Answers to questions posed by conference attendees
The answers from the speakers to the questions posed by conference attendees are posted below. Please note that the questions and answers have been included in the session that they were asked in. You may need to scroll through all the questions to find those of interest to you.
Could following a low-salt diet help with bronchiectasis?
Low-salt diet hasn’t been investigated for bronchiectasis and there’s no reason to suggest that it will help. However certain relevant comorbid conditions (osteoporosis, kidney disease,…) might benefit from this intervention.
How relevant is a bronchoscopy procedure for diagnosis of bronchiectasis and/or ABPA infection? What would a bronchoscopy achieve?
Bronchoscopy can have many functions. It can be used when people are having trouble expectorating sputa, for example during an infection, and are too weak to cough it up. Bronchoscopy can also help to do culturing and look for bad bugs. Bronchoscopy can certainly be relevant.
My mucous membranes are very dry due to the menopause. Can that lead to bronchiectasis?
Menopause is not a cause of bronchiectasis.
Is there a genetic test for bronchiectasis so I can find out if there is a risk I will pass it on to my children?
This will depend on what caused your own bronchiectasis. Some of these causes have a genetic background. As bronchiectasis has such a wide range of possible causes, this isn’t advised to do as standard. However, research is ongoing to elucidate if more underlying genetic reasons can be found for bronchiectasis.
How dangerous/what effect do woodburning stoves/fires, scented candles etc have on our lungs and should we be avoiding them?
In general, they need to be looked at as air pollution. We know from research that air pollution will increase the risk of having an exacerbation. Try to avoid these if possible.
I have Kartagener Syndrome. How often should I have a CT scan of my lungs?
CT is useful for diagnosis and if symptoms are getting worse, but guidelines suggest that if symptoms are stable and you are getting on well there is no need for regular CT scans.
Can cystic bronchiectasis be mistaken for emphysema?
Not usually, as the wall thickness of these radiological changes is different. Radiologists can tell the difference in most cases.
Should bronchiectasis patients avoid hot tubs and steam rooms?
From a “secretion management” point of view, this could actually help bring up more phlegm, so if you are avoiding it because it causes more cough, it could actually be beneficial. We have no evidence currently that they can increase the risk of infection, but we would advise caution and not to use them if you have severe bronchiectasis. This comes from literature from CF where hot tubs and steams rooms are to be avoided. Additionally, for some people, hot tubs and steam rooms can make them feel short of breath, so you should then avoid them.
Does bronchiectasis lead to sleeping disorders?
Sleeping problems are quite common in bronchiectasis- especially if coughing is bad at night. Nasal symptoms can also cause problems with sleeping or with breathing during sleep. Finally, some data suggest that patients with bronchiectasis have higher prevalence of obstructive sleep apnea and excessive daytime sleepiness.
Is there a clear classification of mild, moderate and severe levels of bronchiectasis?
There are scoring systems for doctors like the bronchiectasis severity index that does this but it is often not routinely used. In general, determining severity should be done on an individual basis, looking at these scores, but taking into account co-morbidities, compliance to therapy and response to therapy. All these factors will determine the evolution.
My bronchiectasis was diagnosed when I was 17. I am now 73. What category would my bronchiectasis be in?
Categorisation of bronchiectasis is based not only on age. Severity of disease is scored with a few essential elements: age, number of lobes affected, exacerbation rate, pathogens present, breathlessness score, BMI, and lung function. These are the main ones but other comorbidities are also important (reflux, osteoporosis, etc).
My bronchiectasis is mild. What can I do to prevent it getting any worse?
Airway clearance exercises, staying healthy including taking regular exercise, and a good diet. Preventing chest infections, either by quickly treating them if they are rare, or taking preventative medication if they are frequent (e.g more than 2 per year). In most people it will not get worse as long as you keep the airways clear. Compliance to treatment is an essential element to prevent getting worse.
Why does bronchiectasis always seem to be under the umbrella of COPD and not treated as a separate condition?I have never smoked!
It is definitely different from COPD! We need to do more work to raise awareness of the condition - my patients say the same thing, that they are frustrated to always be mistaken for having COPD. The two conditions are very, very different.
As well as the airways being dilated in bronchiectasis, are the airway linings thickened? And has the elastic quality of them been compromised?
Yes - both are usually true. The airway walls are damaged as well as being dilated.
Are bronchiectasis patients more at risk of lung cancer?
There are some reports of a small increase in risk, but it is heavily biased by the fact that many COPD patients who have smoked also have some bronchiectasis. The risk of lung cancer in a bronchiectasis patient who has never smoked is very low, and not substantially more than the general population who have never smoked.
Can we use protein powder to increase weight and amount of protein in the diet?
I would be very careful doing this on your own. Too much protein might actually do more damage than good. Try talking to your dietician before experimenting with high levels of protein. They will provide you with a balanced and enriched diet that can help you.
Is there a connection between ulcerative colitis and bronchiectasis?
Yes, there is increased airway inflammation and bronchiectasis in people with ulcerative colitis and Crohn's disease - another form of inflammatory bowel disease. In addition to the usual treatment for bronchiectasis it is common for inflammatory bowel disease patients to feel that steroid inhalers really help. It doesn't work for everyone, but when it works the research shows it can be extremely effective for this type of bronchiectasis.
Is there a connection between diverticular disease and bronchiectasis?
There is no link. The only bowel link is with ulcerative colitis and Crohn's disease.
Is there a link between having bronchiectasis and then later developing an autoimmune disease?
It does occur- we recognise that some people with bronchiectasis have auto-antibodies and later on go on to develop an autoimmune disease. However this doesn’t happen to the majority of people.
How can I sign up to a clinical trial?
