Breathlessness and Bronchiectasis

[wizsue]

I was diagnosed with bronchiectasis a year ago after endless coughing with mucus production. Following the CT scan the consultant prescribed carbocisteine and montelukast. I have also been asthmatic since childhood and using the usual inhalers. I saw the consultant for the second time a couple of weeks ago (there is a year waiting list at the hospital), he basically said you have been diagnosed, got the medication there is nothing else he could do. He has never explained for bronchiectasis was or how to live with it, I have done that myself via leaflets from BLF. I mentioned I am using my Ventolin (blue inhaler) more during afternoons, evening and sometimes at night. He said he didn't know why, bronchiectasis doesn't cause breathlessness. I'm pretty sure wasn't this bad before the newish drugs but he said no. Has anyone else experienced this problem? I have had no other help or seen anyone else to do with bronchiectasis but the consultant.

[Patsy164]

Hi wizsue Im not sure why your consultant said that because I have bronchiectasis and asthma and I suffer with breathlessness. Have a look at this link:

bronchiectasis.me/treatment...

I don’t think all sufferers have it but some can. I wasn’t told anything about the disease either but being on this site and the people on it have helped me understand.

When I was first diagnosed they sent me to pulmonary therapy which really helped so I guess gentle exercise really helps. If you can’t get referred there are lots of videos on YouTube to help ie breathing exercises to bring up mucus and the pulmonary exercises. We are not alone there are many with the same problems with consultants not really understanding bronchiectasis. If your not happy ask to be referred to a specialist hospital in your main town near where you live. X

[wizsue in reply to Patsy164]

Thank you for your message. I have looked at the link and printed it off. I think I will show it to the consultant. I have not been referred for any kind of therapy, in fact the consultant said he would discharge me back to the care of the GP. The GP said the clinic should be doing more. Great! The next big hospital is many miles away and a difficult journey. There isn't a great deal of help for people with multiple lung conditions. But thank you for your help Patsy. X

[Patsy164 in reply to wizsue]

It is a bit of a battle and many others have found that too. Let’s hope your GP can help. I use the British lung foundation site for support as there are a lot of people on there with Bronchiectasis the same as us and they are a good bunch with jokes, advice, photos post it on there you will get more replies. X

[Hidden]

I too have asthma and bronchiectasis. Have you been shown airway clearance techniques by a respiratory physio ? If not look online for postural drainage. I clear my airways twice a day, more when I'm unwell, but can still have issues with breathlessness when I have mucus stuck or an exacerbation. However, we are all different with this disease.

Sadly, you need to be your own advocate.

[wizsue in reply to Hidden]

Hello, no I haven't been shown any techniques or been referred to a physio. The consultant said I have bronchiectasis for life and there is nothing else he can do just refer me back to my GP. He said he couldn't understand why I get breathless as well. Helpful! I'm not sure what a postural drainage is but will look it up. It's good to know I am not the only one with this problem.

[Hidden in reply to wizsue]

Sounds like you need a different consultant, even at the same hospital. Go back to your GP and request more help. You need to be shown how to do airway clearance as that is your main tool for clearing your lungs.

When you have an infection then antibiotics and steroids are all there is to help you so your airway clearance is your mainstay to keeping well and getting well.

Do as much exercise as you can to work your lungs and keep them clear and also drink plenty of water to help keep your mucus thin so you can cough it up.

[medway-lady]

I did a lung rehab course and it was great. I was'nt short of breath though except when I had an infection. I'm not asthmatic either does'nt your area health authority have a Respitory Team to offer advice? I was shown how to clear lungs and can ring the team to do a sputum test and they come out too, very well organised here.

[kimmyb_83]

A respiratory physio can help with the exercises. We have pulmonary rehab team and although they’re no bronchiectasis expert, they can provide some level of support. We always have labelled sputum bottles ready which we can drop to the lab ourselves if my mum feels like she’s coming down with something. Try get dr to give you a rescue pack of antibiotics which you can start straight away if you have an exacerabation. We’ve learnt with mum, the sooner you get on meds the better the outcome. Good luck!

[santisuk]

Hi wizsue. I'm a new member of this bronchiectasis forum too, but I have been contributing on the broader BLF lung issues website, also hosted by HealthUnlocked. I had not realised a more specific site existed.

I was diagnosed with bronchiectasis 4 years ago, having been successfully treated with radiation for a 'Malt lung lymphoma' and then finding that I was still getting mucus production and lung infections. My bronchX is relatively mild now - down to one infection over the last year compared to 3-4 only a couple of years ago. I feel (i hope too) that my bronchX management, learnt on the BLF forum from others, from researching the condition thoroughly on the internet and by having a bronchX specialist for regular (now only annual) reviews, has contributed to its current status but I hesitate to say stuff that sounds like bragging as who knows what tomorrow brings.

