Bronchiectasis and COPD

[Timberman]

WARNING: I am not expert beyond being a long time sufferer who has taken an interest in the attempt to take control of my situation; this I find helps with PMA. So by all means use what I say as a discussion but have that with a qualified expert please.

I do think there is a whole lot of tosh being written about this currently. So let us unbundle COPD - it is Chronic Obstructive Pulmonary Disease. It was (is?) a bunch of diseases lumped together because the treatments are broadly similar, the symptoms ditto and the prognosis ditto. So that's the original logic.

Chronic - well bronchiectasis is definitely chronic.

Obstructive - yes, it is definitely obstructive because that is what the retained mucus does, obstruct.

Pulmonary - well so far I have not heard of it affecting any other part of the body.

And yes, finally, it is a disease.

What else? Well it causes breathlessness and various exercises common to other pulmonary diseases can be helpful.

It is progressive and while is not often the immediate cause of death the infections and complications it causes most certainly are.

And finally it is a not at all infrequent companion disease to emphysema. That will be me then.

Now just recently there has been a bit of a revolution since the British Lung Foundation has been taken over by asthma. No one is suggesting asthma is not part of the COPD problem but I would suggest that it is in many ways quite different. For a big start asthma is often caused by allergies which is not the case with any of the others. I had adolescent asthma and still have a slight tendency to asthmatic response. My eldest daughter has quite sever asthma but is in no way a COPD patient; since leaving the London environment she seems to have been much better.

And also included is bronchitis but this comes in two forms and only one seems to me to be relevant - chronic bronchitis is a permanent condition that is most definitely COPD; but many people have acute bronchitis and their bouts are relatively short and respond to a different approach entirely.

So what I want to ask is this: What is the point of having an umbrella term like COPD and a cadre of suitably trained and skilled people dealing with it and NOT including a key cause of COPD?

Happily my (excellent!) team take a wider view but reading this forum this may not be the case more widely.

nhs.uk/conditions/chronic-o...

blf.org.uk/support-for-you/...

nhs.uk/conditions/asthma/

asthma.org.uk/

ed.ac.uk/usher/aukcar/news/...

PS - a note to moderators: how come so few tags came up?

[Hidden]

Bronchiectasis does not come under the umbrella of COPD. It is a completely separate condition and has different origins from COPD. COPD qnd bronchiectasis are treated differently and their exacerbations are different to each other.

Basically, copd is caused by environmental factors such as smoking or work environments. Bronchiectasis has its origins in assaults upon the lungs which are varied and more complicated Pneumonia, childhood infections, PMD, lifelong asthma, rheumatoid arthritis and for 30% of cases. No known cause.

[NannyB1963 in reply to Hidden]

well said .. Littlepom

I have bronc mine was brought on by having whooping cough at 40 ,,,,

The majority of COPD is brought on by smoking … that’s a fact.

[Timberman in reply to NannyB1963]

Its a partial cause - many smokers do not get emphysema; i have a genetic tendency plus two other environmental issues - both of which probably link to bronchiectasis. I replied to Littlepom as here: Many of those causes are associated with the other diseases in the COPD regime. And 30% no known cause? So that is 30% that may well be environmental - which of course is an assault on the system anyway and that is included. You merely say what the current tradion spouts.

[NannyB1963 in reply to Timberman]

I sprout what the resp nurse expressed to me …a minority is for sure but smoking is a massive factor

[Timberman in reply to NannyB1963]

Totally agree but genetics matters too - my mother, her mother and three of her sisters all died as a result of emphysema. But in my case I also had two other environmental inputs which my brother, who has emphysema but NOT bronchiectasis, did not.

[Hidden in reply to Timberman]

Were they tested for A1A antitrypsin deficiency ? That is the link and is present in 6% of the population. Maybe you should ask for a test.

[Timberman in reply to Hidden]

I doubt it was known about back then. But maybe I will ask about me and my brother. Thank you.

Alpha-1-antitrypsin deficiency (AATD) is a rare, inherited condition, which can cause lung and liver problems. It's thought that about 12,000 people in the UK have the ZZ genetic type of the condition, and up to 73,000 have the SZ genetic type. In both groups most people remain healthy, so few have been diagnosed.

