British Lung Foundation
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COPD umbrella??????????

The whole COPD umbrella thing is nonsense to me it should be you have this or that for example Emphysema, Bronchitis, Asthma, Small Airway Disease , Bronchiolitis etc the whole umbrella thing is too confusing and much too general because I believe each disease is quite distinct and why we are accepting this COPD diagnosis is a utter joke which leads to too much speculation and generalities. Time for the “umbrella “to be shelved. Medical research should compartmentalize each condition and concentrate on each one individually. Just my two cents

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Hi

COPD is only a umbrella term for emphysema and chronic bronchitis, with a possible inclusion of chronic asthma.

Asthma in general as always been a separate condition which responds better to inhaler therapy.

Bronchiolitis is a separate condition requiring specialist diagnosis and treatment.

Small airways disease is also a separate condition, but can be associated with asthma and Bronchiolitis.

If you was a smoker, or worked in polluted atmosphere you can have a element of more than one of the related lung conditions.

I’am emphysema with slight bronchitis.

As there is a element of mimicking in each condition some health professionals will use the lazy version COPD

That is one reason to keep on at your GP for a definitive answer as to your particular diagnosis.

Not that it helps much, there appears to be similar treatments for all with a few extras thrown in for excess mucus and aniexty.

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I think you hit the nail on the head Stone when you stated keeping your GP on their toes . But unfortunately here in US it is quite a vague title especially when it comes to insurance etc as it seems to make a stew of it all. Yes , Asthma is as you noted a separate condition but many health professionals here in the states don’t see it that way which is why I made my post

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I have Brittle Asthma If put COPD my insurances would be much higher

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Well said, stone-UK. I soooo agree. It is one of my bugbears that GPS can go down the COPD route too quickly. My GP said I probably had had COPD for years. Nonsense. There was no evidence of it. To be fair (only I don’t feel like being fair to him or other doctors) on first glance Obliterative Bronchiolitis can look like Emphysema but too much didn’t fit. So, politely (with gritted teeth), I pushed for a referral. And eventually I got the dx.

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Well said Stone. xx 👏

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There is no way on this earth that Emphysema requires the same treatment as Chronic Bronchitis, but as nobody seems to care enough to fund any proper research, they use the COPD umbrella so they can make millions out of inhalers without properly treating either disease. Until both are treated as the separate diseases that they are, nothing will change.

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I do agree with you but one of the problems with that is that most copd sufferers have primarily emphysema or chronic bronchitis but with some of the other. How would you categorise and treat the majority? x

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Some COPD sufferers may have some Level of bronchiectasis only detected by ct scan. Therefore may be unaware and not receiving the correct treatment / meds to control flare ups. CT scans are expensive but I feel are necessary for all ‘Copd’ sufferers .

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Ah that's a different issue. I think that like cancer and heart problems we lungies should automatically be referred to experts and scans etc. are carried out. It seems luducrious that we are left to the tender mercies of a GP or even a nurse. x

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Well said roey123 👏! Well said I agree 100% there must be separation no matter how similar just like Left Ventricle and Right Ventricle heart disease are treated separately. Enough is enough !

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I think the term was first used in 1965 in a conference in Aspen.

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1965 was over 50 years ago it’s time we moved on and not be complacent on theories and labels that are over a half of century old, don’t you think ?

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Used to be COAD chronic obstructive Airways Disease when I was nursing in the 80's

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Perfect example of my gripe has many posts of folks getting better readings on their annual test but their profi just says COPD not specific . I’m guessing it’s not Emphysema but something else under the mysterious umbrella which proves my point why each condition should be separate. Anyone with Emphysema getting improved numbers ? I would bet not but I may be wrong

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So totally true every other lung disease has a name so why are we loaded into one ?From joining groups and learning we all suffer in different ways i have freinds with COPD and yet they dont get the same symptoms has me !! And yet in the mane we all get put on the same meds x

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Hi

The reason for similar meds, is because we are not being treated for the actual condition. But for the effects which be can common over the majority of incurable lungs conditions. Inflammation of the airways, narrowing of the airways, excessive mucus, anxiety. As we are all different we tailor the inhalers to suit, bit of a trial and error.

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So true Stone a culmination of 50+ years of trial and error. And the beat goes on !

