COPD is not always progressive.

"It’s time to stop counseling patients who have quit smoking that COPD is a progressive and terminal disease. Many patients are under the impression that they are steadily dying of emphysema; unless it’s obvious that they are, physicians should re-educate them in light of the new findings in this and recent papers, which create space for optimism in the prognosis of COPD. Such a positive counseling approach might improve the mood, attitude and quality of life of people living with COPD (and — dare I hope? — help them increase their activity levels)."

As I have pointed out before - copd does not always progress and even when it does, not everyone has the same rate or degree of progression. The above is taken from an easily read summary of just some of those findings and takes just a couple of minutes to read.

In addition to the plethora of articles on the subject, there is the living evidence staring us in the face - many people with copd for the past 20 or 30 years still active in their 80's ! Today I will be at my COPD support group. Most of our members are over 70, a couple are in their 80's. We will all be exercising for a whole hour together - under our own steam, our own ideas etc 'doing it for ourselves'. Perhaps that too has something to do with their high level of mobility and their longevity!

For the worried and the pessimistic among us, I hope this article may give you some comfort and more than a dash of optimism - the future is not a foregone conclusion;

pulmccm.org/main/2012/copd-...

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32 Replies

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  • Good morning Parvati, I love reading informitive,positive news on COPD, thank you for posting this good news! I am a firm believer that we can all improve the way we feel by the way we think and being positive and grateful for all the good things we have. Hope you enjoy your exercise with your group today, I'm just about ready for walk no.2 with my dog, he keeps me on my toes as I must live in the only place that doesn't have pulm'rehab!not to worry though,I am keeping busy and well exercised!Have a great day! :)

  • Could you contact the BLF helpline and find if there is anything in your area that can support you in remaining active and positive with many more great days

  • Katie Peters posted some information in this blog blf.healthunlocked.com/blog...

  • Thanks Chunkys, I will give them a ring, you never know,perhaps there is some support these days,its many years since I last enquired come to think of it! Have a great day too, (((( hugs)))) :)

  • The older I get the older I want to get no slowing down any more than I have already

  • Hi parvati I totally agree with you. At my PR group they said you can be as fit and strong in your old age as when you are young. Hope thats true. In that case I will be better than when I was young as I didnt excercise then. lol xx

  • now i understand why over the last 8 months of chest infections and SOB everyone thinks i am a hypochondriac.

    Coz over the last 7 months my COPD has got worse but if its not a progressive disease i must be imagining it!!!!!!

  • I know mine has got worse too, but I'm trying to over-rule my mind here and tell myself everything is OK ;-)

  • mine to i have gone from being a active person looking after horses to now practically not being able to do much of anything in a matter of months lol x

  • It is progressive and as you get older your lungs lose elastic .It the inflammation that does it and until they can cure that copd will progress

  • Life is terminal... It ends at some point. Having COPD, or any long term condition, does not mean we're going to depart this mortal earth any quicker than being knocked down by a bus.

    It's called Chronic as it's not reversible or curable, but having your options open could mean living longer than a 'couch potato' - or a smoker...

    How we deal with our own personal state of health is between us and the medical profession. I know that I've not just given up on wanting to feel better than I usually do, and it's down to me to make the effort in making sure the medication is working for me, that I get some exercise and that I don't just sit and stagnate.

    I'm always happy to see positive news, it help the state of mind !

  • Great post Parvati. As I have mentioned here before, my GP is a COPD specialist.

    When I was diagnosed a few weeks ago, he categorically said to me that if keep fit, active and do aerobic exercise as well as being a healthy weight then there is no reason to think my COPD will get any worse and my lung function will only diminish in line with the normal ageing process.

    I have the medication to help, will be getting my pneumonia jab and annual flu jabs and I will have 6 monthly check ups with him and the respiratory nurse to monitor me through spiromotry, oxygen level and peak flow tests (I also have mild asthma). I will also be issued with antibiotics to keep at home.

    So I have never thought of COPD being a death sentence or a terminal illness and was quite shocked when I saw some posts which seem to indicate this is the case. It is certainly not what my GP says, nor does the literature he gave me say it.

    So my understanding is if I look after myself in a range of ways (weight, exercise and healthy eating) I am giving myself the best chance I can.

