Hello everyone,I have a copd Question. - Lung Conditions C...

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Hello everyone,I have a copd Question.

Marc1965 profile image
27 Replies

I googled this question but I could not get a clear answer.Do all copd patients simply progress from stage 1 to stage 4 then die.

Obviously some people may die of something else,or have a transplant.

But can the progress just be very slow and you never get to stage 4.

Sorry for my ignorance but it seems wiser to ask on here than read random google views.

Thank you.

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Marc1965 profile image
Marc1965
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27 Replies
sassy59 profile image
sassy59

Hi Marc, COPD is a progressive illness so will get worse over time but that time can be many years. Keeping as well as you can certainly helps. Pete was diagnosed in 2010 and has other health issues too but at 73 he’s still here. Good idea not to Google and we all die of something eventually. We have a member with COPD who’s 93.

Take good care of yourself. Xxx

Superfly1975 profile image
Superfly1975

I was diagnosed with mild COPD 10 years ago at the age of 60, although the disease has progressed it has done so slowly, I have now also developed underlying asthma but I can still walk for miles and climb the fells in the Lake District, hope that goes someways in allaying your fears.

PaulineHM profile image
PaulineHM

Hello,

There is lots we can do to slow the progression of the condition down.

One of the best things to do is exercise, this helps in so many ways. Another is to reduce inflammation, which isn’t just in the lungs, it pervades the body. So lots of good food, Mediterranean style diet with antioxidants, and of course medication. Keep healthy through the winter. Learn about managing flare ups. Do you have a care plan ?

Education about good self care and all COPD related care will help you too. New research into helpful behaviours happens all the time.

Join an online COPD support group perhaps with Asthma Lung UK. Or join a local face to face support group.

My diagnosis was 22 years ago. Still living independently, enjoy my house and garden. Life can be good.

Go well

Pauline

Bevvy profile image
Bevvy

It is said that more people die WITH COPD than FROM COPD! There is no reason that you won’t live a long and happy life. Think of having had a warning and act accordingly. Eat as healthily as possible. Try to avoid catching colds and flu - these can take their toll. Take any medication prescribed and most importantly exercise as much as possible. This can be anything from going for a walk to more arduous activity.

Progression can be incredibly slow and it’s by keeping as well as possible that you can limit its progression. What I am saying is that it’s not a death sentence- which Dr Google suggests it is!

Speak to you gp and ask for a referral to pulmonary rehab. This is a course that teaches you how to exercise safely plus how to live as well as possible. Gives you much information about COPD that I think you will find helpful.

Karenanne61 profile image
Karenanne61 in reply toBevvy

I have also been on other courses run by a local surgery and our hospice, they were very helpful. Our local hospice also runs a 'living well' programme which I attend once a week.

Alberta56 profile image
Alberta56

Don't worry too much about stages. Some people on this forum seem to do remarkably well when theoretically they shouldn't. Is it luck of the draw or attitude of mind or something else? Just try to be as active as you can.

Ergendl profile image
Ergendl

My diagnosis in 2015 was moderate COPD with asthma overlap. Last spirometry before covid stopped them, showed mild COPD, in the bottom of the normal range. I followed all the advice on here about healthy eating, exercise, etc, and also run a weekly singing for lung health group.

Yes, my lung function is declining as I get older, but the decline is in keeping with my age. By doing all I do, my lung condition is not limiting me as much as my other health conditions.

kev60 profile image
kev60

Hi again, to be honest no one has ever told me a stage number although on my records it is marked as 3. But when first diagnosed with emphysema (COPD) they told me it was mild, now 7 years later they tell me high moderate (on the cusp of severe) . I don’t feel any difference in my breathing apart from stairs and slopes but I know I have more bullae (holes) in my lungs now. I hope you find the answers you need. Kevin

Offcut profile image
Offcut

I have a multitude of conditions COPD, RLD and IPAH and all affect my breathing. In 2008 The Wife was told I was not going to survive the night twice. In 2012 I was told by my Consultant I probably had 6 to 9 years? Interestingly I googled it and it said 5 to 6 years!

I have learnt that google is not always your friend and is relying on old data that has been stored a long time and based on the question text? Maybe AI will improve it who knows?

Now as the first paragraph shows they all got it wrong! I have found that you have to know your limits and push them from time to time, but know your limits! It is important that your friends and family are aware of these limits too.

Be Well

Marc1965 profile image
Marc1965 in reply toOffcut

Thank you offcut,I wish you well.

Offcut profile image
Offcut in reply toMarc1965

I have found looking at medical reports are by far the best for information it is getting past the jargon that is hard. Ignore anything the Daily Fail say.

Marc1965 profile image
Marc1965

Thank you everyone for your comments and support.I am struggling to be positive about copd right now.It was 13 years since diagnosis and I felt fine.5 years later I started to feel the effects.Three years ago I saw a consultant and I now use an inhaler.I have avoided studying what copd was and just ignored it all.

I have recently looked into it,that's why I am here.

I am finding it hard to think of this as a kind of long term you can live with it disease.

I do keep seeing it as a deaths sentence.

Patk1 profile image
Patk1 in reply toMarc1965

I find the best thing about a diagnosis is you learn to manage it. Follow advise.take medications, keep as fit+ healthy as u can,d be proactive in learning self care and move yr goalposts if need be.all the above replies are positive and encouraging you.If you continue to have the mindset u have, it will hold u back.id seek some mental health support + perhaps start by ringing nurses on aluk helpline

0300 222 5800

Marc1965 profile image
Marc1965 in reply toPatk1

Thank you Pat.I am privately now seeing a psychologist and he has been helpful with Cognitive behavioural therapy and getting me started on mindfulness.It is working but sometimes you go backwards in your treatment,before going forward again.These messages here and another website in America are helping me to get it in my head that I still have a future.