You can speak with your doctor for information on current research local to where you are.
Does pet dander have an impact on bronchiectasis?
It can impact individual patients. There are tests that doctors can do to see if you are sensitized to pet dander - patients with bronchiectasis are more likely to be sensitized because they struggle to clear inhaled allergens from the lungs.
Is there any known relationship between mast cell / histamine disorders and bronchiectasis?
Patients with bronchiectasis may be more "sensitized", meaning more likely to have a reaction to environmental allergens than other people - there is published research on this. It is possible it happens because the lungs are less able to clear the allergens so the body makes a more intense allergic response.
Does it matter if you swallow sputum a lot during the day?
No, sputum is harmless to swallow. It gets broken down like anything else you eat. People without bronchiectasis swallow about 150ml per day anyway!
Is there any link between bronchiectasis and haemoglobin levels?
Chronic oxygen shortage can increase your haemoglobin. Chronic inflammation can alter iron storage and decrease haemoglobin.
Is it OK to fly with bronchiectasis?
Yes, nearly all patients with bronchiectasis can fly. ELF has issued guidance here - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6819988/ and on our website https://www.europeanlunginfo.org/bronchiectasis/se...
Where can I get more information on singing and lung health?
You can find more information here: http://www.themusicalbreath.com/singing-for-lung-h...
Can you reverse bronchiectasis or heal your lungs or is the damage already irreversible?
The damage is usually irreversible. I would like to think medical science might find ways to reverse it in the future, but that is a long way off.
How would you treat patients who are allergic to myacin drugs?
Drug allergies are commonly encountered in both bronchiectasis and CF. Usually there are alternative antibiotics, but this depends on the bacteria that need treatment. Sometimes the diagnosis of “allergy” is incorrect, and there are tests to ascertain it. There are also ways to overcome an allergy in certain cases, such as giving very small amounts of the drug and gradually increasing the dose. This is called “desensitization” and is needed at the beginning of the antibiotic course whenever the drug is needed.
Do you have any suggestions for colonization/infection prevention in people with bronchiectasis, for example recommended cleaning regimes for equipment? I would assume it’s better to prevent these infections in the first place rather than treat them?
We don’t always know what the source of the infection is. It’s important to clean nebulizers, chest clearance equipment according to the instruction by the manufacturer.
Is it possible to completely remove aspergillus from the lung in a non-asthmatic person?
Treating aspergillus requires long-term (months) antimicrobials. It is not always possible. Sometimes Aspergillus creates an allergic reaction, which is treated with corticosteroids and other drugs which are directed at the inflammation, with or without anti-fungal drugs.
I was told bronchiectasis is a chronic progressive disease. Will it still be progressive/get worse if I (can) avoid pneumonias?
Bronchiectasis is not always progressive. The aim of treatment is to stop it from progressing. By keeping the airways clear through physiotherapy and exercise and by taking appropriate treatment we can prevent it getting worse, and frequently even make symptoms better. Preventing chest infections and pneumonias is very important to stop it getting worse over time.
Is a treatment with bacteriophages possible?
This is being tested in research but is not a treatment that is currently in clinic use. Bacteriophages have not been proven safe and effective yet for chronic airways disorders. It is a really promising idea and I hope we see more studies.
How long can people with bronchiectasis take antibiotics for?
There is no time limit for long term antibiotics - they are usually continued for preventing infections as long as they are effective. For treatment of a chest infection, antibiotics are usually not used more than 2 weeks, particularly if the symptoms are settling.
Would long term use of antibiotics introduce the risk of resistant bacteria?
It can and does happen. I have some patients who have been on long term antibiotics for 10 years and have no detectable resistance. Nevertheless we need to look out for it. Using antibiotics is always a balance of the risks and benefits. There are risks, and side effects, but your consultant will have looked at this and decided the benefits outweigh the risks.
For patients with bronchiectasis with repeated coughs, how do we identify that we may have an infection which may require antibiotics?
A change of symptoms is the key. For instance, more coughs, harder to bring up phlegm, discoloured phlegm, more fatigue etc. Think about what is “normal for you”. It is also helpful to take a sputum sample when you suspect something is different with your health.
With the prevalence of Haemophilus Influenzae bacteria being second only to Pseudomonas in bronchiectasis, would it be advisable for patients to get the H.I. vaccination?
No, the Haemophilus vaccine attacks Type B haemophilus, whereas the Haemophilus that infects the lungs is usually a different type (called non-typable haemophilus) and so unfortunately the vaccine doesn't work against it.
Can Pseudomonas in a bronchiectasis patient be passed to a Cystic Fibrosis (CF) patient?
It is possible, although transmission from bronchiectasis patients (rather than CF) seems to be very rare. People with CF are usually advised to avoid contact with other people with chest conditions such bronchiectasis and clinics in most countries are segregated to avoid CF patients being in contact with others who have high risk bugs like Pseudomonas.
I have been recently diagnosed with Pseudomonas and am concerned if this can be passed on to family and friends.
Pseudomonas usually affects lungs with a structural deformity. If your family is well and don't have Cystic Fibrosis or bronchiectasis, they're probably safe.
If I am colonised with Pseudomonas what are the treatment options?
Once it has been there for a long time it is usually not possible to get rid of Pseudomonas. If the condition is stable and chest infections are not frequent it is not always necessary to use antibiotics, but regular airway clearance and exercise is very important. If chest infections are frequent the ERS guidelines suggest either long term azithromycin or trying an inhaled antibiotic to suppress the Pseudomonas.
If you have a second bout of Pseudomonas is the treatment the same as the first bout (IV antibiotics and 3 months of inhaled antibiotics)? Can it be treated the second time round?