    Lynne x

  • Hi Lynne ,

    Diet , exercise and general care is indeed the way for everyone to keep as healthy as possible . The more severe the stage of COPD we are in needs a bit more help to maintain normal existance and although it is possible to control most aspects of the condition it becomes more difficult without the extra help at home for doing the more challenging jobs . I am 57 and have had my condition for 54 years so i suppose i haven't done too bad , i do now feel i need some help , my husband is a chocolate teapot , putting the rubbish out last week my sats dropped to 55% , i have been that low many times but until i got my oximeter i didn't know ( but i have felt that low many times ). I have applied for home help , no chance , DLA no ! , carer no , how much in need does a person have to be to get some help ( i do live in Ireland tho ) . I live in the country too so the nearest refuse collection point is 3 miles away so i have to load it in the car and obviously unload it at the other end . When there are things like this to cope with it may make your condition feel more terminal , which it doesn't need to be . It may be that people with a more challenging lifestyle feel that life is more of a challenge xx . xxxx Dinny xxxx

  • COPD is not a death sentence blf.healthunlocked.com/blog...

  • I enjoy reading a good post like this...No miracle cure is forthcoming,thats for sure,but we are all different,and whats good for 1 may not be good for another..As i have said in my very first blog,i regret ever smoking and the damage i have done..Copd will destroy the lungs but i feel myself if i can slow down it,by looking after myself in nutrition and exercise i hope i live till my 80s before being run over by a bus lol..Sometimes feeling sorry for ourselves makes us worse, and life is doom and gloom..But,when i see young children who have got cancer,it soon hits home that really we are the lucky ones who have had a life,even if it is limited..

  • Bloody hell! So I took out that LV over 50 life cover and I might not die soon after all!

  • ha ha - like your sense of humour robevanz...... And thank you for posting Pavati I enjoyed reading the post - no miracle cure but a possitve news always helps the state of mind....

  • hello Parvati

    i agree with you and i feel this is what i was trying to say in my question the other day, GP,s have this in the back of their minds maybe not a conscious thought but they treat as if it is expected emphysema / copd gets worse, this does not follow if you stop smoking exercise and pay attention to your health you can live a reasonable life, i know i feel better than i did three years ago,

  • wot a load of utter rubbish you have put up in here !

    of course copd/emphysema is a progressive illness and as it is progressive with no cure it is terminal !

    god why put this rubbish in here when if you look at the meaning of terminal or chronic you would be able to see just wot the terms of the name mean.

  • Hiya Roger I utterly agree with you I am 55. Don't work now Copd no other health conditions had flare up have rescue meds . Anyway I am on max medication sob had tests & told by consultant because off my age 55 & I don't need oxygen he has referred me for lung transplant ? . People need to read around Copd & lung transplant . So if it wasn't progressive why then am I being referred for copd lung transplant . Thanks Roger

  • Have recently been diagnosed with copd having smoked for 40 years. Gone through every emotion from hopelessness to depression to loathing myself for continuing to smoke and like most people diagnosed with this disease I tried to find out all I could relating to copd, although a lot of what I found was a little less than positive. On the plus side there is a lot of very good advice out there on what you can do to help yourself and a lot of positivity from those suffering copd also. I agree that reading that copd is a progressive and terminal disease constantly is enough to make you want to give up, and reading your post, albeit you posted it 2 years ago, but it was nice to find it and be able to read it. Many thanks. I have been taking spireva for 3 days and it seems to be helping me. Just need to stay positive and continue exercising and swimming. Anyone else have any other positive thoughts to share with us all?

  • Hi Doreen

    I too am in a very similar situation to yourself I think? I have just recently been told that I could quite possibly have COPD (from GP mainly due to me being a smoker, from spiro breathing test). Had xray at hospital and it showed bullae that one had gone slightly bigger from 5 years ago. 5 years was the last time I had chest x-ray due to me having pneumonia.

    I have smoked over 20 a day both normal cigs and roll ups for just under 40 years (38). I tried cutting down as soon as I found out but I couldnt hack it, and yes I do have guilt feelings. I am waiting to see a consultant on 01/09 so maybe I'll learn more then. I am on the brown inhaler which I was given before I had x-ray (see what I mean about GP stereotyping?) I have not had a day off work since 2009 and pneumonia, so am waiting to hear the worst from consultant, as basically things I have read about COPD seem worse than lung cancer.

    On the positive side I think GP's just try and worry you more as the nurse said when I tried the smoking cessation clinic, you will feel worse for 2-3 weeks when you stop smoking (wonderful motivation) and using the tablet to help you quit I was told could possibly lead to depression (I have enough of that already, trying to come to terms with condition).

    Kathme

  • I found the nurse at my stop smoking clinic supportive in every way. After six weeks of reducing patch strength and sometimes forgetting to put a patch on during that time I was free of cigarette smoking and have not looked back since, except to kick myself for smoking in the first place. Keep trying Kath, don,t give up. I wish you well when seeing your consultant.

