Can I ask what disease come under this heading copd as now understand copd is umbrella term am I correct...or is it a condition on its own ....one of the questions want to ask consultant but don't want to look stupid
You certainly wouldn’t look stupid Emily but it’s emphysema and chronic bronchitis that come under COPD. I believe there may be one or two other lung problems that also come under the umbrella term COPD but I’m unsure of what they are. Xxxxx
Sassy59 is correct.
Chronic obstructive pulmonary disease (COPD) is the name for a group of lung conditions that cause breathing difficulties.
emphysema – damage to the air sacs in the lungs
chronic bronchitis – long-term inflammation of the airways
It can include chronic asthma
Oh thank you because I don't know what type I have i have got asthma thank you so much for that
Hi I agree that generally copd covers emphysema and chronic bronchitis and some meds include asthma or another one under it as well. Most people with have primarily CB or E with a bit of the other.
However on my last copd check the nurse told me you can have emphysema without having copd, and you can have copd without having emphysema though I don't understand this at all.
Please do ask your consultant as we seem to be told different things, and let us know what s/he says please. x
I will do most definitely
I suppose you can have chronic bronchitis ( a copd condition) without emphysema but as emphysema is a copd condition I think that the nurse needs some more training.
Well I did ask her to explain it but she just said it was very complicated! x
I think she got herself in a twist.
I suppose she was busy and didn't have time to explain properly. It is complicated I suppose but for patients perhaps it is useful to know that in COPD, airflow in the lungs is obstructed for one reason or another. Treatment wise, much depends on which part of the lungs is damaged. The degree of obstruction can be defined by breathing tests such as spirometry.
Thank you so very confused now as I am moderate with all this information I am back to be overwhelmed and scared as apart from my forstair which I was on for my asthma....and me asking for spiriva not sure if I am on the right treatment..and I don't know what part of my lung is damaged
If you have emphysema it is the air sacs (the aveoli) at the bottom of the lungs which exchange gas and air which are damaged.
If it is chronic bronchitis the damage is higher up in the airways. Most people have damage in both areas with one worse than the other. x
How will I find out which
Well you won't if your doctors just insist it is all copd. It doesn't really matter anyway as the treatments are the same, and like I said most people have both.
I have asked my nurse and doctors this question numerous time and they just insist it's all copd. I think they don't know. x
Maybe there is a unobstructive or nonobstructive and/or acute ...not chronic emphysema? It might be classed under ANPD. Acute, Nonobstructive, Pulmonary, Disease.
Couldn’t agree more with you xx
There are many more folk here more knowledgeable than me, and my understanding is COPD is am umbrella term for several lung diseases.
You are so lucky to be seeing a specialist to get the correct answers. Hope it goes well.
Hi having read some of the responses I am back to being overwhelmed and scared as I don't know if I am on the right treatment..my forstair I was on before for my asthma and I asked Dr for spiriva.......how can I slow the progression if I don't know what I have ...I have PR tomorrow my x-ray spirometry test blood test were all done at that hospital where I am have PR do you think maybe it will be identified there exactly what I have got as beyond confused now...I haven't had a CT scan ....I am back to being stressed ...how stupid is that
Good morning Emily61. I know it is very hard but try not to get stressed as it really can affect your condition. You will get all the answers you need when you see the consultant. You have to believe that, and until then focus your energy into what you have and can achieve. Maybe back on the bike? You seemed to have enjoyed that.
I have had COPD for 3 years, never had a blood test, X-ray or scan, and so have to put my faith in my gp. It’s not always easy to do when you feel overwhelmed. But until you get answers it’s all you can do.
Worrying will not change one thing. Harsh to say but true.
Don’t beat yourself up. Baby steps. Every day is an achievement.
Look forward to hearing how you enjoy PR tomorrow.
Take it easy on yeorself.😉
Ok will do
The World Health Organisation definition of COPD is:
‘Chronic obstructive pulmonary disease (COPD) is a lung disease characterized by chronic obstruction of lung airflow that interferes with normal breathing and is not fully reversible. The more familiar terms 'chronic bronchitis' and 'emphysema' are no longer used, but are now included within the COPD diagnosis. COPD is not simply a "smoker's cough" but an under-diagnosed, life-threatening lung disease.’
