British Lung Foundation
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Worried out mind

Dear all, on Tuesday I had Spirometric test as although I have Asthma and gave up smoking I'm occasionally breathless. I do cycle a long way and was running marathons until 5 years ago. The consultants exact words were he does not think I have emphysema my FEV 1 score is ridicules low. I'm 44 and 6.1 and not overweight if this matter. His exact works were. "His sprirometric technique was inconsistent and difficult to interpret. (FEV1 1.47, 33% and FVC 5.53, 96% with a ratio of 0.27). My Oximetry on air measured 98% and pulse was 90 with a respiratory rate of 12. I have suffered from Astma since I was 11 it was felt this could effect Fev score. I'm so worried I'm making myself sick and I cant stop thinking about leaving my daughters alone. PLs help someone, what score is important FEV or FVC. happy to talk on phone if anyone will. I don't feel like I can wait until Monday I'm based in Kent.

Please help someone I don't think I can have another night of worry,

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Dear all I have just done a peak flow test the basic one, It was nearly 800. Surely if my FEV1 was that low this would be effected?

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I wouldn't worry too much I've never ever blown half that much and I'm 50 now with a few breathing problems and been doing peak flos etc since I was 6

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Seriously Paul I'm really worried, Is peak flow a good indicator for Emthersema , why is FEV 1 so low when my other rate is good.

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I really dont think youve got much reason to worry, youve already made the most important change by stopping smoking. As long as you keep as active and healthy as anyone else should you'l be okay, you havent been diagnosed with any of the more worrying conditions and as someone has already advised i would have another spirometry test done if your GP thinks you need one.

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Thanks Andy.

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Hmmm... tricky one, and no one here will be able to sort it out. I think the key is in the comment “his Spirometry technique was inconsistent and difficult to interpret.” Have you done Spirometry before? A lot depends on technique and experience. Ask to do another one. And talk to your GP.

All the best

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Ive never done a Spirometry before. Is it the combined FEV and FVC score?Can anyone pls help me translate those scores. I did speak to a doctor at A & E and 111 he felt the results were null and void pretty much as I had Asthma, Surely if he felt something was bad he would of mentioned on letter. What is worse anyone emphysema or COPD? Any advise or encouragement would really help.

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I fully understand your concern and panic, many of us here have been there, myself included. Emphysema comes under the umbrella term of COPD along with Chronic Bronchitis. So Emphysema and COPD are defined as the same condition. I would think that you would have been told if you had COPD. Given your young age I think that it is unlikely that you have a diagnosis of COPD although there is a rare genetic condition called Alpha-1- Antitrypsen Deficiency which can be determined by a simple blood test.

Even if you are diagnosed with COPD, it is not a death sentence by any means, regardless of your diagnosis if you smoke then quit ASAP. You are possibly at "panic stations" (anxiety) which will only serve to make your breathing worse. The defining of severity is called the FEV1 followed by a number of %.

I was diagnosed with Severe Emphysema about 2 years ago and my original FEV1 was 37% at the time and to this day I still work full-time and can walk 5 miles. Last March, through exercise, I had increased my FEV1 to 50% . I will be 68 this year. If I can improve by this amount so can a youngster like you, if you have COPD.

It is natural to be worried about this, but really, there is no need to be. You will see your daughters grow up, and see your grandchildren too.

The real important thing is if you smoke then quit by whatever means are available to you. COPD is not the only disease caused by smoking, as I have found out by experience. Please believe me that all this is true, stop worrying, you will only make yourself ill otherwise. Others here will tell you exactly the same, tomorrow maybe, many here retire for the day a lot earlier than you will be.

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Thank you, ive just woken and starting to panic like last night. Thanks so much for your reply, It means a lot.

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2 greys so it is just that Fev 1 % that I have of 33 which is important? As my FVC score is quite good,

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Lots of it is technique too, I didn't do well on my spirometer but when I did a full lung function test and mannitol challenge did really well. So don't get worked up about. Speak to the dr Monday and maybe ask for a lung function test, but I'm sure there's an explanation. COPD and alike really has to be diagnosed via a CT scan anyway.

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Thanks, I will go back to bed and try and sleep.

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Dear all, I managed to get a few hours sleep but I’m sorry really struggling. Surely if I had COPD my lungs would not be clear, they were checked so many times and oxygen levels good too.