Some doctors recommend a second course and others do not so this would need to be discussed with your doctor. Most doctors believe treatment is less likely to be effective if you have had Pseudomonas before.
If you have had Pseudomonas once, will Azithromycin still be important as a long-term antibiotic, or is it contra-indicated?
Azithromycin works very well to cut chest infections even if you have Pseudomonas. There was new research last year showing it works in this situation so you can keep using it.
If you have a long period of producing the same bug, is this classed as one exacerbation or numerous if you have several tests and courses of antibiotics?
Bugs can be in the lungs even when you are completely well, so the presence of a bug doesn't mean an exacerbation. So exacerbations mean worsening of symptoms, usually lasting more than a few days. Therefore the way you know if the exacerbation is improved is if the symptoms get back to normal, not if the bug goes from the sputum. The bug may never go.
How many people get hearing loss or tinnitus from Azithromycin? Are there good alternatives being developed?
This happens in less than 1 in 50 cases. We usually recommend stopping azithromycin if it happens because it can be reversible if the drug is stopped early, but might become permanent if the drug is continued long term. There are a few alternatives in the guidelines including other oral and inhaled antibiotics that you can discuss with your doctor.
Can treatment with immunoglobulin help with Pseudomonas?
Immunoglobulin can be used for people with immune deficiency where the body doesn't make enough antibody. If this problem is not present, we don't know that immunoglobulin can help although there is some research going on into this.
Why is Pseudomonas so difficult to get rid of? I've had it for over 4 years and even with regular antibiotics (oral and via IV) I never seem to get any better.
Pseudomonas lives in a protective bubble called a biofilm which makes it hard to get rid of. There are research looking at different treatments that can break through the biofilm. In addition, treatments like azithromycin can help to inhibit this and have been proven to help for some people with Pseudomonas.
Using Ciprofloaxin for Pseudomonas has led to severe tendon tightness. Is this a common side effect and what alternatives are there?
This is a common side effect and there is a warning from the European Medicines Agency about this side effect. This talks about a risk of tendon rupture with ciprofloxacin and so you should discuss this side effect with your doctor.
Do you recommend patients keep a supply of antibiotics at home for exacerbations? It can happen at night or at weekends when it can be difficult to obtain medical help.
This makes sense and is a part of the self-management program you share with both your GP and your bronchiectasis experts. You and your doctor should discuss in detail when you should start the antibiotic, what dose to take, etc.
I have an allergic reaction to penicillin group antibiotics. What would be the next best antibiotic to use?
It depends on which bacteria you grow in your sputum so your doctor or nurse will ask you to send sputum samples to check and then choose the right antibiotic.
What if you have all the symptoms of infection, but nothing is grown in the lab?
If your symptoms are severe, your doctor will make sure that everything has been tried to identify the bacteria responsible. This may include bronchoscopy with lavage for microbiology. Not all worsening of symptoms are due to infections. They may be due to mucus plugging or inflammation without infection. Increasing your chest clearance might settle the symptoms. If you are still experiencing exacerbations despite these measures, macrolide maintenance treatment may be an option. If sputum tests are often negative your doctor might wonder whether you have a different type of inflammation that needs treatment such as steroids.
Is one pneumonia vaccination sufficient or should a bronchiectasis patient have one annually?
It depends on the guidance for the country in which you live. For example, in the Netherlands, the guidance suggests that bronchiectasis patients have a pneumonia vaccination every 5 years.
Can steroid inhalers increase the risk of fungal infection in the lungs?
No, fungal colonisation of the airways is not all that common and although steroid inhalers might increase the risk, most people will not have this problem.
Is raised eosinophil levels associated with fungal infection?~
There is a condition that is associated with fungal sensitization (allergy) to Aspergillus - a fungus. This condition is called ABPA and is associated with elevated eosinophils. Sputum culture sometimes picks up fungi, but there are specialized conditions for fungi which are not routinely used in all labs. If suspected to be important, we sometimes ask for a fungal culture.
When is the right time to start taking steroids and antibiotics?
This will differ from patient to patient. It is hard to give a general advice. However, many of my patients get to know their symptoms so well that they know when an exacerbation is starting and can initiate treatment (like increasing their chest exercises or taking their rescue antibiotics) early to prevent things getting worse.
Is there any evidence for the benefits of halotherapy?
Not that I am aware of, although I have been told by a few of my patients that it has wored very well for them.
I have had asthma most of my life. About 4 years ago I was diagnosed with bronchiectasis. I do not have the classic symptoms of bringing up sputum. Why is this?
Not all BE patients are frequent sputum producers. You have socalled ‘dry bronchiectasis’.
I have asthma and aspergillosis as well as bronchiectasis and it can be difficult to know which condition causes each of my symptoms. Do you have any advice?
This will differ from patient to patient. It is hard to give a general advice.
Can coughing cause fractures of vertebrae?
Coughing will mostly involve rib-fractures, but I can imagine that vertebrae may be damaged too if vulnerable, eg in osteoporosis.
I often feel very cold even when the house is warm. Is there a physical reason for this related to bronchiectasis?
Not that I am aware of. What is your weight/ body mass index? If this is too low you will get cold sooner.
Is Inducible Laryngeal Obstruction a symptom of bronchiectasis?
Not in particular.
When I go out in cold air it increases mucus in my nose which then travels down and causes me to cough more than normal. Is there anything I can do?
You may talk to your ENT specialist and see if you have an indication for nasal sprays or capsaicine treatment.
Breathlessness hits me on inclines, even small inclines, yet I can walk on undulating flat land for miles and miles.Why does this happen and how can I break this pattern?
This could be due to hyperinflation, due to the extra effort you have to put in when walking an incline. Best to discuss this with your physiotherapist.
