COPD diagnosis

[BenHall1]

My real name is John, I'm an 80 year old guy who considers himself fortunate to get to this age with so little medical defects, they are: very highly controlled Atrial Fibrillation, Osteoarthritis in both shoulders, the left being very troublesome - the right not so, and now a recent diagnosis of COPD.

So, I know where I've been in my life, know where I am - but this whole Asthma/ COPD/ Lung bizzo is a whole new challenge. I'm not even sure I'm getting the right advice from my GP. I suspect ACOS, my GP is firm that it is COPD. My GP has so far had me undertake a Spirometry with Reversability lung tests, as a result she has prescribed a Blue Inhaler Easyhaler with Salbutamol and get much more exercise. That's it !!

I smoked cigarettes from the age of 17 (1961) through to the age of 41 (1985) when I stopped using hypnotherapy. I haven't smoked since. No real medical problems with the lungs until the last 12 years when I suspected pollen/dust/ damp/ mould allergy. I've been a bus driver since 1992 (finally retiring in 2024 aged 74) - so plenty of inhaling petrol and diesel exhaust fumes over the years, not forgetting asbestos dust from bus braking systems. Nowadays in retirement we live on the edge of a village, but right next to an unadopted dirt road and agricultural land and an abundance of hedgerows ( oh ! waiting for spring buds ).

So, I am very much a 'new kid on the block' and am scratching my head wondering where the hell I go from here ....... the thing I find hardest to deal with is how one day I can feel like I'm superman and a ball of energy and within 24 hours feel like I'm crawling out of a train wreck, hardly being able to breathe.

If you are still with me I thank you. I'm open to any comments, be blunt if you like, but the main thing is - I want to learn about my new health issues - and most importantly how to deal with them.

Cheers,

John

[Mellywelly]

Hi john, welcome to the forum. Just wondering if you have had an xray along with your spirometry test and has the doctor given you any medication yet for your copd rather than just a reliever? 😉

[BenHall1 in reply to Mellywelly]

Hi Mellywelly,

Thanks for your thoughts. Chest X-Ray was on 28 Nov 2024, and the same day were Blood Tests. These results both came through on 6 December 2024. Nothing unusual was reported from these Tests/X-Ray. The spirometry test was on 19 Dec 2024 - all sorts of stuff reported on the letter ... what was mentioned was FEV1 was "predicted 91%".

And that's it !! May I ask what you were expecting my GP to do ........ needless to say, no medication (either tablet or liquid) prescribed, other than inhaler reliever .... I might add my GP never provided any instructions on inhaler doseage so I just went to NHS Online and got advice. Basically 1 or 2 inhales up to a maximum of 4 times a day. I have found exercise very difficult, requiring much effort ... mind you the weather since mid December down here in Cornwall has been such that one is NOT encouraged to go out galavanting. Interestingly ......... as with my osteoarthritis and worsening increased pain, my breathing difficulties worsen with a weather change moving from a dry period to one of high humidity and rain. Probably the very hardest domestic task around the home is sitting down, bending and putting on shoes and tying laces. To the point I now plan to buy 'slip on' shoes. This task leaves me exhausted.

Any further thoughts you may have would be welcome .... seems like there is a learning curve ahead. 😱😂😂

John

[Mellywelly in reply to BenHall1]

Hi john, I would have thought if you were diagnosed with copd you would have been issued an inhaled medication besides your reliever, I hope your seeing someone again soon as they've left you up in the air a bit really. Good luck chook 😉

[BenHall1 in reply to Mellywelly]

Thanks. I’ll check back over my file notes on my NHS App. Versus my GP’s hand written notes she gave me.

[Apollomycat in reply to BenHall1]

I'd change your doc John, he seems useless, take care x

[BenHall1 in reply to Apollomycat]

Not that easy in one of the most financially, economically poorest counties in Britain, I'm already on my 2nd change of GP, and I'm running out of options. Unlike more wealthy areas in Britain we do not have GP surgeries gushing around our villages and towns. I've had blood tests which have eliminated the possibility of heart failure, chest X-Rays to eliminate any weird shadows on lungs, and now Spirometry with Reversibility to examine lung functionality. Nothing amiss really, just ACOS or mild COPD. I don't believe it is either - !! ................ just poor NHS at work in a poor county. The way I see things is some 'Woke' Ass has decided to give me a label or two. The only thing not mentioned so far is my age, (80 and on the downhill racer ) and my career work history - the last dumb ass healthcare organisation that went there was a Hospital Trust and my complaints then ended up with Secretary of State for Health in Westminster. That sorted all the dumb asses !! Trust me, I do not suffer fools.