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Hi Wjohns,

I know how you feel, I've been there, Try to relax, concentrate on your breathing, long slow deep breaths through your nose, tell your brain that these are only thoughts, they are not real and can do you no harm, tell your brain to get rid of the thoughts to float them away. Keep practicing this and it will help. works for me whenever I have a panic attack. Good luck. by the way I have PF, I take plenty of exercise and try to lead as normal a life as I can.

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Hi thanks I will try? What does Pf stand for?

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It's Pulmonary fibrosis

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Thanks I shall try your technique for panic attack.

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its a lot more complex than just fev1 that is only the first secont of the blow oxomiter at 98% is fine how did he test you if it was hand held and not linked to computer it can be all over the show

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HI yes it was a hand held one linked to a machine not a computer, I'm so sorry everyone but I'm going out of my mind. He looked at my results and said "he did not think it was Empersema" SibKev can you explain a bit more about results pls? When I google Fev1 and get my result it basically suggests I have hours to live. So do you know much about these results pls could you explain a bit more.

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fev 1 is the air you blow out in first 1 second of blow the most important thing is gas exchange which can not be done with a spiro at 98% oxegen in your body you have little to be scared of

the test he did is not accurate enough you need a propper lung function test linked to a laptop hand help are sometimes old and not calibrated for a long time so dont get to worked up about it my home spiros have been pants loads of time and on lung function they are fine lots can go wrong with hand held they are best used as a chq from day to day it wld be better if i knew what you had

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Hi Sibkev thanks for this, the machine looked like this one (ML3500 Spirometer) the consultants exact words were he did not think I had emphysema from looking at results. He saw one think that he was not sure about but said it could me my asthma. He also said my results where "spirometric technique was inconsistent and difficult to interpret (FEV1 1.47, 33% and FVC 5.53, 96% with a ratio of 0.27). " Thanks for this what are the key numbers here does FEV1 33% mean I have COBD I just don't understand this as from reading Google results it sounds very bad. Whats the other numbers do they help.

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you can get bad readings like this cus you have not been used to machine when you blow i.e. shape of mouthbit

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Hi please dont get yourself worried you will only make yourself ill .I have had copd emphysema for 14 years .Had loads of procedures over the years and have just been doing some CELEB trials at The Royal Brompton Hospital in London .Some very invasive scans and tests and i am down for an operation . i am 70 years old .If you are fit ,dont smoke you have nothing to worry about. Your Doctor should explain it all to you ,make sure you ask lots of questions. Good luck .xBarbars

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I was very fit until 5 years ago and have given up smoking for good. I'm really hoping its just my Asthma playing with results.

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Hi if this makes u feel more at ease all your stats are gr8 .. ie oxygen pulse etc... if you where so Ill your doc would have you in with a consultant quickly plus you would be feeling signs of illness .. you sound like your pretty fit and believe me I'm same age as you and give me half your stats and I would be happy but seriously you will be fine as I was given 2 hours to live exactly a year ago there was no coming back I was on ventilator for respiratory failure plus also besides that had to then have blood transfusion due to low platelets so from being told I wouldn't survive to being here a year on is a miracle so just live life to the full and enjoy your lovely family ..I'm sure it's just a discrepancy or could be due to another minor illness not detected but I really feel you have to look at the other factors that everything else is gr8 please keep us informed on your results if you wouldn't mind .. good luck and be calm xmelxx

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Thank you I'm sorry it probably sounds trivial all this. I just don't understand that FEV 1 level as when you google it this suggests it's all doom and gloom. I'm sorry your having the issues you are and I really hope your OK and continue to be so. I can't help feeling like this it's just the letter from consultant is almost encrypted to me. Again thanks for your reply. Its the not the oxygen or pulse that worries me its that's FEV 1 level. 33% is horrendous. Again I'm sorry for this I am trying and listening to all your replies does help considerably.

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Honestly do not google things, whatever your symptoms if you google the. It's terrible. Example sometimes my blood pressure gets really low, google it and it suggests my organs are collapsing! They're not I'm fine I just have low blood pressure sometimes.

There's so much more to it than the Spiro test and for accurate readings you need to do an LFT hooked to a computer anyway and a Mannitol. If your dr thought there was a problem you'd be in hospital now.

I have asthma but with good diet and exercise you can deal with it mostly very well, lots of vitamin C and water. They'll need to do the full tests in a hospital environment to get your readings but your oxygen SATs are great so there's definitely no need to worry.