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You've hit the nail on the head Stone, we are NOT being treated for the actual condition, so "chuck enough mud at the wall & some will stick". I'm not even confident that the "Consultant Respiratory Physician" didn't really understand just WHAT the CT Scan was showing him, but he certainly wasn't prepared to walk me through the segments in any way!

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Dude I’m the guy that brought this umbrella nonsense up and I’m not Stone lol

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If you look where JagNut replies you will see it says in reply to stone uk.

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I agree with you whole heartly. I have had asthma from childhood and have lived a normal life. I now have to have a test for COPD and being life long asthmatic and being nearly 80 years of age I do not hold much hope of "passing the test". This will result in endless problems getting insurance. Without this site I would be in a deep depression thinking that I am facing a life restricting illness. It is so good to read all the positive things that COPD sufferers post here. We cannot expect some poor 20 year old in insurance brokers or indeed software to understand that there are different degrees and types of copd.Insurance can go from a couple of hundred pounds to over a thousand for travel even in Europe. My father had what was then known as chronic bronchitis he was up and down but always expected to improve. A friend with COPD was told that she had to accept that her activities would be less and less as she had copd thus removing any hope of things improving.

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This all comes from a political decision taken in the 1990s by a Labour government looking to gain votes. I kid you not. I know the person who was advising them on it.

COPD is a relatively new term for old conditions, one of which ( emphysema) has been named since the seventeenth century. Asthma was added into the mix more recently. Emphysema and Chronic Bronchitis both have similar causes, exposure to smoke or environmental factors.

Other lung conditions, bronchiectasis, IPF,etc have different or genetic causes and the lung damage is different.

In the 1970s a huge survey of lung diseases showed that there were huge amounts of people with emphysema and chronic bronchitis compared to any of the other known lung diseases, most of which were viewed as being comparatively rare.This was because so many more people smoked or worked in damaging environments and had always done so up to that survey.

So when Blair’s government were looking for a high profile vote getter they used the term COPD and produced the first written programme for a lung condition. This left the rest of us very much out in the cold. The idea as far as COPD parients were concerned, was a good one. They got a diagnosis, a programme of treatment - inhalers, antibiotics, pulmonary rehab, on tap through their GPs surgery. Doctors were trained in COPD and also practice nurses.

Unfortunately, over the years and from reading the experience of many COPD patients on this site, the implementation of this programme has become somewhat adhoc and some GPs complacent. Because it was GP led, there does seem to be an attitude amongst some GPs that they can handle it and therefore a reluctance to send a patient who is struggling for specialist advice.

Meanwhile the rest of us continue to have to fight our own corner. Strangely, this may now be working in our favour because GPs know so little about our conditions because they have no training,that we are forced to insist that we have a specialist to advice. Whereas most with COPD are reliant on the programme implemented by GPs.

I hope that in my convoluted way I have unravelled some of the wooly fog RedSox.

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Thank you your reply is fabulous and it is spot on and many folks on this very forum should remove their blinders and understand fully that no matter what their medications are and there similarities to each other’s conditions they are different and not just under one titled umbrella

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Yes it is very complex. Conditions overlap and within each named condition we are all different.

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I would certainly exclude asthma from the COPD definition as it is reversible and therefore treated differently. As well as my late onset asthma, I was initially diagnosed with COPD (indicating, at least in the UK, that there is a distinction), but this was later changed to fixed small airways obstruction because I had never smoked. Consequently, I drew the conclusion that COPD is reserved for lung conditions associated with smoking, even though the effect and treatment are much the same. As for chronic bronchitis, I can't say, only that I had acute bronchitis as a child and it seems more of an upper respiratory disease, which I would imagine is treated differently.

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Severe Asthma only comes under the COPD umbrella, which, in my opinion, makes sense in my case, as I was told I only had 10% reversibility five years ago and it is much less now. What was originally Asthma, is now Small Airways Disease, or fixed lungs. I suspect most people with Severe Asthma have reduced reversibility because of all the bad chest infections over the years.

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I did not realise that asthma was included under COPD. I've had asthma since I was a baby and no one has ever mentioned it, but I am taking Spiriva which is only given to COPD patients normally. The asthma nurse had to get the consultant to approve it. I have always wondered if having had asthma all my life, there has been an effect on my lungs long term. Whether that would mean a COPD diagnosis or not, I'm not sure. I am in my early 40's and often wonder how my health is going to change in the future considering the last 10 years hasn't been good asthma-wise.