Is weight loss or the inability to put on weight a symptom of bronchiectasis?
I find when I lie down, I begin coughing and producing phlegm. This stops if I sit up. Any solutions please?
Try to conduct vigorous airway clearance before lying down.
How often should one use a nebuliser?
There is no general rule. If you nebulise normal saline or hypertonic saline, it depends on how “sticky” your secretions are. Please discuss it with your chest physician and respiratory physiotherapist.
I am taking belometasone via inhaler for asthma. Does this have any effect on the bronchiectasis?
Not usually- trials so far show these inhalers really help asthma (so keep using it) but probably have little effect on bronchiectasis unless there is a special type of inflammation.
Can patients learn the things (features/triggers) that announce the start of an exacerbation and so allow treatment to start early?
Yes, many of my patients get to know their symptoms so well that they know when an exacerbation is starting and can initiate treatment (like increasing their chest exercises or taking their rescue antibiotics) early to prevent things getting worse.
Can medical cannabis be used for treatment?
There is no evidence for this and it is not recommended by the guidelines, so we can’t comment on this.
Are there any side effects from using saline with a nebuliser twice a day, such as increasing blood pressure from salt levels?
The amount of salt getting into the system is very low, so should not have an impact on blood pressure.
I have bronchiectasis and have issue with my low immune system. What treatments work for patients like me?
It depends on the type of problem you have with your immune system. There are some specific treatments for low immune system (for example if your body does not make antibodies they can be replaced) but if by "low immune system" you mean you are getting a lot of chest infections, the treatments we recommend are chest clearance and sometimes additional medications, which your doctor can advise you about.
Is it common with bronchiectasis to have constant joint pain and fatigue?
Fatigue is a very common symptom in bronchiectasis. Still, it is not discussed as often as it should. Exercise could be a way to manage this.
Is it common with bronchiectasis to have high blood pressure and high heart rate?
This is not a very common feature of bronchiectasis and so you should perhaps discuss this with your doctor or nurse in case it is caused by something else.
Is there a link between Vitamin D and bronchiectasis?
People with vitamin D deficiency seem to have more severe bronchiectasis and more risk of chest infections, but we don't know if this is cause or effect (because people with a worse chest condition don't get out as much in the sunlight). We can't say whether taking vitamin D supplements would help bronchiectasis, but there are often good other reasons to take vitamin D (such as for bone health). Some research on this topic is available here- https://thorax.bmj.com/content/68/1/39.long
Can you get chest pain with bronchiectasis?
Chest pain is an important symptom that you should always discuss with your doctor. Around 1/4 of patients with bronchiectasis will regularly experience chest pain. It often happens due to mucus plugging in the airways and can therefore can better with doing more airway clearance or taking treatments to improve clearance of mucus. Some research on chest pain is available on this link - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3526875/
Is air trapping linked to bronchiectasis?
Air trapping is caused by small airways disease, by inflammation or infection. It is present in a many bronchiectasis patients, but not in all.
Could using hypertonic saline be harmful?
You should have a test to monitor any side effects after its use, before starting it. Most common complaints are increased cough, sore throat, chest tightness, taste. You complete a spirometry before and after using it. If you experience problems, you could try normal saline nebulisation.
What are the basic tests that can be used to diagnosed primary immunodeficiency in bronchiectasis patients?
Tests could include a blood test to determine immunoglobulins (IgG, IgM, IgA) and IgG subclasses levels, lymphocytes subpopulations in the blood, the response to a vaccine, and a full blood count.
Can poor gum health illustrate an exacerbation?
Some of my patients say that they get other problems around the time their bronchiectasis flares up - examples include gum infections, cold sores, shingles or other types of problems. It is thought to be due to reduced immunity while the body is fighting the chest infection.
Does bronchiectasis cause joint pain?
Bronchiectasis doesn't usually cause joint pain, unless the joint problems are linked to osteoporosis, in which case there's an indirect link. Also, rheumatoid arthritis can be linked with bronchiectasis, but it has distinct symptoms. Ask your GP for advice.
Is there a link between bronchiectasis and bowel problems, such as long term diarrhoea?
You should discuss this with your doctor. There is a link between bronchiectasis and some bowel problems such as inflammatory bowel disease. Most people don't have this, but instead get bowel trouble because of repeated courses of antibiotics that upset the bugs in the gut. Long term diarrhoea can be caused by other things however, and so it’s important you speak to a doctor about this.
Is there a link between bronchiectasis and reflux, and is there any treatment for reducing or eliminating reflux?
We see an increase in presence of reflux in bronchiectasis and we know that bronchiectasis is probably affected by reflux in some patients. Why this happens is unclear. You can do a lot to reduce reflux without needing drugs. Eating meals earlier in the evening helps (as food sits in the stomach overnight and reflux can be worse at night). Drugs such as caffeine and alcohol make reflux worse so cut down on these (particularly at night). Physical activity and weight loss (if overweight) can also help. In terms of drugs, the most common treatment is a proton pump inhibitor which makes the reflux less acid and gets rid of heartburn. This doesn't stop things coming up from the stomach but does reduce symptoms. Other treatments are those that help to empty the stomach can be used if it is very bad and are usually started by specialists.
Is it common in bronchiectasis to choke when eating?
In my opinion this is not a typical symptom. It may be a sign of gastro-intestinal or oesophageal problems and I would advise to talk to your doctor if it happens repeatedly.
Is it OK to take acetylcystein continuously to help clear the lungs?
Acetylcystein has not been proven useful in clinical studies, but I do have some patients who experience improvement while using it. To my knowledge acetylcystein will not cause long term damage.
Are NAC pills good or bad if you have mucus plugs in the lowest parts of your lungs?
