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Calling members with both copd and bronchiectasis.

Hi all,

I have severe copd and severe asthma, but have just found out from my CT scan results that I also have moderate bronchiectasis in two lower lobes and one upper one.

Im currently feeling quite shocked to have yet another diagnosis and would appreciate hearing from anyone else who is living with both copd and bronch about how they manage them, and any thoughts about the implications of having both.

Many thanks.

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You're so kind flib, and many thanks for the pm too. As you said, I am reeling but hearing how others cope will help Im sure.

My sister in law has severe bronch - she lost part of her lung aged 18. I'll be talking to her. Thanks for your support flib, xx :)

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Hi O2Trees,

Yes, I have Bronchiectasis, Emphysema, and scarred lung also narrow tubes.

Bronchiectasis produces a lot of Mucous and I have to lung clear every day to prevent Infections I get very tired quite quickly and have to pace things a lot.

The Emphysema Isn`t too troublesome but that is because ( I think ) I exercise a lot.

The other things are just part of the parcel and I just get on with life.

There are good days and bad days but you just take each day as it comes.

I have read many of your posts in the past, I think you already are doing the right things with Meds, diet, exercise, and importantly maintaining a good state of mind and sense of humour..

As long as there`s breath, there`s hope. :)

Tom.

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Thanks so much Tom for lovely message.

I know about the mucus of course but Im confused about it as i can breathe out fully without any wheeze or sense of obstruction. That's when Im well of course :) The last two winters I've been very ill, and this winter with double pneumonia and a number of other infections which seem to be coming from much higher up, sticky, and so far I've attributed that to the mucus that silent reflux causes in the throat - it doesn't seem to be coming from the lungs. But the number of them has increased and so i wonder if they could be to do with bronch after all. All the sputum samples I've sent off this and last year came back negative.

The mucus i cough up - with big difficulty when i have a serious lower lung infection - is about a desert spoonful and kind of creamy, not sticky. Is that anything you would recognise?

I haven't had an infection for three months (hate writing that as it seems to be tempting fate) so if they suggest azithromycin all the time I feel a bit resistant - would rather take it during the winter. With three clear months I assume I'm not colonised so far.

Thanks for reading Tom.

Hope its a good day for you :)

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Hi O2, I recognise the symptoms you have said, I also Have a Hiatus hernia which causes reflux and as you said, the Sputum seems to com high up in my throat, the problem is it is often light green and thick, but, I believe that is due to being dehydrated which happen a lot.

My consultant has said to me not to worry too much about that and drink more water when I start to feel the symptoms that will definitely help.

But I have to distinguish between reflux and lung phlegm colour and consistency..

It is all a learning curve but it is important not to stress as that has a derogatory effect on our health.

Hope thing get easier for you.

Tom.

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Thanks so much Tom - i also have a hiatus hernia and reflux of course. I try to drink a lot, usually do but it doesn't seem to make much difference. But your consultant comment is reassuring.

Cheers, :)

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Hi O2 Trees, Have you tried taking Carbocisteine 375 mg capsuls.4 per day @ 6 hours between each capsul, they dont work for everyone, but I was suffering with mucus retension 4 weeks ago,and it has taken until now to clear it ,but its done the trick and cleared my lungs and also the back of the throat, maybe worth a try !! Huggs Neo.

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Thanks for suggestion Neo - the weird thing is i have hardly any mucus on my lungs, don't understand this in relation to the diagnosis.

I have used carbo before but it tended to make the mucus TOO thin and exacerbated my bronchospasm. But it might be useful when i have an infection.

Take care, :) xx

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Hi Neo

Interesting to learn about this drug - my husband produces a lot of mucus and it results in lack of sleep at night with the coughing to bring it up. Going to suggest he asks his gp to prescribe this to see if it helps.

Lack of sleep is causing him to be so fed up(understandably) and has gone on for a long time.

Regards

Marion

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Ok Marion, Hope it helps, it worked for me but dont expect it overnight needs about three or four days on the medication, lack of sleep can lead to all sorts of things, I suffer Tinnitus also, so I know what its like not being able to sleep at nights. Maybe also worth investing in a SALT PIPE, that assists in loosening mucus also, go on line to Amazon, they have them for sale.

