Stages ?

[Luckyring199]

What is the definition line between 'severe' and 'end stage' COPD anyone please?

[Hidden]

Hello, and a warm welcome to the site

Sorry I do not know, although I have moderate copd, but I'll be interested to read what others have to say.

[butterfly31851]

You can google COPD stages, but to be honest I think that sometimes google can be a pretty dangerous thing. You can start with a mild headache and a few clicks later you are dead!

I think you know in yourself when things change - you cannot cure COPD but you can help to slow down the process with diet & exercise. Its true what they say, "if you don't use it, then you lose it"

There are so many people on this forum (who have been on this forum for a long time) who will always encourage you through the low days and laugh along with you on the fun days. I am sure most sufferers can give you advice that has worked for them, but different this work for different people.

One thing is for certain though - the main helper in all this horrible disease is keeping a positive attitude- COPD loves negativity - remember, smile & the world smiles with you.

My best wishes to you.

Jean x

[Toci]

Hi, as far as I can see, stage 4, very severe and end-stage are interchangeable and all mean the same thing.

•Stage 1, or mild COPD, happens when your FEV1 is equal to or greater than 80 percent. This can be with or without chronic symptoms, such as excess sputum, noticeable shortness of breath with exertion, and chronic cough.

•Stage 2, or moderate COPD, happens when your FEV1 is between 50 and 79 percent. This can be with or without chronic symptoms.

•Stage 3, or severe COPD, happens when your FEV1 is between 30 to 49 percent. This can be with or without chronic symptoms.

•Stage 4, or very severe COPD, happens when your FEV1 is less than 30 percent. This is also known as end-stage COPD.

healthline.com/health/copd/...

However, end-stage is not a helpful definition, as I have been 'end-stage' for the last 8 years!

[Dillyjo in reply to Toci]

Hi, what does fev1 mean .? I went for a pr assessment yesterday, it was only then I found out that my Copd was at severe stage . I've learned more from you guys in the two days I've been on here and the 2hrs with the pr team yesterday than I've learned from my gp in the 18 months of being diagnosed xx so glad I found you lovely people x

[butterfly31851 in reply to Dillyjo]

we aim to please + many of us have already been to battle with the G.P.'s

xx

[Toci in reply to Dillyjo]

FEV1 is the volume of air (as a percentage) that you can force out in the first second when you do the long exhale with full lungs for spirometry. The higher the number the better.

[Sohara]

I have been at severe stage 3/4. For at least the last 7 yrs perhaps longer. I have had bronchiectasis since a baby. And in later years also now have COPD & emphysema

For several decades before this last stage I must have been about a stage 3 patient as my readings have always been awful but they never used to tell you things until lately.

But I am now well past retirement age but still live a VERY full & active ( albeit it very restricted activity) life. Once I got the 'stage 3/4 ' diagnosis I have REALLY tried hard to not get any worse, with great success I think. Not sure if I have managed to get back to just being a stage 3. But I myself KNOW things have not got worse. Exercise which for me means walking ( cannot do anything else too SOB). Being a key factor I think. Also improving my immunity and all the other things promoted on sites like this one.

So even when the dreaded 'end stage' number does appear on your results. It does NOT mean that you are going to die soon. I fully intend to go on many many more years yet. Even though my bronch means that I will get chest infections which will damage my lungs every time I get one. It's been nearly 10 years for me now at stage 3/4. I feel sure I have another 10 years at least in me

[Watfordgirl]

Hello and welcome here. You've had some great answers and there's lots of positive thinking. I'm not going to add anything more. Be well. Sue x

[Luckyring199]

Thanks everyone...think I'm hovering between 3/4 but have recently had more exacerbations needing antibiotics but as I also suffer from schizo affective disorder with social anxiety and agoraphobia I don't see many people except the paramedics when they have to come. That should be less now that I have my own nebuliser.

I have the alpha1 antitrypsin deficiency gene so began to suffer quite young but feel like I've lived a life and a half already...thank goodness I made the most of my youth! I certainly don't feel deprived of anything except a peaceful nights sleep without waking up in a panic about what to take first depending on how my breathing is.

Hope everyone has as good a bank holiday weekend as their situations allow and most of all keep smiling. 😄

[Sheilab123]

Hi Lucky as I understand it (I am end stage, FEV 20%) it means that you are on all available treatments currently, so there is nothing they can give you to help further. But there are new meds coming out all the time, so we live in hope! I have a fairly good quality of life, just in the slow lane! Hope you have as well. Take care xx

[butterfly31851 in reply to Sheilab123]

Hi Sheilab123,

Yes, life in the slow lane - remember the tortise & the hare story - I used to be the hare!