N-acetylcysteine is sometimes used as a treatment for mucus plugs. There is not much evidence, but a lot of patients and doctors think it work to make mucus thinner.
Could Roflumilast be a drug used in bronchiectasis therapy?
There is no real data. It is used for COPD and I hear from some patients that they found it helpful, but we have no research evidence that it works.
Could carbocisteine be used to reduce the thickness and stickiness of phlegm?
If standard airway clearance techniques do not work and you continue to produce lots of sputum reducing your quality of life, we would suggest speaking with your doctor about trying this as a treatment. Many patients do find it useful.
Is there evidence that carbocisteine can reduce the severity of bronchiaetysis or stop it from getting worse?
No, but there is a big UK trial of carbocisteine called CLEAR which is trying to answer this at the moment.
Could anti-inflammatory medication help? I use one for costochondritis caused by coughing, and find that my bronchiectasis is improved at the same time.
A revision of literature a few years ago couldn't find a study answering that question. There are some studies on inhaled non-steroid anti-inflammatories, suggesting some effect. So in short, we cannot exclude that these drugs might feel you a bit better by tackling part of the inflammation, yet there's no sound data to support their common and routine use.
I had side effects from IV antibiotics. Could inhaled antibiotics treat pseudomonas or do they also have side effects?
Inhaled antibiotics might be helpful for you. Talk to your lung doctor to discuss the option as they are not available in every country. There are side effects, mainly bronchospasm.
Is there always a productive cough with an exacerbation?
Productive cough is not necessary to diagnose an exacerbation. Some patients will just have increased cough, shortness of breath, wheezing and/or fatigue. Everyone is different and so it is not only about one symptom.
Is it possible to increase lung capacity to compensate a little for decreased lung function?
If you have decreased lung function (for example on a spirometry test) talk to your doctor or nurse about whether you should be taking an inhaled that increases lung capacity. Doing regular exercise will increase lung capacity and strengthen the muscles that are used for breathing and exercise, meaning you can overcome some of the limitations caused by reduced lung capacity.
Is it good or bad to do a lot of heavy exercises: run, trail, basketball...?
It is nearly always good to do exercise. It is hard to comment without more information on your condition but there are very few situations where heavy exercise is not a good idea.
Is there a link between excess mucus production and Eustachian tube infection/blockage?
Yes, inflammation in the nose is linked to inflammation in the lungs - it is all one long tube and so they are fully connected. Up to 70% of bronchiectasis patients have rhinitis, sinusitis, nasal polyps or other upper airway symptoms.
Is it normal to have really thin phelgm?
Yes, it's normal for the consistency to change - it just depends on factors such as how hydrated you are and how much you've been exercising.
Is a reduction in energy in the legs a consequence of bronchiectasis?
This can indeed be the case. Talk to your doctor to exclude other causes (salt disturbances, neurological reasons, etc). To improve energy in the legs, rehabilitation or physio exercise/programmes can help.
I can walk for miles with no problem but when I wash my car I can become breathless. Is that normal?
Many patients with bronchiectasis say they have breathlessness when bending over or doing lifting tasks but are less breathless when going for long walks. You are using different muscles and different bits of the breathing system for each activity.
Are variations in sputum production normal, or would this be considered an exacerbation?
Variations can be normal. Also look at colour, as we know that yellow and certainly green and brown indicates increased inflammation and maybe infection. The hard part is that a patient will need to learn how their body is. Every patient is different. So natural variations are possible and often not relevant, and with time you should be able to learn and understand when a certain increase in volume or colour is different from before. That should trigger you.
Can you have surgery for bronchiectasis, for example to remove a lung lobe that is especially affected?
Surgery can be very effective for certain patients, certainly with localized disease, but the decision to operate should be made with care.
Is a bronchoscopy useful in the treatment of bronchiectasis?
It's certainly not routinely used, but it can really help in patients with difficulty expectorating and having massive sputum plugs in the lungs. This is however very rarely needed as a treatment option. We can instead use induced sputum technique which is a procedure where a patient receives a nebulized solution for 10 minutes in the clinic (eg hypertonic saline) that triggers cough and sputum and help then the patient to expectorate.
When lungs bleed, what is happening?
Inflammation causes the body to make extra small blood vessels which can easily bleed. It is not usually serious because these vessels are small, but it can be very distressing. The vessels are more likely to bleed when there is an infection and so your healthcare professional may recommend an antibiotic when bleeding happens or gets bad.
I often have a hoarse voice which makes talking difficult. Do you have any suggestions?
If this does not improve with airway clearance and good hydration, I suggest you get an assessment from a speech and language therapist.
Is bronchiectasis/reduced lung capacity likely to explain reduced short term memory and difficulty concentrating?
This is not usually related to lung capacity, although having a chronic illness has been reported to affect memory. It still may be important to mention this to your doctor to make sure it is not being caused by something else.
Are the treatments for bronchiectasis and Cystic Fibrosis similar?
Many of the treatments are similar, but it is important not to mix them up too much as there are treatments that work for bronchiectasis and not for CF and vice-versa, so we try to make sure everyone understands they are separate.
I am still being treated for asthma by our GP but I’ve since been diagnosed with bronchiectasis by the hospital. Should I stop using my inhalers?
Never stop inhaled medication without discussing first with your doctor. This is very important as stopping inhalers when you have asthma can be dangerous.
Any tips on how to stop wee from escaping when coughing a lot? This happens to me when I cough deeply or when nebulising when I'm coughing a lot.
This is a really important problem. If you can, you should discuss this with your doctor or physiotherapist as they may be able to recommend both pelvic floor exercises to improve bladder control, but also treatments to help reduce cough and cope with cough to reduce the pressure.