In response to Superzob, just a query, how is asthma reversible? Is it just the symptoms that you are talking about? Just curious.

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This is a good example of how these conditions overlap. I have bronchiectasis and have had a spiriva inhaler for at least twenty years. I also have ventolin which I need in some situations but very rarely. I am sure that I have read that some people on this site with copd ( emphysema, chronic bronchitis) also use spiriva. It all depends what we need as we are all so different. Asthma has only been included under COPD comparatively recently. The major difference in treatment between bronchiectasis and the COPD conditions is that our consultants do not like to give us oral steroids.

Long term asthma can sometimes result in bronchiectasis but can be misdiagnosed as one of the other copd conditions. If you begin to get an undue amount of chest infections have this checked on.

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Thanks. I'm under the consultant at the moment so will see how it goes.

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Snap I never smoked bit had Asthma since a teenager. COPD embarrassing as people assume I'm a heavy smoker...... Yes Long term Asthma slowly damages the lungs. Spiriva is quite good. Same age so I guess it's long term Asthma and breathing in pollution etc. Old age lol.

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I know how you feel. I have never smoked either. I have always tried to be healthy. It's hard.

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I’m reading all the replies and it got me thinking why there are no members here with emphysema that are in their 70s it seems many folks here are getting on with COPD but not those with emphysema which is why I originally posted this umbrella thing . There just seems to me that “surviving” Emphysemics are few

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OH I bet there are lots of us really!!! I have severe emphysema and plod along fairly well with it plus bronchiectasis and other health issues. I'm almost 75.

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Thank you and God Bless you Anastatia

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How long have you had Emphysema please ?

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HI Vonnie....I wasn't actually diagnosed with Copd until about 16 years ago....how time passes......but I had it several years before the diagnosis so over 20 years. Oh how I wish I had never smoked!!!! 😕

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I think we all wish we had never smoked but it was advertised as good for us, sexy and very glamorous if only we knew

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I agree, Vonnie50. Doctors/nurses smoked in their offices when I was pregnant and we all smoke in the hospital when I had my daughters (older daughter 52/younger 49).

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Exactly smoking was in cafes on buses hospitals everywhere

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Would I be rude to ask you how long you’ve had Emphysema?

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Oh not rude at all Redsox. The answer is over 20 years but only diagnosed officially 16 years ago.

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After waffling on about my lungs being 'like a tree in winter', my 'Consultant Respiratory Physician' then decided it was Emphysema. I put myself on NAC the following day and have been improving ever since, especially after stopping what he prescribed, Tiotropium and Aclidinium, both of which generated 'Paradoxical reactions', and I'm 72 next birthday, can walk 2 miles in 50 minutes, run upstairs regularly, all with Oxy levels never dropping below 90%.

We have the power to combat this attack on our fortitude by stopping smoking (stopped 2014, started vaping, now vape @ 0 nicotine level), exercising, eating well & above all, stay away from the Medics until they respond positively to us globally, or indeed we need them in an emergency!

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Thank you and God Bless

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Hi

Emphysema and 71years young.

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God Bless you Stone !

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I am nearly 75. Have severe emphysema. Diagnosed as such, 19 years ago.

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Wishing you the best Bev ! When you were diagnosed what stage were you ? Are you managing now? I do hope you are. God Bless!

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Did you have severe emphysema 19years ago though?? Tia

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Hi RedSox

I have emphysema and I am 76 x

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I agree entirely GP’s seem to use COPD as a soft option blanket description

I have to lever every scrap of information out of my GP . I come out of the surgery sometimes wondering if he trying to protect my reaction to reality.

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Interesting thought but I think as lay people we probably don't quite get the reasons that medics like this usage. While all the diseases are seperate in medication and, to some degree only, in treatment they are all affecting the one fundamental organ - the lungs.

Some respiratory disease like asbestosis, pneumonconiotis, are different as their cause is identifiable - mineral inhalation. And in most cases they are what the clinical professions call 'acute' - meaning they come on fairly suddenly. Our problems are 'chronic' - which clinics understand as slow developing.

Technically I believe that asthma is not generally included, again because it differs in presentation and morphology from any of the others. But for us COPD brigade it is often an included problem, sometime manifesting much earlier than the COPD.