Frankly - the only thing nobody has suggested is being tested for any one of an assortment of allergies. So, I'll go down the allergy line and self treat for whatever I think exists around the home. In the absence of finding any other culprit - allergy is the only one left. 😀

John

[Apollomycat in reply to BenHall1]

Where do you live if you dont mind me asking? I hope you get something sorted out for your problems and I fully understand how you feel, its frustrating when doctors just brush you off. This country Is rich, it's just that they send millions to a lot of countries that don't need it just to keep in with them I suppose but at the expense of people being poorly here. I'm rambling on now, sorry, hope all goes well for you, take care.

[BenHall1 in reply to Apollomycat]

Hiya Apollomycat,

Firstly - love the picture - looks like a Rainbow Lorikeet. Reminds me of my homeland, and where I lived in Sydney and they used to line up for feeding of the top rail of our rear verandah. We used to feed them vet recommended food on occasions. Where do I live now ? ......... down the far pointy end of Cornwall, about 10 miles the Exeter side of Penzance. Tolerable out of tourist season (apart from weather) .......... total hell between 1 May and 31 October, tourist season.

I suppose, what really gets me, is the way and the suddenness/speed with which my breathing ability changes. Yesterday I had a brilliant day, no problems, plenty of activity. Today, a real problemo - trying to breath, and damn coughing ........... !! coughing for the universe. Had loads of activity planned but am totally cream crackered.

Please, don't get me started on my feelings about foreign aid ....... I'll only get a lifetime ban on here. You have a good day.

John

[Apollomycat in reply to BenHall1]

Thanks for your reply John. As for the bird pic, I can't take credit for that as it just appeared, I dont know how to put a pic on my profile.My daughter lived in Sydney for about 15 years, she is back living with me now in london. I went out once to see her in Sydney but found the flight horrific and said never again. I didn't find it much different from our country apart from the weather, same shops, same language but I loved all the brightly coloured birds there. Also not so multi cultural as here but like you say, wont go on about that.

Anyway hope you are feeling a bit better, tahe care and bye for now x

[pasquino]

When is a lung problem you need a specialist,better a private one ,they are older and more experienced,

I am 74 , one lung only, heart problem,PAD....tried salbutamol but no benefit, but we are all different.

My suggestion is nebulize with saline solution and two drops of eucaliptus; walk slowly without overdoing

-no miracles but no side effects-----BTW salbutamol increases heart rate_

exercises , tried and beneficial.

youtube.com/watch?v=pOAL4u_...(Not working as expected?)

youtube.com/watch?v=iIrAUL_...(Not working as expected?)

PS:-BTW salbutamol increases heart rate

best wishes

pasquino

[jackdup]

Welcome to the forum and sorry to hear you were diagnosed with COPD. If your FEV1% of predicted is 91% you are in the mild category and 91% I believe can be in the range of normal. Do you know what your FEV1/FVC ratio is? It should be in the report from the spirometry if they gave you a copy.

You might also want to consider posting to the forum at the link below as there are many more members there.

healthunlocked.com/newsfeed...

[BenHall1 in reply to jackdup]

Hi jackdup,

Thank you for your comments. Yes I did get a copy of the Spirometry Report and the figure you asked about is two readings, one Pre test and the other Post test.

So, pre test is Z+ score = 1.1 and the post test Z+ score = 1.05.

I am unsure if these are the readings you were expecting as there are 4 other readings ... PRE =

Best = 84.7; Trial 2 = 87.7; Trial 3 = 78.9; Trial 1 = 91.1.

Then we have POST ........... Best = 84.5; Trial 6 = 77.5; Trial 2 = 76.6; Trial 5 = 80.0

Thank you also for the reference to the link you kindly gave me. Yes - my FEV1 was shown as 91%.

In a surgery chat with my GP I do recall she did use the phrase of mild COPD. Her prescription for me was Easyhaler with Salbutomol and improve my exercise quite a bit. She advised increase exercise slowly, gently at first and try and push it up.

I guess my challenge now is to stop my mild COPD getting worse.

Thanks again.

John

[jackdup in reply to BenHall1]

The numbers we would need to calculate the FEV1/FVC ratio would be the actual litres per second that you blew. Most reports have a column that lists the predicted or expected value for a person with no lung disease and then a column with the result of your blow followed by a percentage your blow was of the predicted or expected value. I don’t know your height but you mentioned you are 80 so suspect your FEV1 would be in the high 2.xx or low 3.xx and your FVC would be in the low 4.xx or high 3.xx. If you have those numbers from the report it would be helpful.

[BenHall1 in reply to jackdup]

OKay .......... I'm 6ft tall and 189 lbs. (13.5 stone weight), aged 80.