I always hear crackles after nebulising and lying on my back, but only after I exhale fully. I do 1 hour of active cycle of breathing, autogenic drainage (specially low breathing) and different huffs. After 20 minutes some secretions will come up, but the crackles at the end of the breath remain.
This is a sign of remaining secretions. You may need to practice longer sessions, increase how often you do your airway clearance techniques or even review your technique and consider a different technique/device. Some people can never feel “completely clear”. Please get individualised advice from your chest physician and respiratory physiotherapist.
What are the best PEP treatments out there? I've read that Acapella surpasses others but it is not available for purchase in my country nor is it known to my specialist doctor. Why is this?
There are a great variety of different PEP devices. We have no evidence that one is better than another. Commercial availability and insurance cover seems to be one of the reasons why a device is preferred in a specific area.
I have moderate bronchiectasis but don't cough. I read that this is called "Lady Windermere" - is that accurate? Is there any risk to not being able to cough?
Lady Windermere refers to the condition where you have bronchiectasis due to non-tuberculosis mycobacterial infection, mostly in the middle lobe. Ladies with this condition were known for their tendency to suppress their cough, because coughing was frowned upon at the time. This may lead to increased infection and inflammation. If you do not suppress cough, but just not feel the need to cough, you either may not have many secretions to cough up or secretions are there but you do not feel them. A respiratory physiotherapist may help you to notice the difference.
When will there be something to something to stop me having to have many major coughing fits every day, coughing up mucus? It is exhausting.
On the one hand coughing is normal. It's your body getting rid of sputum, but in bronchiectasis patients it can get a bit too much and very tiring. In my experience, trying to do daily once or twice autogenic drainage techniques combined with hypertonic saline and physiotherapy twice a weekdoes help to alleviate these symptoms.
Are there any specialist physiotherapists in UK who work with bronchiectasis patients to support good lung function?
There are a lot of specialist respiratory physiotherapists in the UK, some with a specific interest in bronchiectasis. If you need a referral, contact your GP. You could also ask if there is community support for respiratory diseases available in your area. You could also consider Pulmonary Rehabilitation.
Is there a huge need for patients to have access to physiotherapy, and if so, how often?
Physiotherapy is one of the cornerstones of bronchiectasis treatment, both for sputum evacuation and increasing exercise capacity. The ideal frequency differs per patient.
I experience pain in my chest when mucus is stuck, and it relieves when I clear the mucus. Why is this?
This is very common - the lungs spasm to try to get rid of the mucus and it is felt as pain. Doing your physio exercises helps to clear the mucus. It is worth making sure you are always well hydrated (keeps the mucus less thick) and speak to your doctor or physiotherapist about what else you might do to improve mucus clearance to stop this happening.
I am scared to cough in case it triggers haemoptysis (bleeding from the lungs). Is this a possibility?
Usually not- vigorous coughing can cause small amounts of blood but it is not usually serious (it’s just from the surface of the lung and could never bleed enough to be serious). It is important that you cough to clear the lungs and so I would not suppress cough for any reason.
Is salt water swimming an effective combined Airway Clearance Technique (ACT)/exercise therapy?
Studies so far show that exercise cannot replace “formal” ACT, but it is good to combine the two.
Is it advisable to exercise whilst having an exacerbation?
It depends on how severe the symptoms are. In a mild exacerbation often going for a short walk can loosen up secretions and help relieve the symptoms. It is better not to be completely inactive during an exacerbation as it impairs clearance of mucus.
Can breathing exercises cause hoarseness? Could that cause permanent damage?
I have never come across it, but if you cough excessively you can cause some damage to your vocal cords. So, this may happen if the exercises are not done properly and include extremely excessive coughing.
How do you do your clearance over the side of the bed?
I use a technique called Postural Drainage, combined with another technique called the Active Cycle of Breathing. You need a specialist respiratory physiotherapist to teach you how to do these techniques properly, and they would advise whether they are appropriate for you.I like Postural Drainage because it uses gravity to assist with the movement of mucus, but it’s not advised for everyone. I do it on my own, using the Active Cycle of Breathing at the same time to force mucus out of my lungs. There are other alternatives so do seek professional advice. There are videos on YouTube and on Bronchiectasis - Patient Priorities (europeanlunginfo.org
Do your lungs ever bleed? I love exercise but find if I use weights like you showed it starts a little bleed.
Yes, from time to time my lungs bleed a little, my mucus becomes pink or streaked with blood. It’s a normal part of having bronchiectasis and not generally anything to worry about unless it’s a large quantity or long-lasting, in which case seek medical help.
Barbara said one thing that resonated with me: she feels embarrassment when coughing in public toilets or at work. Does she have any tips?
I wish I did! There’s not much we can do about it I’m afraid other than explain we have a lung condition. If in a public toilet I try to get the mucus to move upwards by the Active Cycle of Breathing (deep breathing and huffing) which is quieter than a hacking cough, but you have to cough eventually. If necessary, cover your coughing by flushing the toilet.
To what extent do you think your horn playing made a significant difference in managing your condition?
I think that my horn playing was part of a multi-faceted, self-managed approach to get me as fit and as strong as possible. Of course, whilst practising the horn one is constantly thinking of the lungs, using them and training them with specialist exercises. I have no doubt that this played a huge role in the general health and improvement of my lungs; the answer to what extent, however, most likely lies in the fact that I was discharged from the hospital after seven years!
What was it like growing up with a serious lung condition? Was it hard to keep up with your peers?
I think precisely because we worked so hard at battling the condition, that meant that I never really felt behind in relation to my peers. I was also diagnosed early enough in my life that I never really knew any different. There were times, however, when I was extremely frustrated that I had to continually take antibiotics and, especially, at how much time the physiotherapy consumed.
