Today iwas told ihave emphsema fcv1 85 but on the net its only 5years to live is this true please help iwill become crazy
Emphsema: Today iwas told ihave... - Lung Conditions C...
Emphsema
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Tamer1234
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38 Replies
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Hi
Take no notice of the net, people on here have been diagnosed for twenty years, I am stage four very severe, aged 67 and still going, a lot slower.
Confirm with your GP what stage you are at . Maintain a health diet, quit smoking, exercise. And you slow the progression of the condition. As I have mentioned in a pervious post, ignore internet, any question can be answered by members.
Thx ston. Dr said its mild stage. Fcv1 85% but realy iam sceard
do as stone said, concentrate on improving your health by doing exercises. This is absolutely vital. At first, you will feel breathless doing them; but little by little you will feel the improvement and you will be proud of yourself.
Ask us what sort of exercises..
On You Tube, look at lung exercises for COPD.
Tell us your feelings when you get going.
But get going! That's the thing, keep you head high and breathe in ... and out!
Hi I'm FEV1 32% 19 months since diagnoses if you are 85% you have been diagnosed early. Don't smoke, eat a good diet, keep active and a positive attitude and prove that net wrong. I intend to live longer than five years. Don't go crazy stay tuned in here. Many more people will be along to offer their stories.
I have emphysema and was too four years ago was only fev 30 and hope to be around a long time yet so just carry n do exercise and your medication and think positive and you will be around Avery long time
Evening.
Welcome to our little community. I have severe Emphysema diagnosed 2011, ask to be referred to a Pulmonary Rehab course where they will teach you how to exercise, breathing techniques diet etc, and take your medication as everyone don't Google, come here and ask or ring the BLF helpline.
Good luck
Kim xxx
I have a FE1 of 25% have been diagnosed 6 years but probably had it for 10+ years. I am on oxygen but remain active & intend to live my life to the full. If you smoke, stop, eat well & exercise. You can live a normal long life if you take good care of yourself.
Best wishes
Jo 
A lot of us looked on the web when first diagnosed. Don't take any notice of the " five years to live " stuff as it's a load of rubbish.
I'm also Stage 4. 64 years old. FEV1 when I first got diagnosed was 24%, now 26%. I used to have to stop 4 times to get up my stairs of 14 steps, now I do it in one go at normal speed and hardly get puffed. I still work, go shopping and do everything I did before, sometimes a bit slower though !
Try to avoid infections of the lungs as it's not normally the emphysema that's the problem.
Keep active.
Then what is it ? I have copd/emphysema & well my doctor here in Philadelphia dont really clarify if its one or the other. Maybe i dont ask all the right questions and for 6 yrs now ive been in a whirlwind of denial that this unreversable disease has taken my on the go life steadily away from me. I am angry i did not take the correct steps to avoid a catastrophic episode that i still cannot believe happened..now # 1. I dont know where to find a pulmonary doctor that i can feel comfortable with, my insurance here in USA doesnt cover everything so im limited in choices..the fc32% stuff im reading on here has me clueless as to what it means. The UK takes care of its citizes in health care unlike USA..so i joined the BLF for advise and yes the info & ppl in here are wonderful and careing ppl...god bless the UK for its upscale personality in times of despair and the willingness to really be here for me i am startled by it, believe me when i say this, there is a world of difference between ponds. Id like to let that be known first n foremost. Smoked from 1973-2014 yes i was in the hospital on sept 1 with pnuemonia at my base and i was thinking ....i could die from this. Im scared and im in a angry with noody but myself mode. 2009 i had what i thought was bronchitis, i went to the restroom and i had the most panick driven episode that i am still reeling from...u see i had no warning that this was coming, it hit me like a jackhammer...i stood up and absolutely could not breathe, i mean i couldnt speak, couldnt even sit n breathe. I was losing oxygen like i was in space and removed my helmut...im frozen and being strangled with a piano wire wrapped tight just letting my last memories pass thru cause on Feb 23, 2009 im a dead man and im not dying as fast as i need to...heres what happened...my wife came upstairs cz i cannot get her to help cz remember im dying a slow painful death...long story already too long short...shes a asthmatic from childhood and praise god she manage to get me to do the chk down steps that were necessary to breathe again. Thats how this all began..i was 49. Im 54, and i do go to work at an office as a opthlamolic techincan...and i can get around my house which im going to sell cz its too big..have to stop 3-4 times to get up 15 steps..from basement to bedroom =29 steps...so i left the hospital and they gave me prednisone 20mg taper...well i felt so good on them..for some fleeting moments i had flask
flashbacks of yesteryear...i was moving all around work up n down my steps... was told i cant stay on prednisone...but why ? Its working !! Knock knock hello....i repeat...it really works....for once i want to go to a football game and walk or take a nice long walk with my wife... but im afraid my optismizm is going to be fleeting...oh well it was a nice feeling anyway...ive lost 30 lbs..i have no musle mass. I used to weigh 165 i now weigh 137. My lags n feet are constantly swollen which creates black n blue marks..my skin is stretched to the point of unhealthiness, legsr so thin i have trouble picking myself up when im on the floor etc...lord what can i do ? My blood vessels in my forearms are visibly breaking and it leaves a ungodly mark that im covering them with makeup. I see patients all day and i cant have this appearance but everyday its getting worse...help me i feel like im turning into the "fly" ...
