What does "end stage COPD" mean?

My husband was diagnosed with end stage copd a while ago. He is on oxygen 24/7 on 6 litres. He also takes warfarin and two weeks ago was diagnosed with an under active thyroid.

A letter has come from the oxygen assessment clinic and they are now calling it severe end stage copd.

I know there is no cure for copd but is there anyone out there who has had a similar diagnosis? I do know what end stage means but try not think about it too much.

Jean

8 Replies
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Hello there Jean. To put it simply it means that hubby is coming to the end of his time. I would strongly advise you to phone the BLF nurses and talk to them. If you click on the red balloon at the top of the page it will give you the phone number. I am sorry I can't help more.

Love from Bobby xxxx

Jean. "End stage" is meaningless and the term is really not supposed to be used anymore. There are 4 stages of COPD according to the Gold Standard and it sounds as if your husband is at stage 4 (like mine), which is very severe COPD. Stage 4 used to be called end stage, but it was so misleading it was dropped. My advice, forget the terminology used. If your husband was truly at the end of his days he would not be able to leave his bed for an oxygen assessment.

Hi Jean, Please ring the BLF helpline (click on the red balloon) - they can give you much defined advise and will know exactly why this means - in addition they will be able to give you some advise and more importantly answer your questions. Take good care and let us know how you get on. Love TADx

Hello Jean. I am end stage COPD and have been for several years, using oxygen 24/7. The diagnosis is misleading. This is why the term is rarely used now, because each persons "end stage" is of such a vastly varying length and life-quality. Continue to help your husband to enjoy his life. I take the view of Que Sera, Sera and refuse to look at my life expectancy based on some outdated statistics. I have a good life. xx

I am also diagnosed as " end stage ". It means nothing. I am on only half L/min oxygen. I still do my part-time job I did before being diagnosed just over 2 years ago. I still drive, go shopping, fix my car, etc. All the normal stuff. I just have to take more time and have more rests. Apart from that I try to live my life as normal as possible. I can still climb the stairs up to my bedroom in one go although I get a bit puffed out but not short of breath. If I get an infection it does slow me down a lot and I try and rest until it clears.

My husband was told he only has a year left to live. He has only just started on oxygen for IPF. Being on this site has told me that people live a lot longer than what they are told. We can only hope they will defy the odds. Hope that helps.

I was reading an article on a website which said there are 5 stages to COPD i'm level 4 and a bit like puffthemagicdragon so you see we are all different.

My medics have not defined what 'stage' I am at. But on what I read I would guess at 3. But what struck me here is what a bizarre and unfeeling decision to call any stage 'END STAGE' - that is a bureaucratic nonsense. From all I have read there is no way of telling how long it will take for COPD to reach a conclusion and the reality I am told is that it is an infection that usually brings death - pneumonia or the 'old mans friend' as it was once called.

So if you are able to be fairly cheerful, can get to the hospital or clinic for check ups I would suggest the best trick is to avoid risk of infection (buses, traims, planes, lifts, crowded places, too many children you don't know, strangers in general closer than nine feet) and use your emergency pack early rather than too late. And enjoy whatever give your pleasure for as long as you can. But do not kiss anyone unless you are 100 per cent sure they are fit (health - not to be kissed, tut ut).

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