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HI O2, I have copd & bi-lateral bronchiectasis.My main problem has been repeated infections, however, I have been on Azithromycin 250mg.Mon. Wed & Friday each week for the last four months and no exacerbations since. (Touch wood) I am on 24hr Oxygen, concentrator at home, portable concentrator and small cylinders to get about. I try to stay reasonably active, but can't do as much in the garden as I used to, however I still manage the polytunnel & greenhouse. The main thing is to remain positive and as flibbrty said " Remember you're the same person as last week " If you wish I can give you a list of my meds. & regime by PM. hope you stay well. Mike.

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List of meds and regime would be very helpful Happygrandad.

Hope you are well too. :)

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As you mentioned azithromycin, HG, Ive copied this from my reply to Tomc. Had meant to include it in my reply to you but forgot!

"I haven't had an infection for three months (hate writing that as it seems to be tempting fate) so if they suggest azithromycin all the time I feel a bit resistant - would rather take it during the winter. With three clear months I assume I'm not colonised so far."

But of course Ive no idea how it will progress, or what effect it will have on the copd.

cheers, :)

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Hi honey

I have both too and last week saw my consultant and she said im doing the best i have ever been so dont worry.

I dont think im on any different kind of meds that others just the eklira and symbicort and phillocontyn x

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I don't know eklira or phillocontyn Mandy - what are they for?

What stage of each condition are you at?

Thanks so much for your reply. xx

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eklira is a newer version of spiriva its an inhaler and i use that with symbicort which is very effective although dont know how they work separately

phyillocontyn is used for copd asthma etc it helps breathing opens airways

i wasnt taken care of by my doc 02 so by the time i got a real diagnosis i was at the very severe stage but that was over a year ago now and when i saw her last week she was really pleased at how well im doing.

My consultant is amazing if you dont already have one you need one honey x

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Thanks Mandy. Glad you're doing better now :)

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Spiriva is meant to be used about 15 minutes prior to Symbicort so the receptors in your lungs can better utilize the Symbicort.. it's important to use it before hand..

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Thank you. I have been doing it the other way round. Will try that.

Suzyxxx

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Hi O2, I think your question and your new diagnosis bring up some interesting questions about titles, which disease is which etc.

First off, when did you last have a CT Scan ? Because if you have bronchiectasis now, you've obviously had it for some time. It's not something that happens overnight and chances are that it just wasn't spotted earlier. That in itself is very reassuring because if it was not obvious previously then hopefully it's not severe.

What I'm trying to say is, don't be afraid of the new 'name' thrown into the mix because you've obviously been coping with both illnesses for some time, without knowing.

I've read some of your posts about having lots of sputum in your throat that you were attributing to GORD, so maybe part of that is bronchiectasis related as the two are closely connected.

COPDrs seem to almost always have problems with mucous/sputum and they have problems with shortness of breath. So really, having Bronchiectasis in the mix isn't that different.

I have very severe Bronchiectasis and Asthma but in the last 2/3 years have had increasing problems with shortness of breath. Nobody has told me I have COPD but with Fev1 that was at 39 in 2013, 38 in 2014 , I can't see how that doesn't fall into the Very Severe category of COPD. Now, thankfuly, it has increased to 44 but that's still a level that would be classed very severe in COPD.

What I'm trying to say is that Bronchiectasis is in itself a Chronic Obstructive Lung Disease. Some may split hairs and argue about definitions but as diseases go, it's chronic and most definitely obstructive so six of one, half dozen of the other.

Now that Bronch has been diagnosed, hopefully your medical team will be more aggressive in treating infections rather then exacerbations of COPD. You will be more tuned in to lung clearance etc., but things shouldn't necessarily be any more difficult for you then they already are.

At a certain point all of us who have longterm, severe lung disease probably have elements of all the major lung disorders. With that cheery thought, I'll finish but please try not to be too distressed about the bronch as you've probably had it for a long time already without knowing.

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That's so helpful Billiejean. The CT scan results i received yesterday, previous one was in about 2004 i think. The bronch is moderate according to the CT reading.