As I understand it emphysema, bronchectisis (edit - chronic bronchitis is included NOT bronchectisis as stated originally) and one or two others - less common in one case but much nastier - are called COPD. This means the care can be 'bundled' together as it is generally the same, even if the drugs used differ from patient to patient.

There is one issue I think does need addressing and that is the difference between diagnosis and care. Doctors are taught to diagnose and indicate treatment. Nurses are taught to care and that means a more holistic approach. I have found, in different surgeries and health areas that GPs are OK but if you want good COPD care you need the practice COPD specialist - usually a nurse or a nurse practitioner.

In my area of Essex there is a team handling COPD and they are brilliant. Inevitable really since they specialise in the care of people with serious respiratory impairment and they get to know how we feel, what we need and what might work for each one of us.

Now two stories:

I was an asthmatic as a child but stupidly did what everyone in the family did and smoked! At about 14 as the asthma receded my then GP, a genius man, said "The good news is this was childhood asthma; the bad news is, it usually returns around age 65." He was wrong by 3-4 years but I had smoked and he did not know that. My COPD diagnosis came much later, at age 67-8. I smoked from ages 14 to 50 and gave up in 1993 at 50. I was already short of breath.

And second my life was saved (from AML - acute (rapid onset) myeloid leukaemia) by a bone marrow transplant from my 5 years younger brother. In 2004. A year later, 2005, he was diagnosed with COPD (emphysemia and more). I was diagnosed in 2009, similar but less bad. My immune system is a chimera (two genetic origins) so I do wonder, did I get a life but a double dose? Life, I fear, is like that! Or at least the price of life. I still mightily thank my brother!

Always remember, today is the tomorrow you worried about yesterday....

EDIT - I have rightly been taken to task for being bit cavalier in saying bronchiectisis is includied in COPD - wrong; chronic bronchitis is. It came about because a view was expressed to me by a clinician that any difference was a moot point from the point of view of the victim!

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Bronchiectasis is not incuded under COPD.

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Is that so ? I honestly did not know that . Thank you. What exactly is bronchiectasis ? Does it mimic emphysema on a ctscan?

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Only emphysema and chronic bronchitis come under COPD. This is because they are both chronic and obstructive. They also have similar causes, smoking or bad environmental working conditions and they usually come on in adult life.

Also Sometimes asthma has been included in recent years but not all consultants agree on that.

Bronchiectasis is the result of a trauma to the airways or the alveoli (air sacs) in the lungs. There are quite a few of us on here who had it from a very young age ( I was diagnosed at 3) because of pneumonias or something like whooping cough. It is now being diagnosed in adults with a history of frequent chest infections.

Whereas the damage caused by COPD manifests itself as breathing difficulties,tightness, a cough and a tendancy to infections, our main problem is fluid which collects in the damaged lungs or airways and becomes infected. This means a lifetime of daily lung emptying, exercise and very frequent antibiotics This would mean that any doctor who knew what they were talking about would not diagnose bronchiectasis as emphysema ( although it has been known as thirty years ago I walked out of a hospital clinic when a stand in doctor kept telling me I had emphysema). As bronch can only be diagnosed by ct scan I would say that any good medic should be able to see the difference to emphysema.I hope that helps.

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Thanks for that -you will maybe see my edits.

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Timber man I thank you for this very concise explanation. Btw is your brother still alive ? The reason why I brought this subject up was as you put it the nastiness of emphysema and it seems I never read on this forum of folks who have had this nasty disease saying “oh I have had this over x amount of years and I’m still stable “ whereas others with quote COPD seem to manage much longer

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You are certainly a battler. So welcome to the bolshy bronch brigade. What you have said about your conditions and your very good COPD care at your surgery bares out what we have been saying about the overlap in conditions and from the bronchs’ point of view, the criminal injustice of the political decision in the 1990s to formulate a programme and spend money for the two conditions under the COPD name and train GP teams and nurses whilst ignoring the rest. You are proof that you can have COPD together with bronchiectasis if your lungs suffer a further assault. Our practice nurses can’t even pronounce bronchiectasis!

