Hi, my name is Susan, and I was recently diagnosed with Stage 2 emphysema. Found out from a CT scan of my chest. I was not surprised, because I have smoked since I was 20 yrs. old. I'm now 58. The nurse told me that they go by the FEV1 to figure out the stages. Mine was 2.09 and she said Stage 2. (68% of predicted). How bad is this? Do I still have a ways to go before I feel like I can't breathe? I do get breathless sometimes, but still able to do most things I did before.
My father had emphysema. I am terrified because I saw him pass away and it was not pretty at all. I just don't want to pass gasping for air. Nobody does I suppose. I have cried and cried, and now I know I have to get a grip, or I will not do well at all in the future.
They also told my my lungs are hyperinflated, which I read somewhere was a sign of late emphysema. So how is this possible if I'm in Stage 2? It's confusing me.
Thank you, and I hope this board helps me. Right now, I'm afraid, and depression is pretty bad at this point. (naturally).
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artemiss2291
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This is such a helpful and experienced group - I'm certain others who know more than I do will be responding tomorrow and that things will look less bleak than they do now in the middle of the night. I'm sorry you're feeling so traumatised right now and I'm sure you can find support for that too. All the best!
I know how you feel. In fact I am sure everyone here does. It is so natural to feel shock and grief, no matter how you " are not surprised " by it.
Your lung function at 68% is not end stage at all. I can assure you there are many members here with late stage illness like me with an FEV1 of 30% and some with less, and we are still living our lives. Naturally, I can't run any marathons or do things I used to do, but I have substituted these with other interests. We make lifestyle changes and eventually, slowly but surely, acceptance finds it's way in to our lives. 🌿
You probably know that you do need to quit smoking. Perhaps you already have? 😀 I have heard it is a difficult thing to do, but I think with encouragement you will be able to. Lifestyle is important, regular exercise and a healthy diet will give us a fighting chance at living the best life possible. 🌷
I can only imagine your worry, since your father passed away with the same disease you now have. But I must say each person's experience of disease, even the very same disease varies from person to person. Just because of the manner of your father's passing absolutely does not mean you will have the same experience. And now that you are on the right track to treating and living the best life possible, would it not be best to think about living rather than dying? Another day above ground is a good day. 😊
I am so pleased that you found this site. It will help you get vital support you need and give you the opportunity to lend support to others.
I'm done with cigarettes!! I thank you for your reply. Much needed. I am still frightened, but not as much as a few days ago. I will be on this website a lot, I am sure.
68% is pretty good. I was 68% when I was diagnosed in Jan 2012 and after quitting smoking in 2013, my numbers have gone up steadily and I'm now 84%.
We all feel scared on diagnosis, mainly because we know nothing much about it. But, nothing has changed from before your diagnosis except your now aware of your COPD.
I just stopped smoking. I have an autoimmune disease and fibromyalgia, so, I just tried to have a brisk-ish walk, 2 or 3 times a week. (Daily walks flared my fibro up.) but that was all.
I can understand you feeling depressed having seen what happened to your father but at the stage you are at there's a lot you can do to prevent this illness progressing. Cas and Caspar have given you good advice above.
Take good care of yourself. Make your health a priority. Stop smoking if you already haven't. Exercise even if it's just daily walking but find something you enjoy. Eat well to maintain a healthy weight and muscle tone. Take a multivitamin. Breathe in lots of fresh air and stay away from smoky atmospheres, cleaning products, aerosols, etc
Try to avoid getting infections as these cause the lungs to deteriorate.
Do the things you enjoy to lift your mood.
Read the advice on this site and you can live a long and happy life.
Hi Susan, You have now found the right place to address all your anxiety and fear. Whilst I understand you saw your Father pass with emphysema, that must have been quite a while ago, healthcare is a lot different now. A FEV1 68% is pretty good still and you should not be overly worried, lead a healthy lifestyle and you will live to a ripe old age, dying with the disease not from it. There are many here with less than half the FEV1 that you have, all living with a reasonably good quality of life.
Other than a few hospital appointments, I lead a normal (ish) life. I am able to work full-time, do the shopping & share the housework etc. I even live up 3 flights of stairs. Yet I have stage 3 emphysema and at a recent Pulmonary Function Test scored a FEV1 31% predicted. I am also 10 years older, diagnosed with stage 3 two years ago.
