Hi I've just been diagnosed with COPD... - Lung Conditions C...

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Hi I've just been diagnosed with COPD lung function 78%. I've never smoked, never worked in dusty places.

34 Replies

Had my first ever chest infection this year. Never suffered from a bad chest before so stunned with the news that I have a progressive lung condition. Not on medication but have a blue puffer which I rarely use. Am not overweight. Is COPD emphysema? Is any one else struggling to understand where COPD has come from?

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34 Replies
peege profile image
peege

Hi there, warm welcome to the BLF forum. I'm really sorry you have this news , it's quite hard when you cannot see a reason. Thing is we are all different and react to pollutants etc in different ways - as in some people can smoke into their nineties with no effect. How's that? And some, like you are struck with it for no apparent reason.

Lots of others will come on board to give their views & experiences - hopefully - to help with your understanding.

Honestly, it's not all doom and gloom. With the right medical help and a lot of knowledge on your part you will live a long, healthy and happy. Some people are not diagnosed until they are in an advanced state.

You are lucky (sorry it may not seem so) to have found out now so you can learn to listen to your breathing, learn when you need that blue inhaler to keep your airways open which is so important.

There is so much you can do but I don't want to ramble. Others are better at giving concise advice & information, I will always come back though and say what I've done to help myself - mostly learnt from the wonderful people right here!

GPs don't always know very much about copd. Their respiratory nurses are usually more knowledgable.

Copd is an umbrella term which covers emphysema, chronic bronchitis and asthma (I'm happy to be corrected)...... however, there are loads of other lung issues too though.

Please don't worry too much. If I were you I would want to know what exactly is causing your copd, how did they diagnose it? ...... Have a look in all the BLF information, click above. Also, if you ring them or email they will send you all their information. Call 03000 030 555 after 10 am, mon-fri, they are wonderful.

There is a deficiency Anti-tryp.... (someone will come along in a mo who can spell it & explain it). If we are deficient in it we're susceptible to lung issues, a simple blood test will show.

Perhaps you live somewhere polluted or have a little lung damage from the past ie whooping cough, measles or untreated infections like me.

I suddenly had pneumonia 5 times in less than 18 months. It hit me like a sledgehammer. If only I knew then what I know now the last 4-5 years would have been very different.

Anyway, you're in absolutely the right place. Keep looking in, learn as much as possible, ask as many questions as you like, no judgements here.

I wish you all the very best. Peeg

in reply to peege

Asthma doesn't come under COPD Peeg just the other 2 x

peege profile image
peege in reply to

Thought I read on the BLF info that it does. Must have been imagining it

Colours23 profile image
Colours23 in reply to

I think you may find asthma does come under copd,.latest news.

peege profile image
peege in reply to Colours23

I thought so, thanks. Sure I've seen that in print on the BLF bumf.

Sohara profile image
Sohara

Adeste, which I had time to reply more fully to you, but PLEASE do not panic, you sound to me that you are at a very early stage of COPD, which if you follow the advice from this site, will most probably not affect your life too much...its good in one way you discovered this early , as a lot on here do not find out they have COPD until they are at mod or severe stage. but even then with some life changes they can massively affect the progression of the disease

Suzy6 profile image
Suzy6

Adeste, welcome. you have been given good advise by peeg and Sohara. I wish I had been diagnosed with 78%. I was diagnosed at 32.5%. I had put my symptons down to old age. Take good care.

Thank you so much for your warm welcome and good advice Peeg, Sohara & Suzy6. You're right it is better to know sooner than later & I hadn't really thought about that! Thank you & take care.