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Sorry littlepom but we are not all part of the bolshy bronch brigade. I have had chronic bronchitis together with mild asthma for some forty odd years developed emphysema about eight years ago, and as a result of a CT scan whilst in hospital diagnosed with bronchiectasis Four years ago. Since then I have had very good care from my GP, respiratory nurses, and Consultant. I have been on three PR courses, have attended courses at the local hospice and also now with the help of the hospice am on daily palliative morphine. I have a nebuliser provided by my nurses who are always at the end of a phone line should I need help or advise. It was the nurses in fact who sent me into hospital in November where I spent two weeks. I do recognise that not all parts of the country offer the same care but in the West Midlands where I am I can not fault the care I have had and I do think that sometimes the flag should be flown high for some respiratory care.

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Oh dear clematis, I think you mistake my ironic take on the way we life long bronchiectasis patients have had to struggle with our own bodies and government indifference for a serious description of the personalities of all patients who develop it.

I am glad that you were only diagnosed four years ago and you are benefitting from the advances which have gone on over the years, Mostly owing to bronchiectasis patients pushing for the treatments and services that they need.

Forgive me for pointing out that you got PR because you come under the copd umbrella with your other longer standing conditions. Most patients with solely bronch are denied it, including me, because it is in the copd programme and not written up for bronch. The hospice help with your ongoing problems is, of course, marvellous.

I am also in the West Midlands. I have access to my consultant which is a lifeline for me. Our practice nurses cannot even pronounce bronchiectasis. My GP is very cooperative with my consultant. Owing to my own efforts I have managed to get a cooperation between my consultant in Birmingham and my local hospital so that I can have IV set up at my local hospital and self administered at home instead of having to be admitted to Birmingham for two weeks. Persistence and ‘bolshiness’ got me that. Now other patients in my position may have it also.

If I hadn’t been a ‘bolshy’ type and my Mother even more so, I would never have had the treatment and quality of life that I have. When I was six doctors wrote to my Mother stating that I would not survive another pneumonia, to send me to sunshine school because I would never manage normal education (I still have the letter, aged 68).

My Mother found an amazing man in Leicester who started me on the treatment which we basically have today.It was very radical at the time and my GP got into trouble for implementing it. The specialist told me I had to be strong and determined. I went to normal school, grammar school, travelled the world, married, had children, went back to University, did a higher degree and now I guide in a Heritage property. None of this is easy when you live with the debilitation, exacerbations and tedious daily routine of bronchiectasis.

Every step of the way I have had to make myself aware of research and treatments coming through for us and push to get it. I am still pushing to get us access to drugs which are available to cf patients but denied to us when bronchs have taken part in the trials and know that they work for us.

There was a time when GPs would tell a bronchiectasis patient that there was no such thing and that we (I) ‘think too much about yourself’. When the government decided to fund copd at the expense of other lung diseases in the 1990s ( see the answer to an earlier post) we were left out in the cold.

It has been one long hard fight. I am not on my own with it. So forgive me for describing myself and other lifelong bronchs as bolshy. I am proud to be so and I shall continue to be so as long as governments and lazy doctors need to be brought to account and patients encouraged to insist on proper diagnosis and treatment.

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Hi RedSox, Yes he is - I am 75 and he is 70. I would say he is a little worse than me and he has a complication which is nasty. But we soldier on. Right now I am having a good spell - Feb and March were nasty his year. I have emphysema and brochectisis with a side order of asthma and now some circulatory problems. But I had two doses of chemo and the bone marrow tranplant for the AML so I blame the drugs for the latter.

The explanation is because like you I was puzzled a few years back and grilled a specialist and then dear old Google to get some perspective. I should have waited - the COPD nurse practitioner Ruth who I met only last year after movimng home explained it all so much better!

All the best.

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Thank you Timberman and God Bless you and yours wishing you the very best

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Hi Redsox,

I agree with Stone's observations however as a bronchiectasis sufferer I must plead to have my condition identified under the COPD banner.It is an unhappy fact that Medical schools do not have the time to detail all lung conditions to their budding GP's.The result is that at Primary Health level the knowledge of most lung conditions other than cancer or tuberculosis is sketchy at best.

If you have a "good switched" on GP you may be lucky enough to be referred to a consultant in respiratory diseases.right now many of these particular experts are converting COPD labels to there correct description and providing appropriate management solutions.

Unfortunately this gives further support to the fact that the NHS is and has been desperately under staffed in many of its specialisations which means that correct diagnosis is increasingly problematic.

