Confirmed COPD today

Hello all , went to have a spirometry test today after failing one at work about a month ago, the result this time was worse, Fev 1 - 75% , fvc/fev1 ratio - 52%. I then had to re-do it after taking an inhaler and it came out as Fev 1 - 83% , fvc/fev1 ratio - 59%. I have to go and see a specialist, I am really scared about my future as I'm only 40.

42 Replies

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  • Hi it's natural to be scared to get such a diagnosis but you are at a very early stage so there is no need to worry overmuch. With your inhaler your lung function is 83% which most on here would kill for!

    You are only 7 points off 90-100% which is just considered a variation of the norm. I was diagnosed with mid 70's FEV1 9 years ago and it hasn't changed in all that time. At this level you will suffer few symptoms. The only ones I get are breathlessness when walking up hills and steps, more severe chest infections, and some tiredness. But I am a lot older than you and some of this is just old age.

    Whilst it is a progressive disease by leading a healthy lifestyle and taking great care of your lungs etc. you will live to a ripe and healthy old age.

    It is a chronic and progressive disease but you are very unlikely to get to anywhere near the severe levels unless you want to live to 120!

    Stay with us here as we are the ones who live with lung disease and please don't google indiscriminantly as you will scare yourself silly.

  • Thank you, I just don't know what to expect , I just think that getting it at an early age surely means I won't make many more years?

  • Why not? Like I said it is a progressive disease but normally very slowly. You are not going to go from very mild to severe in 10 years you know! It is possible but that's the exception and normally those with other illnesses as well, or those with more severe lung disease ie not copd.

    Apart from that there are many on here at a severe or very severe stage (usually those diagnosed at a much later stage) and have been for many years. None of them are planning to go anywhere soon and they still have quality of life. You have lots of good years left yet.

  • I'm a good example of that - I was diagnosed with end-stage Bronchiectasis 10 years ago, and my FEV1 has been in the same ballpark of 26% to 28% for all that time. I just saw my consultant last Friday and she told me that she couldn't be more pleased with how well I've been managing the condition. She also said that if things do start to go downhill there are new treatments coming along soon, so you really shouldn't start despairing.

    It isn't the death sentence that people think it is, you just learn to do things slowly.

  • Well done. It's good to know new treatments are in the offing.

  • Thats great news for you, I think I just feel worse because I seem to be a lot younger than the normal age range ( not that i guess it makes it easier at any age) and I know that i am going to only get worse but from a younger age. I hope they do find new treatments that will benefit everyone.

  • I was diagnosed in my early 30s im now 50 listen to the specialists and the experts (other sufferas) you can keep your self well by ackting on advice you are given. Ask as many questions as you can. my advice exercise as much as you can and try to stay posative. You are not alone and we all get scared about are future at times but you are not your lung disease that is just a small part of you you are still the same you, you were befor the diagnosis stay posative good luck

  • Thanks. It looks like I have got worse in just over a month as the first test which was done by a work health screening van , i had a fev1 of 79% and fvc/fev1 ratio of 59%. By the time I took the second test i was a further 6 weeks into quitting smoking and i had taken up jogging also. My lung function had gone down by 4% in that short space of time

  • Excellent advice.

  • Thanks, just feels like my life is over at the moment, haven't even had an xray yet, they said they will send me for one, I'm scared it may be lung cancer as well

  • Are you in the UK if so you are very lucky to get straight to see a specialist most of us have to wait till we are admitted to hospital dying before we get to see one .I hope all goes well for you x

  • I am having to go private as the waiting list is over three months

  • I hope all goes well for you I think we all get frightened I still do at times you will learn to cope and has others have said it can take years to worsen xx

  • Hi It's perfectly normal to feel scared & worry you won't be here by Christmas. You will I was the same. I have COPD, Heart Failure​ & Atrial Fibrilation. I was diagnosed 9 years ago, panicked came on here & got lots of support, follow lilaclil's advice. There are lots of leaflets, a video & your Respiratory nurse can help. Best wishes Nan

  • It's relatively normal to panic when you're first diagnosed but if you weren't panicking 'before' you found out you have copd, why panic now? Nothing's changed except - you now know more than you did before. That gives you an advantage - with plenty of exercise, a decent diet and no ciggies (obviuosly) you'll be alive and kicking for a long time yet. You're more knowledgable than you were before, that's all that's happened, no need to panic.