Jimmy, The bruise type appearance on arms is due to the steroid Prednisolone.
it also thins your bones - that's why you shouldn't be on it all the time.
There are probably steroids in your inhalers too.
You must do the pulmonary rehabiltation course (PR), it's international and very very beneficial whether you're mild - severe. Learn breathing techniques to use everyday to strengthen. See vids on you tube.
To Tamer, a warm welcome to the site, please don't worry, you're mild like me and I live a very active life (unless I get an infection which are best avoided).
Keep looking in here, lots to learn and knowledge is power. Very best wishes. Peeg
Peeg, thnk u for your info..now i know. Its not the pred its my overuse of symbacort. Been overusing it for a yr, now it makes sense. U have given me a answer my doc couldnt or d i dnt ...but i will do the pulm reh. Just have to find one....cant thnk u enough.
Yes Jimmy, ask for the Pulmonary Rehabilitation course - we call it PR for short. You learn breathing and specific strengthening exercises plus there's an education side when you learn so much to help yourself. Also teaches you how to use inhalers properly.
If your insurance doesn't cover it there are DVDs you can get and/or many YouTube clips.
Symbicort comes in different strengths, if it's not working you Might need a stronger dose. It should only be taken only twice a day.
Your blue inhaler (the emergency one or reliever or rescue as we call it) you must learn to use. IE before exercise to keep your airways open & help stop u get SOB, then you can use it when you do get SOB.
Read all the leaflets that come with meds. Avoid infections, use a mask for close up work with patients - just tell them you have a snuffle and don't want to pass it on.
Good luck (I'm sorry you didn't stop smoking 6 years ago when you were diagnosed but it may be that when you have fully recovered from quitting you will feel better, quitting can sometimes effect people badly). P
Hi
The numbers are the test results from a spirometer test, which is the best way of testing for a lung condition .
The following link will explain it better.
patient.co.uk/health/spirom...
Thnx stone...ill find a place to get it ckd
Hi Jimmyr,
So sorry you feel so bad, but don't feel guilty or blame yourself. Try to feel positive, you still have a future. Find things you can do and take it slow. When I was first diagnosed about 5 years ago, I was 40 years old and couldn't believe it. I felt like my life was over. I suffered awful attracts of breathlessness and panic. I'm on oxygen now, and have my off days, but I'm still going strong and can still laugh. I plan to be around for a long time yet. I don't have a lot of faith in my doctors though and am trying complementary therapies too. Eat a good diet, apples are good for the lungs, garlic is a wonder food, a good vitamin supplement, and I'm also trying salt therapy.
I did what you did and looked on the Internet, which drove me into a deep depression, I wouldn't advice it. At least not at first. The best thing you can do is keep doing what you normally do if you can, but take it slower. Exercise is very important. Stay positive, keep posting, and do a pulmonary rehab course, or if you can't find one, look up exercises for COPD on line.
Good luck and good health to you
Kelda X
Hi Tamer1234.
Take no notice of the site that gave you that info. I am 71 and was diagnosed 15 years ago. My FEV1 is now 20%. I get out every day,,go to exercise classes like wine and do what I can.
Keep fit,eat well and don't smoke.
