Does that not make my emphysima moderste not mild stressing out here . Consultant said mild. Advise any one
Just check my fev1 is 79: Does that not... - Lung Conditions C...
Just check my fev1 is 79
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Thank you so much all new scared to death..what does it mean fev1 sorry to sound stupid.. am I going to die, so scared...progressive is a horrible word. I stopped smoking. I do get breathless not a lot but I do
hypercat54• in reply to
Hi my lung function is mid 70's and I am always told I am mild. What is more important though is how you feel rather than numbers. An FEV1 as high as yours means you should suffer very few symptoms such as slight breathlessness especially going up hills and more tiredness.
Whilst emphysema and copd is a progressive disease it doesn't usually progress quickly though there are no guarantees as we are all different. I have been at roughly the same level for 11 years now and never expect to reach the more severe stages unless I live to 120 that is! In fact my doctor told me something else would get me first!
I understand how you feel as we all went through it on diagnosis so stay with us and we will support and encourage you all we can. Oh and stay away from Dr Google please but if you do stick to recognised sites otherwise you can go from a mild headache to dead in 3 clicks! x
• in reply tohypercat54
Slight breath less going up stairs and hills moving stuff...but do wake up.heavy breathing?? Thank you for your honesty. Too late already gone on Google and see me strapped to oxygen dying a horrible painful death
hypercat54• in reply to
There are many on here with lung functions below 30 and they are still leading full lives so please stop worrying. If you ever get to that stage (which is very unlikely) you might need oxygen but again you might not.
Oh and at the last stages you don't die a horrible painful death as before then your organs start shutting down so it is a peaceful passing. I have heard this many times from relatives of those who have passed.
I am sure you have many healthy years ahead of you yet so live them. Accept you have a chronic illness, learn to deal with it, then move on. x
Aingeful• in reply to
I think we've all done that!! It was the first thing I saw when I Googled IPF!!! 
My Fev is 59% My consultant said that 80% is more or less normal when you get older.Hope this reassures you.
• in reply tohypercat54
I won't thank you..gold standard said moderate I am glad I found here
garshe• in reply to
We all deteriorate with age. From the age of 27 our lung function deteriorates. Progressive just another word. How you manage your condition makes all the difference. I was diagnosed 10yrs ago Severe now moderate to severe. Gave up smoking I eat healthy and excersise. Mostly walking. I just do everything at a slower pace but what's the rush. I was told by my Consultant they are just numbers and every patient is different. Being Positive is the best way forward.Good Luck.
Could I ask your diagnosis how long and your fev1 please..have you got emphysema
Jannb54,You have almost 400% more lung capacity than me and for the time being at least i intend to live an almost normal life and i absolutely refuse to die.get out there and make hay while the sun shines cos you shouldn't even be thinking about slowing down let alone popping your clogs.
Best wishes Ski's and Scruff's
• in reply toskischool
Thank you so much it's the diagnosis and not knowing..anything about this disease and googling. My Dr said I should now stabilise but it's "progressive" all new and scary
skischool• in reply to
Google no longer.listen to the words of advice on here re healthy living and exercise.of course if you are or were a smoker stop as that is the major cause of progression of emphysema and live a long and happy life.x
• in reply toskischool
I have stopped not slept eaten well since diagnosis. Just so scared. Get breath less if I try to run get bit out of puff sometimes in the day.
Sorry for being like this. Just don't see how my Dr can say it wouldn't progress now I have stopped smoking...just confused I guess along with petrified.
• in reply toskischool
Can I ask how long you had the condition
skischool• in reply to
I was first diagnosed in 2003 after noticing that i was using more air than my buddies whilst scuba diving,i believe i was relatively mild then but i carried on smoking for the next 15 yrs and allowed myself to be exposed to just about every pollutant known to man in total ignorance of the consequences.had i stopped smoking i believe i would be no more than moderate now.
