This guide has been written by people with bronchiectasis to help others living with this condition. The guide highlights why self-care is so important in being able to live well with bronchiectasis. Read about what works for many in terms of physiotherapy, exercise, diet, coping with breathlessness and fatigue, and taking care of your mental health.

• Bronchiectasis self-care guide (PDF, 3MB)
• Guida all’autogestionedella cura per lebronchiectasie (PDF, 3MB)

General advice to remember

It is good advice for people with bronchiectasis to look after their general health. Eat a healthy balanced diet and take regular physical exercise. Dehydration can make mucus thicker and harder to clear and so you should stay well hydrated.

Remember to take your medications as prescribed and get the annual influenza vaccination as well as the one-off pneumococcal vaccination.

As people with bronchiectasis are at higher risk of picking up infections, it is a good idea to wash your hands before eating, but also before preparing medications, performing chest clearance or any other medical procedures e.g. cleaning nebulisers.

Try to do some exercise every day

Exercising and keeping active can help clear mucus from your lungs and can often give you more energy and help you sleep better.

It has been proven that working the lungs through exercise actually improves breathlessness and reduces tiredness. Talk to your doctor or physiotherapist about the best exercise for you and try to do some every day, building up gradually.

• Pulmonary rehabilitation

  Pulmonary rehabilitation is a structured series of classes that usually take place over 6-8 weeks. It consists of exercise and education for people with chronic chest conditions but has been shown to have major benefits for people with bronchiectasis as well. You may want to ask your healthcare professionals to refer you.

  Read more in our Pulmonary Rehabilitation Factsheet

  Be aware that in most countries pulmonary rehabilitation classes are designed for people with COPD and so some of the education at these classes will not be relevant to you and your condition.
  

• Coping with fatigue

  It is common to feel very tired when you have bronchiectasis. You may find this tiredness, or fatigue overwhelming and leave you with little energy for everyday tasks.

  Fatigue affects everyone differently but you may:

  • Have general lack of energy.
  • Find it hard to concentrate or make decisions.
  • Feel irritable and get upset easily.
  • Have difficulty remembering things.
  • Have interrupted sleep.
  • Withdraw from family and friends.

  Some tips for conserving energy are:

  • Use breathing control techniques regularly and maintain good posture.
  • Save energy e.g. let dishes air-dry; sit for as many activities as possible.
  • Maintain a regular programme of gentle exercise.
  • Pace yourself by giving yourself more time to do things and plan rest periods.
  • Organise your time - do most energy consuming tasks at the time of day/week when you have most energy.
  • Get assistance - do not be afraid to ask for help.
  • Organise your space - put the items you use most in drawers or shelves that are between waist/shoulder level.
  • Try to get good-quality sleep.
  • Eat a well-balanced diet and drink plenty of clear non-alcoholic fluids.
  • Relax.

Keeping your chest clear of mucus (sputum)

Everyone with bronchiectasis should see a respiratory physiotherapist to be shown how to use chest clearance techniques. Ask your doctor to refer you.

A physiotherapist will assess you and examine your chest. They will discuss which methods can help you remove mucus (sputum) from your lungs and help you choose the best techniques for you. These are called Airway Clearance Techniques.

It is very important to clear your chest of as much sputum as possible to help reduce the number of chest infections that you have. The techniques shown below will help to reduce the obstruction in your airways, improve the amount of air getting into your lungs and help to reduce bacterial infections.

• Active cycle of breathing

  There are 3 parts to this technique:

  • Breathing control
  • Deep breathing, also called Thoracic Expansion Exercises (TEE)
  • Huffing, also called Forced Expiration Technique (FET)

  See Videos.

• PEPs e.g. Flutter. Acapella

  PEPs (positive expiratory pressure) are hand-held devices to help clear your sputum. Common trade names are the Flutter and Acapella.

  You breathe out through the device against a slight resistance which creates oscillations (flutters) in the pressure of your airways.

