British Lung Foundation
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how can they say its mild COPD

HI all i have been just been informed by an unsigned letter that i have mild copd (smoking related) but no one has asked how its affecting my life . i wake up struggling to breath for over two years now and it was only picked up by the consultant when i had sleep apna diagnoses and had a breathing test i am frustrated i cant do the normal jobs around the house or walk without getting breathless.i take my medications but getting frustrated

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The judgement would be based upon the results of the breathing tests.

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Hello ianmac2 . I am sorry you are struggling. It can be incredibly frustrating to walk a few feet and have to fight to breathe. I wonder if you have ever been referred to pulmonary rehabilitation? It's very helpful and there are others like us who have similar issues.

Best wishes to you.

Cas xx 🙋🐕

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Pulmonary rehabilitation worked wonders for me. I went from not being able to walk upstairs without gasping for breath to being able to get upstairs without any problems. I feel like I have my life back.

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Hi, I am with Cas totally. Get referred to Pulminary Rehab course (like my Mum wasn’t) and learn about all the ways to manage COPD and how it eventually can progress and what can be done to arrest the progression as much as possible. And read posts here because there is a huge resource of good people who often know more than the GPs they encounter!

All the best, Phil

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I could not agree with u more Phil. The pulmonary rehab has helped me no end. I was diagnosed in June 17 and went to rehab for 6 weeks on NHS and have been going once a week since on maintenance, which is the follow up and I have to pay for, it is really worth it, I would recommend it to everyone. They asked me to do a talk to the new people who come every 6 weeks. I enjoy that and the people enjoy it as it I coming from someone who is in the same boat as they are. Well worth the time. Good luck to u and everyone in the group. 👍🤓

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Yet another person who has been given a COPD diagnosis and then left to fend for themselves without any information whatsoever.

Ring the BLF and ask for a passport, this is supposed to ensure that you get the correct information and treatment from the clueless NHS '' professionals''

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Ain’t that the truth?

Left to fend for yourself.

Awful

Phil

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Hi Ianmac2, sorry you are struggling. Unfortunately in England we are often not told what stage COPD is at . But I presume that the staging is based on how badly your lungs are damaged not on how badly it effects your daily living. I recall being told my lung function was so good I could not possibly have COPD, but my scans ect tell a different story. However to get back to your problems, the effects on daily living are often far worse than the diagnosises suggest or the stagings. Pulmonary exercises can improve breathing capacity as well as your emotional wellbeing. Talking to others can help too. Keeping weight down helps breathing too. I walk at a slower pace and do things in small spates, worth a try as is pulmonary rehab.This is not just a self inflicted , smoking related illness, there are other things besides cigarettes that can cause it, but cigarettes are one of the main causes. The letters wording seems a bit opinionated. It should not be citeing a cause. If you are wantiing to discuss effects on daily living then maybe contacting social services for an assessment of need for care might be of help. This can be done by phone or online. Or maybe contact BLFs helpline, they are open today. Good luck hope to speak again soon,take care.

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I used to really seek a quantitative measure about what stage my Mums COPD was at and read about the various scales such as the BODE or GOLD and which markers Mum was hitting in these. I wanted it to be easier to understand.

I eventually came to the conclusion that it’s irrelevant really because COPD affects everyone differently and in so many different ways it is as much a case of judging for oneself how you are day to day than establishing whether you are at stage 1 BODE or GOLD or whatever else.

I think you have to measure your health holistically and manage it accordingly.

Also, I have read many peoples understandably bad reactions to being told they are at ‘end stage’ which sounds simply awful whereas in fact many people seem to have existed in ‘end stage’ for many many years.

Regards

Phil

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I'm starting to believe that each stage of copd has stages to and were just being given the 4 to be diagnosed with...just a thought

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I think that it is the result of the need we have to quantify everything and you are right.

But like research, for example, there is quantitative which I suppose is easier to understand; A + B =C for example;

Or qualitative which is based on the whole picture and a lot less straight forward; A + B may equal C if it’s not raining but may equal D because its dusty and I am feeling depressed even though my sats are 92% but tomorrow it may equal A because I am feeling good.