Hi adeste and welcome to the site. Its nice to meet you. At 78% you have very mild COPD and I agree that while you are not lucky to have it you certainly are to have been diagnosed so early. Until the criteria was changed a year or so ago anyone over 70% lung function wouldn't have been diagnosed with lung problems. Now that has been increased to 80% and under so you just come into that category. I understand what you say about never smoking etc. but is it possible you suffered passive smoking in the

past? x

in reply to

Thanks coughalot1 for your welcome and words. My dad was a smoker so I would have suffered passive smoking when I was wee. I didn't realise the criteria had changed. Anyway I do feel loads better having had replies from people who clearly know a whole lot more about this than my GP who said there is no treatment for this. We tell people to stop smoking and lose weight but since you don't need to do that just do deep breathing. I really felt I had no control over it! x

Colours23 profile image
Colours23

I've had asthma all my life ,I feel that soap powders ,anything and everything I seemed allergic to...effected my lungs ,more everyday filth around us bad for lungs,bad air. So untreated asthma can lead to copd now,it is not a separate thing,all narrowing of the airways. Cold weather,chemicals, all kinds of strong toxins, my nose is my guide to what may set off an attack,same as with copd, also lots of people get copd and have never smoked. It is a contributor but not essential.

in reply to Colours23

I suppose I've never thought about my airways or even breathing. New era for me now. Like the idea of being guided by smell. Thanks Colours23. x

peege profile image
peege in reply to

When I'm trying to explain to friends/family about why I've changed etc one of the things I say is that you can put all sorts of rubbish through your digestive system, it goes straight through but you can't do that with your lungs.

All the chemicals we use daily have fumes, dust, allergens, mould spores, city pollution etc etc oh diesel fumes are very bad, they accumulate. Then we all react in our different ways. Well, that's my opinion anyway.

Glad you've got some replies. Hopefully you'll get one later from a lovely lady who copies her brilliant words of advice for newbies :)

in reply to peege

Very good point peeg. Thanks again to everyone for advice & morale boosting words. Really appreciate it/ Adeste x

coastal1 profile image
coastal1

Hi adeste , welcome to the forum.

As said above you are at a very mild stage .Most people on here don't get diagnosed until a much later stage and are not even aware ..... as symptoms often don't present until at the moderate or severe stage .

As you don't smoke , are a healthy weight and presumably take some exercise the disease probably won't progress any further . You are likely to remain symptom free and live to a ripe old age.

I smoked for 48 years and was diagnosed last October following frequent chest infections and a persistent cough. My results were 55% . However after quitting smoking I am now more or less symptom free .( keep toucing wood as not everyone is so lucky ) . I think keeping fit is important . I have always led a fairly active lifestyle plenty of walking , gardening , some moderate exercise classes etc . Doctor says my general fitness level is now helping compensate for lack of lung function. Don't get me wrong I'm no Olympic athlete but can walk for 5 miles on the level with no shortage of breath and am able to do most things that other 63 year olds can .

Cheers Coastal ,

in reply to coastal1

Coastal your experience is very encouraging. I'm a walker too, have started yoga classes which I really enjoy and like you enjoy doing the garden. Thank you. with every post I feel cheerier. :)

Puffthemagicdragon profile image
Puffthemagicdragon

Hi adeste. I was diagnosed with very severe emphysema 3 years ago and as far as I know it hasn't got worse. The stage you are at I suspect is mild. As long as you try to avoid anything that can hurt your lungs I reckon you should live to a ripe old age. I do most normal things, only slower.

in reply to Puffthemagicdragon

Hi puff (love your name!) Thanks for your reply and encouragement and glad to hear you've stopped that emphysema in its tracks. Long may it continue. Best wishes Ax

Puffthemagicdragon profile image
Puffthemagicdragon in reply to

Thanks ! :)

Offcut profile image
Offcut

I am 57% upright and 45% when flat. Everyone is so different keep to your healthy lifestyle and you will go on without problems hopefully.

Have you been to hospital for the tardis blow test were you sit in a plastic box and blow up their lilo's? that is more accurate than the spiro at the doctors?

in reply to Offcut

hi offcut wow I've never done the lilo stuff! I need to pursue these tests with the GP. Fibberti has also told me more about the tests. I'm so encouraged by everyones replies. You are all brilliant. Thank you. A x

tigershay1 profile image
tigershay1

Hello adeste and welcome lots of great people on here to support you they were amazing when i first joined . I have chronic bronchitis never smoked but like you parents smoked . Im well in summer then pick up infections which take bit shifting . This one has been my worse todate. Eat well do some exercise use common sense re people with colds ie keep away. I use vicks firstdefence spray when i go out in public or to work i make sure i wash my hands more often and use antibactrrial wipes out and about. I take atrovent and salbutamol inhalers with 2mg steroids for maintenence but hoping to stop steroids in a month or so. Ask away on here lots of great advice xx

in reply to tigershay1

Thanks tigershay for the good advice. Hope your infection has now been bashed! I had my first chest infection at the start of the year. Couldn't believe how awful it was so hope you're on the mend.