Hopefully the recent announcement of further funds by the Government will result in better outcomes for many of us.Just don't hold your breath!!

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I act as a ‘patient’ for doctors’ examinations from first year students to those wishing to become consultants. The lack of training in bronchiectasis at every level is woeful and for us, frightening. The students begin by looking at my nails. Some think that they are clubbed so first pointer to copd. They aren’t. They are a different shape associated with bronch. They listen to my chest. Begin to get more confident but may be a bit puzzled if I am ‘rattly’ because I haven’t had chance to empty my lungs. Then getting more cocky there comes the comes the killer question. ‘Have you ever smoked’. As the answer is no because I have had this since I was three, there is a sudden deflation of the confidence and panic because time is running out. It is at this point that those ( very few) who are going to go on to make excellent doctors have a different light go on. Usually the examiner and I are saying ‘go on, tell us what it just might be’ Some explain ‘oh bronchiectasis’ and the swots go on to give diagnosis tecnique and treatment. Examiners and I have been know to applaud. Mostly these students have chosen to learn about bronchiectasis for themselves as it is very low on training priority owing to the government policy arrived at in the 1990s. Please see an answer higher up. My worry about putting it under the copd banner us that this won’t lead to further training for medics but to doctors treating it the same as emphysema and chronic bronchitis when it is totally fifferent. At present, because of lack of knowledge on the part of GPs and most general respiratory consultants many patients are wising up and insisting on going under the care of a bronchiectasis specialist.

I think that it is time to dismantle the umbrella and treat all lung conditions and combinations of conditions as what they are.

Blair’s government did untold damage to everybody with a lung condition by singling out two conditions which were very common, giving them them the title of copd, (which had been mooted at medical conferences since the 1960sbecause they have similar causes and prognosis) throwing money at them and giving those patients the first standardised written programme of treatment. All to get votes from the thousands of hitherto virtually ignored sufferers. This left those of us with other conditions even more neglected by government policy.

It is not working now and should be changed in order that emphysema, chronic bronchitis and all of the other lung conditions get the services and treatments that they need. Also doctors who are trained to recognise their condition and do not confuse it with others.

Sorry about the long reply but I really do think that it is time that this is addressed.

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littlepom you are so correct Dismantle the umbrella is right it is just a safe warm cozy haven that protects the politicians and pharmaceutical big wigs and all others that cry “lack of funds” while money is spent frivolously on unimportant pomp and circumstance

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👏

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I can understand your upset. In Australia all of the things which are called COPD are there own individual disease and are treated that way. The first time ever hear a doctor call it COPD was here in Hong Kong up untill that point. I had never heard of it. I do not have any of this group of horrible things but was tested as some of my symtoms are very close to COPD. My doctors are still seeing if I may have one of these. So far these have made there minds up that it is brittle asthma. So I hope that helps you.

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Good luck to you! Hopefully you will get a concise diagnosis and specific treatment for your condition rather than the same old same old medications and quit smoking, exercise and eat well advice which although is awesome it just seems too fluffy for me as there are folks who have been told this and are rapidly deteriorating

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Regarding emphysema, my brother had a friend who, when diagnosed at the age of 49, was told that he only had months to live. He died last winter, in his mid 80s.

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Truly great to hear and may he Rest In Peace

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It concerned me recently that the new medical professionals recently qualified are calling lung issues COPD without knowing what the lung damage actually is and some people are tested and diagnosed purely on a spirometry test which does not give any accurate detail of the lung health.

My spirometry can be above a healthy lung person

My lung functions shows I am below 70%

My gas exchange is below 50%

I have emphysema and bronchiectasis. So in my case and I would say several others the spirometry test alone is not sufficient for a diagnosis of COPD nor identifying which lung issue is the problem.

Chronic Bronchitis is different to Emphysema, Chronic Asthma, Bronchiectasis and Alpha1 and they all need adjusted treatments to suit the symptoms being experienced by the patient, if the medical professionals start labelling everything COPD ..... you can guess the problems which could arise in the care of individual patients, even when mostly we all need brocho dilaters and inhaled steroids, some may need carbocystein others not, some may need maintenance dose ABs or oral steroids others not. Some nebulizers others not , same for oxygen, etc etc.

It does annoy me too that my lung problems are named copd, when in fact my diagnosis is emphysema and bronchiectasis.