The key thing to remember is that COPD is not ‘fully reversible’ and by this they mean reversibility to bronchodilators and steroids. Asthma is commonly reversible and if it is then the sufferer would not be labelled as having COPD. Spirometry and reversibility tests provides a clearer picture of the situation. It’s important that this information is known as it can influence treatment. For example, steroids would be less helpful to someone with emphysema and the risks of side effects would possibly be greater than any benefit.
In asthma, overlap with COPD can occur if the sufferer has had severe disease for some time and the inflammation has caused physical changes in the lungs that have led to some degree of permanent obstruction of airway flow. The aim of good asthma treatment is to control the disease so this doesn’t occur.
COPD has always been an umbrella term for different types of lung disease but is often misused and IMHO, not always useful. One example is bronchiectasis where there may be some degree of obstruction in air flow on spirometry but the treatment needs/priorities are sometimes more related to other symptoms and presenting factors rather than the obstruction.
Great explanation. Thank you.
That's useful and thanks for posting it. The other reason I have been given for the copd umbrella term is that the treatments are identical. x
It’s not always that simple and treatment is not always identical. For instance, my OH has asthma and is using a long acting bronchodilator which is not recommended for use in asthma. It is primarily for use in COPD. He also has moderate obstruction and bronchiectasis so can use the inhaler and it is helping. Certain drugs are only used in asthma, not COPD.
Well if copd only includes CB and E the treatments are the same. x
Yes, I can see what you are saying hypercat54. However, the WHO definition of COPD is not confined to emphysema and chronic bronchitis now: 'The more familiar terms 'chronic bronchitis' and 'emphysema' are no longer used'.
Rather than apply the COPD label it is better to use the proper diagnosis/disease in order to give the optimum treatment. For instance, there are people with COPD/emphysema who are being given long term inhaled steroids. If they have been assessed and found not to be reversible to steroids then they won't derive much benefit from them. Treatment might then focus on prescribing the most suitable bronchodilator therapy, pulmonary rehabilitation and perhaps long term oxygen therapy. Conversely, someone with asthma will probably benefit from steroids but if their asthma is triggered by exercise they may struggle with pulmonary rehabilitation.
As a carer, I have seen how detrimental putting the COPD label on people can be. I can remember at least one doctor asking about smoking almost as soon as we walked through the door, just because COPD was on the computer. The person who I care for does not have a smoke-related disease and hasn't smoked for over forty years! It also prevented him from receiving the proper care for asthma/bronchiectasis according to the BTS guidelines. Treating everyone the same is not always helpful to the patient.
Absolutely agree with you about the detrimental effects of the copd label being put on patients or witheld ( as in bronch). This leads to treatments being standard for some conditions and denied to others. We bronchs know that some of us benefit from what are known to be copd or asthma treatments when some of us don’t. I have been constantly denied pulmonary rehab because I have bronch. The ridiculous thing us that the term copd is a political construct. It was first used at a conference in the US in 1964 to describe any disease which caused obstruction. Bronchiectasis was not included because it wasn’t recognised as a bona fide condition in its own right in the US until an English consultant taught them what it was at a conference in Las Vegas in 1986. When I lived there in 1981 I tried to get my abs and was told that ‘there is no such thing as bronchiectasis, just cystic lungs’. How far we have come!
The Blair government instituted a programme for copd in a vote winning exercise ( this has since been very much diluted) but excluded bronch because it wasn’t originally included under the umbrella of obstructive conditions and there not being many of us, they weren’t interested in our votes.
So now we have lots of confusion.
The term COPD should be scrapped and each condition treated properly to its own needs. But that would be too sensible.
