Longevity with stage 4 copd

[Batbara]

Is there anyone who has stage 4 copd and maintained that stage for many years, or am I looking at a short lifespan.

[Sohara]

Dear Batbara, of course everyone is different, so I can only talk about myself. But I was diagnosed with stage 4 COPD stage 4 Bronchiectasis & stage 3 Emphysema over 10 years ago...having got progressively worse since I was a very young child..had both lower lobes of my lungs removed at age 15...and now I am WELL past retirement age, and still going strong...OK I cant walk fast, or go up very steep hills, and cant walk AND talk up slopes...I am not on oxygen yet either, I am on antibiotics all the time, and get about four or more chest infections every year, each one taking more of my poor lung function away from me.....

But if you do EVERYTHING you can to stop yourself from getting any worse , keep away from colds, EXERCISE EXERCISE EXCERCISE ( I try to do 2 half hour walks every day, but don't always manage it) read all the hints and tips on staying well from this site , there is NO reason that you cannot live many many years yet. I still have a happy and busy life...of course a bout of pneumonia or some other bit of bad luck may shorten any of our lives...but have all your jabs and just enjoy your life ....

Many COPD patients who are stage 4 , live for years and years after they get the dreaded stage 4 diagnosis...ten years ago ...I felt like you when I first saw the 'stage four end stage' on the letter from my consultant.....but I have learned it can stay at stage 4 for a long time, if you try to stay as fit as you can

[yorkie70 in reply to Sohara]

Hi Batbara, Sohara has just about covered it all. Just to give you more insight. I am 72 yrs young, stage IV emphysema officially diagnosed about 14 yrs ago. I do not use oxygen yet. My FEV1 at last test a couple of years ago 19%. I exercise as much as I can walking @5kph, swim, exercise bike and pottering round the garden and house. I hope that this shows you that we are not like a packet of peas with sell by date. Exercise often Breath easy.

PS. My motto is " I have COPD but COPD does not have me".

Cheers Dave. Have a nice day.

[emmo in reply to Sohara]

Inspirational, thank you

[punkyb in reply to Sohara]

AWESOME SOHARA! I agree with you! I work out daily! just did a 6k Saturday! won 4th place!

[Sohara in reply to punkyb]

WOW Amazing PunkyB I cannot even WALK 6K...'might ' do it if I have several long rests, but would not try it really..I have worked my way up to a 2.5 mile walk, but at the moment thats my limit, but you look much younger than me....But I am POSITIVE that if you keep exercising, it delays the progress of lung conditions, and is one of THE most important weapons we have to stay healthy. THat and lung clearance..

WELL DONE PunkyB

[punkyb in reply to Sohara]

I am 66 years how many are you? I go to the gym every day hoping to thwart progression of the disease...I try to go to the zoo and other theme parks with my son and his family once a week too. I go for a pft in a month or two. we shall see. Thanks for the congrats I feel proud. It was hard to do really, but I am happy I did it now that it is over...lol

[Sohara in reply to punkyb]

Quite a bit older than you 😄😄😄you are doing everything you can Punky I am sure you will live a long life

[punkyb in reply to Sohara]

I am hopeful! ! thanks for the confidence!

[gingermusic]

I notice several of you are stating "I am not on oxygen yet" Many of you never will be not all COPD patients are put onto oxygen therapy. I was diagnosed as having COPD back in 1990 at the age of 40 years and it was shortly after that I was also put onto 16 hours a day oxygen as i just did not have sufficient oxygen in my cells to keep me going. About 10 years ago I also started getting more out of breath and was then told to use the oxygen when ever I felt I needed it i.e when out walking, maybe doing certain things indoors etc. I have emphysema and only have 22% lung capacity. So please don't think that oxygen is going to be a next stage for you, as it may be something you will never need. Hope this helps.

[malcolmmason11]

Exercise when you can ,know what you can and can't do above adopt a winning aptitude and think positive treat every day as a bonus and live life to the full.

[Dmactds]

I'm in Georgia, USA, am 74 (in a few weeks) and have emphysema from over 50 years of smoking and Lord only knows what other of my youthful sins. I cannot remember ever having been given a "stage" number of what progress I'm in; I have an FEV of 26.8 which is "severe" as I understand it. That's an improvement from the flat 26 of several months ago at last test.