I read a BLF booklet and it said take each day as it comes and with my Mum that’s what we try to do.

If that makes sense there?

Phil

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Yes it has and from what I'm going through each stage has been has written what to expect has been accurate ,I think it is our own outlook that decides how it will effect our life we are all so different xx

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@i had the same for about 4 year i hope you fell a bit better soon

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One of the unanswerable debates with COPD is how much of breathlessness is due to actual physical problem, and how much is due to stress, anxiety magnifying it. We all do that to some degree and it's impossible to quantify, all we know is the breathlessness we suffer. So relax, they glibly say. The next impossible question is how do you "do" relaxation!

you say you take all your medication, and I'm not doubting you at all, but I do wonder what your "professionals" have prescribed for you. I was first diagnosed with COPD in mid -90s (year not my age, I'd have been mid 40s. Gosh, unbelievable that!) AFAIR all the medication I had, or needed, was an inhaler. The only breathlessness I had was if I walked up s hill, ran upstairs, things like that. That was mild. But everyone is different, how the disease starts, location, medication suitable. You cannot take my experience as being applicable to anyone else.

But i do have serious doubts about the knowledge, competence etc of some healthcare professionals and the diagnoses they conjure up, medication they prescribe. Getting a good one is not always easy.

I'm just realising how much my gp for several years, and apparently specialist in respiratory diseases, how much she prescribed that was a quick fix but made permanent - and totally unnecessary. And were in fact making me feel ill all day. Odd how, when I phoned for an appointment a week after seeing her, I was told she had left - not only the surgery but also the country.

But I ramble, sorry.

Definitely get yourself on the Pulmonary Rehab course. It's a mix of exercise and education - govt funded with the specific aim of keeping patients better able to look after themselves and out of hospital. So they make sure it works!

And apart from anything else, the team running it have a bit of clout. If they feel you need something they cab refer you or at least make strong noises in the right direction to get you noticed by higher ups.

hope this helps.

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So true Anxiety becomes life with this disease but they also forget to mention that most off the meds we have to take rises our anxiety ,x

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very true, and some I'm on affect breathing adversely.

when you get ANY new med read the instructions for it thoroughly for a) interaction with other medication you're on and b) for side effects.

I used to take it that as it had been prescribed by a "trusted, qualified Health Care Professional" that these things would have been checked. Not so. Now I query everything. Often it's a compromise, balancing a benefit from one drug against a minor negative from another. Sometimes the HCP had not noticed the unsuitability, finds a better alternative.

take care - in every sense!

Offy

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You have lots of advice, Ianmac2, about pulmonary rehab etc which I hope you will follow up.

But regarding the "mild" label, this as stated above refers only to the result of your FEV1 spirometry test. This is used to 'stage' copd and is the volume of air you can expel in one second compared to what is predicted someone of your height, gender and age who is well.

There is huge variation between how people's condition affects them at the different stages. Occasionally people who are at the mild stage, Stage 1, have to go on supplemental oxygen, while some who are stage 4, very severe, are still going to work and out there living a life (pretty much what Phil says above). It's impossible to over-emphasise how different we all are and we need to be proactive and demand the help we need. Do call the BLF helpline (03000 030 555 office hours) and talk your situation through with their nurses. Best wishes.

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Its a funny disease when I was at mild stage it really didn't bother me just more annoying has I coughed a lot with mine ,But I'm severe now and I have become more housebound and wish I hadn't been in denial please listen and do has they say has apparently you can lead a long normal life if under control but it does affect us all different I wish you all the luck and best wishes xx

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I would go back to your GP Ianmac2 . Like you I was told I had mild/moderate copd & given an inhaler, it didn't help. Went back to GP & was given another it did help however I still felt I could feel better, so went back & now have the right inhalers :) I bought a Fitbit & started walking, lost weight & now feel my breathing is so much better. Maybe a change of inhaler is what you need, you aren't losing anything by asking, take care

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I sorry that you were informed by unsigned letter that you gave COPD Diagnosisis. That is really unacceptable and unprofessional imho!