Best wishes Adeste

ollidamra profile image
ollidamra

Hello everyone - I am new to this site, and like adeste have been diagnosed with COPD. I am a bit surprised, as I am a lifelong asthmatic, which is now better than ever before. It's also not great for buying travel insurance, or remortgaging my house! I queried this with my doctor, was retested as mild (previously moderate) and he said even if it were to be taken off my record it would show up as removed, which would invalidate insurance!

My question is - how is this different from the asthma which I have had all my life - or is it just a new fad?- I have been through several in the past. Does the GP surgery gain anything from diagnosing all their asthmatics as COPD?

I am impressed with the combined wisdom shown in the posts.

in reply to ollidamra

Hi ollidamra must confess a similar thought on the incentives for copd diagnosis had crossed my mind! Hope the remortgaging works out. I saw a post from someone who had info on travel insurance which might help. The wisdom & the warmth in theses posts is truly heartening. Adeste

Offcut profile image
Offcut in reply to ollidamra

Funny you say that I was in ICU with a severe lung infection 2008 and I was asked time and again had I been in contact with asbestos. I wrongly said no but when I did find out I had for 10 years 2012 no one seems to want to listen anymore or look into it?

Hi fibberti thanks for your reply. I haven't had full tests in a hospital lung function lab. I did the spirometer test at the GP surgery on the wee portable spirometer. I had a chest Xray when I had the chest infection & the chest X ray said there was copd although the blf nurse I spoke to said copd cannot be diagnosed from an xray, especially when you have a chest infection. I haven't had a CT scan either! Thanks for all that info. I've now got loads to ask the GP when I go back. Adeste x

peege profile image
peege in reply to

Hi, how're you doing?

I also wanted a ct scan for a proper diagnosis but had to wait nearly a year to get it via hospital ( consultant said nothing wrong with me)!

If I had my time over I would have got a ct scan privately.

Good luck. P

out-for-lunch profile image
out-for-lunch

Ask your doctor to do a test for A1AD ....... he'll just need a pin-prick of blood to send for analysis.

A1AD (Alpha-1-Antitrypsin Deficiency) is a pretty rare genetically inherited condition which basically buggers up your lungs. The symptoms are the same as if you've lived next to a motorway, been chain-smoking roll-ups for decades & worked in a dusty environment ...... all at the same time.

Apart from a few fags behind the bike-sheds, a few splifs at uni & post-uni backpacking & a few bonfires at home, I've never really smoked, I've led a fairly active lifestyle in a clean outdoor environment. I had no symptoms & knew nothing about lung conditions until my mid-50's. I'm now end-stage COPD .....

For more information click blf.org.uk/conditions/detai...

in reply to out-for-lunch

Thanks for this. I will ask for the blood test. Do your lungs deteriorate at the same rate as the nonA1AD crowd or is the deficiency like go faster stripes? Sorry that sounds flippant. How are your days now?

out-for-lunch profile image
out-for-lunch in reply to

I haven't a clue how my lung deterioration compares with normal COPD ...... I've kept it reasonably static for the past couple of years, mainly through exercising, staying out of the cold & damp & etc.

That said, I do struggle .... 10% lung capacity is somewhat challenging, but hey, I'm still here, I can still smile, there's always someone far worse than me & I still & appreciate & see the funny side of life.

in reply to out-for-lunch

Well said out-for-lunch. Lang mae yer lum reek (as they say north of the border)!

teenieleek profile image
teenieleek in reply to

Smoke from a coal fire would be really bad for you!

Ha ha.

peege profile image
peege

;)

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