  • thanks, my doctors surgery are sending me to a specialist, i'm terrified it may be lung cancer as well

  • You don't mention smoking - I assume you have stopped or the condition will progress fairly rapidly (certainly much quicker than if you stop).

    The most frightening thing is not knowing, it's that "walking through the graveyard in the dark" feeling yet, as soon as someone puts the light on everything is fine! Maybe use the fear to reconsider your lifestyle and make the changes (before finding out that all is [fairly] good, diet/exercise/smoking etc all make a big difference to managing COPD.

    COPD is something we live with but don't let it rule us!

    Take care and good luck with the results

  • Thank you, yes I stopped smoking back in March, before I knew I had anything wrong

  • Roey.Most of us would bite your right arm off to have fev.s half of what you have and we are still rocking on and living life as full as we can.You will not find that many of us have related lung cancer either.The fact that you have given up smoking is a Major step in stopping the progression of copd and age and fitness is well on your side.You can not Fail a spirometry test it is merely an indication of your lungs capacity and function on the day you are tested and like a cars MOT you can treat it as an adivsory to adjust your lifestyle accordingly.and it will aid those that are looking after you in treating your condition.Best wishes mate

  • So can the fev1 change as mine got worse over a month between the first and second test?

  • It hasn't necessarily got worse as your lung function can vary by a few points at any given time and it happens to all of us. You could do another test tomorrow and it would be for example 78%..

    As for lung cancer thick curved nails can be a sign of it but it can also indicate many much less severe things too. Do you have any other symptoms such as a hacking cough, losing weight, coughing up blood, or constant chest infections?

  • I don't have any of those things, my dads nails are similar but not as curved

  • Well I doubt whether you have lung cancer then...

  • Hi Roey

    Please dont get carried away with your thoughts ,we all know the feeling when first given the diagnosis and how scary that can be, but it can be dealt with as lilac has explained ,.and her advice is very good.

    I was diagnosed nearly three years ago and I can honestly say I am far better today than I was then ,,,,with lots of adjustments to my life of course .

    You didnt say but do cigarettes come into question hope not but if so that must be your first problem to deal with ? and that is the big one.

    Take all the advice and help you can and things wont seem so much of the scary thing you see now and at your age you are so able to adjust and deal with it, give us a smile 😂

    Keep in touch

    Best regards

    Graham

  • I stopped smoking in March before I knew anything was wrong, I had a spirometry test for work in April and my FEV1 was 79 then, in just over a month it has got worse and was 75 this time, 83 after inhaler

  • Hello roey123 . Of course it is scary but you haven't actually seen your specialist yet and as far as I can tell no formal diagnosis. It may not be as bad as you anticipate.

    If it is COPD then there is so much that can be done to hopefully improve your lung function. It's important not to think everyone with COPD have the same experiences.

    I have a disease of the small airways. My Fev 1 is at about 30%. I am about the same age as you. But I am managing. So, hang in there. With professinal advise, pulmonary rehab, exercise and healthy eating I don't see why you won't enjoy life to the fullest.

    I wish you well. Please let us know how you get along.

    Cas xx 🌷🍀🌷

  • I have been tested twice and failed both, and also failed the inhaler which i believe rules out Asthma? The practice nurse said it can only be copd or lung cancer

  • Is disease of the small airways different to copd? Sorry I hope you don't mind me asking

  • Hello roey123 .

    Copd and my lung disease Bronchiolitis Obliterans hAve very similar symptoms. I have difficulty expelling air but not with inhaling, and I have air trapping too this is similar. Copd is often caused by smoking or environmental issues. My disease is caused by an autoimmune disease. People with copd usually have a productive cough. I have no cough and no phlegm. The differences are very subtle indeed. I'm sorry if this isn't very clear. And no I really don't mind you asking. I am still learning about a these things. It's good for me.

