For the LIFE of me a can' t understand

Why a FEV 3.57 is normal and my peak expiratory flow of 461 mean

A like to think things was fine but given infection rate something is clearly wrong.

Like what dose them numbers mean .. can you suffer destruction more than dieased lungs

[peege]

oh god, search me Daz. I dont understand either. Beats me. When I feel like death & do peak flow at doc & it's 350 they say "well, peak flow is ok" . It's always okay even with pneumonia it's 200-250

I awaitsome interesting replies xxx nice to hear from you BTW

[Hidden in reply to peege]

Hi peeg nice to see ya back yer was reading its not best or reliable methods at determining severity. Of asthma or lung disease .. a need to see my lung doc as gp's cant or wont tell me what stage i am

[Toci]

Hi Daz, the numbers can be confusing. Why not give the BLF a ring on Monday? They will be able to interpret and discuss. x

[Hidden in reply to Toci]

Hi toci cheers yer had time of late guts pain and infections .. a had ruff idea whats going on BUT would be nice if docs would just be honest .. av real rank infection all my doc's do you want see ya lung doc .. Anyway thats other story .. Yer need to see lung doc b4 i forget to give him roasting .. Was talking to welfare rights and the totally disgusted in my medical letters of doc's said they was surprised i got anything of pip dwp

[droo32]

Dear Daz,

There is more to lung disease than having close to normal spirometry. If you have the risk factors, you could have significant emphysema without having COPD. This is not the most common presentation, however it does occur. Moreover you could could have mild emphysema with normal spirometry and be in significant distress. You could also have combined emphysema and fibrosis which counteract each other and give a false impression of normal lung function on spirometry.

journal.publications.chestn...

ncbi.nlm.nih.gov/pmc/articl...

My point is, to get a good idea of what is going on with your lungs, you really need full spirometry, plethysmography (colloquially known as lung volume measurements), diffusion measurement for CO, some radiography (preferably high res chest CT), blood work, sputum analysis, and a thorough chest examination by a knowledgeable physician. If it's really complicated there are many other tests that are normally only performed in research laboratories which could provide some additional insight.

[droo32 in reply to droo32]

I am in the US however I would wager having such a thorough work-up is very rare in nations with socialized medicine.

[O2Trees in reply to droo32]

Hi droo32, I dont understand your reply above to Daz (hi Daz!)

How can someone have "significant emphysema without having COPD" when emphysema IS copd? (COPD being an umbrella term for various obstructive diseases including emphysema?)

I'd appreciate clarification, thanks.

[knitter in reply to O2Trees]

Hi 02trees, maybe classifications are different in the US....don't know

[O2Trees in reply to knitter]

Perhaps, but when i was first diagnosed i was frequently on US forums, and that was not my impression then.

I assume conditions for dx-ing copd/emphysema in the US would come under the GOLD criteria (Global Obstructive Lung Disease) as we do here.

Maybe there's something Im missing.

[coastal1 in reply to O2Trees]

Hi O2 , I think I may fit the above description . Following 2/3 years of frequent chest infections and a constant productive cough went to doctors in October . Diagnosed with copd following xray and spirometry of 52%.( 55% on retest ).Quit smoking in November and my cough disappeared. I can walk for 4/5 miles on the level and do most things others aged 63 do .( only suffer sob on hills and inclines )

In January GP said that although the lung damage can never be repaired ." You are now asymptomatic so effectively no longer suffering from copd !! "

When droo 32 wrote the above it was the first time I had heard of anything which seemed to resemble my situation. GP said wait till May then discontinue inhalers.

Daz , I am sorry to hijack your post and wish you all the best with your own confusing situation.

Cheers Coastal.

[O2Trees in reply to coastal1]

Congratulations on stopping smoking Coastal and such a proactive approach with the exercise. Hope you can get off the inhalers too.

There seem to be infinite presentations of lung disease and maybe, as droo32 says, if Daz could get all the tests which I've also had he would know where he stands. Very unfair.

[droo32 in reply to O2Trees]

O2Trees said: "Hi droo32, I dont understand your reply above to Daz"

Hi O2Trees,

Yes emphysema does in fact fall under the umbrella term of COPD however not everyone who has emphysema has COPD and vise versa.

COPD and emphysema both have very specific definitions. The most common definition of COPD is set by the Global Initiatives for Obstructive Lung Diseases, or GOLD. They define COPD to occur when the rate of airflow from the lungs (namely FEV1) is disproportionately reduced to the total amount of air capable of being forcefully exhaled (FVC) after bronchodialator administration. Technically, the bar for this is when the FEV1 (in liters) is less than 70% of the FVC (in liters). In this, COPD is defined by a functional impairment.