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My diagnosis is the same although it was partially done as a result of a biposy during a pneumania episode. My lung function is about 40% and the last spirometry about the same. I have never had a gas exchange test however and was interested in that.

Seems to me that short of a biopsy very little can be known about what happens in the lungs and the same for the bronchii. Problem there is that a biopsy of this sort is very invasive (and painful) and possibly risky for some patients.

It amazes me however that there seems to have been little work done on whether using gas mixtures in controlled breathing environments might not be a help. After all the ultimate solution in young enough/ fit enough patients is a lung transplant and that is very very expensive.

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The Gas exchange is part of the full lung function test carried out at the hospital when under a specialist respiratory doctor, its the DLCO measurement or sometimes referred to as TLCO.

uptodate.com/contents/diffu...

Not every one with COPD needs oxygen if the arteriel blood gas is ok.

Lung transplant is a last resort, it impacts on health in other ways.

Lung volume reduction surgery is a better option if the patient qualifies and the coils is another option again if the procedure will help the patient, not everyone needs the procedures and not every one will benefit from having them done.

Many patients improve greatly just by taking the medication as prescribed and exercising regularly ongoing.

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blogs.bmj.com/bmj/2018/06/1...

An interesting read on this very subject

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I agree red Sox my pulmonary dr. told me I have borderline cops and then he said that's good news, he didn't tell me what kind I had he put me on anoro once daily.

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It's my understanding you can have borderline copd and never go on to develop COPD if your lucky

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This is the definition of Bronchiectasis - "is a disease in which there is permanent enlargement of parts of the airways of the lung. Symptoms typically include a chronic cough with mucus production. Other symptoms include shortness of breath, coughing up blood, and chest pain."

My symptoms do NOT include a chronic cough, coughing up blood or any chest pain; only shortness of breath and mucus production.

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We bronchs are all different Timberman. As a lifelong bronch I do not have a persistent cough and only cough to empty my lungs unless, as recently happened, I have a virus or I have an exacerbation. I do get chest pain in the most damaged part of my lungs when I have an exacerbation or, strangely, I am very tired.

I was not used to seeing blood ( except the odd streak during an exacerbation) until my heart failed and the heart doctor and GP insisted I take anticoagulants. After two nasty bleeding episodes I have refused to take anticoagulants. My heart specialist wasn’t happy, my GP was nasty, my bronch specialist very supportive. Finally my heart consultant told me last week that many people don’t take the anticoagulants and that the risk of stroke is minimal. Guess what is the first contraindication on the leaflet for all of the anticoagulants. Yes you got it- bronchiectasis!

Good luck with it. We must stick together, look after ourselves and each other.

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Oh wow that’s really how I feel as well. When I woke up out of my last heart surgery after having been on machines for a week I said”And so why did you do that to me” and when they told me I wasn’t breathing on my own I asked why and how come and then came all of their”go to” words like CoPD and I was full of questions like” where did you come up with that”and “what is that suppossed to actually mean” and”show me”. One Dr told me I had Emphysema an I said”send in the next Dr please I believe it’s your first day on the job”. Then I had my PCP telling me” it’s asthma and here’s your little pocket inhaler and then here’s some more inhalers Incase that one doesn’t work and then here’s the laundry list of other drugs you’ll be prompted to take whenever somebody in a white coat tells you to. That’s when I just said to myself”I’m not playin this game” that blanket diagnosis didn’t set well w/me either.

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Good for you Sandyeggo

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I wanted to say copd

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I have had asthma since I was about 5, at around 13 it appeared to go but came back with a vengeance when I was 27 when five years in a row it got so bad I was put on life support. The consultant told me I was a brittle asthmatic and gave me new drugs which have worked wonders. I have had an asthma check every year and my Ventolim inhalers go out o date before I need to use them. I have had about 4 chest infections in 13 years, but all of a sudden the nurse announces I have copd. She has sent me for X-ray but it shows no scarring, no ‘fluff/clouding’, as she put it, she has sounded my chest and I have no wheeze or crackle, my peak flow has not changed since I left hospital 13 years ago. So how do I go from brittle asthma to copd when nothing has changed. I’m awaiting to see a consultant in October but only got this appointment at my insistence.