Acceptance is the difficult one for me.

have a good weekend. #Jean xx

[Luckyring199]

I try to Shiela but because of all the meds given for my mental health too I am constantly frustrated by new meds given that work and then get removed because they're not cost effective etc.

This doesn't work with that, you can't give B with C etc. and now my liver has joined in the force and is spewing out ALT enzymes at double the normal rate plus my blood potassium rates are raised!

It does make me wonder exactly what it does take to get off this planet...not that I'm eager to!

😄

[Luckyring199 in reply to Luckyring199]

Thought I'd add a little to this in that looking at the tortoise and the hare...the hare has a fast but very short life but the turtle (bless Clyde if you watch Elementary - if you don't you should...it's brill) lives for 150+ years!

WTG - Jonny Lee Miller...better than an Eton Mess! (Voted sexiest man alive for 3 yrs)

😉👌

[squady in reply to Luckyring199]

give me the eton mess for brecky dinner supper tv time

[tamariki]

It is not PC to use the term "End Stage". They use the GOLD standard "Stage 4 COPD" instead.

[Luckyring199 in reply to tamariki]

Wat on earth is PC except wat I'm on now? Does that mean 'ethical'?

Is death itself also a banned word....surely something that should be discussed in advance!

[tamariki in reply to Luckyring199]

I suppose it is the same as no-one using the term, "So and so has died". It is preferable to say "So and so has passed away, or passed on".

[squady in reply to Luckyring199]

good for you I think they mean par say, I'm with you we are all walking dead ive just sorted my cremation but that don't mean I will not fight copd and all the rest I think not talking about it makes it harder when you have to

[Luckyring199 in reply to squady]

Thnx 4 the support. I get sick to death of acronyms which incidentally in this case my hubby says prob means Proffessional Conduct.

I've recently had a DNR put on my medical records as I'd be pretty p***ed off if they rescusitated me with all that's wrong with me only to add 'several broken ribs' into the bargain!

Sometimes wish I had been born/lived in Holland or Belgium where you have the choice as to wen you've had enough.

Nevertheless I carry on, smiling whenever I can, cracking a joke here and there but existence is pretty basic and sum days too darn long!

[squady in reply to Luckyring199]

I think you will find they do this automatically in a and e. i took two friends to a and e for copd and the red forms were put in their folders you have the right to have them removed

I think you are right that is why I never asked for mine to be removed

[Greatbanks in reply to squady]

Are you saying A&E are automatically putting DNR on people with COPD ? Yes I'd prefer DNR further along with COPD. But not yet do they even tell you this ? It's my right to choose not nhs manager trying save money a little shocked ! Admittedly the last infection sitting on edge of bed gasping to breathe did think carnt take much more taken months to pickup a little , but I'm alive kicking fighting back not ready for wooden box lol there are lows and highs but feel we should make that decision our selves not by others . Yes when things get a lot worse I would welcome DNR now it worries me that if I voice yes to it they wud not help here and now ?? Unnerved me a little . Any thoughts anyone how to rectify any misunderstanding with hospital if in there . Not wanting to bring anyone down by this post I just want facts sorting or be to worried go hospital for treatment in future ?

[Luckyring199 in reply to Greatbanks]

Hi,

I admit that it surprised me a little.

Perhaps have a word with your GP/Consultant that you've heard this and ask for their opinion/s if it really worries you.

[squady in reply to Greatbanks]

in my own case when I was diagnosed with copd I asked the specialist what the score was ,he said two years max if drugs don't contain it, but my friends did not know I spotted the red cards ,when I visited one of then there was another lady who did not know about her card,my friends mother was on end of life medication and one turned up in her folder

[squady in reply to Greatbanks]

its me again,when you agreed to dnr did they explain it if I was you I would withdraw it by sending the hospital a letter,

[Luckyring199 in reply to squady]

Hi again,

In my case I actually requested that it be put on there and am thinking of buying one of the silicone armbands with it on to wear as well just in case they don't read my notes. But in the cases that you were talking about earlier where you'd seen them and the patient didn't know I think that it is really bad practice and should have been discussed with them beforehand unless there was multiple organ failure and/or a failure of the patient to understand in which case I would expect them to discuss it with the next of kin.