In contrast emphysema has an anatomical definition where it is said to occur when there is an abnormal and permanent enlargement in the alveoli distal to the respiratory bronchioles. Since emphysema is defined anatomically, in order to have an accurate diagnosis of emphysema one would be required to have a biopsy and lung tissue would have to be examined under a microscope by a pathologist, in the truest sense. People rarely get tissue biopsies for COPD and it is for this reason that the term COPD was adopted over emphysema in the mid 90's. When you look at a CT scan of someone with COPD you see what would appear to be holes although the is no certainty to this: are they holes? are they trapped air? are they local areas of decreased tissue density? are they permanent? is it some other cystic lung disease? Furthermore traditional scans lack the resolution to capture emphysema; you cannot see individual alveolar walls with a CT scan. Scans can give indications of emphysema however an exhaustive diagnosis requires pathological histology (under a high power microscope). There are some newer imaging techniques that can give better indications of emphysema over CT scan, such as hyper-polarized gas MRI, however these are purely used in research settings.

The end result is the same if you have emphysema resulting in COPD and therefore it is much more appropriate to use the diagnosis COPD. As I mentioned in my previous post, just because someone does not have COPD and has "normal" spirometry fails to give an accurate assessment of the condition of their lungs.

Read the earlier articles I attached and you will see that COPD does not always coexist when someone has emphysema.

[O2Trees in reply to droo32]

Interesting - thanks for the clarification. As i read it, you (and GOLD!) are saying that COPD is a definition of the obstruction, while emphysema equates to the actual damage to the alveoli and does not automatically imply obstruction. There is a strange tautology here though, isn't there, if COPD is an umbrella term which includes emphysema, but emphysema can exist without the obstruction which would presumably qualify it as a COPD disease. Though of course I understand that you can have COPD which is not emphysema but a different obstructive lung disease.

Im probably being pedantic here, but what i do know is that I have sometimes been told i should be using the term COPD when talking about emphysema - I sometimes speak as a patient representative to multi-disciplinary respiratory practitioners. You have given me a whole new way of approaching the terminology

[droo32 in reply to O2Trees]

Yes, you're interpretation is correct. I don't however believe there is any redundancy in the terminology since COPD and emphysema have separate and very specific definitions. I would say that in practice COPD and emphysema are almost synonymous but we should recognize that this is not always the case and there exists the possibility for people to "fall between the cracks" if you will due to the very generalized definition of COPD.

I don't think your being pedantic, I think you're being very accurate in your description of your physical ailments. If you have COPD, particularly with a smoking history and decreased diffusion capacity, it is logical to presume you have some degree of emphysema however to state this definitively is not accurate since it has not been proven unless you've had a tissue biopsy. From the latest research in the COPDGENE study here in the united states, it has been shown that only a minority of smokers with chronic airflow obstruction have CT identified emphysema (~15%), which in this study was defined by by a relative increase in the percent of areas with low attenuation; essentially a density filter that can quantify the total areas of relatively low tissue density within the lung. Inference based upon CT densitometry is pretty reliable though it is not fool proof without examination by a radiologist RE: other lung diseases such as IPF, LAM, PLCH, etc.

thorax.bmj.com/content/earl...

Anyways, some of the best presentations I have seen regarding COPD can be seen at the following links if you're interested in reviewing some state-of-the-art research.

youtube.com/playlist?list=P...

hstalks.com/main/browse_tal...

[O2Trees in reply to droo32]

Thanks droo32. Ive only just now had time to check out some of the talks. Currently started listening to the COPD phenotypes one - Im wondering if it will give a clue as to why i have far less functional impairment than would be expected for my FEV1 measurement (38%), and fact that CT scan revealed large bullae. Normal diffusion for instance. Anyway lots to get my teeth into but quite hard to understand without a medical background! Anyway many thanks and best wishes.

[O2Trees in reply to droo32]

Apologies droo32, didn't spot your comment before. (And sorry for another edit)

Our NHS "socialised medicine", as people in the U.S. who can afford health insurance like to call it, provides all these tests though there are variations around the country.

I have just had spirometry, plethsmography, diffusion and blood tests for O2 sats and to check for CO2 retention at my annual appointment with my consultant - I have them all each year. I have regular sputum analysis via my GP whenever i have an infection.

Have also had a chest CT scan and regular x-rays.