  This prevents the airways from collapsing and loosens sputum. You need to be assessed to see whether this device is suitable for you.

  See Videos.

• Autogenic drainage

  This is a breathing exercise that involves breathing out as far as possible to loosen any sputum from the small airways at the edges of your lungs. The sputum can then be moved to the more central airways making it easier to cough up.

  See Videos.

• Postural drainage

  This is a chest clearance technique that involves moving into different positions that help mucus to drain from different parts of the lung.

  It is often combined with percussion where gently clapping on parts of the body helps to move mucus from the farthest away parts of the lung into the central airway tubes where it can be easily coughed up.

Your physiotherapist can advise on how to manage your breathlessness

Most people get breathless from time to time, for example when you exercise or run for a bus. This passes quickly and should not be too uncomfortable.

However, some people with bronchiectasis can get breathless very easily. This breathlessness tends to be uncomfortable, severe and can come on with very little exertion. It can also make you feel very anxious.

• What can help?

  Learning to control your breathing will help you to control your breathlessness and reduce any feelings of panic and anxiety.

  Your physiotherapist will advise on how to manage your breathlessness which may include:
  

  • breathing control techniques
  • different positions to relieve your breathlessness
  • what exercise you can do
  • techniques to conserve your energy and pace yourself
  • relaxation techniques

• Be prepared

  Being prepared for breathlessness can help to reassure you when it happens and lessen your anxiety:

  • If you get breathless, or wake up breathless, sit up and lean forward e.g. sit at the edge of a seat/bed and lean your arms on a table.
  • Using a fan can help some people.
  • Keep your inhalers handy and take your reliever.
  • Try to use your breathing control techniques.
  • Try not to fight it and relax your shoulders.
  • If the breathlessness is new or worse, see your doctor.

Coping with low mood and depression

Feeling down for some of the time is a natural reaction as you learn to accept, and adapt to, your condition.

If you are feeling low for most of the time you could be depressed. Talk to someone and let them know how you are feeling.

Lots of people with bronchiectasis find online forums and support groups very important. Connecting with others who understand how it feels to have the condition can help you feel less alone. See Support in your language.

Your doctor or practice nurse have lots of experience of people with chronic conditions and may also be good people to speak to.

An exacerbation is also sometimes called a chest infection or a "flare up" of bronchiectasis.

Download our flowchart with information about how to recognise an exacerbation and what steps to take.

Keep communicating and sharing your feelings with your partner

Bronchiectasis does not affect your sexual ability but some associated problems such as lack of energy, coughing and breathlessness may affect your stamina, interest in sex and lead to avoidance of sexual intimacy, especially if you are worried about coughing up sputum. This can also be a worry when you start a new relationship.

Depression and anxiety can also have an effect on your sex drive. Your partner may feel it is better to avoid sex as they do not want to upset you. It is important to keep communicating honestly with each other as maintaining intimacy and closeness can help to combat any loneliness and isolation you may feel.

Talk to your partner about how you feel and any worries you may have. This will make it easier for you to deal with the situation before it becomes a problem.

• Top tips

  You may find these tips helpful but if you have any questions regarding your sexual relationship talk to your doctor. They will be used to talking about personal matters so try not to feel embarrassed.

  • Think of sex as another form of physical activity and plan when to have sex.
  • Clear any chest secretions using your chest clearance techniques before sex.
  • Use breathing control as you would with any other activity and have rests as necessary.
  • Choose a position that is less energetic and avoids pressure on the chest e.g. lying on your side during intercourse may be more comfortable and less tiring.
  • Do not make love if you are tired at the end of the day. Choose a time of day when you feel at your most refreshed and relaxed.

Recommendations for travelling with bronchiectasis

Based on 'Recommendations for travelling with bronchiectasis: a joint ELF/EMBARC/ERN-Lung collaboration' and supplemented by tips from travellers with bronchiectasis.

Advice on what you need to know before you go:

• Is it safe for most people with bronchiectasis to travel?