You must not over think your condition,you have had an early indication of possible emphysema which would probably require at least a proper Pulmonary function test(spirometry} to confirm it and you have received this information well within the timescales for you to slow down progression to that of someone with normal lungs. x
• in reply toskischool
Had full lung function test with the single breath thing which confirmed it consultant said mild my fev1 said 79 total daze so.took little or nothing in to be honest
skischool• in reply to
Well already you have received more advice on here than your consultant gave you and us dodgy lung people know our onions so to speak so stop worrying and start enjoying your life. x
• in reply toskischool
Please please explain the slow down to normal lungs please sorry I don't understand
skischool• in reply to
If you follow all the good advice you are getting your lungs will probably only decline at the rate that people without the condition would,we all suffer a decline in lung function and capacity as we age but we were born with an over capacity so you are more likely to die of an unrelated condition.Now please take some time and control your anxiety as anxiety is a bad bed fellow of poorly lungs.
• in reply toskischool
How old are you
skischool• in reply to
I am 66 yrs young but you are rapidly ageing me LOL. now please do as i say,read others comments and advice and carry on with your life as normal with the necessary adjustments of healthy living,all will be fine.x
• in reply toskischool
Hahaha sorry just have one last question re my 79 percent is that not moderate rather than mild sorry
skischool• in reply to
Forget the percentages,at your level they are immaterial and will just give you more anxiety, what is more important is how you feel and how you adjust to your condition and don't let it control your life.
• in reply toskischool
I feel tired get hot sweats struggling at work..just want to know where I am at
jackdup• in reply to
If the 79 you mentioned is 79% of predicted then technically it is but by 1% and if you took the test tomorrow you might be 83%. When your doctor said it will not progress if you quit smoking statistics I have seen say your lung function decline will be the same as a non smoker if you quit smoking so while technically it is still declining it is not declining any more rapidly than someone without a lung disease so in 5 years you could still be at 79%.
😂
• in reply toskischool
And by the gold standard am I not moderste rather than mild sorry is catching it at moderate good or bad sorry so many questions
Skatergirl1• in reply to
Hi Janna 54. I am 57, diagnosed last year with a fev1 43%, classed as severe. I was still smoking and would get out of breath walking to local shop. 1 year on...I stopped smoking immediately and now can walk miles without getting breathless, I ice skate for 3 or 4 hours once a week and generally just get on with living my life ....if I do get breathless I slow down for a little while then get on with what I wad doing. My lungs have not deteriated in the last year and in fact my lung capacity has improved. As skis says, stop smoking, exercise and maintain a healthy weight and you should stay at the mild stage. I intend to carry on as normal until I grow old or something else gets me!!! Xx
• in reply toSkatergirl1
I think.79 is moderste not mild is moderste the point of no return
hypercat54• in reply to
Hi stop obsessing about the figures please! There is no point of no return in the sense you are talking about it. We don't reach a magical figure and going beyond that means our life will end in the next couple of years.
Even if your figure is moderate it is at the very top end and whether it's 82% or 79% is neither here nor there.
We had a lovely member on here who wasn't diagnosed until very severe with a lung function of 22%. She carried on working for 5 more years. She was told 3 years but lasted 11 and that was with an FEV1 nearly 400% less than yours. if she had been diagnosed at your stage she would still be here enjoying life and living it to the full including working.
You are 'lucky' to be diagnosed at such an early stage so you can now take charge of your health and stop it deteriorating much. Lead a healthy lifestyle and just get on with your life as normal. Anxiety will kill you far quicker than emphysema will... x
• in reply tohypercat54
Thanks for that
hypercat54• in reply to
On re reading my reply I realised I might have come across as not understanding or even a bit harsh, but I am trying to break you out of your panic and anxiety before it can get a firm hold. The equivalent of a cyber shake as this won't do you any good.
There are some very good sites on here for anxiety so why not have a look around at them? x
• in reply tohypercat54
I don't think you are harsh at all. Just trying to get me to be grateful. Trying to excercise but sats can drop to the early 80s which Dr said as long as they don't stay there that's fine..so bit scared to excercise
hypercat54• in reply to
Exercise is the best thing you can do as it will train your lungs to make more effecient use of your oxygen and leave you more to breathe with. Ask your doctor about attending a PR (Pulumorary Rehabilitation) which is a 10-12 weeks course where you can learn exercises especially tailored to those with lung problems. There will also be a respiratory nurse there to answer questions etc. If you are in the UK this is free. x
• in reply tohypercat54
Thank i will....Thank you
• in reply tohypercat54
Do you suffer with anxiety
hypercat54• in reply to
A bit but it's more depression with me. This is nothing to do with my illness though as it is much more long standing. x
• in reply tohypercat54
And myself
Skatergirl1• in reply to
Believe me I do not intend going anywhere soon. I am in charge of this disease by doing everything I can to keep it stable, it is not going to get the better of me. You too can take charhe and lead a normal and healthy life if you do the right things x
garshe• in reply to
Mine was severe 10yrs ago. Now moderate to severe. It definitely progresses normal when you give up smoking. Lifestyle and Positivity. I don't listen to the numbers as every one is different. Some with readings better than mine in wheelchairs and on 24/7 oxygen. I am out and about can do everything no oxygen .just learned to slow down.theres no rush..