And all for free from our brilliant NHS, which is now sadly being undermined by privatisation and may soon be following the U.S. model which will be a nightmare for poor people. Happy days

[coastal1 in reply to O2Trees]

Agree with all above O2 and couldn't have put it better. " Free at the time of need " is a concept we should hold dear.

[cofdrop-UK in reply to O2Trees]

God forbid we follow the US model. I was born and dx with bronch in 1948, the start of the NHS and I thank God every day for the NHS. cx

[droo32 in reply to O2Trees]

Well I am one of those that has sufficient income to afford excellent health care and in all honesty I would say you have had a much more thorough work-up than I have to date.

I hate US healthcare and wish that we would have switched over to a single payer system as opposed to this Obama Care BS.

[Hidden in reply to droo32]

Hi cheers yer had all that done .. think given my complaint about my last gp inaction there like holding out on me last gp a seen said my lungs have been totaly destroyed and tried to say its from all the drink and drugs i do .. that i might ad have never done ... Its like conflicting information

Since i screwed my last xray thay don't even have them up any more .. think there is a lot there not telling me and thats half the battle

[Offcut]

As you may or may not know I have Restrictive Lung disease and I now blow 350 on a good day I used to blow 650. For those that look at my peak as if I have asthma it would be ok ish. However it has now been proven that when I blow that is pretty much everything in my lungs. This is the lack of flexibility and the scaring. It would be like a balloon in a small box once blown it fills the box and that is it let it go the air is forced out in one big blast but if you take the box away it would be the same but the peak would not be that much different except longer maybe.

I process O2 well but do not get enough in and that is why I am so out of breath once I get past a slow pace of activity.

Hope you get to sorted Daz and keep us updated?

[Hidden in reply to Offcut]

Hi offcuts hope alls well considering .. Have had quite few months DWP seem to think having good FEV or PEV means your tip top .. like really thay should try having lung disease .. last time a seen lung doc said am co2 retainer so assume my avolie or how ever you spell it are bushed

[Offcut]

It seems unless you are visible missing something you are okay. I had one say maybe you should go swimming? But I had to explain that a paralysed diaphragm does not go well with swimming as it causes me to stop breathing and that is not a good place to be when you cannot breath as the ground in a pool is still very wet

[Scooteeder]

At least now I know someone else is as confused as me! To be frank, I'm baffled by things like Peak Flow, etc. They just seem to be meaningless numbers! I wouldn't have a clue what they mean to Doctors, or when a Doctor should act on them...

I have Asthma and chronic respiratory infections (Inc. Chronic Sinusitis). My Peak Flow is generally between 320 and 380, usually around the 350 mark. My best ever was 400. I am well aware that for a women of my age, height and build, it should be OVER 420... but whenever I've had an Asthma Review (which, incidentally is VERY rarely) my Asthma Nurse just records the number as though it is perfectly acceptable, and says no more!

I've had surgery on my sinuses to repair a deviated septum, and stuff that was possibly contributing to my sinus infections... but other than that, things remain as is. I still get infections. I have a permanent dry cough, and tightness in the right hand side of my chest. It is painful to inhale (right side) and the pain extends under my armpit, and over my shoulder. NO clue what this is!

All I can say is that I get the impression that if a Doctor can get away with not treating, or investigating, and therefore saves money - they WILL! Peak Flow, and things like that, only seem to be a part of the picture - and for the life of me, I don't know where they fit in!

[Hidden in reply to Scooteeder]

Hi scooteeder ye is all confusing .. Doc gp treat us like medevil times .. I.e bung few pills at us and say everything fine.

Going of what you say might have infection .. But could be musical pain or ribs playing depending on ya condition

Do you have heart problems with ya condition tacacardea

Yer doc carry on like there is no internet or other source of information .. should be just honest with us

[O2Trees]

Hi daz, sorry to have gone off on one earlier.

And sorry you're still having a bad time. Have you ever seen a consultant? Cant remember if you've mentioned that. Considering all the contradictory things you've been told, its about time you got some clarity. Am i right in thinking you were once told you had bronchiectasis? If so people with this condition can have continuous infections and often continuously take a low level of ABs - usually azithromycin - which can help keep them well. And I saw from a site i looked on that the fev1 can often be normal or near normal with this condition. But please ignore if Ive got that wrong.

It's crazy for you to be told on the one hand that your lungs are totally destroyed, then on the other that you are fine. The tests that droo32 mentioned should give your GP more information and it seems strange that you've not been referred for them.

Hope you can sort something out Daz - this confusion has gone on long enough.