Living with lung transplant living overview

Overview

A lung transplant is a surgery where one or both of your damaged lungs are replaced with healthy lungs from a donor. This operation is usually considered when other treatments for severe lung disease no longer help, and without a transplant your life would be at risk.

Lung transplants are rare. Around a few thousand are performed each year worldwide, and they are usually done at specialized hospitals.

Lung transplants are for people with end‑stage lung disease, such as chronic obstructive pulmonary disease (COPD), pulmonary fibrosis, cystic fibrosis, or other serious lung conditions. They can be done in both adults and, in some cases, children.

Symptoms

Common symptoms

• Shortness of breath (breathlessness) that is not normal for you
• Fever or chills
• Cough that is new or becomes worse
• Feeling very tired or weak
• Redness, swelling, or tenderness around your surgery scar

Symptoms in children

• Fussy behavior or more crying than usual
• Having little energy or not wanting to play
• Poor appetite or not gaining weight
• Breathing faster than usual

Symptoms in older adults

• Confusion or feeling unusually sleepy
• Weakness that makes it hard to do daily tasks
• Loss of balance or falls
• Not wanting to eat or drink

Causes

Main causes

• Your original lungs have been badly damaged by an advanced lung disease, such as COPD, pulmonary fibrosis, cystic fibrosis, or pulmonary hypertension.
• The disease has made it very hard for you to breathe, walk, or do everyday tasks, and medical treatments are no longer helping enough.
• Your healthcare team has decided that a transplant offers you the best chance to live longer and feel better.

Risk factors

• Having a chronic (long‑lasting) lung disease that gets worse over time
• Severe infections that damage the lungs, such as pneumonia
• Certain inherited conditions, like cystic fibrosis
• Long‑term exposure to harmful substances, such as tobacco smoke or occupational dusts

When to see a doctor

See a doctor urgently if:

• Any sign of infection, such as fever, chills, or a new cough
• Any sign of rejection, such as new shortness of breath, chest pain, or flu‑like symptoms
• If you notice your symptoms getting worse over a short time

Book a routine appointment if:

• Attend all scheduled follow‑up appointments with your transplant team
• Keep up with recommended blood tests, lung function tests, and imaging scans
• Check in with your doctor before taking any new medicines, supplements, or vaccines

Diagnosis

Your transplant team will monitor you closely after surgery to check how well your new lung is working and to catch any problems early. They will look for signs of rejection or infection, and they will check your overall health.

Tests that may be done

• Lung function tests — you blow into a tube to see how well your lungs move air
• Blood tests — to check for signs of infection or rejection, and to monitor your medicine levels
• Chest x‑rays or scans — to look at the structure of your new lungs
• Lung biopsy — a tiny piece of lung tissue is taken (usually with a thin tube through your airway) to check for rejection

What to expect at your appointment

You will have regular checkups for the rest of your life. At first, you may come to the clinic every week or two. Over time, these visits may become less frequent, but you will still need lifelong monitoring. During a biopsy, you will be given medicine to keep you calm and to numb your airway, so it should not be painful.

Treatment

After a lung transplant, the main goal of treatment is to keep your new lung healthy for as long as possible. This means taking medicines to stop your immune system from rejecting the new lung, monitoring for infections, and managing any other health problems you have.

Self-care at home

• Take all of your medicines exactly as your transplant team tells you — never skip a dose
• Wash your hands often and avoid crowded places, especially during cold and flu season
• Follow your team’s advice about activity levels, rest, and how to check for signs of rejection
• Use a pill organizer or set reminders so you do not forget your medicine

Medical treatments

Your transplant team will prescribe medicines that calm your immune system so it does not fight your new lung. These are called immunosuppressants. You will also take medicines to prevent viral, bacterial, and fungal infections, as well as other medicines to protect your bones, heart, and kidneys from the side effects of your transplant medicines. The exact combination of medicines is chosen specifically for you, and you should always ask your doctor if you have any questions.

When is surgery considered?

If your transplanted lung starts to fail and other treatments are not working, your team may talk with you about the possibility of a second transplant. This is rare and depends on many factors, including your overall health and the availability of a donor lung.

Living with this condition

You will need to build a daily routine around your medicines, checkups, and self‑monitoring. Most people feel better within a few months, but full recovery can take up to a year. It is important to pace yourself, rest when you need to, and follow your transplant team’s advice.

Lifestyle tips

• Never smoke or vape, and avoid secondhand smoke
• Protect yourself from infections: wash your hands, wear a mask in crowded places, and avoid people who are sick
• Stay hydrated and get enough sleep to help your body heal
• Avoid swimming in lakes or rivers, and be careful with food safety to reduce infection risk

Diet and exercise

A balanced diet with plenty of fruits, vegetables, whole grains, and lean protein is important. You may need to limit certain foods if you are taking medicines that affect your blood sugar or kidneys, so ask your dietitian for a plan. Gentle exercise, like walking or bicycling, can help you regain strength, but always follow your physiotherapist’s advice and start slowly.

Mental health and emotional wellbeing

It is completely normal to feel anxious, depressed, or overwhelmed after a transplant. You have been through a major operation and you face an uncertain future. Many people find it helpful to talk to a counselor, join a support group, or simply share their feelings with family and friends. Remember that you are not alone, and your transplant team is there to support you emotionally as well as physically.

Prevention

The underlying lung disease that led to your transplant often cannot be prevented. However, you can lower your chances of transplant complications by taking your medicines as prescribed, attending regular checkups, and following a healthy lifestyle.

Vaccines

Vaccines are very important after a transplant. They help protect you from infections that your weakened immune system would otherwise fight. Talk to your transplant team about which vaccines are safe for you, and get them exactly when they recommend. Avoid live vaccines, like the flu nasal spray, unless your doctor says they are safe for you.

Screening programmes

You will have regular blood tests, lung function tests, and occasional bronchoscopies (a tube test to look inside your lungs). These checks help catch rejection or infection early, when they are easier to treat.

Complications

If left untreated

• Organ rejection — your immune system attacks the new lung, which can cause permanent damage if not treated quickly
• Serious infections, including pneumonia and viral illnesses, can be very dangerous if not treated promptly
• Long‑term damage to your new lung, which may lead to the need for a second transplant
• A slow decline in lung function over time, called chronic lung allograft dysfunction, which can be treated but not cured

Long-term outlook

Many people who have a lung transplant live for many years with a much better quality of life. The operation is a second chance. Although it takes effort and careful follow‑up, most people are able to return to many of the activities they love. Your transplant team will be with you at every step, and there is hope for a full and active life.

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