  It is safe for most people to travel with bronchiectasis. If your condition is stable and you are not feeling unwell then you are likely to have no problems with flying. However, you may still need to seek your doctor's advice before planning or booking a flight.

  Consult your doctor if:

  • You feel you may be getting an infection.
  • You have had recent bouts of being unwell.
  • You are in any doubt.

  Sometimes, it may be better to postpone your trip.

  You will need medical clearance to fly if:

  • Your fitness is in doubt as a result of a recent illness, a period in hospital, surgery or you have a condition that is unstable.
  • You need any special service or equipment e.g. assistance, oxygen.

  Some people, though certainly not all, find they experience more exacerbations when travelling frequently. If considering a job or career requiring frequent travel, you may want to consult your specialist doctor.

• Are there any destinations or conditions I should avoid?

  You need to take care with:

  • High altitude - lower oxygen levels may cause problems for some. You can still enjoy the mountains, but be wary of going too high, and too quickly. Follow recommendations for avoiding altitude sickness and do consult your doctor if you plan on going above 3050 metres (10 000 feet).
  • Cities with heavy air pollution - fine to pass through but inadvisable to stay. Check air pollution levels for individual cities on Air Pollution in the World - Real-Time Air Quality Index.

• What medications should I take?

  Pack your regular medications - just make sure:

  • It is all in your hand luggage in case of delays or your hold-luggage gets lost.
  • It is all in its original containers, backed up by a copy of your prescription, in case you are asked about it at a security check.
  • You have enough for your length of trip plus extra in case of unexpected delays on your return.
  • If your medication needs special storage conditions, check these are available in your destination.
  • If you are crossing several time-zones, ask your doctor or pharmacist for advice about adjusting when you take your medication.

  'Rescue pack':

  Your doctor may also prescribe a 'rescue pack' of stronger medication to tide you over in case you pick up an infection while you are away. Ask them:

  • How to recognise when to take it.
  • When/where to seek local medical help if you get worse.

  If you use a nebuliser:

  • Ask your doctor or physiotherapist about lighter, portable models.
  • Practise using and cleaning it before you go and take spare batteries or a plug adapter.
  • If it works on mains electricity, check the voltage in your destination. European nebulisers (220-230V) may not work on lower voltages, e.g. in USA or Canada (120V) - check voltages on www.worldstandards.eu
  • If flying, try to nebulise in the airport before and/or after the flight rather than on the plane if at all possible.

  A couple more things you need to do:

  • Check that any general medications recommended for your destination (such as malaria tablets) do not clash with your regular treatments.
  • Make sure that you are up to date with flu jabs/shots and a pneumonia vaccination (also known as pneumococcal vaccine).

  And don't forget everyday hygiene to guard against other people's colds/flu/other infections:

  • Wash your hands frequently.
  • Use hand sanitiser - have a little bottle in your pocket at all times.
  • There is no need for a face-mask, but don't share things like towels, pillows, drinking bottles/cups, sunglasses, cutlery or earphones.

• Should I take any documents about my condition?

  If your bronchiectasis is stable and you are managing it well:

  • Check the regulations about prescription medications wherever you are travelling. Some medications may only be allowed in certain amounts, or require documentation, or may be illegal in some countries - check with the embassy of the country you are going to.
  • Take a copy of the prescriptions for your regular medications.
  • Carry a letter from your doctor stating the purpose of the medication.

  Excess hand baggage is usually allowed for medical devices, including a nebuliser, physiotherapy device, oxygen equipment or bulky medications. In this case, again:

  • Make sure you have a doctor's letter about your condition.
  • Take a copy of your prescription or other supporting documentation.

  If you've recently been ill, or prone to frequent infections, ask your doctor for a Medical Report for Treatment Abroad (PDF), to guide medical staff in case you need treatment. This should include:

  • Your health status, allergies, chronic infections, regular medications and devices.
  • Your recommended treatment for an exacerbation or sudden worsening of your condition.

• What about chest clearance while I am travelling?