• in reply togarshe
Thank you think what i am heading is it affects us in different was. I can't run anymore
garshe• in reply to
You don't need to run. Just adapt and slow down. Also remember to Breathe lol. X
• in reply togarshe
Sorry had not finished cant run far have to stop to catch my breath.
hypercat54• in reply to
I couldn't run far even when I was young and way before my diagnosis! x
• in reply togarshe
Hi going on everyone's profile so you have to think about breathing I have started doing that since diagnosis guess it doesn't get easier...Thank you for taking the time to communicate with me
Not sure I'm seeing my gp I might ask him. Did mine yesterday havent done them for about 6 months kept meaning to then I would end up with a chest infection. But did it yesterday.one reading said a 100 and the other said 98 thought no that's wrong they usually in the lower 80s. So to be sure put new batteries in and it was right. So all my extra walking around has helped and singing cant sing for toffee but love singing along to the radio.seems to be helping my lungs. Let's just hope my sats remain the same. Going to get doctor or nurse to do it next week. All this bad weather not suiting me so its definitely the singing.lol. cant run I'd be on the floor.
I had the same result. My fev1 is 79 to and concidered mild. I struggle daily with my breathing, worse in last 6 month, and they still say my emphysema is mild. How low does it need to go.
Hi, when I was first diagnosed 5 years ago my FEV was 82, after 2 years that dropped to 77, I had stopped work due to arthritis knees and obesity,I started swimming,eating healthy and losing weight,my last score was back up to 81, I am still overweight be a great deal,knees are horribly painful but I breath easier and can do more than I could at FEV of 77,numbers don't mean a thing,it's how you feel and what you can achieve,listen to the people on here, they are not experts but have a whole shed load of experience,you won't go wrong,there are people with far worse humanitarian you who lead an active life and have done for years,try not to stress it's not the end of the world an if you look after yourself like I have you will be fine,good luck on your journey.
Joll J please rad my post concerning weight--Losing is changing my life--It is so detrimental when you have lung issues--It is my focus now and getting stronger--Goof Luck--Mmet
Thank you for your reply,I read your post and congratulations keep up the good work, to date I have lost 40lbs in a year but most of all I swim between 3/4 and 1 mile three times a week,the combination is making a big difference,luckily I never smoked but eating has always been a problem but hopefully I am on the right side now,stay positive and carry on what you are doing.
Thanks again.
Hi again Jolj--So glad you are losing too. Are you on Keto? I will never be off it--I feel so much better on it and with the weight loss, I am moving more so it all works together.I feel the weight has been a huge detriment for me. I go to pulmonary rehab 3 times a week now--That is basic beginners program. Once Im done with that--I can go to maintenance as many days a week as I like. It does wear me out some at this point, so there wont be 2 days in a row on that. Have a heated pool here where I live so I think Ill do machines at rehab and do some water stuff here.. Keep on keepin on and stay in touch if you like--Good to hear back from you--MmeT
Hi again, no not keto, very low carb, I found that cutting out carbs completely left me drained and not able to exercise to the level i do now,my practice nurse advised between 50 and 100 gms of carbs per day, around 1400 to 1500 calories, it seems to work ok,slowly but surely a lot depends on the exercise, I need minimum two sessions or I don't lose any weight ,I can't do a great deal after swimming due to the arthritis, it really pains me so just do what's possible, I am 61 years young by the way.