Do you find that your music practice is ‘enough’ physio wise for your condition or do you also have to do other physiotherapy?
From a physiotherapy point of view, I would say that my horn practice was definitely not enough by itself to manage my condition. Whilst it certainly was a crucial aspect of my self-management, it was always in conjunction with other methods of physical therapy such as sport, physio exercises and specific breathing exercises with various devices.
Do you think learning any wind instrument have a similar effect on breath control, if not lung capacity?
When playing any wind instrument, the lungs are in constant use. I think what makes it so interesting from a physiotherapy point of view is the variety of ways in which the lungs are used. It stretches your capacity, your ability to breathe fully and in different volumes and the ability to control the outbreath. All these different ways of using the lungs, common sense would dictate, can only be of benefit in the long term for their healthy function.
How common is fatigue? Most days I feel really tired. I sometime worry that this is psychosomatic rather than a symptom of my bronchiectasis.
Around 50% of patients with bronchiectasis suffer with severe fatigue so it can definitely be due to your bronchiectasis and fatigue gets better when bronchiectasis is well treated. There is some research on this here- https://academic.oup.com/qjmed/article/105/3/235/1572979. You are definitely not alone!
Do you have any suggestions for diet and exercise to help with fatigue?
In general, I would suggest:
- making sure to include sufficient proteins in the diet, and if needed add extra through dietary supplements
- eat small, fresh meals, several times each day
- start exercising with a respiratory physiotherapist, in order to avoid 'overtraining' and getting more tired from it
- start doing more exercises for muscle strength, in addition to 'cardio' exercises.
How do we know if bronchiectasis is related to our job?
Most causes of bronchiectasis are not occupational. Your doctor should do some tests when you are first diagnosed to try to find out why the bronchiectasis developed.
Has there been any link between bronchiectasis and exposure to air pollution?
We don't know if air pollution exposure can cause bronchiectasis but we know that air pollution can make it worse. Here is a study that showed that chest infections are more likely on days when air pollution is high - https://erj.ersjournals.com/content/52/1/1702557.long
Since moving from a town to the coast, I walk on the beach every day and feel much better. Is there any research about climate and bronchiectasis?
We know that sea air (salt) helps to clear mucus by hydrating the sputum. We sometimes use nebulisers to simulate this (allowing people to inhaled salty water) as not everyone can move to the coast!
Does a deficient mannose binding lectin gene predispose a patient to getting bronchiectasis?
Although a link has been found between mannose binding lectin (MBL) and severity of bronchiectasis (https://pubmed.ncbi.nlm.nih.gov/24429128/) a causal relationship hasn't been shown yet and many MBL defect patients have no bronchiectasis. MBL gene defects seem to predispose to bronchiectasis only if other parts of the immune system are not working (such as a condition called common variable immunodeficiency) – for more information see https://pubmed.ncbi.nlm.nih.gov/20568383/
A large number of cases of bronchiectasis are idiopathic. What research is going on to discover what these causes may be?
We do see the number of idiopathic cases decrease when more testing is done. The deeper you dig, the higher the chance you will find a cause.
Can bronchiectasis be triggered by physical injury not affecting the lungs, e.g. spinal disturbances?
I would say this is rarely the case, unless the trauma affected the lung. If your spinal lesion is impairing your cough or breathing this might predispose to infection of course, but I haven't encountered any patient with bronchiectasis due to physical injury outside the lungs.
How can you tell when a coexisting disease e.g. GORD is actually a cause or just coincidentally occurring in someone with bronchiectasis?
It’s really difficult. Even experts struggle. Patients often know, however, if their chest is worse when the GORD is worse, or based on the sequence e.g. the GORD happened first followed by the bronchiectasis. Often we have to say "we don't know".
Is bronchiectasis hereditary?
Bronchiectasis can be hereditary in the sense that it can be a respiratory part of a genetic disease. This is a very new field with not much data so far, but some good research is ongoing.
How is the first hours after birth important in bronchiectasis?
There could be complications during the birth that might lead to aspiration of some liquid that might cause bronchiectasis. Furthermore, episodes of acute respiratory failure during or after the birth might explain some genetic diseases that lead to bronchiectasis.
I have lupus as do some of my family members. Is there a connection with bronchiectasis?
No, no connection between the two diseases has been identified so far.
Is the inflammation in bronchiectasis similar to the inflammation in auto immune diseases? If so, would similar therapy be helpful?
The inflammation in bronchiectasis is a bit different to that in autoimmune conditions and so while some of these drugs might be useful in future, they would need to be tested in trials. TNF inhibitors, for example, were trialled in other chest conditions and did not help (and possibly increased the risk of chest infections).
Can a vegan diet reduce inflammation or would you advise not to follow such a diet because of the risk of osteoporosis?
There is currently no evidence that a vegan diet can affect inflammation.
Is rheumatoid arthritis a cause of bronchiectasis or could they be different manifestations of the same inflammatory syndrome?
Studies show up to 10% of patients with rheumatoid arthritis can develop bronchiectasis. It seems to be part of the same inflammatory syndrome i.e. the same inflammation that happens in the joints happens in the lungs. One hypothesis suggests not only that the inflammation of rheumatoid arthritis can lead to bronchiectasis, but that bronchiectasis could worsen rheumatoid arthritis, and thirdly the immunosuppressive treatment could in theory cause recurrent infections.
Can inflammation cause additional kidney and liver damage/enlargement?
There's currently no evidence to support this. However, there are possible side effects of medication on liver and kidney. For example, when starting azithromycin, your liver function should be tested a few weeks later to make sure it's well tolerated.