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Wjohns, I know exactly how you feel, as I have emphysema with a low FEV 1 43%. It went up a bit using Anoro. I quit smoking 20 years ago and probably had this all this time but was diagnosed 1.5 years ago. I use Procaz but I use a simple technique that for me calms me down when I start panicking about breathing. I breathe (not deep or heavy) through my nose and out through my nose, keeping my mouth shut. I find it helps. It's called the Buteyko method. It's safe and might help.

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First as others have said don't Google too much as you will find websites that have statistics from years ago that are no longer accurate today. While there is no cure there are new inhalers that help improve breathing but also slow the progression and help to prevent exacerbations. They have also come to realize the importance of exercise so pulmonary rehab has greatly improved the quality of life of those with COPD. There was one person that posted the other day that he has had COPD since he was 40 and he is now 80.

FEV1 measures the amount you blow out in the first second so if you were not blowing forcefully the first second your FEV1 could be very different from what is shown above and the fact that they mention inconsistent technique could mean that that number is not accurate and again as others have mentioned a full lung function test should be scheduled. Also they generally give you a test before using an inhaler and another after you have used Ventolin to see how much difference it has made. I believe if your results improve significantly at least part of your problem may be attributable to asthma and not COPD as asthma is reversible and COPD is not. There is generally some improvement even with COPD but not as much, so a full lung function test would reveal how much improvement you would see with a Ventolin. I don't have asthma so perhaps someone that does would be better suited to address the before and after in a lung function test.

Your FEV1 can vary at different times of the day as well so that 33% is not a number that cannot change and again given the comments about inconsistent technique makes that number look very questionable.

Can you go up a flight of stairs without having to stop to catch your breath at the top? Unless you have been exercising to improve your endurance you would likely be quite short of breath after going up a flight of stairs if your FEV1 is indeed 33% but again perhaps someone with a similar number can better address that.

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Hi thanks so much, i hope your right about inconsistent test. I went for a 5 mile bike ride this morning yes I can walk up a flight of stairs. Thanks for your answer so much you e all been so generous with time and understand.

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If you went for a 5 mile bike ride this morning and were not struggling with breathing I’d be very surprised if your FEV1 was actually 33% but again a full lung function test should be done so you have a more accurate result.

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I hope your right and thanks.

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Hi that’s why that score has depressed me so much, I’ve had a lot of bad Luck with health in past 5 years and this was last straw. Btw what is a full lung function test? How easy quick is it. Is this a CTI?

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A full lung function test or Pulmonary Function Test measures all aspects of your lungs function including gas exchange which shows how efficiently your lungs are able to transfer oxygen into your blood. It consists of a spirometry done without any inhalers and then another after using an inhaler to see the difference, but the test goes far beyond just the spirometry portion to measure and give you a much more full picture of how well your lungs are working. You sit in a little booth and do various breathing maneuvers. I think it takes about a half hour to forty five minutes but don't know if I have ever paid attention to the time it has taken. Here are a couple of links.

nhlbi.nih.gov/health-topics...

hopkinsmedicine.org/healthl...

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Thanks and do you get results same day? Thanks Jackdup.

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I always do but some places want to send them to the doctor first to discuss with patient.

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You are welcome and I hope you come back and post your results or let us know how you made out.

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Could you consider not worrying about figures and just go with how your body feels (not your mind which is in the grip of panic). As for Dr Google, he'll have you dead, buried and your clothes washed in three clicks of a mouse! I wish I had some of your stats BTW.

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I know I am sorry a lot of it with me is anxiety and depression. I do know in grand scheme of things I’m lucky but it’s hard to see that sometimes.

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Hi, I too blow low readings when using a peak flow, as my lungs never fully developed due to operations I had when I was a child. I'm almost 60 now and still enjoy a good life.

I also have asthma and use a fostair inhaler twice a day. As long as I stay wrapped up when I go out in the cold weather, then i seem to be okay.... Like a previous comment said.. ' Don't believe everything you read on google'

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I'm so sorry to hear of your concerns and understand how worried you must feel but I don't think it's as bad as it looks.I'm not medically trained but I do get the impression it's not quite so bad.Could u go to your GPS and speak about it?You need a professional to help you.Thinking of you,Sandy xx

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Thanks Sandy, I’m hoping the Fec score was wrong.

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Hi the last time I went for a breathing test all the way through the person conducting the test kept saying things like this is the worst result I have seen for ages and I can't believe you look so well with these kind of results not the most professional of practitioners . I finally took the last test where I had to take in and out breaths and on the exhale was shouted at to keep on going keep on going , so much so that I passed out , I left feeling lousy thinking how much longer do I have etc. After a while I figured what the hell they don't know everything I can still take the dog walking I can still climb the stairs and I can still enjoy a glass of wine or three , don't let the so called professionals freak you out , they don't know everything we are all different . Listen to what is said , maybe compare opinions but also listen to your body you know how you feel , don't whatever you do despair. Think positive and try to stay on top. Best Wishes.