Thank you so much for such a long and thorough reply. :)

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Hi O2

Can't help you out with your new condition. Just wanted to say, I'm sorry you have yet another obstacle to deal with. Your a positive gutsy lady, and you will handle this new condition with

Much help from the family.

Love RUBYXX😊

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Thanks Ruby. Love to you too xxx :)

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I echo what Ruby says above - sorry you have yet another problem. You are strong and positive though, and already fighting by asking questions. I wish you all the very best and hope things get better soon - sometimes just having the right diagnosis and medication helps - I sincerely hope so x

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Thank you Dedalus :) x

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I know It's sickening, when you get another disease diagnosed on top of ones you already have 02, but I agree with Billyjean, because the first thing I thought after readung your post was that you must have already been coping with this for x amount of years, you just didn't known it.

So, apart from you now probably realising that symptoms you might have found puzzling before, now have an explanation, nothing has really changed so, don't let it get you down. xx

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Thanks casper - what you are saying makes sense. I still have to work out why i don't seem to have mucus on my lungs though - that doersnt seem to fit the pattern, though Im not complaining about it :)

Hope you are well casper :) xx

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I have had asthma most of my life, which in later years became Worse, doctors assumed it was then copd as well, after having bad pneumonia I had a ct scan and was diagnosed with bronciectasis. I think I had it for years but my gp would not refer me. I think a lot more people have this but just haven't been diagnosed via a ct scan. I am on flucloxacillin every day, have been now for about three years, it has changed my life. I have also been infection free ( hate to say it, tempting fate) am on seritide 500, spiriva, ventolin. I have a flutter device, this really helps with getting the mucus off my lungs. I feel better now than I have for many years. Don't be frightened, as previously mentioned you have probably been living with it for years already. But I think the secret is long term antibiotics. Hope this helps. Shirley x x

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Hi Shirley, that's really helpful. I assume Flucloxacillin is the long term AB? so equivalent to Azithromycin that others are taking. Quite a lot of new stuff to learn now! Thanks for your message :) xx

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Yes flucloxacillin is my long term antibiotic, I kept getting streppacocos infection that's why this was used. Have gone from seeing my consultant every 4 months to yearly now. Don't lose heart, it is manageable x x

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Thanks Shirley :)

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Hi 02, Sorry to hear this but I know that you will come out on top.

You have to because I have always had faith in you.

Good luck.

I can't offer any advice, sorry.

Love Suzyxxx

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You're so lovely Suzy, thank you. Hope you're right and hope you are as ok as possible :) xxxx

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Hi O2..

I too have both copd with Bronch ...My Copd is very mild I have bronchietasis in both lower an upper lobe ....I have next to no symptoms other than the expelling of some mucous on occasions my Resp specialist seems to think it's not much to worry about just another ailment to go with the copd ...I'm on no meds an not likely to have for some time I'm aged 50 ...I wouldn't worry too much ...Best luck an good health ...Best wishes Wes

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Cheers Wes - thank you, Ive had some very reassuring messages like yours.

I suppose Im worried as my copd is severe, also have asthma, and i use ambulatory oxygen for walking etc. But perhaps it doesn't make that much difference adding on bronch to the stew. Crossing fingers.

Wishing you health, :)

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Hi O2, Sorry hun just seen your post. So sorry sweetheart you have been dx with bronch - it must have come as quite a shock. As you may know I have had bronch since babyhood and laterly asthma, inflam arth and IBS. Bronchiectasis is obstructive but it is also restrictive.

I note one of the things which is concerning you is the difficulty you seem to have getting up mucus. Though the majority of bronchs produce lots, and meany of us copious amounts of the stuff, not everyone does. There are some dry bronchs. It could be that the right area is not being worked on (that is sometimes the case when you get a false negativee sample back) - because it's not coming up it doesn't necessarily mean it is not there or you may just not make a lot. Mine is diffuse but some docs miss what seems to be the worst area which is very upper right, this is where my HI likes to party.

I feel if you haven't got a good respiratory consultant you defo need to be referred. I know I bang on about it but find a consultant who has a special interest in cf/bronchiectasis. She/he should refer you to a respiratory physio who will be able to sort out the difficulty you have with the mucus. I think physio is important even if you are not bringing much up.