There is a column headed Pred ... in this case the FVC value is 3.69. The FEV1 value is 2.74. I had two "blows" into a device the first was described as Pre-Bronchodilator - without inhaling any nebuliser. The second "blow" was after nebuliser had been administered.

If I'm now reading the correct numbers then my Pre-Bronchodilator Report numbers were = FEV1 = 2.58 while my FVC = 2.95.

My Post-Bronchodilator Report numbers were = FEV1 = 2.30 and my FVC = 2.73. Seems as though my Post Report data is not as good as the original Pre Report data while both are less than what is expected.

The Nebulisation administered was 5mg/2.5ml of Salbutamol via nebiliser. I hope this is the correct data, sorry about that. I would screenshot my copy report but it has come out blurred on my email report.

John

[jackdup in reply to BenHall1]

I’ll have to get back to you tomorrow as I had typed a fairly lengthy reply and for some reason the page refreshed and I lost it all.

[BenHall1 in reply to jackdup]

I am so sorry that has happened to your efforts and thank you for your trouble. Such an event has happened to me with long ones. These days I type a lengthy one offline (Office or whatever) and save it as I go along. Then when finished cut and paste it to HU reply box.

[jackdup in reply to BenHall1]

Sorry it took a bit longer to get back to you then I had hoped but the last few days have been really hectic. Actually if I am typing a long message I generally do type it in Word and then copy and paste it but it ended up being quite a bit longer than I originally anticipated. Did anyone mention that your x-ray showed your lungs were hyperinflated? It is pretty common with COPD. You had mentioned bending over is difficult on your breathing and it is at least partly because when you bend over your abdomen pushes up on your diaphragm making it harder to take a deep breath and if your lungs are hyperinflated it makes it that much more difficult as your lungs are pushing down more on your diaphragm than what would be normal.

I will say that I am not a doctor nor do I have any medical training but have read a lot about spirometry tests and what the results mean. As you are aware from your test, there is a value that is considered "normal", but the results for people without lung disease can vary within a range. When a person's results are below normal it can mean they just have a lower "normal" value or they may have lung disease of one type or another. As part of their diagnosis they also look at the FEV1/FVC ratio and if that is below 70% that is one confirmation of obstructive lung disease. A CT scan is then generally ordered to confirm the diagnosis of COPD. In your case your FEV1/FVC ratio is 87% pre bronchodilator and FEV1/FVC ratio is 84% post bronchodilator. As you pointed out your results were lower post than they were pre which is unusual. Your FEV1/FVC ratio seems quite high to be caused by COPD or a obstructive lung disease and is more indicative of a restrictive disease than obstructive lung disease. I don't know much about restrictive lung diseases, and your doctor, being aware of your other health conditions, may have a logical explanation for your results and how he arrived at the diagnosis of COPD. Not sure I helped much but have attached a link below that gives some detail of the differences between obstructive and restrictive lung disease. I see the writer is an RN and not a doctor so hope it is factual. I believe there certainly are a lot of nurses with more training than many doctors when it comes to COPD.

verywellhealth.com/obstruct...

[BenHall1 in reply to jackdup]

No problems and my thanks for going to the trouble. I shall download and print off the link you gave me. I shall be away in the home counties from tomorrow for a few days so I'll take it with me for educational reading during the road trip of a lifetime ( just jokin' ). I have just eyeballed the link and there is certainly much I can identify with ..... like .... no problem inhaling - exhaling a big disaster. I have a peak flow meter and the very best I can achieve is 370/380 L/min - this compares to about 400 (I think) given my age/gender/height. However, I must say quite often it is only around 330 - seems to vary quite a bit day by day.

[jackdup in reply to BenHall1]

Your FEV1 and PEF can vary both throughout the day and from day to day and can depend on a lot of different things.

[pepparuby1]

Wellcome John

I joined this group maybe 14 years ago I was diagnosed 15 years ago when I gave up cigarettes ( but the damage was done by then) I was given salbutamol but then I found from this group extremely helpful and asked nurse at gp to give me more meds and I tried many because one size doesn’t fit all. It’s a progressive disease and unfortunately mine has got worse and more recently exercise is a killer getting breathless - but I’ve found out after attending pulmonary rehab ( don’t know if you have one) exercise is important as ever. And yes we have good days and not so good days. I had to keep asking ( eventually had private X-ray) to double check I had copd as I felt gp was useless. Advice on here is great good luck

[BenHall1 in reply to pepparuby1]

Hiya pepparuby1,

Thanks for your comments and apologies for the late acknowledgement. Well, its needs to be said, my GP practice is as much use ( with COPD ) as a chocolate fireguard. I have asked for access to pulmonary rehab a month or so ago but I've only had a referral to a local exercise group. Only just started with them so the jury is still out on that. Some peeps who have commented to me have made reference to a practice resiratory nurse ........... yer gotta be joking', ours couldn't even spell it much less send me to one !