I so agree. I find the term COPD unhelpful and agree entirely that a diagnosis of individual diseases affecting lung function should be made. I get so tired if asking my doctor for a diagnosis beyond the global term ...he gets frustrated with me and a) insists that COPD is a diagnosis in itself and b) that my chronic asthma has morphed into COPD. That to me is a confused and confusing perspective. I've also been hospitalised with pneumonia which I feel could have been prevented by my GP. I attended with a mild chest infection and was told there was no infection there and given steroids which of course I now know makes pneumonia worse. I fear most GPs don't understand COPD which is understandable. They focus on smoking which in itself has been shown not to be the only cause. What is less acceptable is their seeming refusal to send you for a COPD consultancy with someone a tad better informed about treatments.
I have been given steriods and antibiotics as part of my rescue pack
Having been a patient for doctor’s exams from first year student to consultant level I am saddened and frightened by the lack of training and knowledge. GPs know so little because they have minimum training and yet are the front line for so many patients. He gets frustrated with your questions because he can’t answer you.
Thanks Littlepom...I'm retired now, but as a lecturer I constantly renewed my knowledge of my subject by attending conferences and researching the most recent research and articles. I think my GP is lazy ...that sounds unkind but it is the truth. I'd change but I've been with the practice for over 30 years and doubt if any other doc will be much better. (My doc at the practice returned). It should be mandatory that GPs renew their knowledge...in my opinion 😆😀😗
To be fair, GPs are overloaded and are not meant to be specialists. I do think that they forget that they are meant to be conduits between patients and the expertise that they need. So I feel that it is up to us to find the right specialist and then insist that the GP refers us and follows their instructions.
Thanks for your response...noticed that my post above said my doctor returned...this should have read, my own doctor retired. I agree that GPs are rarely specialists and that their best role is to refer patients with specific conditions to those who are. However, I frequently feel all at sea. Not knowing where or to whom to turn to is distressing in itself, never mind having to learn how to deal with this hellish condition. This forum really helps. I'm so glad I found it. Thanks again x
I always thought the US was way ahead of other countries with their diagnosis and treatment. I see that I was incorrect as I was diagnosed with Bronchiectasis in 1953, yes 1953!
Snap me too. By bronchogram aged 3. That hospital experience scarred my relationship with medics for life!
I had so many bronchoscopies with all those tubes that with the result I cannot have anything put in my mouth and especially have extreme difficulty when I eventually have to go to the dentist. The doctors in those days have an awful lot to answer to. At least I was a little older, but not much, than you as I was attending medics for years before they performed two lobectomies at age 13, but that is another long story. Rant over!
The doctors were vile and very cruel. After my bronchogram I was made to stand in only my knickers in front of a table full of men in white coats and my xray whilst my mother sat some way away. The doc in the middle pointed to the xray with a disgusted look on his face and then at me. ‘This is you’ he seemed to be shouting at me. I remember feeling terrified and that I was horrible and that it was my fault. This feeling has stayed with me all of my life. Who would do that to a 3 year old girl today!
My mother refused to let them do a lobectomy on me because the damage was in so many places. They discharged me and sent her a nasty letter ( which I have) stating that as she refused this procedure they could do no more for me and that I would not survive my next pneumonia. When we found my miracle doctor 3 years later who started me on basically the same treatment that is standard today he told her that she had saved my life by preserving my lung tissue so that I could exchange gases through it even though it was damaged. I remember him being the first doctor who was kind to me. I started to cry in his office and he told my mother not to chide me as I had been through a lot in my little life. Then - it was on to the tender mercies of the physiotherapists!
You think you can rant!
My thoughts are with you Littlepom. Those people with Bronchiectasis who have been diagnosed in the last twenty/twenty five years really have it easy. They have no idea what the older generation had to put up with when they saw a doctor or went for treatment. I spent most of my young life in hospitals from the age of 7 (diagnosed at 10) until 14. This was in the 1940’s/50’s. It was worse than an orphanage if that is possible. My saving grace was that I was able to read. My mother said I could read at 5. During all those years not one person suggested I open a school book. (I did go on as a mature student for a degree)
When I was 69 I had to go into hospital as a day patient for skin cancer removal. The admitting nurse asked my medical history and when I told her about my lobectomies at age 13 she said “ it must have been very traumatic for you”. She was the very first person to sympathize with me. With that I burst into tears. I often thought I should have had counselling. I never spoke to anyone about bronchiectasis until I joined this forum about four years ago or so.