Clearly your consultant is at best a general pulmonologist (lung specialist), probably well-enough versed in asthma and COPD but not interested enough in the less common diseases like bronchiectasis. Unfortunately that is the norm, not an exception.

Why these pulmos can't be trained in the basics of bronchiectasis defeats me, since they are not difficult to learn and there is excellent doctor guidance produced by the British Thoracic Society if they need to research a detailed point ["British Thoracic Society Guidelines for Bronchiectasis in Adults" (January 2019)]. It can be downloaded from the internet if you search on the bit I put in quote marks and some of us who like to really understand our condition devote the time to dig into this weighty (66 page) tome. It's worth anyone with the condition skim reading the headings, particularly anything headed 'Good Practice Points' and 'Recommendations'.

I'll try and post the basics of bronchiectasis management, sticking close to BTS guidelines where relevant over the coming days but also drawing on my own experiences and those of others I have observed on the broader BLF forum:

I'll cover the following:

* Involvement of specialists

* Airway (sputum) clearance

* Use of mucolytics

* Management of exacerbations (infections)

* Use of long term (prophylactic) antibiotics

* Use of other drugs - anti-inflammatories (steroids), bronchodilators

* Regular excercise and other good behaviours

* Dietary matters

* Anything else that I might have forgotten in setting that scope

So here goes on the subject of bronchiectasis specialist involvement

If you can get a bronchiectasis specialist to undertake (1) a review of your condition, (2) preparation of a management plan for use by your general pulmonologist consultant or GP to run with and (3) perform an annual review if you remain unstable .... is the ideal.

The BTS Guidelines in their former 2010 version used to be quite specific on recommending this and we could use that to twist the arms of our GPs to refer us to a lung centre having bronchiectasis expertise. The guidelines in their 2019 update format are now a bit diluted when it comes to the strength of their backing for specialist involvement. That's my opinion/interpretation but I recognise there are practical reasons behind that.

So what do the 2019 guidelines say? Here's an extract:

"Specialist vs non-specialist setting. There are no studies available describing differences in outcome for patients with bronchiectasis in specialist compared with non-specialist care settings. The consensus team (expert opinion) suggest there may be benefits to patients by attending a specialist clinic for bronchiectasis as this will facilitate access to appropriate diagnostic and management expertise through a multidisciplinary team (for example Respiratory Nurse Specialists, Pharmacists, Consultants with a special interest in bronchiectasis, Immunology Consultants, Respiratory Radiologists, Dieticians and Psychologists). This may be most relevant to patients with severe or complex disease.

Good practice point. Specialist clinics should be considered in patients requiring

hospital follow-up."

The BTS guidelines seek to be based on evidential studies (rather than opinions of medics or patients) and there have been none, so to be true to their brief they have to be a bit ambivalent. i'll bet the drafting committe struggled over 'suggest' and 'may'! That and (I'm guessing) the real politic that there are not enough funds in the NHS to provide specialists for all patients so if all of the unprovided were banging on the door at one time there were going to be consequential frustrations.

One thing is clear from reading other bronchX sufferers' comments is that without question we all advise that getting a bronchX specialist should be a number one priority. It would be good if those who do so would post any tips on how they went about getting their GP or general pulmonologist to refer them to a hospital clinic with the requisite specialism. I don't have personal experience to offer here as I'm a Brit expat living in Thailand, but visiting the UK regularly (recently less regularly). When I recognised that my general pulmonologist in Yorkshire was making a horlicks of my diagnosis 6 years ago - he insisted I had lung cancer and he wanted to cut it out - I self-referred myself to Papworth Hospital Cambridge as a private patient for it's expertise in lung issues. It is local to my sister and she hosts me when I return to England; that plus I'm old enough to recall that Christian Barnard in Johannesburg did the first lung transplant and Papworth did the first heart and lung combined - says something about their expertise. I have not been disappointed. Their team approach to solving difficult cases like mine has been outstanding.

So where are these bronchX specialists? In my early days I seem to recall reading or hearing somewhere that the NHS had seven regional centres which GP's can access. I don't know whether this is still true and whether, if true, there are also other recognised lung centres in other cities that have an expertise.

The ones I have read about people getting expert care for their bronchX are:

* Royal Brompton Hospital in Chelsea/Fulham. Seems to be recognised as the UK's leading lung hospital with a large number of expert consultants covering all of the common and rarest conditions

* Queen Elizabeth Hospital, Birmingham

* Papworth Hospital, recently relocated form rural Cambridgeshire to the City of Cambridge

* Withenshaw Hospital Manchester

* Feeman Hospital Newcastle (not sure if this is a recognised centre but I have read more than one bronchX (I think) patient laud it.

