Not many responses to have you remained mild copd for a long time?

[Lemon7]

I recently asked if many people had remained mild copd for a number of years. I has a few kind responses but not many replies. I was hoping a lot of folk would be able to reassure someone like me, newly diagnosed with mild copd that they have remained stable for a long time. I know the things I have to do to help myself, exercise, diet avoid infections etc. But I would love to hear from as many of you who have been mild copd a long time, it would reassure me.

[PMRPete]

Sorry but I missed the post.

I was diagnosed by a nurse as having COPD in 2010, after a considerable amount of argument I was referred to the County respiratory team who disagreed with the diagnosis and put me on Symbicort 400/12 4 inhalations daily.

Now after 8 years I am down to Symbicort 100/6 2 inhalations daily with an addition of 1 inhalation of Oxis 6 in the morning.

I am 86 and can do everything we need, including mowing a large lawn.

My wife is 88 and needs a fair amount of help which I do, we have no additional help, so you see it is not the death penalty which many make it out to be, I remember coming home and crying my eyes out when I read how COPD ends up, best wishes and keep going. Peter

[Lemon7 in reply to PMRPete]

Thank you for replying. Did you definitely have copd or was it changed to asthma or some other condition? Also my fear is not how long I live but more about quality of life and deteriorating rapidly and having severe symptoms. I am not fearful of dying quickly.

[PMRPete in reply to Lemon7]

I have never been given a real answer to that question! I am called each year for a COPD/Asthma review by a couple of nurses.

[Lemon7 in reply to PMRPete]

It may be that you have asthma then and not copd. Asthma is easier to treat. You should ask your nurse. All the best.

[Hidden]

It's possible that you haven't had so many replies because those who are relatively unaffected day-to-day (ie mild) either don't join an online support community or don't come back to post again after the initial shock of diagnosis has worn off. (As someone with mild COPD I'm hoping that's the case anyway)!

[Lemon7 in reply to Hidden]

Thanks for replying. Are you mild copd recently diagnosed or for a long time? I am not fearful of dying quickly, it is not longevity, it is more a fear of deteriorating rapidly and having severe symptoms and poor quality of life that worries me.

[Hidden]

I got told i have emphysema changes just over 2 years ago so not that long

[Lemon7 in reply to Hidden]

Thanks. Did you smoke previously? Have you quit, how long? What stage diagnosed and what stage now etc I am not fearful of dying quickly it is more quality of life and deteriorating rapidly that worries me.

[Hidden in reply to Lemon7]

Just told i have emphysema changes and i think my lung test went up after i stopped smoking by 3% i smoked for 43 plus years and stopped just over 2 years ago. I only found out i got this from a random ct scan looking for something else.

[Lemon7 in reply to Hidden]

Thanks for answering. All the best.

[Lemon7]

Are you mild copd too? What age. Did you smoke? Given up? Etc thanks for answering my questions and all the best.

[O2Trees]

I was diagnosed at moderate Lemon7 so cant give you an answer. Still going strong 19 years after diagnosis though and now at 33%.

[Lemon7 in reply to O2Trees]

Thanks for replying. Is 33% now severe stage? Did you progress from moderate to severe quickly or has it taken 19 years for that? Did you immediately follow all advice to take care of yourself when diagnosed or did you still smoke, not take exercise etc. Hope you don't mind me asking. All the best.

[O2Trees in reply to Lemon7]

No problem with questions. I was diagnosed at moderate in 2000. Current fev1 of 33% is near to stage 4 which starts at 30% (or 29%, not sure which). I'm 73 now and quit smoking age 40, except for very occasional joint in the first few years after quitting, minimal really. But loads of environmental and occupational pollution up to diagnosis as well as having smoked.

I have always exercised and had a good diet but Ive fine-tuned those over the years since dx and have done 2 complete PR courses, plus a few PR sessions after particularly bad hospitalisation last March. I go to a weekly maintenance session run by the NHS physios. It's extra to PR and costs us £4 a session - excellent provision. The courses of course are free.