Good luck . Fight it
Dick
DON'T believe everything you read Tamer.I am at gold stage Emphysema.I am only 56 and have had Emphysema since my 30's.No doctor can tell you how long you have left to live, everyone is different! I am awaiting a lung reduction/or transplant (Whatever) and it says on the net I may live a year after operation, or anything up to 5yrs.If I believed every thing I read I would think why are the docs bothering! Think positive sweetie,exercise and be optimistic.Take care hun ..Laura x
Hello Tamer,I have emphysema(severe) Fev19%.I am 58 and hope to make at least 70 just to get some of my pension money back lol.I do things a bit slower but still do most things.You have an early diagnosis so eat well ,exercise plenty and above all DON,T SMOKE and you may live to be a hundred.Relax,good luck!D.
Hi. I am stage 4 very severe with fev1 of 26. I was diagnosed 18 yrs ago so as the others have said ignore web. The best thing in my opinion is stop smoking, stay as active as you can & just hold on for the ride. Which admittedly can get very bumpy some times. Oh stay away from people with coughs & colds as much as you can. Hope you are well at the moment.
Thx for your support iam well iam 39 y. Mild stage fev1 85%from your experimce from stage to stage how long its take
It is different for everyone Tamer. We are all different but you cannot trust the outcome to luck.
We must choose to change our lives a bit, practice good hygiene to prevent picking up infections (most of us carry antibacterial gel to use if we touch anything when out in public) teach your family to wash hands when they come in. Buy Boots Cold and Flu Defence to use if someone coughs or sneezes near you. It's a drag but just make changes and you will live long .
15 years ago I was told I had 10 yrs. or less, If I was Lucky. There is only on person who knows for sure when we die!!Take your meds, keep moving.
I never pay too much heed to stuff on the net - go to a different site and they give the exact opposite info!
When my late husband was diagnosed with congestive heart failure a young doctor told me it was a matter of six months or so, the consultant said it was two years "if the drugs worked", my dear old doctor said "Rubbish, you can't put a time limit on anyone's life"; with careful nursing he didn't desert me for over eight years!
I was diagnosed 10 years ago age 42 my mum was diagnosed when she retired age 60 she lived till she was 87.
I go swimming try to eat healthy not always able to my breathing now is much worse than 10 years ago I just go a lot slower now but I still have a shower every day and I plan to live till I'm 144 to get all my tax that I paid in pension and then when I die I'm coming back and I will haunt every MP that disrespects people with lung condition.
We are always hear if you want to chat
Thx for hope but the probleam iam 39 years father for 3kids I know that no one can say howlong we can live but realy iam afread from live kids in this world some times icray when iplay with them today icant play with theam becouse they have cold this make me frastrated and istop smoking
I have a daughter and a 7 month old granddaughter I was 42 when diagnosed medication is changing all the time I have been put on new meds just last week get your GP to give you rescue steroids and antibiotics and look on the web for local breath easy groups I joined mine and have had loads of help.
When I was diagnosed I sat down with my daughter and husband I gave them a leaflet to read and although they don't fully understand what its like only these guys on this site know what its like and we are always around to help it might be worth phoning BLF they have experts but please don't believe everything you see on the net
The advice from Kimmy 59 is probably the best you'll ever get.
I've had Emphysema since 1989 So just forget the 5 year rubbish. You'll decide how long you survive. By your own input. This is really a case of getting out what you put in. Good Luck.
29 years since emphysema diagnosis for me
Lol realy
ya really regeneratinglungs.com
Tamer with a fev1 of 85 you will live to 100 and die of old age. You have heard from people with 20ish% lung function who are still here and you dont progress from 85% to 30% in a matter of weeks you know! You will never get that low as you will die of something else first. I am 60 with a fev of 66% and I fully intend to be around for a long time yet. The only way to avoid colds and flu etc. is to stay indoors and avoid people but that is no life is it? It's only at the severe or very severe stage that you need to be so vigilant in avoiding people with colds. I certainly don't and if I get a cold it usually turns to a chest infection but I recover quite easily and so will you. Live your life and enjoy it.
Do not believe any of the garbage on the internet it will just needlessly scare you at 85 you will live many years if you take care of yourself ie, no smoking,diet, lots of exercise, your choice. i'm not even sure you have emphysema at that figure. I am only at 77% and i'm doing great at 68 years old.
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