant
• 47% of people will survive for 5 years after receiving a heart-lung transplant
• 36% of people will survive for 10 years after receiving a heart-lung transplant

Finding out that you need to have a transplant, waiting for suitable donor organs, the recovery process and the change of lifestyle can all be emotionally demanding for you and your family.

If you feel depressed or would like to talk to someone about your feelings, see your GP. They can refer you to a counsellor and advise you about how to join a support group in your area.