I have gone on this forum not sure what I was expecting but I have to say a nurse lied to me when she said I would progress like other people now i stopped smoking so did my consultant. Everyone on here has progressed. I respect the fact that you are all fighting this disease with all your might, but why the end result is we will all of we live long enough end up fighting to breath. I am so beyond angry that I have been lied to. I actually found post from 6 years back where people were told the same and yet they have done all the right things and yet have still progressed. Guess the clue is it's a progressive disease. I will never trust anything a medical professional says to me again.
I have emphysema and asthma and God knows what else, as my consultant has onlyl diagnosed me with those.
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Exactly! It is an incurable progressive disease, however, each and every person is unique in how their disease reacts. Some progress quick. Some stay the same for many many years. It’s maddening because there is no accurate answer to when one will die. There are those on oxygen with a fairly high Fev1. I’m not on oxygen and the last time I had a pft I was 25%. I still work full time. I do get winded and have to use a rescue at times. There are so many variables and no exact answers. That’s hard to live with. Meds can control the panic and horror of dying from the feeling of suffocating. Also many die from catastrophic events such as stroke or heart attack. Not everyone dies slowly gasping for air. Many will die from something else other than their copd. Copd is not a well managed disease by drs unless you have an advocate that knows exactly what you want. Palliative care can manage symptoms very well. It’s important to fill out a living will and name your people you legally want managing your health. If you have a well educated and informed person who knows about copd your comfort can be kept. There are many who have lived twenty yrs with an Fev1 as low as mine. It’s difficult to manage the anxiety though. I am able to pretty much handle it but my wife freaks out all the time.
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It's not about death it's about being lied to...the idea as appealing as it is gives false hope to people who think great I can manage this it will stay stable if I do x y and z. And to be lied to is unforgivable. Excercise what the hell for eat well why? To slow down the inevitable.
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When I was diagnosed 11 years ago at age 47 my pulmonologist who is supposedly a lung specialist told me I’d die within 18 months if I didn’t have a lung transplant. Well I don’t want a transplant as it’s a double edge sword. I’d be given a entire knew set of problems. Well now it’s been 11 yrs later and I’m still working. So I know. Drs shouldn’t be guessing. Because that’s all they can do is guess. Everyone reacts differently to copd.
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And I believed it how stupid was I
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So did I!
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What do you do for a living
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I’m an engineer for a food processing plant. I have a crew under me I can count on to do any physical work. I tell them exactly how to wire motors or anything that comes up and they do it for me. Great bunch of guys. Otherwise I couldn’t work.
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My job is very physical and it all but kills me, but hanging on to the lies made me believe of this is as bad as it gets I can push through but it gets worse. I am so so angry that I was lied to so angry
Hi check out your BODE score as it will give you a rough guide as to what chance the medical fraternity would give you on surviving the next 4 yrs.I think mine worked out at about 57 % so more or less 50/50 which is like the flip of a coin.
It doesn't include the myriad of other comorbidities that people may have,or accidents,infections or being run over by a bus and i only did mine because i have a healthy amount of curiosity and a very morbid sense of fun in finding out these things.
Just checked that, (never heard of it before) it indicates i have 4 years left, i have had a fev of 40/46% for the last 12 years so that Bode has got it wrong for me
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The living will got no one I trust enough ...besides I don't want to live 20 years struggling to breath, breathing that gets worse I really don't..I am managing my breathlessness as it is now, worse than this , no I couldn't
It has been a great joy for me to read such a positive reply Apeter, I normally thread very carefully over the posts on here as some are so downright depressing. Thanks for such an informative post.
No one really knows what will happen not even doctors they just take a guess, I told my doctors i don't trust anything they tell me.
I suspect that many of us who join this forum have done so because we seek information and support whilst living with a disease which gives us problems.
People who don’t have problems rarely join a forum if they have no ongoing issue with their health, even with the same diagnosis.
So whilst you have canvassed whether forum members’ health problems have worsened having stopped smoking and concluded that you have been lied to because everyone who responded has said they all have, it is a tiny proportion of people all given the same diagnosis, many of whom don’t belong to this forum.
What we can’t know is how quickly or slowly progression of a disease might be, and it is your choice whether you make any lifestyle choices which may affect that.
You can choose to carry on smoking if you wish to. Sadly for me I have had to accept that it was my choice to smoke that has brought me to this place, so I will continue not to smoke.
I have had bronchiectasis and asthma all my life and when I first got married I asked my GP would I be able to have children and he said he was not sure but he did not think I could, I have six grandchildren and one great grandchild. That doctor died in his sixties(he smoked as did most people in them days.) I am 80 and do struggle a lot more to cope with it in old age but I am thankful to be still here and thankful I have a good consultant who still takes an interest in me.
Progressive, mmmm Yes but like yourself I was told 18 years ago by my GP and laterally consultant "you know it will get worse" and some people I know have had COPD emphysema for years and years..
SO, The truth, yes! it is progressive disease, but you still may die of OLD AGE first.
I have COPD, Emphysema, Asthma, ground glass opacity and WOW Bronchiectasis...
and I am still "kicking the cans down the cobbled street...and feeling groovy."
SO Chin up, keep on enjoying your life, loved ones, friends, nature and anything else that makes you feel good.
It was not a lie. When you stop smoking, you revert to the normal rate of lung deterioration of someone who has never smoked; but that doesn't mean you stop deteriorating, or that you will follow this trend exactly, as these figures are based on averages (and there are no average people!).
It could be that you were extremely unlucky, but I don't think anyone was trying to pull the wool over your eyes: they were simply trying to be encouraging by providing you with the accepted medical doctrine.
I don’t know if you are still on here, but doctors are not lying. They just have no idea because everyone progresses individually. As for smoking, some of us have never smoked, so it’s really not that black and white. I have absolutely no idea why I have lung problems. Living in London? Clay dust from doing ceramics? Pneumonia at 4 mths old?Life is a bit of a lottery, and we can’t control all the variables, sadly. But clearly eating healthily and exercising where possible is a good basis for everything.
Yep, smoking for many years always causes breathing problems in the end. Whatever anyone says about it doesn't change that fact.
Hahaha...I didn’t say if we were lucky we’d have a catastrophic event. Although my drs have told me “you won’t run out of breath. You are more likely to have a catastrophic event, probably a heart attack.” Again Drs guessing. I was trying to convey that one can emotionally wear themselves out wondering exactly how their disease will end! Mostly I was referring to our last months, weeks, days... in my research drs know that to have what is referred to as a good death would be to stop all the icu interventions at some point as they are well aware death is imminent. And focus on the patients pain, comfort both physically and emotionally. However, with copd unlike cancer they keep doing procedures to keep one alive when there is zero quality of life. Drs are better at telling cancer patients I’m very sorry but we have done all we can. This is why it’s so important to fill out a proxy, living will detailing ones wishes. Example; DNR, no mechanical ventilation. Each person of course chooses for themselves what they want done. Again, I’m only talking about the very end when one knows things are getting unbearable and their life is ending. Many people die from something else than their copd.
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DIY or should it be WHY WHY WHY!
Can this really be true ???
Heartbreaking IPF
lets fight back
New to this!!! IPF
