This is a more comprehensive version of my story in my bio, but I give you a brief version.
First up, yes I was a smoker for probably over 20 years, 6 months ago I was able to kick them by vaping instead. 2 weeks ago I was diagnosed as having Severe Emphysema after having a plain chest x-ray. Now, 3 days ago I went back and did a spirometer test as is part of the course of determining a baseline with such a disease. What I'm struggling to understand is how I can have COPD when my spirometer results before even using a puffer are well above even the numbers that indicate Stage 1 of COPD.
Anyone who has COPD knows about their FEV1 and FVC percentages. Now according to many reputable sites, Stage 1 COPD is categorized by a FEV1 test score that is greater than or equal to 80% and an FEV1/FVC ratio of less than 70%. My scores are FEV1 - 86.4% and my FEV1/FVC is 90.4%. I just don't understand how I can apparently have 'severe emphysema' when my spirometer results aren't even in the range of stage 1? If I had severe emphysema I should be out of breath walking to the letterbox but just today I walked over 6km in under an hour - no puffer - no nothing. Sure, I got a little short of breath but certainly wasn't out of breath.
The doc gave me a new kind of puffer called Trelegy Ellipta 100/62.5/25 which apparently is for people with COPD with an FEV1 score of 50%. I haven't started using it yet but that just seems like massive overkill to me and the list of possible side effects is horrendous but I realise that in actual fact I probably won't even get one of them but still, no 'rescue' puffer, just bang, straight into the long acting hard stuff.
I'm scheduled for a CT scan in about a week and a half so maybe that will tell more of the story but really just trying to deal with this massive blow of 'hey you're dying, we just can't really tell you when and it's going to be long, slow and painful'
I guess I'm wondering 2 things. Firstly, has anyone been on this Trelegy Ellipta puffer and if so, how did you find it and secondly, has anyone else also had conflicting spirometer readings like mine clearly are?
Thanks for listening to my rant guys, I'm fairly new to all of this and still doing my research and putting things into place mentally, I realise I'm probably in a much better place than a lot of people but I would definitely love to hear about some the ways you have learnt to cope and live with this.
Cheers.
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cre8tiveGuy
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It is highly unlikely that you have severe emphysema with spirometry results like that and i imagine that your CT scan will confirm that,also a likely indication of severe emphysema would be an abnormally low diffusing capacity which also doesn't appear to have been picked up on spirometry,i am wondering if perhaps you have or have had an underlying infection that has been misdiagnosed on the chest x ray?
Anyway as you disappear into the distance on your long walks whistle a happy tune as i am sure you will be happily reassured by the CT scan.By the way if your statement about dying a long.slow and painful death is your own i would consider getting a humour transplant as it may offend some people on here who do have very severe emphysema.
Thanks Skischool, I think you may be right, I don't believe that I have severe emphysema - I couldn't, my lung function is way to high and given that I can walk 6km and only be a little short of breath leads me to believe the diagnosis is either over stated or incorrect.
In regards to my 'long, slow painful death' statement - I understand how that could be misconstrued and possibly even be a little offensive to COPD sufferers. The reason I said that was because that is how it felt to me when the diagnosis came through, and I could have probably preficed that better so at to not offend.
No problem,i am not easily offended,in fact it's damn near impossible out of curiosity please let us know what if anything the CT shows,in the meantime keep walking and laying off the smoking material and all the other stuff one does to survive this wonderful but wobbly world.
Thanks Ski. I'll certainly be keeping my status updated. It's actually been really refreshing to find a community of people willing to be honest, open and just genuine about both my own situation and their own. As I just replied to Kjg, the vaping really only comes into play when I'm drinking - what can I say, I'm Australian and we like a good drink but I'm also very mindful that it's not an answer and need to also get off the vape which I have managed to do for the most part, I guess I just need to learn how to drink withouth smoking/vaping after 29 years - that's not an easy thing to do and will take some effort but I'm almost there, another couple of months and I think I'll be off inhaling any substance other than parmacutical prescribed medication.
