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AT LAST, A DEFINITIVE EXPLANATION OF COPD

libby7827 profile image
44 Replies

FROM MARK PILLING, BRITISH LUNG FOUNDATION

Hi Everyone

Please take this post as what it is meant to be - to clarify some info about COPD - if you like "sorting the wheat from the chaffe (?)"

COPD is the occurrence of chronic bronchitis or emphysema - a pair of commonly co-existing diseases of the lungs which causes the airways to narrow over time. This causes shortness of breath.

COPD is defined by it's characteristically low air flow - spirometry used to measure the airflow - the low air flow is not reversible and gets worse over time. Whereas with asthma the restriction/low air flow is reversible.

Asthma and COPD are two different conditions - some people with COPD also have some asthmatic compenent - but people with asthma do not have COPD. Someone with asthma for many years can find that the reversible aspect of their asthma becomes less and less, and the damage to the airways more permanent - and this permanent damage is very similar to that found in COPD - which is why some people with asthma are told they have progressed to COPD, when perhaps the more accurate term is fixed airways disease.

The treatment of copd tends to be similar regardless of whether someone has more or less emphysema than bronchitis and vice versa. People with emphysema tend to need oxygen. Alpha 1 can affect other organs other than the lungs, so anyone with Alpha 1 may have more "complicated" treatment - but the treatment of their copd will not be any different from someone who has copd due to another cause.

COPD affects everyone differently - everyone manages their condition differently - the treatments are generally the same across the board regardless of how your COPD started.

Bronchiectasis (a separate condition to copd) is a permanent abnormal widening in one or more of the airways. Extra mucous tends to collect in those parts of the airway that are widened. The widened airways with mucous are prone to infection. The cause of bronchiectasis is not clear, some conditions that affect or damage the airways can cause bronchiectasis e.g. whooping cough, pneumonia, measles etc. It is possible to have both bronchiectasis and another condition.

Thanks

Mark

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libby7827
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44 Replies
PollyP profile image
PollyP

Mark, that is a excellent and very helpful explanation of COPD- thank you very much.

Flippettyflew profile image
Flippettyflew

Thank you, Mark .Thats was a very helpful.

alanjudy profile image
alanjudy

Thank you Mark a very clear explanation.

ajameb profile image
ajameb

Thankyou for this it's much appreciated.

hamletv profile image
hamletv

Thank you - nice and clear.

Thanks for your feedback - I can't take all the credit though - Muriel one of the Helpline nurses actually wrote the bulk of it - I just twiddled with it here and there.

If anyone has anything they want to ask about their COPD just call Muriel on 03000 030 555.

Barbara, Jan and Vicky - the other nurses - are also around to speak to if you want.

Thanks

Mark

downfield profile image
downfield

Quote..

''COPD is defined by it's characteristically low air flow - spirometry used to measure the airflow - the low air flow is not reversible and gets worse over time. Whereas with asthma the restriction/low air flow is reversible.''

Maybe I am misunderstanding here. Does this mean there is no reversibility even when bronchodilters are used?

I have read a lot recently about reversibility and been told by the spirometry technician at the hospital that is is possible to have a degree of reversibility with COPD when bronchodilters are used .

libby7827 profile image
libby7827

Hi, lung damage in emphysema is permanent and irreversible (this is not including surgery which some people are able to have and some are not suitable for) although bronchodilators temporarily dilate the airways. I don't know about bronchitis though. Libby

downfield profile image
downfield

Hi Libby :-) , thank you. I have read so much I confuse myself and that is not difficult .

Here are a couple of items which to me suggested a degree of reversibility , I guess it means temporary and for bronchitis then which comes under the umbrella term of COPD

''Chronic obstructive pulmonary disease (COPD) is characterised by progressive airflow obstruction that is only partly reversible, ''

thelancet.com/journals/lanc...

''Long-acting Bronchodilators, Inhaled Corticosteroids, and Tiotropium

Long-acting bronchodilators (formoterol, salmeterol) and long-acting anticholinergics (tiotropium) have similar efficacy:

Improvements in post-bronchodilator FEV1 (~50-100 mL)''

pulmccm.org/2012/review-art...

downfield profile image
downfield

..sorry the first link I referenced isn't working but can be accessed by copying and pasting the whole line into Google which will bring up the page.

libby7827 profile image
libby7827

Ha ha, me too! I use ventolin, symbicort, tiotropium and theophyllin which are a mixture of the drugs you mention. I use them twice a day and the tiotropium once a day, so "long acting" is misleading. If you don't use them when you should then your breathing worsens quite quickly. If they are using a mayfly and not a human being as an example, they only live for between 30 minutes and one day, so if they used the drugs I guess they would be long acting - only required once in a lifetime. Ha ha ha! Libby

jacksmum profile image
jacksmum

that is so easy for me to explain to others when asked about copd thank you

mark

Brilliant explanation Mark and the team. I haven't personally got COPD but it has obviously been causing considerable confusion to many people on here.