I was first diagnosed about 4 years ago and am not on oxygen 24/7 as I was in the beginning; now, it's more like a few minutes a week. Over the last 4 years, the less I used oxygen, the less I need it. I'm telling you all of this in detail to let you know that, in my case at least, things are getting better..., not worse.

Make no mistake; I'm not suggesting I'm on my way to a cure, but it ain't as bad as it was, and in this and some other situations/diseases (like presidential elections and political parties), that's about the best we can hope for.

There is no easy answer or prediction. Just put your head down, put your shoulder to the wheel, and.....KEEP ON TRUCKIN' !!!

Duncan

[Beth1949]

By today's standards, stage 4 COPD DOES NOT put you on death row.

As people have mentioned, taking care of yourself and living a healthy lifestyle as possible, you will live a long time.

Also, modern medicine is coming up with more and more ways to keep us healthy.

Just live every day to the fullest, Beth

[Huff_and_Puff]

I'm 61 and was diagnosed with Stage 4 Bronchiectasis 9 years ago, and I've been on oxygen therapy for 8 years. I'm still muddling along, slowly but surely, with a lot of stopping to catch my breath. I just saw my Consultant last Friday, and she seems happy enough with me anyway My current FEV1 is 26%, though my "Lung Age" according to the Spirometry printout is an astonishing 136 years!

I was terrified when I first read a Consultant letter that said "End Stage", but I did a lot of research online, and I soon found out that it isn't a death sentence

[Batbara]

thanks for all of your replies. It's always nice to hear positive responses. I am almost 68. Actually I was diagnosed in my 50's, but didn't understand the progressiveness of this disease. My doctor never sent me to a pulmunologist, and I never looked it up. ( unfortunately). So around age 64 I really started to notice shortness of breath. It was kind of insidious. It just sneaked up on me. Anyway, I was diagnosed with stage 4 copd and asthma. My lung function is around 39%. I do walk often . I strongly believe that is key. I don't know about anyone else but I find that after using the corticosteroids for a while, it doesn't work as well. I used symbicort for almost two years. Then I noticed it wasn't working as well so I switched to Dulera. That seemed to help alot. I think are bodies get use to things and we need to change it up once in awhile.

Again thanks for all your uplifting comments. Much appreciated.

[Sohara]

I feel that there should be a stage 5 & 6 after the stage 4 End stage...which sounds so scary END STAGE ooooer...but from my own experience and reading about other sufferers on this site and other lung sites, there are LOADS of 'end stage' patients , that have been at this dreaded end stage 4 for decades. But in another way, it is a 'wake up' to most people when they get that dreaded stage 4 diagnosis from their consultant ....it certainly makes you WAKE up to the situation in hand, this is it...DO something or not last long...and sites like this one, do help everyone to 'Do something' and they exercise, research supplements, eat healthy etc etc and it makes a MASSIVE difference to their life but more importantly they don't degenerate at the same rate as they were before and they 'stop the rot' so to speak. But for me I feel I have several more stages to go, BRING IT ON

HNY to you all

Love Sohara

[Albertdog]

I understand your concern Barbara - at 85 yrs I have COPD since 2014 - had the usual exhaserbations and hospital admissions - but they can't put me on oxygen as I am a carbon retainer...😥😡😡 instead I have to wear a mask from a machine all night to remove the carbon. Used to hate it at first - but at least I have free movement during the day - without having to carry oxygen bottles around.

Don't know what my future prognosis is - as it is getting to a year since my last hospital visit - and with this darned lockdown haven't seen anyone since ...?

So I must just keep my chin up and do what I can. I am sure everything will be in control for you - and you will have many years to look forward to. That's my motto .. anyway.

[Caspiana in reply to Albertdog]

Hello Albert. You have done really well I think considering you were diagnosed seven years ago. You are right about keeping your chin up. We just have to taking each step at a time . Thus post was written five years ago, but I hope Barbara is still going strong. 😀

Best wishes,

Cas 🍀

[Sohara in reply to Albertdog]

Well I am still at End stage . having been at this stage for over 20 years , I have deteriorated especially in the last 2 years without any medical help , but I am 82 have had Bronchiectasis from birth & of course I now have COPD & Emphysema as well, so I feel I have done really well God Bless our NHS ..not ready to go yet either , so hope none of you worry about these prognosis graphs , the last time a doctor gave me an age was at about 40 yrs when he said I should last until 60 !!