I resorted to lozenges and sprays as and when required,that still makes me a nicotine addict which some on here would bemoan,but i felt it was a better and safer alternative to vaping and i also am rather fond of ale and wine and copious amounts of sunshine so i must have inherited some Australian genes along the way?
Hi Tia, unfortunately my GP hasn't even referred me to a specialist yet, I'm thinking now maybe I should push for it.
As for my slow and painful death statement, I addressed this in a reply further down the thread, but essentially, it wasn't something that was said to me, it was basically the way I felt when the diagnosis came through. I didn't mean to offend anyone and I could have probably written it in a much better way so as to not cause confusion. Getting the diagnosis was a massive blow and I guess I'm still adjusting to the fact this is real. Fear makes our minds go to wierd places.
Hi, your results do seem to be very conflicting. If I were you I would wait and see what the CT scan reveals as it may enable you to have a much better idea of your situation. It certainly did in my case. I present very well and although I was very short of breath when I first went to the GP 10 years ago, it wasn't until the specialists saw the CT scan 'they' believed my situation. It seems highly likely in your case you will be happy with the CT scan. I completely recognised your first message as that of someone just being told they had emphysema, you brought back all my head spaces of that day 10 years ago. It is such a shock it feels like the medics have stollen your future. I didn't buy myself anything for a year because I thought it was a waste of money (just a simple insight into my head space 😊) I have been quite surprised by the effect your message has had on some folks here, they are all usually very supportive, but I think you struck into their fears with your unfiltered fears, and they didn't recognise why you spoke the way you did. You notice I have mentioned 10 years since my diagnosis many times... On purpose especially for you. My Fev1 10 years ago was 25% I could only walk around 20ft before I was out of breath. Nowhere near as active as you. And I'm still here, even though I felt exactly as you did on diagnosis. So take heart, it sounds like you will keep active and fit for a long time to come, and as you have stopped smoking, and hopefully will also stop vaping, you will be able to halt the progression of any damage you have done and live a long and happy life. Best of luck at your CT scan when you get it. And the walking will help you through this, both physically and mentally. Wishing you well 😊
Lyndenese - wow - you have just given me an absolute reality check in the best way possible. I can't believe that 10 years ago your FEV1 was 25% and you're still going strong - makes me feel like I have nothing to worry about. I can't thank you enough for everything you have said, to be given such a diagnosis is a massive shock to anyone and now I have all these conflicting results that I hope the CT can put to rest. I can honestly say that there is no way I am classified as 'severe', today I walked 8.5km in just under and hour and a half and I don't believe that I would be able to do that if I had 'severe emphysema'. I'm almost off the vaping, I have maybe 15 to 20 puffs a day at most, I think it's more of mental thing now and I just need to get over this last little hump to be completely 'smoke/vape' free. Again. thank you again for your comment, it really has given me some grounding and belief that I can still live a long and productive life - I wish you all the best also, you really are an inspiration.
I am so glad I have helped you give things a little perspective. I don't think medics sometimes realise what they do, they see it all so often they are numbed to it. I was told by the lung surgeon, when they were trying to get me to have a lung transplant 10 years ago, "I would be dead in five years and if I wasn't I'd be in a big mess." I'm still here, and I also had a pulmonary nurse telling me last year "I wasn't ill, I wanted to be ill." so it's all a matter of perspective, and they are not without error any of them. Talking of perspective... Long, slow can be interpreted as living a long time and a long, slow way to death! Perspective! I think your conflicting results of "severe emphysema and a normal Fev1 reading" are just power for the cause! So don't let their words cause you too much concern, the CT scan will be the absolute proof you need as to how things are. And if you can walk 8k I'm guessing you have absolutely nothing to worry about apart from the knowledge that vaping causes emphysema. I was asked the other day if I could change one thing in my life what would it be... The answer was simple I would never have smoked. If I hadn't I'd be a healthy, active, annoying old lady right now and simple colds wouldn't scare me, or lay me up for months at a time. I hope I've managed to lay those fears down for you and I hope you live a very long, healthy active life... Keep walking 😉
Go to a consultant for advice Keep exercising and eat well, COPD diagnoses aren’t the best- I’ve has stage 1 for 10 years and it’s still stage 1! Don’t stress, some new generation inhalers are preventative and support your lungs. Good luck
Thanks Perrythomas. After the CT Scan I'm going to see a specialist to get a real plan in place and just keep my GP in the loop. It gives me some hope that you're now the second person that has been stage 1 for a long long time and still going well. Thank you for the giving me some hope, it's greatly appreciated.