I still don't understand however why it was necessary to "invent" a collective term to cover only 1 or at most 2 diseases rather than just call the diseases what they are, but heyho, I will never understand many things these days. :-)

backpablo profile image
backpablo in reply to

Hi mapal

A brilliant point. Why give an umbrella term to 1,2 (at a push 3) seperate conditions with different causes, effects and prognosis? "You have a respiratory disease... which is called... and this is the prognosis..." would be far more useful and less confusing. There is common ground definately but a rheumatologist wouldn't say "you've got Chronic Reaccuring Rheumatological Disease" they'd explain arthritis lupus etc. Anyway, it's a great point mapal, cheers

EmmyH profile image
EmmyH

Hello, Mark. That's a clear explanation, but sounds remarkably familiar to me. Can you clarify whether small airways disease/ obliterative bronchiolitis (which I have in addition to bronchiectasis) comes under the umbrella of COPD as well?

in reply toEmmyH

Obliterative bronchiolitis is not COPD.

Small airways disease - not sure about that one - certainly not a recognised lung condition - could mean asthma. I will check.

libby7827 profile image
libby7827

Hi, Mark's post was in response to a blog of mine from a few days ago, so I thought I'd post his reply for all to see, although I'm not sure he will be keeping tabs on it. Best thing would probably be to phone the people/number he mentioned above:-

"If anyone has anything they want to ask about their COPD just call Muriel on 03000 030 555.

Barbara, Jan and Vicky - the other nurses - are also around to speak to if you want"

Best wishes, Libby

KingoftheCocktails profile image
KingoftheCocktails

Thank you Mark

sassy59 profile image
sassy59

Thanks for the great explanation. Pete was only told he had copd (bronchitis) nearly 3 years ago because of the scarring caused by sarcoidosis. We have just accepted what the hospital has said but the above explanation was very helpful, at least to me. Thanks again. xxx

in reply tosassy59

Not sure about "scarring" causing copd. Scarring usually something else. That's another I'll check out.

sassy59 profile image
sassy59 in reply to

Thanks Mark as we are not too sure about that either! We just go by what the hospital said. Thanks for looking into it. xxx

brooksju profile image
brooksju

Thank you Mark, good explanation, I didn't realize the differences there are between all chest conditions and deceases.

Teigy1 x

Thanks for posting that libby. I don't have copd but I agree with others who've said that it would be much more helpful if all lung conditions were given their proper name. If someone tells me they have copd, I ask them what's wrong ie chronic bronchitis or emphysema, but usually they don't know! The treatment might be the same but it's still important to know exactly what's wrong with you, even more so if it's alpha-1 antitrypsin. I can't see the point in "umbrellas" where medicine's concerned.

Knowledge = power!

ff x

cofdrop-UK profile image
cofdrop-UK

Thank you Mark and to Libby for posting.

XXX

thatcham1939 profile image
thatcham1939

hi libby and thankyou mark

i have broncietasis which is a progessive lung problem, on one site it said that part of it is C.O.P.D.

i am being look after very well, the one thing i would ask my lung doctor, is it inherited, althought mine was caused by T.B.as most of nearly two generations all under 30 were wiped out so i have no one to ask, many thanks for the information though

love jan x

libby7827 profile image
libby7827 in reply tothatcham1939

Hi Jan, when I was first diagnosed I asked my consultant if my condition (emphysema) was genetic, as my mother had it, it was 18 years ago and he hmmmd a bit and said they weren't sure. I was sure back then and even more sure now. It's too much of a coincidence. My mother barely smoked and was diagnosed in her 60's, whereas I smoked a lot and was diagnosed in my early 40's, My brother only smoked for a couple of years in his late teens, but suffers terrible chest colds/bronchitis in the winter so, to me, it's pretty clear to me that a lot of the problems we have are genetic. No expert though! Libby

thatcham1939 profile image
thatcham1939 in reply tolibby7827

thanks libby

i think it is genitic and will ask my specialist nex thursday, i think it will be interesting

love jan xxx

janie62 profile image
janie62

Hi thatcham 1939, there is a great site, Bronchietasis R Us, which will answer any questions you may want to know about Bronc. you don't have to join, you can read all you want about, causes, medication, help available etc. as there is a drop down menu at the top of each forum page and you can access this information as a guest. I don't think it is inherited, although people can be born with it.

Many thanks Mark for your excellent explanation on C.O.P.D.

Ozzygirl64 profile image
Ozzygirl64

Thankyou, most helpful xxxxx

Hi thatcham - BLF had a really good webinar about bronchiectasis a few months ago run by Dr Michael Loebinger of the Brompton. Here's the link to it on youtube to save you looking it up (hope this works) youtube.com/watch?v=7OOvfsT...

