Lung transplant

A lung transplant is an option for some patients with severe lung disease when other treatments will no longer work.

The procedure is not suitable for everyone. It is not a cure as there are risks as well as benefits. For people who are selected for a lung transplant, it may offer the best chance of a longer and better quality of life.

The lung transplant procedure is an operation to remove the diseased or failing lung and replace it with a healthy lung from a donor.

A donor is usually someone who has died. In very rare cases, a living person can donate a small part of their lung. Find out more about organ donation.

A lung transplant can be considered if:

• A person has severe lung disease that is not responding to other methods of treatment
• A person is expected to live a short time without a transplant.

There are different types of transplant options:

• Single lung transplant: This is when one damaged lung is removed and replaced with a lung from a donor.
• Double lung transplant: This is when both lungs are removed and replaced with two lungs from a donor.
• Heart-lung transplant: This is when the heart and both lungs are removed and replaced with a donated heart and lungs.

Conditions that could be treated with a lung transplant include:

There are many complex issues to think about before a person is referred for a lung transplant. A person’s condition must severely impact their quality of life and reduce the time they are expected to live. Deciding if a person is a suitable candidate is a decision taken by several healthcare professionals. They will look at whether there is likely to be a good outcome from the operation and whether there are any risk factors that could prevent a good outcome.

Guidelines have been produced by the International Society for Heart and Lung Transplantation to help healthcare professionals decide whether someone is a suitable candidate for a lung transplant.

These guidelines suggest that referral for a lung transplant should begin before the need for the operation becomes urgent. This will allow healthcare professionals time to address any barriers that might prevent a person from receiving a transplant, such as being severely overweight or underweight, or not being up to date with vaccinations.

If your doctors thinks that a lung transplant may be a good option for you, they will discuss this with you. If you agree, they will refer you to an assessment at a transplant centre.

The guidelines recommend that a full evaluation should include:

• Looking at how severe your lung condition is and what stage it is at
• Looking at how your body is working, including routine checks such as blood pressure
• Looking at whether some is overweight or underweight
• Checking your resilience – your ability to recover from illness and injury
• Looking at whether you have any other conditions and how severe they are
• Checking your mental wellbeing, lifestyle and support network
• Checking any health-related behaviours that may impact recovery and long-term survival, for example, smoking.

The assessments will differ between individual transplant centres.  All assessments will include several tests and investigations, together with conversations with different members of the transplant team.

Tests

Tests will be carried out to make sure your other major organs, such as your heart, kidneys and liver, will cope with the surgery and function properly after the transplant.  They are likely to include:

• Blood tests
  These are needed to understand your overall health and check for any signs of infection. It will also determine your blood group. This is required to match you with a donor who has the same blood group as you.Blood tests can also look at your levels of antibodies. Antibodies are released from the body’s immune system, which is responsible for fighting off bugs and infections. Antibodies are formed when the body detects viruses or bacteria, which it sees as a foreign invader. They can also be formed to attack foreign tissue (cells from another human body).If your body has been exposed to foreign tissue before, either through a previous transplant, blood transfusion or pregnancy, you may have a high number of antibodies already in your system – that are ready to attack foreign tissue, such as a transplanted lung. It is very difficult to remove these antibodies and they can increase your risk of the new lung being rejected. Tests will show what levels you have of these antibodies and your healthcare team can discuss the findings with you.
• Lung tests
  This could include a chest X-ray, CT scan, a test to check your exercise levels, or lung function tests such as spirometry or gas transfer test.
• Tests on other organs
  A range of other tests will be carried out to check how well your other major organs are working including your heart, liver and kidneys.

Benefits and risks

People are added to the transplant list when their lung condition is severely affecting their quality of life and if a transplant is not performed, they have a short time left to live. At this point, the benefits of a lung transplant usually outweigh the risks. It is important to think through the benefits and risks with your healthcare professional team to make sure you fully understand the process and the outcomes.

“Transplantation does not cure all symptoms or completely remove the need to manage your condition. You are likely to be exchanging one set of symptoms and management of a condition, for another. After transplant, your symptoms are often more easily managed – but it is a set of symptoms that you are likely to live with for the rest of your life.” A transplant recipient in the UK.