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Good luck with your appointment and the very best to you

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Cheers RedSox, all the best

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Thank you Florenc3 and cheers to you as well

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RedSox, I understand what you are saying....and for research and a cure...they very much need to separate them ....they throw everything under COPD...it's just one of the reasons there are none or any that are cured, because they are all vastly different diseases, even emphysema has different types. And, this is what The University of North Carolina, the the University of Michigan...and others who research all say and are doing. And, if makes sense once you look at research...I think, this is why they haven't cured nor even have advancements to stop progression.

I understand what Stone-UK, is saying and he is very, wise and knowledgeable. But, here in the US, like RedSox says they throw everything under COPD....even allergies!! Really!! (That's why we are here with you wonderful people, and so grateful!).

I am speaking on research for cures...Dr. ..... discovered that there was emphysema and chronic bronchitis in 1821....is it not time for some lung disease cures!!! I think so!!!

Hope everyone is having a very good day.

Take good care!

Meg 💕💕🌹🌹

Edited by mrsmummy.

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Thank you Meg you have nailed it and here’s to Michigan and North Carolina !

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RedSox, the University of North Carolina are now working on them separately....the started spring 2018!! They added CF in there also...North Carolina University has had alot of success with other diseases.

Take good care!!!

Meg💕💕

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Meg how are you faring since your diagnosis? Are you mild ?

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Mild emphysemous changes showed up on a CT scan for gallstones..... yep!! So, I am "Mild COPD" at my doctors and hospital.....

Meg💕💕

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Oh....I am doing well....are you feeling well? Sure hope so!!

Meg💕💕

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I am thank you Meg although it has been quite hot and humid here in New Jersey but I’ll manage

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I was diagnosed with umbrella COPD but after finally seeing a consultant 3 years later was diagnosed with emphysema and bronchiectasis by a ct scan. I think it is important to know because I.e was told that with bronchiectasis you have to take antibiotics for a longer period to stop a flare up. This means to me that last winter my chest infection could have been treated quicker and probably not led to a further 2 chest infections straight after each other.... less damage to my lungs??

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many interesting answers thank you all - just one more point as far as the public are concerned COPD means very little I find I still have to qualify it by saying in my case emphysema which people have heard of and understand, so forgetting all the medical side the umbrella term does not really work in the 'real' world xx

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True so very very true undine

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Often too quick to diagnose anyway. A friend of mine had a respiratory event and was labelled COPD and put on inhalers. 9 months later told she has and never had COPD!0

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Completely agree, they keep trying to put my broncihectasis under the umbrella but I refuse to accept it, I have never been a smoker and don't want to be labelled with them.

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Hi Kaylife.... There are many person's who have COPD, that have never been smokers in their lives. Alpha 1, is a genetic emphysema, paraceptal emphysema can be caused only by repeated infections starting in childhood and continuing, they are also learning the majority of smokers do not get any lung diseases. Think about that? Smoking is not good, but neither is bleach, nor certain professions, hair dressers are at great risk for lung diseases. The more you research the more you find out about these diseases under the four letters....maybe this will make you not feel labeled anymore. Just thought this would help you!!

Take care, Have a great weekend!

Meg💕💕

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Thanks Meg x

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I have no idea whether I have emphysema or chronic bronchitis and every time I ask nurses/doctors they get annoyed and say it doesn't matter as it's all copd. The truth is they don't know and one nurse I pushed really hard said she would 'guess' it was primarily CB and not E which she said was better. Guess? hey this is my health we are talking about even if I am only mild. I have asked for a referral to a consultant and been angrily refused as not necessary. I have given up asking now... x

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Hello Hypercat just wondering did you ever have a CTScan and wouldn’t that have been close to conclusive ?

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Pablo Picasso, suffering from stomach problems , once said , “I cannot get any relief it’s as though art has become science and medicine has become art “ so ironic !

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My consultant also agrees with you. He hated the term saying it just causes to much confusion

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I totally agree .xx

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Thank you to all who have contributed to this post it was wonderful seeing everyone’s replies as we hopefully have learned so much from one another.

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The BLF should be tackling this issue with the government and the NHS bosses, and presenting this particular post as ammunition, not running surveys on '' what gives you the most problem with your condition'', the world and their dog already knows the affects of lung disease, this won't change until the correct questions are asked, and the correct research and medicine is used for the appropriate type of lung disease.

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