Hi I am new here. I struggle to breathe and function daily.
I have had COPD for around 10 years. I am amazed to read some comments here. I understood that the lifespan for a COPD sufferer is 10 to 15 years. I have been on oxygen 24/7 since last December now. The
respiratory nurse told me I am now in the final stages of this disease.
Hi
That's a new one normal its five years, ten to fifteen is a improvement. You will find members who have had the condition twenty or more years and still going. I am unsure what you respitory nurse means by final stages.
I am stage four still going, out every day shopping driving, still very breathless but take my time. Having had several recent appointments with respitory team one due in June, oxygen review in October. No one as every mentioned final stages. Lung function 22%.
I think the condition & associated disability is as varied as the different people who have it. Most of my 14 years I have ranged between moderate & severe. My late mum was severe, she died at 93. My late Grandad suffered with bronchial asthma, he lived until 96. I think it depends on whether people smoke and the number of excaccerbations people have from infections. Also keeping as active as one can. Take care, Margaret x
Hi scorpiolass, my mother was diagnosed as asthmatic and given Ventolin and lived to be 95, my neighbours mother has emphysema from passive smoking and she is 93. Both were as active as they could be. It's 22 years since I was diagnosed with asthma and then COPD.
Welcome to HU, I'm sure you'll get lots of advice and support here.
No matter what stage your illness is at, your progress can't be just categorised to fit in with some arbitrary life expectancy scale. So many people prove those expectations wrong and I hope that you will too. Whatever stage you're at, keep taking your meds and doing what you need to do to keep as infection-free as possible. It is very difficult to cope with extreme sob but again, many people do. I have Bronchiectasis, diagnosed 43 years ago and now very severe and extensive. I hope nobody's waiting for me to pop my clogs cos I'm not planning on doing that any time soon.
Welcome to the forum.
As the others have said the illness is different for all of us, I have severe Emphysema and use oxygen 0.5lt overnight and 3-4lt to walk about I do get very breathless but not when I'm sitting down my lung function is 19%. But I'm different every day.
Kim xxx
I know people been on oxygen 10 plus years ... So ad try not to read to much into stuff as worry STREES can be just as bad as dieases
Doctors and nurses are human and don't possess powers of prophecy.
People so often live way beyond the original prognosis given. Much depends on the type of illness, the amount of self help the person is prepared to do. Taking their medication, eating properly, keeping as active as they possibly can. mentally and if possible, physically. A positive attitude works wonders too.
Hi well so much depends on what stage you are diagnosed at! If you are diagnosed at stage 3 or 4 well 10-15 years might be fairly accurate. But if you were diagnosed at stage 1 or 2 then it probably wouldn't be. I was diagnosed at stage one 6/7 years ago and am still stage 1. I am 62 now. My doctor told me not to worry about it as something else would get me first ie old age. I intend to live a lot longer than 10-15 years and I choose to believe what my doctor tells me rather than listen to scare stories x
I think it is dreadful that a nurse said you were in final stage. How is that supposed to make you feel!!! Every time i speak to a nurse or doctor i get told something different. I would take more notice of advice on here, it is usually sound and from people who live it not just read about it. Ask your gp for an explanation, it cannot help to be spoken to in those terms.
I went for a chek up last year feeling great I have mild copd and my breathing was great then went to c the nurse c said how you getting on I said I feel great c said you have copd I said yes c said you know its going to get worse I said wots your name I came here feeling great and you have put me on a downer am going to report you how dare you say that to me its like some one getting knoked down by a car and saying you know you r going to die with these injuries take no notice wot the profesionels say they know f all
Good reply sheila 1 Kerry .I agree it is important to feel you have hope to live a long life and not to sit about as if life is nearly over . Ask for a full Explanation of what was meant by such a prognosis . Stay positive and hopeful for a better and longer life that some chart may say ! Good luck .
What an idiot telling you something like that !!
Just what it that supposed to mean.
Many members on here have very low readings and still manage to lead a Happy long life.