Benefits

The main benefit of a lung transplant is that it can lengthen your life. Transplants can become an option if you are likely to die soon without the operation.  People who have a lung transplant are likely to:

• Live longer
• Have a better quality of life
• Have increased energy
• Be able to carry out day-to-day activities more easily
• See improvement in existing symptoms

Risks

A lung transplant is a complicated operation and there is a high risk of complications. Some of these risks are linked to the surgery itself. Other risks come from the medication you need to take after the transplant.

The risks of transplant include:

• Common risks linked with all surgeries, such as bleeding, blood clots or issues with anaesthetic medication.
• There is a chance your body will reject the new organ. This can be managed with medication and it is uncommon for it to lead to complete organ failure.
• You may need further operations to deal with any issues.
• Infection is a risk with all surgeries but you are more at risk after a transplant as you will need to take medication that reduces the immune system. This is to avoid the body rejecting the organ but it also lowers your defence against infection and cancers.
• There is an increased risk of developing certain types of cancer.
• There is a risk of dying from a transplant and the complications that can happen.

If you have been assessed to have a lung transplant, you will be added to a transplant waiting list. These are managed differently in different countries. Usually, the list includes all people waiting for a transplant of any organ. It is not a list that you move higher on over time, it is a database of people and their requirements. It can match you to a donor organ when one is available. Some countries operate a separate list for people who require donors more urgently, if their condition has got a lot worse over time.

Waiting for a call

Many people report that waiting on the list can be a highly stressful time. There is no way of knowing how long you will be waiting for a donor and when the call will come.

It is common to receive ‘false alarm’ calls – when you are called for a transplant but it does not go ahead for some reason. You may also be called as a back up for the person who was selected first for the organ. This is in case they cannot receive the organ, for example if they are too unwell for the operation. This can be a very emotionally turbulent time and it is important to seek help if you feel that your mental wellbeing is suffering.

During the time you are on the waiting list, your healthcare team will monitor your condition and will update the list with any changes. You are likely to receive regular appointments to check how well you are, review blood test results and check whether you have received recent vaccinations.

It is important that the transplant centre can always contact you, so keep your contact telephone close by. Always remember to update your healthcare team if your contact details change. When you receive a phone call, you will usually need to be in hospital ready for an operation within a few hours.  The transplant is carried out quickly because the donated lungs cannot survive outside the body for long without being transplanted.

Keeping well while you wait

It is important to try and look after your health while you wait for a transplant. There is growing evidence that a programme of rehabilitation could benefit people who are waiting for a transplant. These programmes usually include physical training, advice on diet and lifestyle changes and support for mental health. The aim is to help someone prepare for surgery and to give them the best chance of recovery after the operation. The European Society of Organ Transplantation (ESOT) has produced a paper outlining sharing expert opinions on how rehabilitation could help before a transplant.

Before, during and after the operation

Once you have been offered a donated lung, your healthcare team will invite you to the transplant centre as soon as possible. You should not eat or drink from this point onwards to prepare your body for surgery.

You will receive a general anaesthetic to put you to sleep during the operation. It can take between 4 and 12 hours. You will have a tube placed into the mouth or nose and into the airways to hold them open during the operation.

A cut (incision) is made in your chest and the surgeon will cut out the existing lung. The type of incision will depend on what your requirements are and your surgeon’s preference. The new lung will be attached by stitches and the team will check if it is working properly.

For a double lung transplant, one lung is taken out at a time. The lung that has experienced more damage is removed first. Once the first lung is transplanted and working properly, the other lung will be taken out and the new one attached.

Once the operation is finished, you will stay within an intensive care unit. Intensive care units can feel overwhelming for you and your family or carers. You might also experience confusion, delirium, or extreme anxiety when you wake up from your operation.

The medical team will monitor you closely during this time to check for any problems. You are likely to be on strong medication to help with pain and prevent infection or organ rejection. Medication is usually given via a tube into the body at this stage, along with any extra fluid you need during your recovery.