Could you explain a bit more about the airways making more mucus glands?
Inflammation causes the body to make more mucus glands and for the glands to become bigger which means more mucus in the airways. This can be reversed which means good treatment can help lessen the disease over time.
What medications are used for anti-eosiniophil treatments?
So far, we have some biological drugs which have been approved for patients with severe asthma. However, there are some bronchiectasis patients with severe asthma who might receive these treatments too.
Are there any studies on diet, inflammation and bronchiectasis?
Unfortunately there have not been many studies into the impact of diet on bronchiectasis. This is something we would like to see more research about.
Could inhaled steroids help with inflammation?
Inhaled steroids work for a particular kind of inflammation called eosinophilic inflammation that affects about 20% of people with bronchiectasis. Therefore you should take steroids inhalers if your doctor has recommended them, based on their assessment of the type of inflammation in the lungs.
How soon can we expect the new medications that Professor Chalmers was talking about?
I mentioned a few different medications in my talk. Some are still in trials and might be expected to be available in 3-5 years, others like inhalers containing steroids are available now.
If we also have allergies should we be taking regular antihistamines rather than not?Would that help with inflammation?
Anti-histamines would work against allergies but the lung inflammation in bronchiectasis is not usually related to excessive histamine and so different anti-inflammatories are needed.
If you get COVID-19, what are your chances of survival with bronchiectasis?
We have no data yet, but there is research in progress to try to answer that question.
Are we seeing an increase in cases of bronchiectasis amongst patients recovering from COVID-19?
Not the kind of bronchiectasis we are talking about today. Bronchiectasis can be a complication of COVID-19 linked to pulmonary fibrosis. This is called “traction bronchiectasis”.
Is "long COVID" more common in people with bronchiectasis?
As yet, there is no evidence to suggest this.
Does the COVID-19 vaccination affect a bronchiectasis patient differently?
We don't have reason to believe that it does. Most of my patients have been vaccinated and had minimal or no adverse effects. Efficacy should be the same for people with a normal immune system. It is recommended that people with immune deficiency are vaccinated, and also their family members are - in case the vaccine is less effective for them.
What is considered to be the most suitable vaccination for bronchiectasis patients?
We don’t yet know if there is less/more efficacy or less/more adverse events of different COVID-19 vaccines in bronchiectasis patients, so we would suggest taking the vaccine offered to you in your area.
What would be the ideal time between vaccine doses for someone with bronchiectasis?
There is no difference in recommendations for patients with bronchiectasis. This mainly depend on the vaccination and national recommendations.
If a patient has bronchiectasis and active NTM infection, when is it safe to vaccinate?
We usually recommend postponing vaccinations for very severe and acute infections. However, with NTM disease, treatment takes many months and I would consider it safer to vaccinate than to wait. However, best to discuss this with the physician who knows your situation and the treatment plans.
Could the COVID vaccine bring about an exacerbation?
It's always a consideration, but the vast majority of my bronchiectasis patients had minimal or no symptoms after getting the vaccines - both doses.
The British Thoracic Society published its worries about the future available treatment in UK hospitals even before COVID-19 started. Would it be a good idea to research alternative self- help programmes, especially as this might help sufferers who are not helped by drugs or conventional physiotherapy?
Strengthening of and research on self-management programs is an excellent idea. However, these programs should always be individualized and guided by medical expert advice and, in my point of view, cannot serve as a substitute. Usually, consulting a bronchiectasis expert once every 1-2 years should be absolutely sufficient, once patients are empowered and have rather uncomplicated courses.
Should we continue to wear masks after COVID-19? I have had far fewer chest infections during the pandemic.
Unfortunately, you wearing a mask is probably not enough. It is always about the whole bundle of measures, i.e. nowadays all the people around you are wearing masks and adhere to hygienic measures as well. However, people with cystic fibrosis (an often progressive hereditary disease regularly complicated by bronchiectasis) have been advised to do so when visiting clinics or attending crowds etc. even before the pandemic. It is a matter of scientific debate whether this “behavioural advantage” is the reason why the burden of the pandemic is rather small among this patient group (besides their considerably younger age). In summary, potential benefits should be weighted against the burden of continuing to wear a mask (when all the others around you stopped doing this). This will remain an individual decision, now that you have an idea about the proportion of viral respiratory infections among your pulmonary exacerbations.
Professor Stefano Aliberti
Professor of Respiratory Medicine at the University of Milan, Italy
Ms Barbara Crossley
Member of ELF Bronchiectasis Patient Advisory Group
Dr Josje Altenburg
Pulmonologist at the Amsterdam University Medical Centres
Professor James Chalmers
British Lung Foundation Chair of Respiratory Research at the University of Dundee, UK, and a consultant respiratory physician
Dr Pieter Goeminne, MD PhD
Respiratory physician in A.Z. Nikolaas and Longartsen.be, Saint-Nicholas, Belgium
Mr Ben Goldscheider
Musician and individual with bronchiectasis
Dr Andrea Gramegna
Specialist in Respiratory Diseases, Consultant and Assistant Professor, University of Milan
Dr Felix Ringshausen
Associated Professor of Respiratory Medicine and Infectious Diseases physician at Hannover Medical School, Germany,
Dr Michal Shteinberg
Head of the bronchiectasis and adult CF service, Pulmonology Institute and CF Center, Carmel Medical Center, Haifa, Israel
Dr Anna Spathis
University Lecturer at the University of Cambridge and Honorary Consultant at Cambridge Breathlessness Intervention Service, Cambridge University Hospitals NHS Foundation Trust, UK.
Dr Arietta Spinou
Lecturer in Cardiorespiratory Physiotherapy Practice and Research at King’s College London, UK