Hi Jollj again--I am on 1000-1200 calories a day--and around 20 carbs--Mine is slow too--22 lbs in 5 months so about a lb a week--Im happy with that and can eat this way forever--I think the fact we are working in a direction and seeing some results is good and not healthy to drop it all quickly..Im going to pulmonary 3 times a week now--Mornings are killing me--but im doing it!! First hour is talking and questions--There are two pulmonary nurses running this.. Last hour is machines--and we swam the other day --I cant swim (you kno like breast stroke) very long--1 minute of that and i cant breathe--walk in water or hang off a noodle thing and move feet--I have firbromyalgis too so have to go at any of this slowly or i pay dearly.... im going to go down to twice a week for maintenance program when this beginning month is over--My breathing has improved--I havent had my 02 on this am for an hour and a half( I have a lot of anxiety from being on this for 2-1/2 yrs) so again easy does it--Just breathing correctly--"mindful breathing" I call it--I have great hopes for even partial recovery or a better life--Just wish I had another 20 yrs--I turned 70 in January---Hugs,Mmet
Hi Jann, Why are you still Hidden ? xxx
How do you check your Fev? is it done at the hospital?
Fev1 is not the only criteria that’s used, having said that, as long as you feel well, you should have no problems.
My FEV is 79.1--I have recently started pulmonary rehab and i so wish I would have done it sooner--I am hoping to get off oxygen--I am on 2litres at rest--3 when active and 3-4 at night--Yesterday in PR I was able to excercise at 1 liter so I have high hopes. I smoked 53 yrs and 4 months after quitting everything fell apart-I still dont know why I am on oxygen--Everyone in my group has a lower FEV and are not on it-It has been 3 yrs now and I am on the journey to some semblance of wellness. I was dxed with a-fib ,pvcs,emphysema,and gained 50 lbs. The weight has really contributed to breathing problems--I have lost 22 lbs in 5 months on Keto and cant say how that alone is helping. I hope I have a life again and I wish everyone well. It certainly can get overwhelming not to mention paralyzing..Be fearless It can get better...MmeT
I would go with that.
Hi Hidden, this is my first post on here but just thought to offer some re-assurance. I was diagnosed with Emphysema and Asbestos pleural plaques about 13 years ago, I gave up smoking and thought that my life was over so sat back and waited for the inevitable decline. Then I got on a Pulmonary Rehab Course which completely changed my outlook through exercise and education, it made me realise that I could take control of my breathing, I couldn't repair my lungs but I could utilise them to the best of their ability. I learned to slow down, pace myself and plan my journeys and most importantly I learned that breathlessness didn't mean that I was dying. I learned techniques to slow my breathing before I started panicking and gasping for breath and how to relax and use deep breathing exercises.
18 months ago I suffered a ruptured aneurysm in my brain, spent 2 months in an induced coma and amazingly made a full recovery. 3 months later I suffered a heart attack and investigations showed blocked cardiac arteries x 3. It took almost a year of tests appointments and interviews before we got anywhere. Currently my FEV is 37 and I am 67 years old ,much concern was over my lungs ability to survive the 6 hour op given that they would be completely deflated for almost 2 hours during the op. Once the op was agreed on I had a 3 month wait during which time I determined to get into the best physical shape I could. Being a non smoker and having given up alcohol 32 years ago and having a healthy BMI I set about my diet, opting for fruit and salads and giving up fizzy drinks and my beloved chocolate. 3 hours walking in my local park every day saw me get my walking up to 5 miles a day. Nice steady, slow non exerting walking.
I had my triple bypass on the 18th May 2019 at St Barts Hospital London, 6 days later I was discharged and when at home tried to get as well as possible by moving around as much as I could. Yesterday I returned to my local park for the first time since the op, an op which I didn't really believe I would survive ( one Surgeon refused to do it saying the risk of lung failure was too high ) it was quite an emotional return for me but also exhilarating as I managed to walk almost 3 miles. I am now well on the road to recovery even though my breathing is still very shallow, my left lung is badly affected by asbestos and my right lung has over expanded to compensate.
Sorry for the long post but I wanted you to know that copd is not a death sentence, and even with severely reduced capacity our lungs can still function and get us through. I have had 13 years of fantastic life and although my physical ability may have deteriorated over those years I can still get out and walk, still take my grandchildren to the park, still go shopping and generally enjoy life, just at a slower pace. Wishing you all the best on your journey
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