I did try to speak with my sister once (she has never been sick) and when I was half way through she said “I have a terrible sore finger”. After that I never said anything to anyone. Quite stressful to have to cope with this illness by oneself so this is why I think this forum is a terrific idea. Most people on this site understand what we are all going through which is a very good thing.
So Littlepom I am putting our names forward for Persons of the Year! And shall await my medal! We deserve it.
Gosh your experiences are so similar to mine. Only recently and in response to all of the talk of trauma and mental health issues supposedly suffered by people, I have also wondered if counselling might help me. Is it normal for a 68 year old to still be having flash backs from when she was 3?
We just had to get on with it didn't we. With no sympathy from anyone. However I felt I was told that I was not ill and shouldn' be lazy. Was ridiculed and shamed by games staff - I am sure that you could write the book. I was lucky that my mother refused to let them send me to sunshine school and with all the rigorous self management I did at home I went to Grammar school. I was just always exhausted and felt that obviously I wasn't trying hard enough.
I too went on to get a degree and MA in my forties and life is better now ( for lots of reasons) than it has ever been.
It is so good to speak to another spunky survivor and yes, I agree with you that the support of all of those on this site who are bravely tackling their own mountains is invaluable. They are jewels beyond value.
Sad but ultimately great story. Thank god for competent docs and so sad for you that you have suffered so much. Three cheers for your mum x
Hi patches after reading your comment I still cannot figure what point your trying to make since 1953 is 66 years ago . Where you a child then at the time of diagnosis?
Yes Patches and I were both children at time of diagnosis. I was 3, Patches, 10. That’s a long time to be fighting!
Maybe it is too late now for counseling Littlepom as I feel I am coming to the end of my life. My husband has just been diagnosed with cancer for the third time so that has included rounds and rounds of doctors’ visits, radiotherapy twice five days a week for six weeks plus a mountain of scans and tests. I accompanied him on all his trips to the hospitals and with this was the worry that I may pick up a bug and everyone knows we cannot afford to do this.To cap it all he has dementia as well. He never had a cold in his life, never missed a day at school or a day at work until he got his first cancer eight years ago.My consultant said to me on one occasion that with cancer the people get the flowers and the chocolates and are bad for three or four months and with luck are without problems for the next five or ten years, but for those with chronic illness it is relenless and keeps coming back time after time.(Not in any way to take away how difficult it is for cancer patients who have to go through the trauma).
With Billiejean passing so quickly made me realize it could happen to any of us at any time. I certainly did not expect Billiejean to leave us so quickly as she had said her FV1 was 40%. Sometimes I wonder if it is all worth it.
Maybe I do need counseling after all.
This is my last rant!
Your medal is in the post Littlepom.!
Gosh you certainly have an awful lot on your plate! Living with your husband’s illness as well as your lifetime sentence. I only have to care for myself and there are days.......
I agree about counselling now. We have both lived our lives to the full in spite of the early horrors and I am one who thinks that there can be no good in ripping the plaster off a wound when it is semi healed. Which is why I have never tackled what lurks beneath.
I loved your comment about the reading. I spent many long days in bed because my Mother was at our shop or on the golf course. She used to bring me the max number of books from the library and joy of joys, the Bunty comic arrived on tuesdays. I started school at 5 half a term late because I was ill. I learned to read in a week because I was terrified of the teacher who hit us at the slightest whim and was reading the newspaper fluently by Christmas.
I too was shocked by Billiejean passing. In the 1990s when I was trying to divorce my controlling husband I had to go to a consultant who did not know me, for a report to prove to his legal team that I had a serious condition. Apart from being disgusted at the morality of being asked for this when I had been married 22 years he said that the problem with bronch is that people can just drop off the tree for no apparant reason. I was 42 then. He was a lovely man and is an eminent bronch specialist. So Patches, WE ARE THE CHAMPIONS! No whinging, no panicking, we just keep on keeping on, presuming that we WILL wake up tomorrow.
Much love to you and your husband.
A medal for every breath you have taken!