I am taking all of the advice about, sleeping well,exercise,keeping active,not smoking,eating well and not being overweight.

Thank you Pat,I know you have sent me previous messages and I an grateful to everyone here.

Patk1 profile image
Patk1 in reply toMarc1965

That's gd and I'm glad it is helping.i found cbt v usefull.it sounds like Yr doing everything right.yes, we all have bad days.as u progress with cbt, you'll learn to stop those thoughts in their tracks. The helpline is available on WhatsApp too.ill post it if I can find it xxx

Marc1965 profile image
Marc1965 in reply toPatk1

Thank you Pat.

Patk1 profile image
Patk1 in reply toMarc1965

Welcome to the Asthma + Lung UK's asthma community forum. The team can be reached on 0300 222 5800 (M-F, 9.15 -5) for more personalised advice. You can also chat with our asthma nurse team via WhatsApp on 07999 377 775 (M-F, 9.15 5). We are closed for public holidays, Easter break and between Xmas and New Year.

Marc1965 profile image
Marc1965 in reply toPatk1

Thank you again Pat.I shall read all of these messages on here and on an American base copd site again and again to get it in my mind that things are not as bad as my mind is thinking.The American sight had a Doctor who said I should do fine long term,as I am moderate copd.

Sometimes it takes time to let logic set in.The flight or fight sets in and off we go making up all sorts of dramas in our minds.I would have a drink and relax but I stopped 5 years ago lol

Thank you again.

Patk1 profile image
Patk1 in reply toMarc1965

Yes, it's hard when mind goes into that mode. Having since read Yr post about u losing yr dad at 15, to copd, it's more understandable where yr health anxiety comes from xxxxxx

NieceByMarriage profile image
NieceByMarriage

It's not a death sentence. I thought that when mine was diagnosed 14 years ago when I was in my 40s. I have COPD and asthma but the asthma was never discovered in my youth as I have never had the obvious gasping/wheezing I always thought went along with asthma). I was started on an inhaler then, though I tailed off my use of it as I got to a healthy weight and developed an exercise habit.

Diagnosis has recently been re-confirmed with full lung function tests after a serious bout of pneumonia that laid me very low. Even in the face of that damage my overall lung function has not deteriorated any more than might be expected for a person with healthy lungs over that period of time. The difference I notice after the pneumonia (and a very long recovery period) is a marked reduction in peak flow and a marked reduction in my ability to exercise vigorously at the drop of a hat. If I warm up properly I am fine. If I have to run upstairs all of a sudden - urgh. That's tough.

I've been persuaded by my lung consultant that I am better off using my inhaler than not even though I don't often struggle for breath these days. He changed the inhaler to a more suitable one.

I cannot stress enough how much a healthy weight and plenty of exercise helps. And DO NOT GET ILL! Easier said than done, I know, but you will do yourself a huge favour by doing your best to avoid respiratory ailments and having your flu, covid and pneumonia jabs as recommended. It goes without saying that if you smoke you should stop, and you would be wise to avoid polluted air as much as possible.

Marc1965 profile image
Marc1965 in reply toNieceByMarriage

Thank you.I stopped smoking 13 years ago.I am not overweight.I walk using a treadmill and lift weights.

I am just getting my head around slowly getting worse.

Best wishes.

Caspiana profile image
Caspiana

If it makes you feel any better, patients with COPD generally have a longer waiting time on the transplant list due to the fact that priority is given to patients with higher short term mortality rates. COPD patients do have longer expected survival rates than those with other lung diseases. Many people on this forum have lived for decades with their disease and still are as active as possible. We all learn to accept and adapt to our circumstances.

Mopsey1897 profile image
Mopsey1897

Please stop thinking about dying as you’ll make yourself depressed. You could get knocked down by a car or have a heart attack so it doesn’t always mean you’ll die from copd! You’re young so why not speak with your consultant about lung valves or targeted lung treatment? You may not be bad enough to qualify but worth asking. I think it’s marvellous that you were diagnosed 13 years ago and you still only need an inhaler, that is a huge plus for you. Exercise as much as you can and stay active. You need to also have a positive mindset about copd and don’t give in to bad thoughts.

Marc1965 profile image
Marc1965 in reply toMopsey1897

Thank you Mopsey,you are correct and I am sure eventually I will feel calmer about it all.These messages are helping.

Dianajoy profile image
Dianajoy

I have had COPD/Asthma for more than 20 years. My recent breathing test showed that my lung capacity has actually improved, and my peak flow is the same as 7 years ago. I have done Pulmonary Rehab courses 3 times, I go to Better Breathing exercise classes twice a week, and a singing group (Sing Your Lungs Out) once a week. It’s good to exercise with others with the same sort of problems, it can be inspirational, while singing lifts your spirits too. Great advice from others to keep up with your immunisations, and wear a mask in crowded places.

Marc1965 profile image
Marc1965 in reply toDianajoy

That is interesting that your lung capacity has improved.Thank you Diana.

Yeo58 profile image
Yeo58

I’d say it can vary massively, I was diagnosed 23 years ago and still mostly doing what I like to do, albeit at a slower/managed pace. I wouldn’t dwell on the inevitable, could get run over by a bus tomorrow (as they say) lol embrace today, enjoy what you can do and not what you could do, that’s my mantra anyway x

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