If everything is going well, after a few days in intensive care, you are likely to stay in hospital while you recover. You may find that you have lost some strength in your muscles in the time leading to your transplant and while you were in intensive care. This will come back gradually as you build your strength up. Most transplant centres will offer physiotherapy support or rehabilitation to help with this during your stay in hospital.

Once the transplant team is happy that you are well enough, you will return home for further recovery. You will take home medication that will alter your immune system (immune suppressant medicines) to lower the risk of rejection. You will be given appointments to be seen in the clinic regularly for the following weeks and months while you recover.

Your recovery after the operation can be a challenging time. You will need someone to help care for you during this time. It is important to rest and sleep while you are recovering, getting used to the new medication and managing any pain or other issues. You will also need to keep your surgical wound clean. Your transplant team will advise you on how to do this.

You will need to check for signs of infection or rejection of the organ. Your transplant team will give you a list of things that could be a sign that something is wrong. These could include shortness of breath, a high temperature over 38C, severe headache or vomiting, and new chest pain.

After the first 3-6 months, the risk of the lung being rejected is much lower. During this period, you are likely to build up your strength again and start to return to normal activities.

Medication and care at home

You will be given new medication to take once you are home. Medicine, known as immunosuppressants, are given to help stop your body rejecting the new organ. These will need to be taken for the rest of your life.

It is important that you follow the recommended doses that you have been given. You will also be advised on the best time to take the medication and what other medicines and foods you should avoid. Before you take any other medication, you should check with your transplant team if it is safe to.

You may also be asked to do lung function tests at home, where you record your scores and send to your healthcare team. This allows the team to check how well your lungs are working over time.

Exercise, lifestyle and diet  

You will need to rest and recover in the first few weeks after your transplant but it is also important to quickly start exercising, for example, by walking a little each day. This can be short distances to begin with and you can build up over time including exercise which makes you feel breathless. This is important to prevent blood clots after surgery but also to help your body to adjust to your new lungs. If you are unsure, you can ask your healthcare professional on the best type of exercise for you. You may also be referred to a physiotherapy team who can give you specific exercises and activity to work on.

Your transplant team will recommend when it is safe to go to school or work, drive and have sex.

They will also advise you on any foods you should avoid. You should aim to eat a healthy diet, maintaining a healthy weight. You should also not smoke or be exposed to smoke from others, either in your household, or anywhere else. You should also avoid alcohol.

It is important to take good care of your teeth and gums to avoid infection and get a prescription for antibiotics before you have dental work. Skin cancer is also 10 times more common in people who have had an organ transplant, so limit your sun exposure where possible.

Vaccination

You should keep up to date with your vaccinations after your transplant. While you are taking medication to supress your immune system, you have a higher risk of infection. Vaccinations, such as the flu and COVID-19 vaccine, can help protect you from these common illnesses. You should check with your transplant centre before you get any vaccine as transplant recipients should not get live vaccines. Find out more about vaccination.

Cancer screening

People who have been through a transplant have a higher risk of developing cancer. It is important that you attend all appointments you are invited to for cancer screening. This could include the cervical smear test, breast cancer screening or lung cancer screening. The screening available will be different depending on which country you live in.

How you might feel with your new lung(s)

How you feel after your transplant will be unique to you. Some people report feeling that they have more energy for life. Others may feel unsettled by the change. Some people struggle with the feeling that they no longer belong to the community of patients they were part of before if they no longer experience the same symptoms.

Whatever your feelings are, take time to reflect and accept the way you feel. Talk to family and friends about how you are feeling. Your transplant centre might also provide psychological support services you could access, or they could suggest other services you could use. You could also seek support from others who have been through the same experience. A list of patient organisations and support groups is provided at the end of this page.

Some people also find it comforting to write to their donor’s family to thank them. This is possible in some countries and is usually done anonymously. You should check with your transplant team if this is something you are able to do.

• The International Society for Heart and Lung Transplantation collects information and data about people receiving organ donations, donors, and outcomes after a transplant.

Country-specific information:

• NHS Organ Transplantation (UK)
• Swedish Heart and Lung Foundation
• Viking: the Swedish Patient Association for Heart and Lung Transplants