As Littlepom said below we were both very young children at the time of diagnosis. I am now almost 76 and have fighting Bronchiectasis since I was 7, diagnosed at 10, almost 66 years ago and I have to say I am getting a little tired of it.
Well said. Great posts. Thx.
I have been in hospital with chest infections 4times I also had delirium quite bad I was put on treolay inhaler but I still have to take my blue one (they took my strong ones away ) I’ve been diagnosed with stag 3 copd they sai they said my lungs are damaged in 3 places that’s why I keep steroids & antibiotics other wise my husband would have to call an ambulance.it was quite a shock I didn’t know what copd was I haven’t smoked over thirty years but my birth mother &her mother died of lung cancer I don’t no if there’s any connection &smoked into old age
This is my first time I can’t say I’m right I just have to believe what ime told from Magiemay123
Hi sweetie I think it is an umbrella ☂️ term but that’s what you can ask him am sure he should explain to you . Hope your abit better breathing is easier for you am just going to try any settle to sleep as it’s been 3-30 ish last 3 nights feel drained and hubby has his moaning head on got to get his beauty sleep god help us all.
Breathe easy night Emily your in my prayers xxx
Thank you my breathing is much improved since been give spiriva...God bless you to
Hi Emily, So Glad you are coming to Terms with Nearly Understanding your Condition and not Freaking out as Before. Now you have Learnt More from the Forum, you are armed to ask Your Consultant Questions you have a little more Knowledge of. Good For you Hun. Hope you have a Good session with your Consultant, Write all your questions before hand. Hope to see your post Soon. Gentle Hugs Hun. XXXX
The main thing I want to know is what copd have I got as I now more confused than ever ...I am going to leave it for now try and address it with nurse during PR session tomorrow
Best Place to get your Answers, I also Learned everything at my Rehab Classes, I am also Due to have a Further Course, it will be my 6th Course over the last 4 years. Good Luck Hun. xxx
Hi could I ask what you learnt please
Yes Emily, Explanation for The Term COPD and what it Covers, Breathing techniques on ALL Inhalers. After 1 hour of Gentle/ Sit Down Exercises, there will be 1 hour Talking with Easy Diagrams for you to understand Including those on Oxygen, like me. Tea & Coffee or water, We generally took our own water Bottles. Q & A . The Resp, Nurses are excellent and will help you with any Questions. Enjoy your Rehab Hun. xxxx
Thank you x
Think this season is 1 hour assessment
What a chaotic situation! Even the NHS seems to be vague about the term - 'includes emphysema and chronic bronchitis' .... yes ... and what else then? Hardly surprising that some nurses don't understand and no other COPD sufferers on here seem to be too sure either. Also I don't see BLF folk stepping into the thread to blow away the foggy edges.
The value of the health industry having invented the (relatively recent?) umbrella term seems to be questionable in the extreme.
I am so confused as I had diagnosis over 2 weeks ago no one has said what I actually have reading the thread it is very confusing and I am back to being anxious
The best explanation I ever heard ; COPD can be compared to a dual carriage way going down to one lane, hence blocked and congested whilst bronc. Is more like an open road which is full of potholes, the potholes easily filing with gunk, so much less obstruction but plenty of inflammation and infection.
I have PR at the same hospital test were done do you think they might be able to tell me as the x-ray blood test and spirometry test results were done there
Brilliant description. Thanks.
Hi, it is a confusing term as it is an umbrella diagnosis. The term COPD is not helpful to those of us who have been given it as a diagnosis when what we want and need to know is what is the actual disease we have.
I was given COPD as a diagnosis after having a chest x-ray. It wasn't until almost 3 years later that I had a scan that I finally found out exactly what I have. Emphasima, bronchiectasis and a bit of fibrosis. So along with the asthma I just manage things the best way for me as GPs and their nurse don't have a clue.
Seeing GP today as I've just been diagnosed with gallstones and am wondering what happens now and will use it to raise the issue about the lungs and that "maybe" I should see a bronchiectasis specialist.
Won't hold my breath hahaha as I have a strong suspicion that they can't admit they can't cope and are waiting for me to be admitted as an emergency.
