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British Lung Foundation
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Diagnosing Lung Disease ! Fear the Umbrella !

scitecheuropa.eu/chronic-in...

This was an interesting link which upon finishing reading its content left me more confused

There is this quote in the conclusion which nails it

“ The diagnosis is based on the patient ‘s collaboration and the experience of the examining doctor. X-ray, CT Scan and other laboratory parameters can help to differentiate chronic inflammatory lung diseases but none ( Repeat NONE !) of the tests can provide a certain (particular) diagnosis. “

I find this fascinating in this is why so many with COPD honestly have no clue what they may have which is why organized medicine insists on this ridiculous Umbrella

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How very true I know I got copd and that's it

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I’d figure I’d post something about lung disease before our forum is overwhelmed by our friendly furry felines bless their souls!

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Didn’t you know, this is the cat and occasional lung forum?

😄 But seriously, I read the article which is very interesting but I’m confused about what it means by the patients’ collaboration. I know spirometry or peak flow require participation from a patient in the way that x-raying a leg for a suspected fracture doesn’t, for example. But surely lots of other tests require collaboration, and very few people surely are going to either not bother or try too hard, to give a false result. Not sure what they’re meaning? Hopefully I’m not setting myself up for a “doh” moment with a silly question here... 🙄

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The patient collaboration part confused me also unless it’s the old are you a smoker! Did you smoke? Did you work around chemicals etc etc . This would give the examiner a baseline or a a clue so when in doubt they can say oh you smoke so it must be Emphysema

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I keep going back to that article. I think I’m getting obsessed! Something else I was wondering about, the part about COPD that they even mention as ‘smokers lung’, says that 30% of people actually never smoked and it’s caused by something else. If so, is it not possible that even if someone used to smoke, that their COPD was actually caused by something else.

Also, I know someone whose dad had what he calls ‘farmers lung’. There would be a lot of fine dust in hay and straw. I’m wondering if that would have been COPD that he had.

Just wondering out loud really, there’s no real reason behind it all.

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All your observations are dead on . There are so many environmental elements that can cause lung disease both natural and man made . I know I sometimes sound unreasonable but I almost believe that a larger much larger portion of the population has or will develop lung disease as it seems like it’s a natural progression of old age . Basically as crazy as it sounds I sometimes think if everyone over say 50 years old were tested a high number would have some type of degenerative lung disease . But I’m no expert

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I’ve read somewhere but I am sorry I can’t recall where that Arab Bedouin’s suffer high rates of lung disease probably from living in the deep desert and breathing sand most of their lives

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Hi Redsox. I don't think that smoking is (or at least should be) an automatic indicator of COPD. Plenty of us who have been diagnosed with Bronchiectasis rather than COPD are ex-smokers, if not smokers, I think. I was a reformed ex-smoker on diagnosis, though only about 15 pack years*.

Is it important what name they give to your condition as long as they tailor your treatment to manage the symptoms? Just asking out of interest rather than challenging. Do COPD sufferers feel they get a prejudiced treatment or reaction from 'the public' (or even the medical profession) due to the emphysema link and it's heavy smoking = fault connotations?

*15 pack years = an average of 1 pack of 20 a day over 15 years or half a pack over 30 etc. Papworth told me they use a rule of thumb (I'm sure not slavishly) that they would not expect lung cancer from smoking at under 20 pack years. Dunno why that stat is not given wider exposure: maybe they think it's a double-edged sword that would encourage the young to continue rather than encourage the mid term smokers to quit.

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Haha that’s a good one HungyHufflepuff as I do love cats and dogs . They are good for the soul

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You should really take a close look at a Hi-Res CT Scan (with contrast). With mine, you can see the aveoli quite clearly at the bottoms of each lobe and the empty void of destruction in the top 2/3 of each lobe. This is what emphysema looks like, it is not what you can see in so much as what you can't see.

Of course there are other things like nodules, tumours, airways, bone and the heart, that show up as well. I was given a tour around one of my scans by a consultant who explained it all, at an appointment that was out of synch with a PET Scan result, rather than waste my journey. Truly fascinating and frightening at the same.

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Very true fascinating and frightening indeed 2greys

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I had to read that quote 3 times, and I'm still scratching my head. Talk about hedging your bets....