Keep taking your Meds, keep yourself as fit as possible, avoid mixing with people who have infections , have a positive outlook,and you will probably die of old age.
xx🌷
Hello 4halp2, welcome to the site. I can only agree with others on here. There are no time scales for COPD we are all different. The medics are there to help you manage your illness and keep as well as possible for as long as possible. You need to avoid infections or at least get treatment as soon as possible. Take care and hope to be chatting to you for many years to come.
Hi......welcome..
Some nurses should be taught when to keep their bottom lip buttoned.
This is the modern teaching , when we should all be told the full facts. Except no one knows how long these illnesses can go on for as we are all different. So if what you are doing works for you ....prove that madam wrong..........carry on regardless and ignore her thoughtless words..
Jo.
Hi I have had COPD for over 20 years and am at the severe stage. Your respiratory nurse Should have explained what she meant by final stage. Please can I suggest you go to the web site COPD.net you may need to register with them. Next to this site it is one of the most informative sites on the net. The articles are written by people with our condition. When you are on the site type in the search area "end stage" (top right hand side) there is an amazing article by Mary Ultes which I'm sure will help you. Please take care x
Yes I have read a number of articles on the site. I find them really good. I registered with them and signed up for emails so I get lots of interesting articles. Take care.
Hi 4 halp, it seems you are about the same as me (health wise!) I think you will find that the term final stage only means that the medics have done all they can with the medication available to you, BUT you can go for years on that. I can really empathise with you, everything's such b....y hard work! Just do what you are comfortable with-but slowly-. Right I'm off upstairs for a shower,I find that's the most difficult job of the day. Oh and welcome to HU. Xx
hi sheilab123, I know what you mean about having to do it slowly, showering is a hard job, I have been psyching my self up for it since this morning!! its now 7.50 in the evening and i'm just about to have my shower!!! dirty cow aren't I!!!! hope your ok, love martine xxx
Hi MM, I so agree, it takes longer to phych yourself up for it than do it! Sure your not a dirty cow! Though when I have an infection (which is frequently) I can hardly get off the recliner, never mind making it to the bathroom! Then I am most certainly a dirty cow!! Love S Xx
Some great posts above - welcome to our lovely group 4halp2.
My initial diagnosis was in 1988 although I'd had respiratory problems from birth (I'm an Alpha-1). I'm heading up for my 69th birthday and have a lung function of 33%. You're just a "starter", my dear -- get walking, as much as you can, then a bit more... Keep active and see where it takes you. More to the point -- don't give up!!
Thanks catnip. I am 66 and was born with congenital disorders connected to a hole in the heart. Many years later I was diagnosed with a little known condition called hypermobility. It means that as I got older my muscles and joints don't work properly. The 2 things together leave me barely able to walkl even indoors. I am exhausted all the time.
Definitely do not give up!! Get another opinion from a doctor specializing in COPD. You will be fine. Take care.
Jenny
I was diagnosed mild 4 years ago never smoked had ashma since was 22 am now 60 am tree surgeon still climing trees and working dont think av even got copd but spiromertry says I have been mild for over 4 years now no change I do get a bit tite chested but never get out of breath think that's down to ashma I think positive now and don't take any notice wot the doctors say eat well try to exercise stay away from ciggie smoke
May I ask what caused the moved to oxygen 24/7? I am undergoing a huge exascerbation--I've not had many--and I usually snap back in a few days. This time, my energy has not returned and my meds are not effective. Thanks
Hi missh, I only recall ringing the resp nurse in a panic and she came the next day. I had already been using oxygen tanks indoors occasionally. I remember feeling my lungs like bellows after a short walk to the bathroom.
Well, I am also in the so called 'final stages' of COPD. FEV1 of 15%. Yet I still manage to do stuff, maybe a little slower and drive. I am on oxygen 1- 1.5 litres virtually 24/7. I think your respiratory nurse should think before she voices these negative and unhelpful remarks. Even lung specialists are baffled by COPD so I think each case is individual. Lots of people live for years with this 'final stage' of COPD. Please try to do as much as you can and ignore any negative comments.
Look after yourself.
Malinka
Thankyou everyone for your responses.
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