When my daughter developed lung problems I was worried it might be bronch, but was told that it isn't genetic

ff x

dirose profile image
dirose

Hi; I have COPD, and AF, get very breathless, but it is occasional, worse when I have AF. Which do you think causes the main breathlessness Please?

squady profile image
squady in reply todirose

snap,i started off with bronchiectasis which ended with a partial lung reduction,but they had to leave a bit of  infected lung in to ovoid breathing problems,i then got as sick as a pig which turned out to be advanced stage two copd,now its advanced stage three,all this stress on my heart has caused af now waiting for an ablation as drugs not working.

thank god the veteran assoc agreed with my med team,as I got a car to get about in,

I wake up to af every night pulse 120-125,very puffey 

libby7827 profile image
libby7827

Hi dirose - I'm afraid I don't know the answer to your question. The best thing you could do is re post your question as question on its own, as people won't notice it down here. If you just click on Questions at the top, you will see to the right that it says Ask A Question, click on that and the rest is easy. Best wishes. Libby x

katieoxo60 profile image
katieoxo60

Well Mark thanks for the COPD discription and glad to hear you are going to research further some of the questions it has raised. I believe lung scarring can be caused by many of the lung illnesses including uncontrolled asthma , TB and pnuemonia to name just a few. Infact some doctors think smoking causes scarring too or thats one excuse given for it.

'Asthma and COPD are two different conditions - some people with COPD also have some asthmatic compenent - but people with asthma do not have COPD. Someone with asthma for many years can find that the reversible aspect of their asthma becomes less and less, and the damage to the airways more permanent - and this permanent damage is very similar to that found in COPD - which is why some people with asthma are told they have progressed to COPD, when perhaps the more accurate term is fixed airways disease'

So when does it become COPD and not asthma? My hospital report say COPD/asthma, can I have both?

libby7827 profile image
libby7827 in reply to

Well, Mark's post said "Asthma and COPD are two different conditions - some people with COPD also have some asthmatic compenent - but people with asthma do not have COPD" and that sounds confusing. I think he means that if you only have asthma then you don't have copd. But I am pretty sure you can have copd as well. I'm as confused as you now! And, although Mark's post is correct, it is definitely true that doctors/consultants/nurses all use the term copd differently. My consultant doesn't use it, he calls my condition emphysema, which is what I've always called it myself. When I first heard the term being used and asked my doctor what did he mean, copd, he said it was a collective term for emphysema, bronchitis and asthma. Now it seems it's only emphysema and bronchitis, hardly worth inventing a collective term for only two conditions! You'll have to ask your consultant/doctor if you have copd (either emphysema or bronchitis or both) as well as asthma! Sorry I can't be more helpful and no doubt someone will chip in contradicting me. Libby

Earlybird profile image
Earlybird

Thank you for that Libby7827

I've often said I didn't have asthma even though all docs in the '80's told my I had. This also explains why the medication hasn't changed much over the years regardless of diagnosis.

I've had bronchitis since being a child and over the years it has progressed to the COPD I have today. I would say mainly due to the bad dust and air I've lived with throughout my life. At 61 I'm still hanging on in there and doing the breathing exercises when needed and hopefully the inhalers will be enough, but it is nice to know there are small emergency oxygen canisters if it gets really bad.

Good luck t you all :)

libby7827 profile image
libby7827

Hi, I had the same history as you, I was told at 22, after a bout of bronchitis, that I had asthma and given a Ventolin inhaler, at 42 I was told I had emphysema, and when I took part in a clinical study for Glaxo Smith Klyne a few years ago, on the most sophisticated computerised equipment there is, I was told I didn't have asthma and it was very doubtful that I had ever had it! Like you say, all we can do is plod on, take our medications and try to keep healthy and active. It's very easy to get down but it's so counterproductive, so keep smiling through clenched teeth! Ha ha! Best wishes, Libby

It is possible to have copd and some asthma. As to when the damage caused by long term asthma becomes "copd" or fixed airways - that will depend from person to person - when the reversibility in asthma becomes unreversible.....

Respiratory nurses will say that 20 yrs ago everyone was diagnosed with asthma - copd or the likes just wasn't that well considered.

Libby makes a good point that nurse etc use the term copd differently - copd as a term was brought in to make things simpler, so just think what it was like before the term came on the scene.

PositiveThoughts profile image
PositiveThoughts

Thank you for the explanation and all your support, I have Bronch in a small area described as trivial by my Consultant, but its still makes me cough to loosen mucus every day, its now part of me so I have grown into it. They believe I got it from my children who both had whooping cough a few years ago but who knows. I live directly across the road to your office and walk past daily, on Monday we move back to the Cotswolds I have found it very hectic living here.. I thought also that the best hospitals would be here in some cases that's correct but I can say my treatment in Cheltenham when I was seeing them was just as good.. I don't see any Dr's now it is what it is, I have no meds except I take an anti histamine daily not sure if it helps but I am lucky compared to many others... will keep reading as I enjoy the forum.

Suzy6 profile image
Suzy6

Pleased to hear your news. Hope the move goes smoothly. Good luck.

Sherry44 profile image
Sherry44

Thanks Mark. At last someone to explain COPD in comprehensible English.

Thank you best discription I have read.

daveymac55 profile image
daveymac55

Thankyou for that Mark, very informative indeed. I have both asthma and bronchiectsasis, and I was lucky enough (or perhaps not) to find out the cause of the bronchiectasis, a hiatus hernia of all things. It was causing acidic reflux on occasion especially whilst asleep, and one night I woke up choking on the bile and inadvertantly inhaled some into my lungs, in fact that happened more than once before any steps were taken to remedy the problem, but by then it was too late, damage done :(

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