I had one pulmonologist tell me that you can have emphysema and not be classified as having COPD if there is no obstruction in your lung function. My hubby has bronchiectasis and was told by his pulmonologist at the time that he has COPD, but another pulmonologist said that it is not COPD?????

My new pulmonologist said that my latest PFT showed some "diminished lung function", but she is not sure if that is from emphysema or the fact that I am down to 3 lobes (my money would be on the 3 lobes). She told me she would have to look at the biopsy from surgery, all my CT scans, and my past PFT's before offering a definite diagnosis.

Twenty years ago my dad's doctor ran some tests, did a chest x-ray and told my dad he had emphysema. There was no maybe, possibly, might have this or that, could have the other thing, it was cut and dry...you have emphysema! Of course his doctor also told him "you better quit smoking now, because if you don't you will wind up on oxygen, and that's a hell of a way to die".

It seems to me that the more knowledge the medical profession has, the more tests they have available, the more difficult it is to get a definitive diagnosis.

So as patients we are left dangling in the wind, no idea what we have, or what to do about it.

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Almost to the edge of denial which may not be such a bad thing since I know a few folks in total denial that they actually live normal lives not caring at all about their diagnosed illnesses sure they have many “bad” days but it doesn’t faze them ....... go figure!

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My sister in law is one of those people. My husband is the same way, but what he doesn't stop to think about is not taking care of himself can be fatal.

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I keep reading this abbreviation but still don't know what PFT means. Please can you tell me?

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It is for Pulmonology Function Test (I’m in USA) it is a battery of breathing tests that measures various inhalation and exhalation which compares one’s breathing functions in comparison to folks your own age / height/ gender and gives you figures to compare with baseline figures also you are given a bronchiodialator (via an inhaler) which will test weather your numbers are obstructive or restrictive flow or both or even normal . This test is part of overall Spirometry which is often used as a diagnosis along with possibly a CT Scan and your medical history combined forming a diagnosis. There are many examples and explanations that can be found on the internet. This is only mine which is only basic

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Thank you very much I feel much better informed now. Would it be like a lung function test in UK?

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I believe they are the same I’m sure one of the UK folks would affirm that

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Thanks

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Absolutely true KatherineK it is a dilemma and your story is a testament to it . God bless!

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A wise man once told me”there is no point in differentiated diagnosis unless there is differentiated treatment available.”. If there is no (or little) differentiated treatment for chronic bronchitis vs emphysema vs anything else, perfecting the diagnosis won’t matter much, will it? I’m relatively newly diagnosed, not sure how different the treatments are, just wondering if that is a factor in the umbrella approach?

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Actually that is a great observation pepapod although I’m convinced there are degrees of CODP and I strongly believe that there is no treatment other than inhalers which I’ve noted in other posts are in my opinion not very strong . I also believe that emphysema and Bronchitis although under the same umbrella are totally different diseases and be researched differently but then again that’s just my opinion.

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Yes everything is so confusing

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Yeah they all try to talk circles around it here also. I’ve come to learn though that when X amount of people come in an out of hospital in X amount of time. They get a little uptight if too many people have a same diagnosis bcuz that could end up being called an epidemic and that gets a big population of people in panic mode. So I’m a firm believer in second opinions.

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Thank you for posting this article RedSox but All very confusing I must say.

My first question to my specialist was “I don’t care what it is called or what has caused it, I want to know if you can cure it or at least stop it in its tracks ( or slow it down a bit)

Sadly in my case there is no stopping my Emphysema as it is caused by Alpha 1. I now must rely on a great medical support team, medication, a positive outlook and a good diet and exercise ( along with a bit of good old fashion parlaying)

As Shakespeare’s once wrote “ a Rose by any other name ....”

everyone is different and call it what ever we need to remain positive happy and as healthy as possible.

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Interesting Reading. I have COPD, Listed for Lung Transplant, Have had 4 Valves in my Right Lung which have opened the aveoli to allow air to flow to stop the SOB, I could see the Emphysema at the Bottom Lobes on a X Ray, which was explained by my wonderful Consultant. I take & Live Each Day as it comes and I'm enjoying it, the Oxygen , Meds, Breathe Easy, Exercise, are the Package I accept, Just making the Most of a Disease that cannot be Reversed. Have a Good day to you All. xxx

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