Its scarry isn't it..I was told at the hospital after a X Ray showed Hyperinflated lungs.They give me inhaler showed me once and of course I couldn't get hang of it.Saw doctor as panic anxious thoughts wanted answers and advise.She told me go home and get on with your life!!! Absolute cow to be told progressive life illness and no support..
Unfortunately (as I've found) finding medical professionals that really care can be extremely challenging and trying to find them after being given such a diagnosis makes it even more challenging. Completely agree that it's scary, I'm still getting a handle on it but everyone here has really given me some context and hope that life can go on without to much reduction in quality of life.
Hi RedSox. Correct, the radiologist who wrote the report for my x-ray stated it was severe emphysema. What I don't understand is how it could be classed as severe when my spirometer results say I'm not even stage 1 COPD. My understanding of severe emphysema is that you'd be breathless most of the time and would possibly even be needing constant oxygen to get through your day, but here I am being able to walk 6km and only getting a little short of breath. It was my GP that prescribed the Trellegy, like I responded to Tia below, I think it's time to push to see a pulmonologist, something doesn't add up here. I know I have emphysema or some form of damage, you can see it ever so clearly on the x-rays and I'm sure the CT will confirm that unless of course it is something else but regardless my next question will be - how can my lung function be so high then.......?
Not to my knowledge Comley1964 - my mother did say I had Glandular fever but doesn't remember me ever having pneumonia.
Hi I was diagnosed with copd 16yrs ago and coped very well only thing I had problems with was inclines carry on like normal enjoy your walks nothing beats fresh air.As you get older it does effect you more I’m almost 70 and find it a bit restricting but don’t think your I’ll and try to carry on as normal just don’t give up I’ve just battled cancer and come out the other side so be positive
Discoureged - thanks so much for your comment. It really does give me some hope that this isn't the end of all things and whilst I get there will be some sacrifices your story gives me a lift that life isn't necessarily over, it just needs to change a little to accomodate my condition. You're positivity and story gives me hope and that's the best gift someone can give so thank you.
Give up the Vap this could be effecting the results. Vaping is not as safe as you think. I have Severe COPD/Empysema Fev1 and I get out of breath just dressing myself. Also I am using Trelegy which I find useless. Signed myself up to Synexus Clinical Trials maybe they can sort my breathing problem And inhalers
Completely agree Kjg - Vaping isn't as a safe as it's made out to be but it's still 90% better than smoking tobacco and all the other carcenagetics that come with it. I've all but given up the vape, it's only when I drink that I feel the need the strongest and then my resolve weakens and I'll have some puffs of the vape to pacificy the desire but I won't be vaping all night long, just 3 or 4 here or there to tell my brain, yep - it's all good. I'm a fairly intelligent guy but giving up the smokes has been the single hardest thing I've had to do. I know all the reasons I shouldn't, watched my father die of lung cancer and still, the best I can do after 29 years of smoking is getting on the vape to give them up and it has gotten me off the real bad stuff but I completely understand what you're saying. It will take a bit of time but each time I obstain from having a vape the closer I am to giving that up too. Thanks for telling me about Trelegy too, I don't believe it's suited to my current diagnosis which I believe is either incorrect or over inflated but I guess we'll find out in about 2 weeks Please let me know how you go with Synexus - I'd be very interested to hear how you go.
I was diagsoned with emphysema by a GP with a stethascope. He did that by determining that I had bilateral reduced airflow and a X Ray to follow and was prescribed Duovent. I never had a CT Scan until now being investigated for shadows, that's another matter.
I was reffered to Respiary Consultant who did a COCKPIT Pulmonary test which is just that - A cockpit set at 80 degree F and a variety of test are performed,.