Bronch differs widely from person to person. You can see from the responses you have already had many of us are colonised and are on nebbed abs, but you can get an older bronch who has very little problems and a much younger person who has very problematic symptoms.

Whilst it is very true you are the same person you were before your dx with bronch sometime during the last 11 years, now you have the dx you can learn the techniques to manage it well.

Many bronchs mucus colour also differs. Many of us have yellow/green as our norm. I am glad yours is white as it makes it much easier to work out if you have an infection.

I respect and understand totally your reluctance of go onto proph abs in the summer as you have had 3 months free after your horrid time. It might be a consideration for the winter. I wish I could take them - intolerant. Tried again recently - they did great for my lungs but with IBS the effects were not good and I had constant reflux and heartburn. Many bronchs and those with other lung issues however, take them with great success and benefit greatly. Something to put on the back burner maybe.

Don't forget you should now, if you're not already be monitored by a, preferably, cf/bronch con who will be well up to speed on copd and asthma. BTW my con suggested my last attempt at Azith for only twice a week to use for my asthma as it has anti inflammatory properties. Shame I couldn't handle it as it did work very well.

Prattled on long enough.

Wish you well hun.

love cx

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Hi cofdrop, sorry to be so long in replying to your very helpful and informative message. Im getting used to the idea now but wondering how the winter will be - the last one was pretty horrific, not sure Id survive another with same level of infection/bronchospasm etc.

You can see below that Stillmovin's reply gives a clue as to why i could have developed bronch, which seems to have any number of causes and presentations. EDS3 otherwise known as joint hyper mobility syndrome, she says is recognised as a cause of bronch, and Ive had this since a young child.

Its not just about joints but functions at a cellular level through tissue laxity.

My GP said very firmly that the copd consultants had lots of experience in managing bronch, so that one won't fly sadly. If i feel i need to i will get a private consultation at the Brompton. I might not have been clear enough - i don't have trouble getting mucus up when I'm well as i have very little in my lungs, though a lot in my throat which comes up easily. I do have a physio in the community respiratory team who will be able to work with me if i get an infection.

What a pity the azi doesn't work for you. I read a research article recently which detailed a trial where azi was given to lung transplant patients and it did cut down inflammation a lot.

Hope you are well at the moment cofdrop, and again apologies for late reply.

You take care,

love,

xx jean

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Oh hun I am so sorry you also have EDS 3 to deal with. As long as you have a consultant and are not treated solely by your GP, that's good. It could well be that she/he has a special interest in cf/bronch in any event as eg my con is a lead clinician in cf/bronch but also treats lots of lung conditions.

Yes azith is quite beneficial. It works in two ways - it breaks down biofilms in gram negative bugs and in also helps to cut down inflammation.

I am currently on a FODMAP diet from my GI dietician Jean. Crikes if it's not one thing it's another.

I hope you have a much better winter this year.

Btw bronchietasis doesn't come under the umbrella of copd - it used to but it is now considered a separate condition.

Hope you feel some imrovement soon hun.

cx

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Hey cofdrop, the EDS3 doesn't or at least hasn't troubled me much in the past - i used to dislocate a lot in my younger days; occasionally i get a nasty hip pain, and have some prolapses which i can control with pelvic floor exercises.

But the connection with bronch is what interests me.

Can you tell me a bit about the fodmap diet? Ive heard of it but know little. Is it for reflux? And is it helping ?

Hope you have a lovely weekend cofdrop xxxxx

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Hi hun, The FODMAP diet is not for reflux but is used in IBS. It should always be undertaken under the supervision of a specialist dietician. It stands for - wait for it....... Fermentable Oligo-saccharides (fructans-oligosaccharides Di-saccharides (fructose) And Polyols (sugar alcohols). No me neither! The idea is to reduce fermentable carbohydrates.