However, all those people who have suggested that you have been left to ‘fend for yourself’ have actually got it right sort of!

I have had COPD for at least 14 years maybe longer..I can’t tell you what educating myself ‘fending for myself’ about this condition has done for me!!!

I am more independent and practice good if not better self care than if I had to rely on the fabulous NHS staff, with whom I have a great relationship without being dependent on them.

There is also a great Facebook page too. COPD UK...hugely supportive.

So I would recommend the following :

Take care of yourself by:

Eating super healthy

Regular exercise ( request a referral to Pulmonary Rehab to learn how )

Take medication as prescribed

Keep hydrated 2 litres of fluids a day

Learn to pace yourself- activity and rest to balance out

Learn Diaphragmatic breathing..

Dig into COPD, Exercises, Inhaler technique and more on YouTube- there is so much there to benefit from.

Join the COPD UK Facebook page if you live in the UK.

Keep asking questions here.

Keep well and happy.

Pp

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How would you describe "super healthy" food..if it is organic etc then forget it..my benefits barely cover the egg beans on toast that I live on 😢. Just curious to know if different foods would in fact help in any way ??

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Hi there, eggs and beans...preferably reduced sugar beans are great !

Sugar in our diet really drives inflammation though..

I have a low carb diet with lots of fresh vegetables and fruit.Plenty of water

I don’t eat meat but do eat fish, and often use lentils and cheeses in my food.

That is what I mean by super healthy food, fresh as possible and by and large low carb and unprocessed.

Hope this helps ?

Pp

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If you have multi conditions it becomes a nightmare as they will try and pass it on to the other condition if they do not know how to fix it. One of my GP's blamed most of my problems on my heart conditions. It was not until a Consultant from one of my A&E admission explained that my lungs are crap and accept that he has more then one problem in a letter to my practice.

Be Well

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ianmac2

Know how you feel but if you do have COPD you must learn to pace yourself, don't take on too much, take longer to do things. It's a massive change to your life but go with it don't fight it. There are treatments but you do need to speak with your GP or hospital consultant as you need a referral from one or other. Don't be told there is nothing that can be done. Use your frustrations to find out more about treatments of which there are many depending on age and fitness.

IKeith

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Exercise. Treadmill it everyday 10 minutes at a time several times a day. Get a grip on your COPD now or Lose Yourself to suffering. You are responsible for yourself do everything it takes to get yourself well. The medications are awesome but that's only one third of the story. If you are sedenary get up get up now. Do whatever it takes to live well for decades more

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Absolutely agree, get your meds sorted & then get exercising! I got my meds sorted then my daughter bought me a Fitbit...I thought I was an active person until I got this & found out I was only doing 8,000 steps a day. Now I do 15,000, my breathing is great,.... yes , I have my days however instead of reaching for the blue inhaler I walk/jog on the spot & it moves the "cobwebs" & I can breathe. We set up a facebook group for people who have copd & have a fitbit, we set challenges & encourage each other to move.|We are a broad band, some of us are severe, some of us are mild, however we just offer encouragement to move whatever your stage, join us if you have a fitbit :) facebook.com/groups/1587237...

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i keep active daily but its hard when i use to walk 14 miles a day 2 years ago and now struggle to walk to the end of the driveway getting breathless, i get there its my target

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Annoying isnt it when ppl say get up get exercising....jog on the spot 🤤 I would need a paramedic at the side of me lol. We aren't all the same, do what you can ianmac2

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ya i sure do try thanks alvorite

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well pip assessment tomorrow not looking forward to it got to be there for 8.15 am good job im awake for 5 30am

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well it seems u r on the ball about copd i am mild after 2 yr diagnosis i do cardio mostly i do 5 miles most days on elliptical bike and some tread mill and still walk a mile or more on track at the y /gym so i hope i can maintain this for along time you seem to know alot will check in if any new symptoms dont really have any yet have a nice day and stay well

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