Good luck with your appointment and please let us know how you get on.
And you insist at drs that you see specialist I will not be fobbed off didn't realise there where so much more to copd.
Not ‘maybe’ on the bronch specialist Boudica - INSIST. take a name with you ( look at your nearest big teaching hospital) and don’t take no for an answer. This is about your health not the arrogance and incompetance of your GP.
Do Not Take No For An Answer!
I will I am going to insist on a scan so o am aware of what disease I have got Dr in the morning will suggest a scan to him as someone needs to provide that...I thank you for that
There is no need to be confused or anxious about this. COPD is just a label that describes an impairment of air flow, that’s all. In my view it is better to name your disease/s so you can learn about how it affects your lungs and how to deal with it.
As an example of how obscure this label is, someone with COPD/emphysema might be helped by lung volume reduction surgery. Another person might have the COPD label due obstruction of air flow caused by asthma or bronchiectasis but would certainly not require this treatment. Name your disease and it becomes clearer.
My Dr just said asthma and moderate copd...I agree with you
Exactly that - your diagnosis is asthma. They know you have some impairment of air flow, hence the COPD label but your treatment should be appropriate for the asthma ie steroids, bronchodilators, avoidance of trigger factors.
Thank you as I really was getting confused
I am glad it is a bit clearer. Like you, my My OH has asthma and moderate obstruction (COPD). In practise, this has meant that thankfully he still responds to steroids and bronchodilators but maybe not quite as much as he used to do when it was just asthma. However, it is good that he still feels much better for these drugs. He also has bronchiectasis so needs additional treatment to deal with that. It is the treatment and management of the underlying condition that is important. In your case it is keeping the asthma under control and looking after yourself as best you can.
He said I had over inflated lungs what causes that
Do your best to learn as much as you can about how to keep yourself fit and well. Hopefully this will prevent deterioration and keep you stable. I do hope so. Take care.
Thank you so do I
There are types of emphysema that are stable and non-inflammatory that all the inhalers in the world do not make a difference, simply because there is no inflammation to begin with. But with a diagnosis of COPD you will be given the standard treatment of some kind of inhaled steroid ( quite expensive here in the U.S.) and a rescue inhaler and it will be up to you to really figure out if they help at all or they are just a placebo effect.
I agree about the inhalers. I suspect that many people who have emphysema do not respond well (if at all) to inhaled steroids and yet doctors still prescribe them. It is a waste of money and possibly prevents them from working on a treatment regime that is helpful.
This is the problem with lumping all respiratory conditions together as COPD and treating them as if they were the same. I have lost count of the number of times medical staff have checked OH's oxygen saturation and been dismissive because they were within normal parameters. On many occasions he was feeling so very ill - chest tight and rattling like a steam engine, extremely congested from the inflammation and exhausted from coughing but that didn't seem to concern them.
Hi there are different types of Emphysema some affect the alveolar in the upper lobes known as centrilobular (spelling may be wrong). another is panlobular which affects the base of the lungs . There are other forms also . Point is Emphysema is not limited to only one part of the lung. Also here in USA Yes you can have Emphysema and not have COPD as in many cases of mild centrilobular one may have clinical emphysema ( a CT scan may show this but Spirometry and PFT are above the threshold of diagnosed COPD , sometimes this is referred to as pure Emphysema . I know it’s a bit complicated but I tried my best to explain it . Anyone with a clearer explanation please post . Thank you
Oh dear thank you
No wonder there's so much confusion, when the medical professionals keep telling us different things!
I have emphysema and have always understood the condition came under the COPD umbrella. However I was recently told by a respiratory consultant at the hospital that I have emphysema and COPD. When I queried that with him, he assured me they were two separate conditions. I raised this with a senior respiratory nurse a few days later and she disagreed with what the consultant had said.
I every one hope the summer as bin good to you I want to ask I have copd like lots of you I went to
suffered with copd for a few years what copd was .I myself had to google it and frighten myself to anxiety...
and have no one to talk to it about. Can someone please tell me what it all means in terms of life expectancy...
Start a Community