I your GP has been told you have severe emphysema then he/she has done nothing wrong. -
I have never had a CT SCAN for COPD
Your post is confusing you sad and I quote "My scores are FEV1 - 86.4% and my FEV1/FVC is 90.4%. " - My first thought is why are you haveing a CT SCAN at all as you on those numbers have Mild COPD.
You say you are on Trelegy Ellipta and mention no other. Mine is moderate and I am on Fostair, Ventilin and Atrovent.
First like and CD test spiro test can vary, I would not have thought from severe to mild and you are seld diagnosing and iMO not understanding,,
Welcome to this forum and take my advice, wait for results of CT Scan as you see a conflict with spiro and X Ray results...
Oh and iMO you should stop vaping - You are not getting tar but you are puffing fluid on your lungs -
I never implied that my GP has done something wrong, I understand he is just going off what the radiologist report said about my chest x-ray but my spirometer results directly conflict with that diagnosis. Also you've mentioned that after quoting my results that I have Mild COPD, I think you need to have another read of my original post, if you take my results and directly relate them to the percentages that indicate stage 1 COPD my results are outside of that range meaning that I don't even qualify as having even Stage 1 COPD. I don't quite get how you think that is confusing - it's 2 measurements and 2 numbers.
I also didn't mention any other medications because no other medications were prescribed other than Trelegy Ellipta. I don't quite understand why you think I'm self diagnosing and not understanding, I'm simply applying my spirometer results to the industry meauserment for determing COPD, so I think you may need to be a little more diligent in stating things like that in the future.
Just in closing, thank you for taking the time to reply but perhaps in the future you could read the original post a little more closely and just choose the way you phrase your comments and pay attention to grammar as parts of your comment were difficult to read and understand. I wish you all the best and thanks again for your input.
First I never said you accused your GP of doing anything wrong. I agree your FEV1 - 86.4% conflicts with the X RAY and I said so.
Second COPD is measured mainly on FEV1 score and yours was FEV1 - 86.4% - That's why I said what I did. Also you are only on one medication. So your spiro of FEV1 - 86.4% is not severe and I never questioned the X RAY. I am posting after this post the gold standard of diagnosing COPD and I hope this will help.
You took exception to my "self diagnosis" comment for which I apologise, reading both your post and mine, I can see why I said that but could be wrong, hence the apology.
OK to your rather rude comment on my grammar I have to say, my grammar is fine but failing eyesight makes for mistakes. I have (Age Related Wet macular degeneration) for which I have injections in my eye every month. Even so grammar policing - if you think that is OK, then carry on..
The link shows the Percentage of predicted FEV1 value ane shows which values = The stage of COPD.
Anyway I wish you well and hope your contradictions in diagnosis are soon resolved.
Thanks for that Ern. Below I've posted the text from the link you posted - FEV1 is only used to determine severity IF your FEV1/FVC ratio is below 70% mine is 90.4% so my FEV1 has no relevance.
This is directly from the link you posted:
Your FEV1 score on its own isn’t used to diagnose COPD. A COPD diagnosis requires a calculation involving both FEV1 and another breathing measurement called FVC, or forced vital capacity. FVC is a measurement of the greatest amount of air you can forcefully breathe out after breathing in as deeply as you can.
If your doctor suspects that you have COPD, they’ll calculate your FEV1/FVC ratio. This represents the percentage of your lung capacity that you can expel in one second. The higher your percentage, the larger your lung capacity and the healthier your lungs.
Your doctor will diagnose COPD if your FEV1/FVC ratio falls below 70 percent of the predicted value.
Here is also a link to the GOLD standard (Global Initiative for Chronic
I simply give up/ A Spiro can diagnose COPD before you get symptoms such as a flare up.
With your stats and just one medication prescribed, I wonder why you posted here when you seem to know all the answers.
A CT Scan is only used after an X RAY has failed to pick up COPD - I understand you are concerned about about X RAY showing severe Severe Emphysema and Spiro showing your stats are fine. In fact a SPIRO can pick COPD before symptoms such as a flare up..