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Hi Wjohns. I am going to be very blunt with you my friend, and I hope I am not about to offend you or make you mad. What you are worrying about is numbers, just numbers. What is want to now is 'How do you feel' you say you are occasionally breathless, so is everyone on the planet, even kids get short of breath sometimes. Are you able to do the things you normally do? Can you have a bath or a shower with no problems? Can you walk up the stairs with no problems? This may all sound a bit harsh, but I really think you are worrying before you know if you have anything to worry about. If these numbers worry you then go and see your GP, tell him/her that you are worried and why and ask them to talk it through with you.

I am going to stop nagging now. Please let us know how you get on, and try not to worry, I have no idea what any of my numbers are and I don't want to know, the only reason I know that I am stage 4 is because a nurse let it slip. All I want to know is how I feel, I let my body tell me how I feel.

Take care my new friend, and breath easy xx

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May I suggest you get help with your anxiety/ depression and not focus on those numbers.

I am 73 and have COPD Classified as Gold D which I believe is severe. Diagnosis scared me at first, being told you have a chronic illness which will just get worse made me paranoid. However, after the initial shock and facing the reality of that diagnosis I thought “ I could still get run over by a bus”.

IT IS NOT A DEATH SENTENCE.

It’s a nuisance and you just need to listen to your body and do what you can.

The bigger problem is the anxiety and depression. This colours everything you think and do and is far more crippling than a “ physical” illness. I know having suffered this all my life.

So, get some help with your anxiety and get on with your life and enjoy your family.

Go well.

❤️

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I am on anti depressants obviously not working. I am trying it’s the thought of COPD at 44 very hard.

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You need to discuss your fears with a Dr. Pills alone will not irradicate these dark thoughts which are crippling you. Why has your age become such an issue, many children are born with cystic fibrosis but lead a happy life.

it is your mental health which needs addressing, you are looking at things from the wrong angle.

Please seek help before your feelings affect your precious children.

Sending love and support

JJ

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Dear all, I just spoke to the consultant he rang me. The test was wrong he expects the tests to be better on Thursday when done again. He feels that they will he at least double that and does not think I have COPD, although my lungs are not ideal he thinks it’s probably reversible if I continue to stop smoking and worrying. I am going to stay in this forum as I want to stay in touch and of course I still have pretty had asthma. Thanks so much and sorry for being a pain in the bum.

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You are allowed to be a pain in the bum. We all are at times - when we feel lousy it all gets out of proportion. The comments on here have been (as always) spot on. These people on here are SO supportive and knowledgeable and have all been in the place you are, and will continue to duck back into that place on a bad day. just keep fighting and listen to all of the above. I don't often comment or post but it really helps me to read what's been said. You are and will be fine :-)

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Thanks.

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Hi. I'm 72, diagnosed with emphysema 1996.

I use an inhaler twice a day, avoid pollution as much as I can.

Stop whatever I'm doing if I'm short of breath!

Still here!!

Stop worrying !!!

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I’m am worrying less and I have another appointment on Thursday whee as I say the consultant thinks my results would be considerably better. What annoys me is that if he knew. The test was wrong why put it on my letter when he should know everyone Google’s things these days. I guess he did say results were inconsistent on letter I imagine I should of concentrated on this. Lora of people have posted about my lovely family I will post some pics soon.

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Consultants aren't always from the same planet as most of us!

Some of them say or write things without realising the consequences for their patients, and the worry they cause!

We forgive them, because having so much knowledge is for our

benefit!

The main thing is, don't think you can get the same knowledge and experience from Google.

Trust them, make notes, even ask if you can use your phone to record questions and answers.

No good getting home and thinking "What did they say?"

All the best.

Oldscouse.

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Dear all, numerous posters asked me to post my results of my spirometric scan once I had done it again and others quite rightly suggested I work on my mental health. I had my spiro test tonight and I was way above average it was not Fec 33 percent in fact it was over 100 percent. However I will never forget the support you all gave me whilst I was in a place of anxiety depression. It was basically a balls up by the consultant who sent out a letter and my mental state which at best is fragile. I have read every post and although I knew I was over indulgent I will never forget how kind, Sincere and brave some of your posts were.

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