You are lucky that you were diagnosed a lot earlier stage than some of us. There is so much that you can do to slow down any advancement of the disease and give yourself the chance to not let it get worse. You have a lot to learn, to control and manage the disease with it's symptoms but other than not smoking, which will accelerate the progression, you have plenty of time to learn the ropes.
Stay away from Dr. Google there is a lot of wrong information on the web and a lot of scam sites purporting to have cures, when there is no cure, preying on sick, vulnerable people. This is the place to come for advice, from the people that actually live with lung disease.
A very warm welcome to you :-). I don’t have the same resp condition that you have but I can tell you you have had some excellent advice from your new friends here who do.
Hi, Artemiss. I was diagnosed with moderate COPD three years ago around my 60th birthday and my condition hasn't got any worse. I watched my previous husband die of COPD because he continued to smoke and didn't look after his health. So when I got my diagnosis, I took it as a wake-up call to live more healthily. The people on this site gave me lots of good advice which I still follow. The first thing I did was ask my GP to send me on a Pulmonary Rehab course where I was shown how to exercise safely and told lots about my condition to help me manage it.
All the best. Once you are over the shock of the diagnosis, you will still be the same person you were the day before the diagnosis.
Oh dear I am so sorry this seems to have hit you so hard and got you feel so down. Firstly have you managed to stop smoking? If not please do so. Other than that stage 2 is a good place to be and you may well stay at that stage for many years so please do not get down hearted. You need to eat as healthily as you can, and get out there walking or exercising in any way you enjoy which will help your lungs no end. I am stage 4 and I am still not gasping for breath and am able to do things. Ok a lot slower than I use to but I still get by.
Hi Susan, I haven't had time to read others' replies so may be repeating stuff. My lungs have been hyperinflated since before my copd diagnosis - it certainly doesnt indicate "end stage", which by the way isn't a term which is used by the medical profession any more since it's very misleading. People with Stage 4 copd can live for years, many of them without needing supplemental oxygen, and also many still working.
You need to ask your GP about a referral to pulmonary rehabilitation. This is an exercise and education course where you will learn how to manage the condition and will meet others who are dealing with the same thing. Pulmonary rehab is evidenced as the best thing to slow down progression - it's not scary since everyone starts from the position they are at, there are no expectations other than to turn up and the respiratory physiotherapists are very friendly, encouraging and knowledgeable.
All the best to you and make sure you keep bringing your questions to the forum. Take care Ps: Im late stage 3 btw, and still living a good life.
Hi Artemiss and welcome - so many of us in the same boat here and you’ll find it’s a knowledgeable and supportive crew. I watched my mother die of emphysema too and was therefore totally devastated when I got my own diagnosis. But you know there is. Huge amount we can do to support our lungs and slow the condition. Pack in smoking first off, and then exercise, exercise, exercise. It helps increase lung capacity and supports the immune system so we are less likely to go down with chest infections which are to be avoided like the plague. Your fear and depression are totally normal at diagnosis - horrid, but strangely you will get used to it and find ot’s Not as terrible as you first feared. Life goes on as normal! Good luck! Stay in touch. Frances
Every reply has contained a lot of good sense. I, too, watched my father's condition degenerate because of emphysema but treatments are SO much better these days!
Emphysema can be hereditary: ask your GP to send a blood test for Alpha-1 Anti-trypsin deficiency -- not that there is a treatment for it, but it is useful to know! Childhood respiratory problems can cause hyperinflation of the lungs (among other things).
Please don't consult Dr. Google -- you could be dead in three clicks. Neither is your diagnosis a death sentence. I got my initial diagnosis when I was about 38 and I'm pushing 71 now.
Follow the advice here about healthy living and exercise and you could go on for donkeys' years. Meanwhile -- talk to your GP about your depression. Don't suffer in silence. You aren't on your own. About 80% of people with long term lung disease have depression.
Just come and join the non-smoking, healthy-eating, frequent-walking, pill-popping club.
