Lung transplant living overview

Overview

A lung transplant is an operation that replaces a diseased lung with a healthy lung from a donor. After the transplant, you will need to take medicines for the rest of your life to help your body accept the new lung. This guide helps you understand life after the transplant, including how to stay well and when to call your healthcare team.

Lung transplant is not common. It is a specialized treatment reserved for people with severe lung disease that cannot be managed with other therapies. Each year, only a few thousand lung transplants are done worldwide.

Lung transplant is most often performed in people with end-stage lung disease, such as COPD, pulmonary fibrosis, cystic fibrosis, or pulmonary hypertension. It can be done in children and adults, but each person must meet certain health criteria to be a good candidate.

Symptoms

Common symptoms

• Fever or chills
• New or worsening cough
• Shortness of breath with less effort than usual
• Feeling very tired or weak
• Swelling in the legs or feet
• Weight gain of several pounds in a short time

Symptoms in children

• Poor feeding or trouble sucking
• Not gaining weight as expected
• Irritability or crying more than usual
• Breathing faster than normal
• Unusual drowsiness

Symptoms in older adults

• Confusion or change in mental state
• Low energy or difficulty getting up
• Worsening breathlessness with activity
• Falling or feeling unsteady
• Less interest in food or water

Causes

Main causes

• A lung transplant is needed when both lungs are too damaged to keep the body supplied with oxygen, and other treatments no longer help.
• Common diseases that lead to transplant include chronic obstructive pulmonary disease (COPD), pulmonary fibrosis, cystic fibrosis, and pulmonary hypertension.
• In rare cases, a lung transplant may be needed after severe lung injury or infection.

Risk factors

• Long-term smoking is a major risk factor for many lung diseases that can lead to transplant.
• Exposure to dust, fumes, or chemicals at work increases the risk of lung damage.
• Genetics and family history play a role in some conditions, such as cystic fibrosis.
• Viral infections that cause severe lung damage can also be a risk factor.

When to see a doctor

See a doctor urgently if:

• Call your transplant team the same day if you have any fever, chills, or cold symptoms.
• Seek urgent care if you have increased shortness of breath or a new cough.
• Contact your team early if you have rapid weight gain or swelling in your legs.

Book a routine appointment if:

• Attend all scheduled follow-up visits with your transplant team.
• Go for blood tests, lung function tests, and imaging as recommended.
• Keep up with dental check-ups and skin exams, because infection can start anywhere.

Diagnosis

After a lung transplant, diagnosis focuses on checking whether your body is accepting the new lung. Doctors use several tests to look for signs of rejection or infection. These tests are done regularly, especially in the first year.

Tests that may be done

• Lung function tests: you blow into a machine to measure airflow and lung volume.
• Chest X-rays or CT scans: pictures that show the inside of your lungs.
• Blood tests: to check for infections and to monitor medicine levels.
• Bronchoscopy: a thin, flexible tube with a camera is gently passed through your airway to look at your lungs and take tiny tissue samples.

What to expect at your appointment

In the first year after transplant, you will likely have many appointments. These gradually become less frequent. Some tests, like bronchoscopy, may be uncomfortable, but you will receive medicine to help you relax. Your transplant team will explain each test and what the results mean.

Treatment

Life after a lung transplant is a long-term treatment plan. The main goal is to prevent rejection and infection. This involves taking daily medicines, living a healthy lifestyle, and working closely with your healthcare team.

Self-care at home

• Take your immunosuppressant medicines exactly as prescribed, at the same time each day.
• Wash your hands often with soap and water, or use hand sanitiser.
• Avoid crowds and people who are sick, especially in the first months.
• Wear a mask in hospitals or high-risk public places if your team advises it.
• Monitor yourself for symptoms and tell your team about any change.

Medical treatments

The core medical treatment after a lung transplant is a combination of medicines that weaken part of your immune system to stop it from attacking the new lung. These are called immunosuppressants. You will also take medicines to prevent viral, fungal, and bacterial infections. Depending on your health, your doctor may prescribe medicines to manage blood pressure, cholesterol, or other conditions. Always take all medicines exactly as directed and do not stop them without talking to your doctor.

When is surgery considered?

In most cases, a single lung transplant is done. Some people receive a double lung transplant. After the initial transplant, additional surgery is rarely needed, but it may be necessary to treat complications, such as problems with the airway or bleeding. Your surgeon will discuss any future procedures if they become necessary.

Living with this condition

Your daily life will involve a routine of medications, check-ups, and careful attention to your body. Use a pill planner or daily alarms to remember each dose. Keep a log of your weight and how you feel, and bring it to your appointments. Learn what is normal for you, so you can spot any change early.

Lifestyle tips

• Do not smoke or vape, and avoid secondhand smoke.
• Avoid exposure to lung irritants such as dust, strong chemicals, or very cold air.
• Protect your skin from the sun, because transplant medicines make your skin more sensitive.
• Stay active with gentle exercise like walking or cycling, as tolerated.
• Get enough rest and sleep to help your body recover.

Diet and exercise

Eat a balanced diet with plenty of fruits, vegetables, whole grains, and lean protein. Your appetite may be low at first, so try small, frequent meals. Avoid raw or undercooked foods to reduce the risk of infection. Exercise, such as walking, helps strengthen your lungs and heart. Speak with your transplant team before starting any new exercise program.

Mental health and emotional wellbeing

It is completely normal to feel overwhelmed, anxious, or sad after a lung transplant. The stress of surgery and the demands of lifelong care can affect your mood. Talking to a counsellor, joining a support group, or sharing your feelings with family can help. If you feel hopeless or depressed, tell your doctor—there are ways to help.

Prevention

You cannot prevent the lung disease that led to your transplant, but you can take important steps to prevent complications after transplant, such as infection and rejection. The most important step is to take your medicines exactly as prescribed and to attend every follow-up appointment.

Vaccines

Vaccines are an important part of staying healthy after a lung transplant. Ask your doctor about getting the flu vaccine, COVID-19 vaccine, and pneumonia vaccine. Some vaccines, called live vaccines, may not be safe after transplant, so always check with your healthcare team before getting any vaccination.

Screening programmes

Regular screening is essential after a lung transplant. This includes blood tests to check your medicine levels and look for infection, lung function tests to see how well your new lung is working, and imaging tests when needed. Your team will provide a schedule for these screenings.

Complications

If left untreated

• If transplant rejection is not treated, it can severely damage the new lung and lead to permanent breathing problems.
• Infections can become serious and life-threatening if not caught early.
• Not taking medicines as prescribed increases the risk of both rejection and infection.

Long-term outlook

Each person's journey after a lung transplant is different, but many people experience a greatly improved quality of life. They can breathe easier, do more activities, and enjoy more time with family and friends. Life after transplant takes commitment, but with careful follow-up, support, and a positive mindset, a bright future is possible.

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