It amazed me stuff I thought were safe to eat from an IBS point of view were not helping and some stuff I would avoid are fine. eg if I had had a few 'bouts' then I would eat just toast.... NO. I didn't eat things I thought acidic tomatoes, peppers oranges, but these are fine. On it you shouldn't eat wheat, lactose, many fruits are a no no peaches, plums, apples, watermelon but then others are fine, including other melons. Can eat white cabbage but not savoy. Some stuff you can eat a very small amount of.

My first shop was a nightmare - kept looking at my book all the time. Now I am actually finding it quite easy and I think I eat more, unless I am eating out - that's when it becomes difficult.

I have had a few 'bouts' but not as much severe pain.

So this is an exclusion diet but when I see my dietician again I believe we will re-introduce something and see how I tolerate it and so on and so forth.

Just a thought hun on consultaions. I am hoping you will get on well with the con you see and she/he will be proactive and supportive. If it turns out you are not happy I don't think you would need to go private to see someone at the Brompton. I know of quite a few folks who travel quite a distance to see a con on the NHS.

I will pm Brompton adult cf unit details for you.

Take care hun.

love cx

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Thanks so much cofdrop, you're a star :)

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Just tried but it would not send. If you pm me it might let me reply. Gremlins!!! cx

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Hi O2. I've been out of touch with the forum for a while as I am concentrating on this pulmonary rehab course that I have eventually been 'allowed to' attend! Plus the PC screen and my smartphone has changed my eyesight and I can't see a thing!!!!

I thought I would give you a picture of my experience with bronchiectasis and COPD.

As you know, I have bronchiectasis and COPD (although bronchiectasis does come under COPD too). I also have longterm GORD and Ehlers-Danlos III. I was accidentally diagnosed with bronchiectasis in 2010 by a CT scan (the scan was initially to investigate GORD) and it was very mild then. I probably had it a long time before that as I was dry coughing a lot at night and thought it was just dust in the bedroom. The nurse at this rehabilitation course I am presently attending tested my breathing and said I was now at 'moderate' level. Quite dismaying. My mucus has always been light to dark greenish, with or without exacerbations, and the GP said everyone's phlegm has their own colour, despite what the websites tell us about green meaning you have an infection. However, I have been feeling breathless at present (just as I can be in damp warm weather and in the winter), and went to the GP today to get some Amoxicillin 500mg antibiotics, just to be on the safe side. It may not be an infection but I feel very tired and low and the breathlessness hits me when I talk or try to take a proper in-breath. I can breathe out OK. I always bring a sputum sample for testing and even if I have an infection, they have come back showing no pathogens. I get very confused by bronchiectasis and it is frustrating not being able to get mucus up yet knowing that there is a lot of it gathering in puddles deep down in my lungs and blocking up my airways. I do all the proper exercises that I was shown and the Carbocysteine tablets I was prescribed have never helped me in the past. Today I asked the GP to prescribe me a blue-top rescue inhaler for the first time, but I don't think that will help with bronchiectasis as the issue is getting the mucus up, not opening the airways. However, I shall give it a go.

My current medication for the respiratory conditions is Spiriva and Serevent for the COPD & bronchiectasis.

I know you have EDS III too, from our previous posts. It has been accepted by the consultants and GPs that that lies behind the bronchiectasis condition, because of the laxity of the internal tissues. I have seen specialists at Bart's Hospital for the connection with EDS III and my digestive issues in the past, but all they can do is recognise the link between the two conditions and tell me that the treatment for EDS III patients who have GORD or bronchiectasis/COPD is exactly the same as for non-EDS III patients.

Like you, I was dismayed when I was later diagnosed with a separate 'COPD' disease as well as Bronchiectasis, and shown the patch on my lungs where there is a difference between the damage caused by bronchiectasis and by COPD. There is a difference in both types of conditions. One seems to widen the airways into puddles (bronchiectasis) and the other tightens up the airways (COPD). The confusion in the terms are that they are both under COPD together as they are both 'obstructive' conditions - but you know that already! So, in my case, it was first the bronchiectasis, then the COPD.

As others have said already on this post, you will manage your condition well as you are positive and you know how to look after yourself and do all the necessary research. I try, but find it sort of confusing and unpredictable in my case and seem to be battling with bronchiectasis and GORD symptoms hitting me together despite the medication! There is a definite link with those two conditions as far as my own experience goes but all I can do is what the nurses and GPs advise. The pulmonary rehabilitation course is quite short but very helpful too, although a few people are attending who have currently got chest infections and I am not sure if that is causing others to feel poorly themselves!!!!!