[Lemon7 in reply to O2Trees]

Thanks for info. 19 years ago diagnosed but how many years till went from moderate into severe category? Good wishes to you.

[O2Trees in reply to Lemon7]

I cant remember to be honest! Sorry. But in general there is no set time for progression. Everyone is different.

[Lemon7]

Think I am only newly diagnosed mild copd at 63 because I gave up smoking 19 years ago. My mum and her sister had emphysema. My worry was medical reports I have read said stopping smoking best to do because it slows rate of loss of lung function slows but it also said inflammation never disappears in copd ex smokers. This makes me worry that I will still decline quickly because I have given up so long ago and yet recently got symptoms which is how I was sent for tests and found out.

[Hidden in reply to Lemon7]

It's hard to hear but no-one can say how quickly any of us will progress- they can only give us averages. From what I've read, a proportion of us will be lucky and progress at the same rate as non-smokers (so effectively remain mild for the rest of our years), some of us will decline rapidly and most of us will be in-between. What everyone's agreed on is that quitting the fags is infinitely better than not quitting so it's great that you got that under your belt 19 years ago! Fingers crossed for all of us.

[peege]

You're asking a lot. No one can predict your future, we're all different and it depends on your previous, present and future lifestyle, where you live, the air you breathe, what other diseases you have if any.

I don't have copd, I have other lung diseases. I made a huge life change in moving out of a green, leafy area of London and it's improved my lung health.

It's like asking how long is a piece of string 😳

[Lemon7 in reply to peege]

I understand. Thanks anyway.

[hypercat54]

Lemon no one can reassure you that you aren't going to progress very quickly and end up as very severe in a few years! It's like asking how long is a piece of string! All we can say is that the odds are very much against it and the vast majority of mild/moderate cases die with copd rather than from it. That is statistical fact.

You could get run over by a bus tomorrow, or die of a massive heart attack but again that's very unlikely and no one can accurately predict the future. As many of us have said before most people who pass from it aren't diagnosed when still mild and many not until they are severe or very severe. That is a totally different scenario to your case and mine (still mild after 11 years diagnosis as I have said before). I agree that most mild cases don't either use an online site or not much and you appear to be panicked hearing from those who are much more severe.

Please don't spend the rest of your life worrying about this and get on and live your life. x

[Lemon7 in reply to hypercat54]

I am not afraid of it being a death sentence. I understand I won't die tomorrow. I am more bothered about quality of life, not longevity. That's why I want to hear from folk like yourself who stayed mild a long time. That would encourage me to be optimistic that I may not progress rapidly, that a lot of people don't progress rapidly.

[hypercat54 in reply to Lemon7]

Well I did reply on your last post and so did 4/5 others who are also mild. x

[Spacecat1]

Hi. I was diagnosed inv2008 at the age of 48. Then I was mild. Able to work. I was a childminder so always on the go. Never had to go into hospital occasional chest infection. And I started losing weight I went down to 6st. 2018 was not a good year after the Christmas I seemed to get chest everything month. My gp sent me for chest x rays and a scan which showed my copd was getting worse. The hospital sorted me out got my appetite back. I was in for 10 days. But had a set back. Ended back in hospital but luckily they were able to change my antibiotics and they worked back home after 2 days. My problem is I retain to much CO2. So have to wear a mask in bed. Which can be a bit noisy but got used to it. I just get occasional nudge of hubby when its noisy. I do have bad days like damp weather does not suit me. I do have to use a wheelchair as walking some days can be hard and getting up stairs. But I'm happy do my breathing exercises etc. Got my rescue pack. Got the go to change antibiotics which help. Best wishes

[Lemon7 in reply to Spacecat1]

Best wishes to you.

[Lemon7]

Yes. Could be right. Thanks

[Lemon7]

Thanks. Good wishes to you

[music]

Very true Redsox and some of the answer to the questions on this site are always a interesting and sometimes helpful read for me.

Best wishes

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