    Cas xx 🍀

  • Hi. My name is Maira and I live in Argentina. So, I also have COPD. I'm 34. I have never smoked before. I had an accident in 2015, a carbon monoxide poisoning , then I inhaled fire smoke. So, I did a spirometry last tuesday. My FEV1 is 34% , my FVC/FEV1 is 52%. In may of 2016, fev1 was 22% and fvc/fev1 was 56%. No change after inhaler. So, I'm scared too. My FEV1 has improved a little bit, but I don't know, until when.

    I read you have to exercise. Maybe you should do it. I'm still waiting better results.

  • I too following various blood tests, x-rays and spirometry tests was diagnosed with COPD. However following a CT scan my respiratory consultant told me I do not have COPD. It could be late onset asthma or something viral. More prodding and poking to follow. I think doctors can only diagnose on the information they are given but from what I understand a CT scan gives the best results in diagnosing COPD.

  • I haven't had an xray or anything, just a spirometry test that wasn't fully reversed after the inhaler, the nurse said it was COPD. I was given a choice of four hospitals to see a specialist, none are taking any more patients until September.

    I will be looking into going private as I really can't wait that long, it's already been 2 months of waiting. It would appear that the nurse at my surgery left a note saying I didn't need an xray as I wasn't showing any symptoms

  • Hello. And maybe a spirometry test may be too.

  • i am having Scans as I have a lump in my side & shadows in one lung but try not to worry as it only makes my COPD worse. Start gentle exercise as much as possible, sniff Eucalyptus Oil to help with breathlessness eat a healthy diet (easier to say than do) we use about 3,000 calories just breathing with COPD. Have been on the borderline of needing Oxygen for a few years now but working towards not having it. Hope you find some of this helpful good luck

  • Just for information COPD is a umbrella term covering cronic lung disease not all lung problems are classed as COPD emphacimea, cancer, fibrosis, uncontrold sever asthma, bronkiestasis are some that come under the copd banner. And even if your diagnosis is cancer (unlikely) the treatment now is briliant and the survivle rate is high and improving all the time. If you are realy worried try the BLF help line they can talk you through what tests ect to expect. Write down questions as you think of them so you can remember them when you talk to a profeshonal

    Ps please excuse my spelling its always been bad nothing to do with my copd lol

  • I have curved finger nails , not sure if they have always been like that and google says it is a sign of lung cancer

  • It's natural to be scared. When we don't know what is going on. One thing I would surgest is to stay off google. When you see the consultant you will get a proper diagnosis. Take care and try not to worry. I know it's. Easier said than done.

  • A curved fingernail can also mean you have dmaged the nail bed sometime & if all nails were curved then something can be wrong. A doctor/Specialist is the place to go looking up something on line can do more harm than good sometimes.

  • Roey, I was just diagnosed with emphysema/COPD this month. My FEV1 is 46. I'm 68 and quit smoking 20 years ago, and I know I have had COPD for quite a while, so I think that at 40 years old, with FEV1 at 75% and 83% after an inhaler, you are probably on your way to a ripe old age as long as you follow your health provider's instructions, don't smoke again and exercise as much as possible. Don't forget Churchill's WWII speech, which can translate to someone with COPD. "We shall go on to the end. We shall fight in France, we shall fight on the seas and oceans, we shall fight with growing confidence and growing strength in the air, we shall defend our island, whatever the cost may be. We shall fight on the beaches, we shall fight on the landing grounds, we shall fight in the fields and in the streets, we shall fight in the hills; we shall never surrender."

  • Hi Robert. I have had COPD for about ten years. I still! Play squash, tennis and still get to get the best of my 11 year old Grandson. So what I'm saying is keep active and don't let it worry you

  • Hello everyone I am new to this site, I think everyone is scared when diagnosed with copd . I know I was ,I think just staying positive helps it can be hard at times but just try and live your life . Know u can get through all the rough times and being able to talk to others some the same and others worse off , but offer advice and support. Don't google too much u will get dizzy lol. Just ask anyone here they have first hand knowledge. I know I will ask questions when I feel the need....Anyway nice to meet all of you and read your comments of which I personally find helpful ..

  • PS Don't 💨

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