  • What happened to the long comment I left here this sucks it took along time to type it out?

  • Ok at stage 4 this is kind of mute, I feel what you are really saying is that this can be slowed down to a point where if you are in early stages it can feel like you stopped it. At 37% lung volume I had the option of having the top of both lungs removed to make it easier and it did for 4 years as it brought me up to 45% lung volume. Now I am at 36% and my heart beats at double the rate it should when I am resting and triple the rate or higher if I am exercising. I am on the verge of being out of breath all the time and feel a tightness in my chest. People say I look better than they have ever seen me before because I ride bike to build my stamina so I will be strong enough to get lung transplants. I am also speaking in the schools to kids every where and speaking in state and city functions to get people to quit so my level of Joy remains very high even in the mist of the suffocating death that is upon me. Even though I am on the verge of being out of breath and in pain most of the time I refuse to show it on the outside. I will stand my ground and fight for the lives of the young and old alike until death takes me away to glory!

  • You can find me on facebook by searching for Michael George Patterson look for the guy wearing the black vest.

  • I've had emphysema for 10 years I am in the moderate stage now I am 61 years old I have committed myself to my own happiness I refuse to worry about 20 years down the line Today is my day I will live it to the fullest

  • Hi, responding to this post COPD is not always progressive,

    i am a carer to my husband he is 54 i am 49, his illness has progressed and in a lot of cases it does progress slowly but in my years of knowing people with this illness it always progresses even if only a little, my husband has been ill for over twenty years and i must say he has got a lot worse, COPD can also lead to pulmonary hypertension and heart failure which he has now got, he also had a lung removed 5 years ago and is on oxygen 24/7, over this last month he has become a lot worse his illness is now progressing faster,

    if your one of the lucky ones that your illness progresses slowly or you dont end up with heart problems or other problems then yes maybe you will live a rip old age but for my husband thats not the case, my grandmother also had it but only for a few years and died in her 80's, maybe it depends on when your diagnosed,

    i just think people should be aware that for many it is terminal illness

  • I am a 44 year old nonsmoker, probably smoked 10 cigs my whole life, and was just diagnosed with mild COPD based on FEV1 and xRay. Not sure what this means for me and my future and so searching for information while I wait my CT and follow-up with pulmonology. In addition to my bride and 4 children, my love in life is swimming, biking and running. The last 3 years I have competed in several sprint and Olympic triathlons and 2 Half Ironman races. My fear is that this diagnosis will force me to stop doing what I love much sooner than I would want. I dream of competing in a Full Ironman and hiking the Appalachian Trail once my children are grown (youngest is 9). It is depressing to think my nonsmoker lungs may prevent this. I have found some encouragement in readings here and elsewhere and so I thank you. Bless each of you!!

  • Wonderful afticle!And so true. I was diaganosed eith mild emphysema almost 2 yrs ago. I had wuit smoking cigs almost 1 yr prior. My doc told me that l wud live my expected life dpan as long as i DID NOT SMOKE TOBACCO, and walked. Stayed active and positive. I was goven albuterol to use when needed. That was it. Not smoking difficult, so l started usung ecigs, nucotine only. My foc said that was okay for mr. Today, l feel great. Sorry about typios. My doc said vapes ok for me. I thought ld been handed a death sentence. Not so. My oxy level is normal, despite my emphysema. Yoy dont smoke for 43 yrs and not suffer some lung damage that is not reversible. But you are not necessairly going to die. JUST QUIT TOBACCO. KEEP MOVING PHYSICALLY. LAUGH A LOT. LIVE YOUR LIFE. DONT WORRY. I CANT BELIEVE HOW GOOD I FEEL. BEST TO ALL MY FELLOW FORMER SMOKERS. WE CAN DO THIS!!

  • How lovely to read something positive about COPD. I have had it for several years and do try to keep active and positive about the future. I wish I could join a group so that I could do edxercises etc with other people, it sounds fun. Keep it up.

  • i have a tumour on my lungs and im fantatic breathing...but my asthma is 50 percent...so i dont understand what is happening...got to have left lung removed ive refused..my tumour is not growing stable...but my fostair holding me in good stead...ive got mild copd..but needing more tests...but must amit i dont get breathless as yet...so i guess lung cancer is not as bad as copd....but im getting checked and looked after by nhs...but im been supervised regulary...my respirtary consultant is so nice...he said up too me if i dont have operation they have left a slot open all i have to do is phone his secretary and i can have it...im saying if it dormant leave me be..but must be awful copd ive seen people struggling bad..

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