People say that the large teaching university hospitals are where the experts usually reside. I'm not sure about that. Anyway, best way to find out would be to make another post saying where you live and asking where your nearest lung centre with a bronchX specialist might be. I don't know but I suspect any pulmo who is a bronchX specialist will also be expert in Asthma - the two conditions so often go together.

Hope the above helps

[wizsue in reply to santisuk]

Hi, thank you for such a lot of very helpful information and advice. I will certainly investigate what other help is available. Unfortunately my 'local' hospital doesn't have a specialist team just a consultant who deals with general lung conditions. My GP is going to find out about pulm. rehab courses. I now know to get further help I would have to travel quite a distance to a large teaching hospital. Not so good for those who also have physical disabilities. I'm sure others will find your post really useful and helpful. Thank you so much.

[Hidden]

Also Leeds and Edinburgh are centres of expertise. However I live near Wythenshawe and cannot get a referral to them for Bronch as my lung function is 'too good' despite many problems my lung consultant is/has struggled to manage ... My local hospital used to have a bronch specialist but no longer does. Getting to people who can help us manage our conditions is an ongoing challenge.

[wizsue in reply to Hidden]

My local hospital seems to just have one general respiratory consultant. There isn't a specialist team there either. He is just going to pass me back to the GP, not good news. People with our condition are not getting the help they need. Respiratory problems are on the increase too.

[Hidden in reply to wizsue]

My local hospital is much the same, but they can't get me to one of the centres ... I don't meet the criteria for referral even though my local is struggling with me, so I'll be passed back to the GP in due course too. Respiratory problems may be on the increase, but is bronchiectasis ... it's the bronx specialists we need.

[wizsue in reply to Hidden]

I couldn't agree more. Perhaps we should write to our local MPs, but at this present time that is probably not a good idea, but when politics settled, who knows?

[Hidden in reply to wizsue]

I'm working on the basis that I have a GP on my side and if things get tough then they can try a referral to another hospital once my current consultant passes me back to GP care. My GP jumps the minute anything starts to go wrong so I am blessed in many ways. Think we need to wait for politics to settle and that may help the NHS too, who knows. In the mean time ...

[Brenda102]

Hi Wizsue,

I was diagnosed a few years ago, and have gotten some of the best advice on this site. I do not have asthmas, but I still can get episodes of shortness of breath, especially in the heat and when I overdo. I do chair yoga which helps me breathe better and I nebulize with saline to loosen the mucus. When I can’t clear, I feel worse. If you have asthma they may add Albuterol to the saline to help open the airways. Albuterol is what we call in in the US. There is something comparable. In the end, try to find a Dr. who will be more helpful.

[wizsue in reply to Brenda102]

Hi Brenda 102

I looked up Albuterol, it is known in the UK as Salbutamol. I do take this in the form of an inhaler as well as a steriod inhaler. When I have had asthma attacks, the local surgery has but me on a nebuliser which contains Salbutamol. I am taking much more Venolin (Salbutamol) in inhaler form since being diagnosed with bronchiect. The general consultant just said he didn't know why I was more breathless because usually people with bronch. don't get breathless. I have looked this up and I know that is totally wrong. Quite worrying really considering the hospital is the only help I am going get, apart from my GP.

[Brenda102]

Sorry I just saw this. The forum used to come to my email, but I no longer get it. Your Dr is wrong, most of us have episodes of shortness of breath. For some. Building up stregnth from exercise helps. Hard to do if you can’t breathe at all. Maybe just steam from boiled batter and a few drops of lavender or peppermint oils to relax and loosen the airways. Other medical causes may have to be checked for as well. Take care.

[trustandhope]

I was recently diagnosed with bronchiectasis. I have had asthma for 18 yrs since inhaling a poisonous gas from where I used to work. I saw a Pulmonary Dr who had be undergo a bunch of tests. According to the CT Scan I have bronchiectasis - she pointed out the scaring and some little white circles which she did not explain. I live in Ohio so I go to the Cleveland Clinic and I am very disappointed as this has been handled. My issues are shortness of breathe and coughing - I am on wixela and albuterol. I did find out that the clinic has Pulmonary Drs who specialize in Bronchiectasis and I have an appt on October 5th. I am hoping that he can provide me with answeres. Check and see if there is a Bronchiectasis Specialist in your area. Will keep you in my prayers - hang in there. I can let you know what he says - I'm new to this site so how do I contact you

[Lybra]

After one trial with a capsule, can,t remember what, I was given Incruse Ellipta, which has helped quite a bit. Breathlessness, I agree with you, I am surprised that a specialist said not.