  Plan ahead, adapt and improvise:

  • Before you go, ask your physiotherapist about clearance techniques that can be done say, in a public toilet, without help or equipment.
  • Try to clear your chest before and after a flight or long bus/train journey.
  • If you use a saline nebuliser, on a long-haul flight you may have to use it in your seat and then do your clearance in the toilet to avoid disturbing other passengers.
  • Take plenty of tissues (plus plastic bags for their disposal - nappy bags are ideal!).
  • Avoid taking cough suppressants, they are not recommended for bronchiectasis.

  If you are on a busy guided tour, you may want to tell the tour manager you will need enough time and space to use your nebuliser and/or do physiotherapy.

• What travel insurance do I need?

  First, you must tell your travel insurer that you have bronchiectasis. They will ask you a series of questions to ascertain the level of risk - such as 'Have you been hospitalised in the past year?', 'How far can you walk without becoming breathless?'/

  Then make sure you have a policy that covers you for:

  • A pre-existing chronic condition (bronchiectasis).
  • Medical treatment in case that condition worsens while you are abroad.
  • Getting home in a severe health emergency.

• What if I need extra oxygen during a flight?

  Most people with bronchiectasis don't need this but check with your doctor well in advance to see if your lung capacity or oxygen uptake is especially low.

  If they say you may need oxygen during the flight, you will need extra documentation and you should let the airline know.

  If you are already using oxygen, then still let the airline know, and you may need to turn it up in flight.

  Information about air travel for people with all chronic lung conditions is available on the European Lung Foundation air travel website. It includes information on airline oxygen policies and contact details as well as details of oxygen providers in other countries,

• Will it limit my activities on holiday?

  No more than at home.

  One sport where you will need to exercise caution is SCUBA diving. This depends on your condition - changes in depth may cause air trapped behind phlegm to expand and cause damage to your lungs. Diving may be safe if:
  

  • You have no sputum, shortness of breath or cysts, and,
  • Your lung function is normal.

  If you are not sure, consult your speciality clinic. Otherwise, stick to a snorkel.

  Whatever you are doing outdoors it is best to use high-strength sunscreen as certain treatments can increase your skin's sensitivity. Also drink plenty of water to keep hydrated.

  If you are physically able, then you walk, run, cycle, swim, ski or whatever you fancy. Just take the conditions into account and don't overdo it. Or be lazy - it's your holiday.

  Happy travelling!

See also Drugs in development

• What kinds of research are there?

  There are 2 kinds of research study:

  • Clinical trials: studies which measure how safe and effective a medical treatment will be for human use. The treatment may be a medication, a device, a procedure, an exercise programme. A trial is any study which introduces an intervention (new treatment) to an individual with bronchiectasis.
  • Observational studies: aim to improve quality of life by measuring health outcomes. For example, these studies may look at information found from blood samples, breathing tests, lifestyle choices etc.

• Why should I take part in research?

  People who have an illness or disease often participate in research to help others, while many also like to have the chance to receive additional specialised healthcare which may not be available to them otherwise. This may include:

  • more frequent health monitoring
  • the chance to try a new treatment
  • faster access to care
  • the chance to feel more in control of their own healthcare.

  You will not be signed up a study of any kind without being given time to read information about it and to ask questions.

• Are there any disadvantages?

  Risk factors should be considered. Any risk associated with the study will be explained to you by the research team.

  Many studies will reimburse participants for travel to/from clinics, but if you do not like the inconvenience of regular clinic visits or the thought of taking a medicine, then a trial may not be the best option for you.

  If you are keen on taking part in research but one study does not suit due to any disadvantages you find, another could be perfect for you. Ask the research team if there are other studies available you could participate in.

• How can I find out about research studies?

  Talk to your healthcare professionals if you want to find out more about taking part in a trial.
  
  You can also search these databases for current bronchiectasis trials taking place across the world:

  • EU Clinical Trials Register
  • Clinicaltrials.gov (US National Library of Medicine) - covers 200 countries.