Alpha-1-antitrypsin deficiency - British Lung Foundation

[Hidden in reply to Timberman]

In 2001 I acted as a patient representative ( not having the condition) for a worldwide study of the first drug for it and went to conferences in Europe.. So I learned quite a bit about it. There are now several centres in the UK for its treatment and you can have a simple blood test to establish whether you have the gene. I hope that this possibility may help you.

[Patk1 in reply to Timberman]

Did they smoke?

[Timberman in reply to Patk1]

Everyone more or less smoked back then - but one did not now you mention it!

[Patk1 in reply to Timberman]

I'm not judging.i imagine the one who didn't probably passive smoked.itt explains why so many got copd

[Timberman in reply to Hidden]

Many of those causes are associate3d with the other diseases in the COPD regime. And 30% no known cause? So that is 30% that may well be environmental - which of course is an assault on the system anyway and that is included. You merely say what the current tradion spouts.

[Hidden in reply to Timberman]

The lung damage in copd is very different to that in bronchiectasis. Your articles are concentrated on asthma and copd. My bronchiectasis specialist of 18 yrs is co chairman of the British Thoracic Society and there is never a question that bronchiectasis is not included under the copd umbrella and is a condition in its own right.When I say cause is unknown, this refers to the infectious attacks on the lungs that have happened to do this kind of damage. Definitely not environmental issues. Many people with bronch. had whooping cough as children. I didn't. I had multiple pneumonias and was diagosed at 3 yrs old in 1953 but it is not known why I had the pneumonias.

Your view is very old fashioned and originated in the US in.the 1960s. It was changed after an eminent British specialist ( who also happened to be my specialist at the time and trained my current specialist) went to a conference in Los Angeles in 1986 and taught respiratory specialists from all over the world what bronch actually is. From then on a so far very neglected lung condition began to get the attention it deserved, resulting in the ongoing research and developing treatments that we have today.

You are barking up a very dead tree with your ideas and need to look at current information and research which is acknowledged world wide.

Or do you actually know better than the world respiratory community 🤔

[Timberman in reply to Hidden]

You miss my point. By excluding bronchiectasis from COPD it gets LESS attention and is far less well treated. The subtle differences in both the disease and its causes could just as easily be applied to emphysema versus asthma or either versus chronic bronchitis. In addition we have other even more horrific diseases such as asbestosis and pneumoconiosis and even pulmonary fibrosis which all are treated differently and maybe not as well.

So my argument overall is that the fundamental treatments for all these COPD type diseases has a common core and the expertise in treating (not diagnosing which is what doctors etc do). And finally bronchiectasis does indeed often occur alongside emphysema and so a joint treatment and approach makes total sense in terms of care.

In fact your theory follows the classic doctoral route in that it focuses on cause and epidemiology rather than care and treatment. Nurses care; doctors diagnose is a bit of an aphorism but none the less indicative of a key truth.

The great pity is that much of this comes from the academic nature of doctor training - and now we have poisoned the well of nursing care with the same demands.

[Hidden in reply to Timberman]

If you read many posts on here it is only too clear that many doctors treat bronch as though it is copd when in fact it is far more complex and needs varying treatments which training in copd does not qualify them to understand. Many bronchs are insufficuently treated because of this.In the 1990s Tony Blair's government developed a programme for copd which meant the withdrawal of funds from bronch research, GP training and treatments. They did this because a study from the 1970s showed millions of emphysema and chronic bronchitis sufferers due to smoking whereas bronch was then very rare by comparison. A vote gathering exercise.

Putting bronch into the same category as emphysema and chronic bronchitis would not help with its treatment. The same applies to IPF sarcoidosis and many other individual lung conditions. The last thing that these conditions need is lumping together. They need individual research and tailored treatments

In fact bronch is much more closely related to cystic fibrosis in its presentation and there is a cross over on effective treatments. Many bronch specialists, including mine, believe that it is on the cf spectrum and research to find the link is ongoing. As new cf genes are discovered, more and more bronchs are found to have one. This way finally, it is hoped that we will be allowed the cf drugs and services that we with bronch know are effective in us but government refuse because of 'lack of data'.

Oh no, don't seek to send us back to the bad old days of GPs totally mistreating bronch because they believe that is one of the copd conditions.

[Patk1]

I enjoyed yr links,thanku x

[Timberman]

Interesting and your last line is telling - GPs are very poor on these diseases. As a child I was diagnosed by a Dr as having bronchitis and wrongly treated from age two to 6 - then the NHS arrived and a new, younger GP identified childhood asthma and things began to improve!