Take care O2 and let me know how you are doing.

xxxx

stillmovin

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Hi stillmovin, thanks so much for your informative reply. It is dismaying isn't it? So many similarities between our cases, though it looks like you had the bronch diagnosis earlier than the copd, opposite to me. My bronch is also moderate, and the copd severe.

Ive been encouraged to find a consultant with particular interest in bronch, but my GP won't refer me to the Brompton or similar specialist hospital, as she considers the local consultants have sufficient experience in treating bronch, and there don't appear to be any consultants with specialism in bronch at my local hospital although they do see plenty with the condition. But its the overlap of all the conditions which concerns me and about which i don't think they may be up to speed.

As Ive said in various replies, my "normal" sputum is white and is mostly in my throat. Apparently the crackles in my lower lobes are consistent with having had double pneumonia. This is what scares me rigid, getting another bout of pneumonia. Ive had a new jab a month or so ago, but that will only stop a certain type of pneumonia. I doubt it would do anything to prevent aspiration pneumonia - what do you think about that?

Having asthma means i get dreadful bronchospasms while trying to get the gunk up. Hoping the active cycle of breathing which i expect you will have learnt in PR if not before will help with that. I have a flutter device too, though never used it.

Im feeling more breathless with the imminent change of season but it seems to pass when i take my symbicort. This is pretty much the only lung medication i take as i tried Seebri (similar to Spiriva) but it dried me up so much i had to stop it.

You didn't mention azithromycin - do you take that? My consultant says i could take it in the winter and leave it in the summer as i don't have much mucus then.

Im going to research the link between EDSIII and GORD/bronch - that was particularly helpful info, as I've wondered about that. It certainly makes sense that EDSIII would make the stomach LES weaker. Trying to sort out the links between all the different conditions is totally confusing.

Maybe you've finished your PR course now - I hope its made you feel stronger. I go to a weekly maintenance class where we do the same workout and do it at home one more time in the week. Then i try to walk around the town and on the beach as much as possible. This seems to work ok for the summer but as I've said, its the winter i dread like most of us.

It was you, wasn't it stillmovin, who said you were wondering about moving to Deal? Any advance on that? (Sorry if I've got that wrong.)

I hope you are as well as possible. Very many apologies for this very delayed response after your so kind long reply to me. Im sure there's more I wanted to ask, but this will be enough for now.

Look after yourself with the winter approaching, and please keep in touch when you have the energy.

Love,

xxx jean

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My dear J, I don't know how I missed this news (perhaps avoiding the site)!

This is awful you must be reeling in shock. I'm so sorry, life is tough enough for you and you've dealt with it so well. What a blow

I'm now going to read all your replies and advice, I won't be able to add to it but please know I'm thinking of you with loads of love & hugs. P xxxx

Edit: just read them all. How amazing all that support is out there after all.

Perhaps the new dx explains a lot, the fact that you may have had it for a

while. A part of me is wondering why your last ct scan was 2004 given all

you've been through, or perhaps I've mis-read.

Wishing all the very best to get sorted before winter sets in. Pen xxx xxx

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Thanks Pen, much appreciated. Im beginning to get nervous as its getting to autumn now but thankful I've had a good summer and have been getting stronger. Im full of admiration at how the "long-term" bronchs cope, and their advice and comments have been helpful.

Hope you're ok down there in the Cotswolds. Sending much love, xxx jean

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Wet n cold here, heating is on as I'm a bit low in energy.

I recently noticed stilltruckin takes NAC and 1800mg vit c daily.

Then somewhere else Vit C & bioflavonoids (for the bruising I think).

Silly question, here goes anyway...have you got any cashmere scarves or woollies? I'm not fond of where it comes from but I swear investing in a fine cashmere stole has helped me in the winter/cold/wet/damp.

Thinking of you xxx

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Good tip P, thanks. I don't have any but know cashmere is very cosy. You keep warm xxx :)

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