I will end by FEV1 the best indicator, your don;t agree, fair enough..
Your title to this thread Emphysema And COPD says it all - You can't have both because COPD is just an umbrella term for Emphysema and other nasties such as Bronchitis......
Anyway good luck with your CT Scan - After decades of Emphysema I never needed one. Tests by GP and Chest Clinic managed to diagnose Emphysema and scarring.
For what it's worth the fact you are an Australian is not an excuse for drinking too much and then vaping, let me say I understand where you're coming from, I'm a Brit living in Canada and for years used the fact I'm British to justify my alcohol use. May I suggest a full and open discussion with your Doc. For the most part Doctors only want what's best for you and they can help more than you know. Alcohol will kill you long before any lung problem you have... Ok so that was my 10 cents.. sorry.
Thanks for that Pecede. Just to be very clear, I wasn't using the fact that I'm Australian as an excuse for drinking too much, I was making a connection between being a drinker and smoker for over 20+ years so after all that time to drop the ciggies for vaping I think is a great achievement and I"m working on kicking the vaping which I have almost done. I feel that maybe you've gone too far away from the original reason for my post and just picking little bits out to make a point but I respect your point of view and thank you for the comment.
Hi Like you I am on the Trelegy inhaler which I understand is quite new. It replaces two separate inhalers which was a chore. I have COPD and bronchiectasis which was confirmed by a CT scan. Everybody is different and the one thing we do have in common is the need to be positive about keeping well and keeping fit and mobile.
Thanks Ssafa - Trelegy Ellipta is very new, have you had any side effects from the Trelegy? How long have you been on it?
I'm trying to stay positive which is hard for me because I'm a realist, some people see the glass half full, others the glass half empty, I just see a glass with water in it. I'm making changes and hopefully, fingers crossed, this affords me a long and prosperous life.
The Trelegy seems to be working, its easier than using two which I did for some time. I don't have any side effects though its only three months since I started. Everyone is different to how they face up to health issues I m an optimist and don't look back on years of smoking etc I look for ways of managing how I can keep any risks at bay.
I hope all goes well for you, I do believe that your CT scan will enable the consultant to diagnose Bronchiectasis. Its not a nice thing to look at but sometimes seeing something makes it more real and emphasises the need for positivity.
Thanks for that Doubledown - brilliant find. Seems I'm in the category that the article talks about. I guess in one way I am luckier than most but I still completely understand the struggles and changes in life that this disease imposes on us.
Hi RedSox. Not being nosy at all. It's complicated because I had other complaints which Emphysema conflicted with. Mainly inhalers like Fostair which I now take,, I have heart rhythm problems like AF and even VT and SVT - Formoterol the heat of long lasting inhalers like Fostair made my heart rate hight,, So for a while I shelved that,
I started with mild Exacerbationsome 30 years ago and was given Duovent inhaler which like Combivent does not exist anymore.... I smoked and I was overweight and went worse - I was given Budesonide and Salmeterol ... I was getting worse and at hospital was given a three week steroid tolerance programme. I took 8 Prednisolone a day for three weeks then cut of with no does lowering - it hurt.
Anyway I stopped smoking Cold Turkey and shed 7 stone - What a difference that made...Although my Emphysema had got worse, I was more mobile - I was before but huffed and puffed. yes I still got Exacerbations but my rescue pack sorted that out..
So for twenty years or more my Emphysema was there but under control "relatively stabile " summed it up well, in part because I could cope I suppose.
I went abroad every year but the last but one in Corfu I was ill - I went to Zante the year after but realised by flying days where over. My SPO2 stats while flying was between 82. - 90 .
"Still I was "relatively stable" until last year - I tended my garden with my wife, I did get gradually worse - So we don;t have to carry watering cans I paid £420 .00 to have an outside tap fitted - so this year low maintenance plants and a hose pipe... Still better than nothing.
I short I put my 20 or so managed years down to stopping smoking, losing weight and trying to keep going and taking all my meds except Fostair which I am now back on, I don't like it but it helps.