Hi Susan, like you I am at 68% with hyper-inflated lungs. I was diagnosed about eight years ago and think I am healthier now then I was then because of the exercise I have been doing (used to be a bit of a couch potato). I have also found that if I start to feel down and go for a brisk walk I feel immeasurably better. I have also been working full time though have moved to part time now having turned 60. I try to stay away from smoke (including BBQs), take vitamin D, avoid busy roads, exercise and eat well - life is really good actually.
I am 76 smoked from the age of 12. I have emphasima my test was 51% lung function. I also have COPD. I still smoke, silly old shit. I have tried so hard to stop. I walk every morning. It is not curable but can be stabelised. I just go on as best as I can. I do not worry or get depressed, it does not help. I have accepted what I have. I get around pretty good under the Sercomstances. I get short of breath quite offten. Just accept it.
Hi nice to meet you. My lung function was 63% when I was first diagnosed but with the right inhalers went up to the mid 70's where it has stayed for the last 9 years.
I can't add to the great advice given but just say nowadays most people with copd die from other causes ie old age rather than the illness itself. I would not expect you at your stage to ever be gasping for breath! x
Hi Artemiss. I well understand how you might be feeling. I watched my Father pass with lung cancer when in his early 50's. I have 23% capacity and severe COPD and Emphysema I have also suffered a mild stroke and presently being investigated for Prostate cancer. I am 71 and stopped smoking when first diagnosed 14 years ago. I do not use Oxygen. My activity is limited by extreme breathlessness but I have some lovely friends and lucky to have a loving devoted wife and family. I have found this site very supportive and helpful and reassuring so you have found the right place. Do not worry about time, enjoy every moment as it happens and know that your future may be long and happy yet.
Hi I was diagnosed the same in my 50.s and from experience I found exercise is the best u can do to prolong the illness. Pulmonary rehabilitation is usually offered. I was lucky enough to be offered a double lung transplant which I had at 62. It is worth u asking your consultant about this. If I can be of any further help don.t hesitate to contact me. Sue
When did you have your transplant? That is great! Are you doing okay? I am honored to know someone who has a lung transplant... ... as that had to be quite an experience.. to be sure!! How is your breathing now at this point?
Hi it is 4years since I had my transplant. I was diagnosed about 10'years prior to it, unfortunately for me I deteriorated although I have met many people wo with the right medication and exercise did improve.
I was really ill when I had the transplant and lucky they went ahead, I spent 3montgs in hospital but I now have a life and breathing just comes easy.
Thinking back I don.t believe I started the pulmonary rehab soon enough. I have a neighbour who has the same condition and he is 80 and still exercising.
Try not to get yourself depressed, live for today and keep healthy. As my consultant said "there are no guarantees in life other than you will die".
Very true ..
Take care and I will always be here for you if I can be of any help.
Thank all of you lovely people for responding. I will ask about Pulmonary Rehab. I also expect my treadmill to be delivered tomorrow. I hope I can walk for miles and miles... I want all of you to know that your replies have definitely helped me.
Hi, I understand your plight and the anxiety this may bring. Your right to get a grip of yourself. The internet is not always the place to get the best information, it often frightens the readers more than helping. Give up smoking is a must, the damage this is causing cannot be seen but believe me the lungs do not appreciate it. They are so very precious look after them, you still have time to slow down the bad effect smoking has on them. I didn't listen and I am now a wreck as as a result. don't get like this you will not like it one bit. I'm having to have a carer to prepare me for the day, I cannot have lung transplants, have tried lung reduction, valves & coils, even stem cell treatments all to no avail. You have time, take exercise, eat well and pace yourself, but the cigs must go NOW.
YOU just convinced me to STOP forever. Thank you so much for this post. I had cut down to 3 yesterday. None for me today. I'm already feeling better knowing I won't do anymore damage to my lungs, and this post is what made me realize the reality of things.
Hi there. I am sorry you are scared but 68% is, to me, amazing. I have never smoked and am the same age as you but have severe asthma since aged 3. I'm running on 42% but trying to get more exercise and practice good breathing techniques. My aim is to improve, or at least to keep my lung function from getting any worse.
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I just don't want to pass gasping for air. Nobody does I suppose. I have cried and cried, and now I know I have to get a grip, or I will not do well at all in the future. 
Ps: Im late stage 3 btw, and still living a good life.
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