Out of interest, I smoked from 1961 to 1985, I've been a bus driver for 32 years ( so plenty of inhaling vehicle exhaust fumes ), and not just that plenty of inhaling fine asbestos dust from bus clutch and brake linings. On a hiding to nothing really 😂

[BenHall1 in reply to pepparuby1]

Hi again pepparuby1,

Well since my reply to you earlier I now have to bite my tongue and apologise for the comments I made about my GP surgery. Why ? because about an hour ago I received a phone call saying I'd been referred by my GP for a pulmonary rehab course. We had an exchange of information and an agreement reached that I'd be included in the next intake in a few weeks time.

Probably one of the best most useful phone calls I've ever had ...... ever !! and, for me it was like a Christmas present. I'm on an all time high. 😂😂😂😂🎉🎉🎉

Thanks for your comments .......... 'may the force be with you'.

John

[pepparuby1 in reply to BenHall1]

That’s brilliant news!!

[suzy-lou]

Hi John. All good advice from members so far so I might add to this by looking at the Asthma and Lung Foundation website - lots of very useful information. Hoping your practice resiratory nurse has seen you and given you a written care plan. Do ask questions if you are unsure - they can just presume you know all about your condition! If they insist on treating you "in house" it might be worth nudging them and asking to be referred to a consultant at some stage for a CT scan to get a better picture of what's going on in your lungs.

I have also been very fortunate to be referred to the Respiratory PhysiotherapyTeam here in Cornwall - brilliant! No stone unturned with great advice and support.

I, too, have struggled to get out this winter only to find that yesterday loads of people seemed to be making up for the wet weather by burning all sorts of rubbish! A few rays of sunshine and a gasp of fresh air and then running indoors for the Ventolin !

Keep well xx

[BenHall1 in reply to suzy-lou]

Hiya suzy-lou,

Thanks for your comments and for the reference to the Asthma and Lung Foundation website, I'll go there. As I've said to pepparuby1, in my part of Cornwall (Hayle), my GP practice is as much use ( with COPD ) as a chocolate fireguard. I have asked for access to pulmonary rehab a month or so ago but I've only had a referral to a local exercise group. My GP said she'd investigate for me but ........ well nothing ! Useless !

Some peeps who have commented to me have made reference to a practice resiratory nurse ........... yer gotta be joking', ours couldn't even spell it much less send me to one !

So, basically from my surgery I've had no help, no pulmonary rehab, no respiratory nurse and no Respiratory PhysiotherapyTeam !! If my GP were in a cage in a zoo I wouldn't feed her !!

So, I guess this bring me to your comment .......... " have also been very fortunate to be referred to the have also been very fortunate to be referred to the Respiratory PhysiotherapyTeam here in Cornwall - brilliant! ". Where on earth did you find out about this asset - the Respiratory Physiotherapy Team here in Cornwall ......... I've obviously not been vigorous enough in my research.

Out of interest, I smoked from 1961 to 1985, I've been a bus driver for 32 years ( so plenty of inhaling vehicle exhaust fumes ), and not just that plenty of inhaling fine asbestos dust from bus clutch and brake linings. On a hiding to nothing really 😂

Weirdly, the worst time of day for me is first thing around breakfast through to about midday - then having inhaled my morning meds it seems to pass and the rest of the day - although tiring - is pretty good. Hey Ho !

Thanks for your views.

John

[suzy-lou]

Hi John, How very frustrating for you. You seem to be blocked at every turn! I clearly live in a different part of Cornwall and hence my referral to the Physio team.

I'm hoping my referral " trail" might help you when you get to see your GP.

Looking back, my referrrals started with my GP sending me for a CT scan following a nasty chest infection which exacerbated my emphysema and ? bronchiectasis. At the same time she requested an appointment for me at our Disrict General Hospital Chest Clinic where I saw a specialist who then sent a letter to my district Respiratory Physio Team. When I saw the physio. she then put me on the list for the local Pulmonary Rehabilitation programme.

Now, all I can suggest is that you keep on to your GP to refer you for specialist help. You could try contacting your local district General Hospital and ask to speak to someone in the physiotherapy department. They might be able to let you know if they have a specialist respiratory team and also any pulmonary rehab. programme in your area . Armed with any information on services you have found ( you won't be able to refer yourself), you can then see your GP. A long shot I know but, sadly, some of us have to be persistent if we think we want specialist help!

Keep well and best of luck - hope the pollen down your way won't be too troublesome! x