Let's face it, there are many people suffering with very little quality of life and if they had been a dog or a cat (for instance) the owner would be taken to court for bad/poor treatment of the animal and probably fined and not allowed to keep another in the future.

I really can't understand the big deal about it being any difference with a human except that we seem to be treated more inhumanely than animals.

Can't understand why we can't have the choice to end our own life with some degree of dignity and least possible suffering without a doctor or whoever being accused of coercing the person into it for foul and/or fanatical gain rather than having to resort to hanging self from a rope, taking OD and praying that you've taken enough, walking into the sea, under a train/bus etc.

Where we live on the coast is a lovely place but this year there have been at least 3 suicides where people just walked out to sea knowing where the strongest tides were, causing the family and general public distress and using up vital air/sea rescue resources.

As you have probably gathered by now I am strongly in favour of dignified legalised suicide.

[squady in reply to Luckyring199]

hi, you are right they are taking it for granted and not informing people they are not gods and we should be able to snuff it with dignity I used to work as hospital security and the stuff ive seen has shocked me to my heart, especially with end stage copd but being a catholic cant take the easy route not that ending life is easy

hope things go better for you

[Luckyring199 in reply to Luckyring199]

I'm far too much of a coward now to try and end it myself that I'd mess it all up and end up still half alive but in a far, far worse state.

I think that anyone that does it has got a lot of guts or in the case of famous people a lot of money and influence and I applaud them if that's how they feel.

I made a superb attempt in my early teens but didn't think it through too well and someone found me too soon and I ended up in A&E having my stomach pumped and woke up with a very sore throat the morning after.

Unfortunately barbiturates aren't easy to get hold of any longer which was the route I'd used then.

I think if I was really, really desperate I'd break into a vets and grab an armful of 'green goddess'!

[squady in reply to tamariki]

a rose by any other name comes to mind a spade is a spade no matter what you call it

[Luckyring199 in reply to squady]

Especially if you're playing poker! lol

[squady]

I prefer Russian roulette could be mind blowing

[Nottobad]

I read some ware that they were stopping referring people as end stage because people are living longer. I think you can only get a DNR with your permition and they only give them out when all your organ are failing witch is what happend to my husband. If anyone asked me if I wanted a DNR I would say no I am a the severe stage x

[Luckyring199 in reply to Nottobad]

So basically you're telling me that I must therefore be coming to the end of my natural journey anyway then? Or have I missed something along the way?

[Nottobad in reply to Luckyring199]

Sorry I must have miss understood what you are saying.

[squady in reply to Luckyring199]

its me again how many times have they put you in hospital for your problems, the end stage ive seen were in and out within days I sense you have a lot more fight in you

[Luckyring199 in reply to squady]

Never...they wanted to take me but I refused twice last year and now they don't ask...I'm staying home to the end!

[squady in reply to Luckyring199]

is that wise or you being stubborn ,you could get better quicker after a few days in hospital

I cant preach I refused once but I just sensed it would be a one way trip If.I agreed my doctor called in to see me in the morning

[Luckyring199 in reply to squady]

I spent 3 months in a locked psychiatric ward whilst having ECT 3 times a week. I swore they'd never get me in one again, psychiatric or otherwise!

Maybe that is stubborn but I feel safer at home.

[squady in reply to Luckyring199]

I have to admit ,i was night security in the basingstocke psychiatric hospital I can understand you feeling safer staying out not the best nhs run hospitals and I'm not impressed with heart clinics just be a bit carefull no hat is not being stuborn,i got to know an inmate who thought he could fly he tried it from a car park and landed feet first thanks for the chat time for my night meds and ventalin

[Nottobad in reply to Luckyring199]

The only time I refused to go to hospital was because they wanted me to go on a nebuliser as I have one in the house and that was all I was having to go for. Didn't need anything else so there was no point going. X

[squady in reply to Nottobad]

what was the idea of that,i had to go and collect a nebuliser ,but it was a pain for holidays out camping and fishing I'm on it four times a day

[squady in reply to Nottobad]

when my friend was sent to hospital last year as her sats were very low and the doctor thought she could hear pneumonia on one lung. the a and e gave her all the tests including a scan and came back that both lungs were infected and she .her condition was so serious that they put on a dnr and told her it had to be, two months prior to this she had one put into her documents by the doctors and they just left it .i came back from getting a drink and spotted the red form amongst all the white the ward doctors said they did not know why it was put in the notes ,ive seen end stage in several hospitals and I don't fancy ending up like that god spare me