Hope this helps RedSox but as you can see it was a combination of stopping smoking ect that I got a stable time...
I have worsened this last 2 years but I had scars on my lung which after all these years are being investigated,,,,, lastly I did not use Ventolin as my main reliever, I use Atrovent - IMP more effecting for COPD type diseases.
Anyway after this essay I wish you and yours well and feel free to ask what you like anytime, not being nosy at all.
Thank's RedSox amd enjoy your domestic exploring. I started that last year. Nowhere near as large as the US, but at my age England, N Ireland, Scotland and Wales is enough. LOL cheers
Back for an update. Had my CT Scan on Tuesday and spent the next 3 days only imaging the worst - the dreaded 'C' word. Saw the doc today and no cancer. The weight that released off my shoulders nearly made me fall off the chair - a relief I would never have believed possible unless you've been in that situation. Interestingly enough the CT scan did pick up that I also have severe osteoporosis which was quite a suprise to me but that's completely treatable and is the least of my concerns. I do need to have a bone density scan, but it's basically one injection every 6 months and that will stop it declining and also help restrengthen my bones. I'm maintaining a healthy diet (well lunch and dinner as I haven't eaten breakfast since I was a child), still walking 7km's a day or cycling for 15km, and just thanking whoever is up there for watching out for me. Waiting for that CT scan was hands down the worst 3 days of my life, I couldn't eat, sleep and I could barely function. Now that I have a definitive diagnosis of severe emphysema I can just move forward and try and keep pushing my lungs to the best of their ability and just maintain making smart choices. At only 43 it's apparent that because of my slender build all of my bad choices have taken their toll earlier than expected or maybe it's just the way it was meant to go but at the end of the day, it seems I have a lot more years ahead of me and although I know my breathing will decline it won't stop me from being from who I am - I just have to adapt and move forward as alot of you have certainly done.
I certainly won't be a stranger on here as almost everyone's stories and support have been a real strength for me so I thank you all for that.
Hi cre8tiveGuy, your story seems quite similar to mine. I was getting breathless the last few months and the doctor referred me to a cardiologists for some tests. One of them was a ct scan of lungs and heart which he had done on advise from respiratory team (who I havnt seen yet). I was in total shock. I'm 42 year old female and was told a have emphysema. This was about 2 weeks ago. Still in shock and have an appointment with the respiratory team in middle of April to find out severity of it. It has not shown on x-ray yet so I'm gathering it is mild at present. But I'm just guessing. Last week I went for a spiromertry test which showed I also have moderate copd. I always thought emphysema was copd but the doctor has said I have emphysema (at what stage I don't know yet) and also moderate copd. My results were 60% on spiromertry test. I specifically asked if I had emphysema and copd and she said yes. You can have moderate copd and mild emphysema. It's all so new to me. Now with the covid 19 scares I just hope my respiratory appointment in April isn't cancelled, as alot of my other appointments have been. It's such a shock, isn't it! The gp has put me on encruse ellipta inhaler. One puff lasts 24 hours. Apart from that I know nothing else. I do believe that emphysema is in the mild stages if not yet showing on an x-ray. I'm struggling to quit smoking but will get there as I have a 7 year old to look after. If u don't mind me asking what advise have u been given from your respiratory team about managing emphysema. I'm scared as my father was diagnosed at 42 with emphysema and passed away at 50. Although he continued to smoke and drink quite heavily after diagnosis. Anything you've been advised would be welcomed as I've just been told these results and not yet seen anyone to discuss them. I'm worried sick. Is the inhaler working for u? At present I am breathless just making a bed or walking uphill. Hope to hear from u xx
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but I'm also very mindful that it's not an answer and need to also get off the vape which I have managed to do for the most part, I guess I just need to learn how to drink withouth smoking/vaping after 29 years - that's not an easy thing to do and will take some effort but I'm almost there, another couple of months and I think I'll be off inhaling any substance other than parmacutical prescribed medication. 
Emphysema
Emphysema 
Emphysema diagnosed today
Misdiagnosed with COPD
Moderate COPD longevity.
