I have just be told I have severe emphysema. I'm new here. I don't know how to process the news

I'm 52, married, and have two boys, 21 and 19. I have smoked more than a pack a day for 37 years. I was diagnosed with COPD years ago. Never followed up, never told anyone. I smoked to deal with stress. I had a lot of it. Two ADHD kids and a husband who is a good man, but stuck his head in the sand. One problem/crisis/fight after another. Recently, I got a cold, went to the doctor because I couldn't breath. That started tests (lung CT scan and pulmonary function tests). I knew I was short of breath. I knew I was killing myself. Still I was shocked by the news that I have severe emphysema. That's "an old person" disease. Scanning the internet has left me completely depressed. BODE rating is 3. 30% FVi. 67% chance I will be alive in 4 years. What if I'm in the 33%? If I'm in the 67%, how much after 4 years do I have? I've quit smoking. Gone a month now. I honestly don't think I will ever smoke again. Finally, after countless attempts. I feel better than I have in a long time. I'm walking 3 miles a day (wasn't exercising at all a month ago). I am happy to wake up, but terribly depressed that it's one day closer to my death. I am so ashamed of myself and my diagnosis. How do I tell people? How do I tell my children who need me so much? Should I tell them now or wait until I have more symptoms? How can I possibly justify my smoking. How I can I pray and hope to live many years when I did this to myself? I am overwhelmed with fear, dread, impending death, and great shame. How do I live with this? How long do I have left? How soon will I lose my quality of life? Is there anyone who can offer some hope? Not fake or empty hope, but hope based on living with this disease? If not, how did you come to terms with this? Thanks for listening.

Last edited by

35 Replies

oldestnewest
  • Oh bless you, please don't despair as you are now going in the right direction to helping your health.

    Well done on going a month without smoking as this should help you a lot. Don't feel guilty as smoking is an addiction and you need a pat on the back not beating yourself up.

    My husband only stopped smoking when he felt he was ready to and took no notice of all the nagging from family. You will get a lot of help and support from this website and please don't google too much on your diagnosis as it can frighten you and no two people are the same.

    Take care and keep us informed on your progress.

    Wife of a copd sufferer.

  • Hi

    I know it's hard I've been diagnosed with bronchiectasis at 42 years old but I think the best thing you can do for you and your family is try and stay as well as you can.. you've started this process already by giving up smoking and starting some exercise.. instead of looking up the worst case scenario which I know is tempting I've done it myself! Use this site and the blf for advice on how to stay well. I've taken up swimming which seems to be helping and also I'm trying to eat as healthily as I can but without feeling deprived. 14 years ago I had cancer the treatment for which has resulted in my condition today but throughout my cancer treatment and now I've found the more positive you are the better you can manage your illness. I know this is all easy for me to say by the way as when you feel down like you do you can't always just start being positive again.. but I hope that by hearing from others on here with similar problems to you you may feel better in the long term 😀

  • Well done for giving up smoking step 1. Step 2 tell family and friends in the hope it relieves the stress caused by others. I have been diagnosed with emphysema for ten years the last three with 25% lung function. Yes it's hard work coping with daily life but it is doable especially with strong family support. Step 3 avoid getting depressed as this may lead to other health issues. My motto is always look on the bright side especially since I woke this morning.

  • Hi Luann, First and foremost, stop worrying. Emphysema is included as COPD, it is NOT a death sentence and it is not, exclusively, an old person's disease. You have already made the right changes to your lifestyle. Quitting smoking is a big achievement well done, the best thing you could have done to slow down the advancement of your condition. Exercise and a healthy diet are very important too, along with taking your medication correctly. You will see your grandchildren grow up.

    You will need to tell your family of your condition for many reasons, one being to avoid other's coughs and colds or something as simple as the smell of an aftershave that could knock the breath out of you as if if hit with a cricket bat on the back.

    As for quality of life? that is up to you. I have severe COPD (Emphysema like you). I still work full time in production engineering. Through a dedicated exercise regime, and breathing exercise, have gone from being able to walk only 35 yards to 5+ miles now. The 33% of my lung that remains, now works as if I had 50%. I have no complaints about the quality of my life, I am fitter now than I have been for 20 years. My new life is different than before, that is all, perhaps better some might say. I am 66 years young.

    Many on this forum live with COPD, they will say the same thing, to stop worrying. We have all had these fears and thoughts when diagnosed, it's normal. As you've already been advised, stay away from Doctor Google. You will get all the support you need right here. You will accept your condition in time because "it is what it is and there is no going back, only forwards".

  • I love these amazing posts from you all. Thank you

  • I know me too does make you feel better knowing there are people in the same boat xx

  • well done for giving up smoking you have done the hardest part. Get your GP to refer you to a pr course you will gain so much knowledge and they give you the tools you need to manage your condition.

    its fantastic your walking a great form of exercise I swim and try and do a few aqua fit sessions can't exercise on land.

    Its important you stay healthy and away from people with flu or cold and remember we are always hear to help take care

  • What is a pr course?

  • pulmonary rehab its run by physiotherapists at your local hospital its exercise and education helped me loads

  • Do talk to your GP about feeling so down, depression is a common side effect of serious illness which is often ignored by the medical profession and nothing to be ashamed of. You say every day you wake up feeling a day closer to death, but everyone is in that position from the day they are born, it is your depression that is talking, not you. You are doing really well with giving up smoking and walking 3 miles. The statistics you have read are just that, statistics. You are twice as likely to be in the 67% than the 33% and you have improved your chances by what you have done. I sympathise with you dealing with your sons. My elder son was my despair as he was very difficult and we only learnt he was autistic when he was 25. Do you have any help from any organisations or social services? I know at one stage I felt that if he didn't murder me I would murder him! He is 41 now, married and happy, and working, so there is hope. Dealing with ADHD and autism is like herding cats! I wish you all the best and send many blessings xx

  • I feel like you understand my challenges very well. One of my son's has ADHD and is considered "high functioning" Autistic. He's 19. He depends on me for just about everything. He goes to junior college and does pretty well. But, I am his only friend, he's never had a job, and still doesn't drive by himself. My husband is a good man but he really has no clue how to connect with our son. He's the only thing that I worry about when I think about not being here. I have to start getting him to be more self-reliant. I need the time. I am so afraid that I won't be given enough time to get him on more solid ground. I know depression has a tight grip on me. I hope I'm able to shake it. Your words helped. Thank you so much.

  • My son too has high functioning autism which in some ways is more difficult. We have been through everything you say and sometimes it is despairing, I have spent a lot of times trying to hold back tears. I also had severe depression and still take antidepressants. My husband also is a good kind man but finds dealing with my son difficult. In fact now I know so much about autism I am convinced he is on the spectrum too, but not so much. I often feel that I have completely failed in my relationship with my son. He has now got involved in Steampunk which has been a life saver for him. Try looking for Dr Porridge on Facebook. There is light at the end of the tunnel but it will not be easy. The main thing is to get help with your depression and then everything will fall into place more easily. Look after yourself first and then you will find it better. It is not easy but it is possible. Private message me if I can help more. xx

  • Best think to do is get all of them to gether and tell them what you got and you will have to slow down a bite how long you have no one can tell you not even a doctor as i asked the same think 3 years ago to the spec in the hospital all he said was if i smoke sorter then if i stop .But they all put it down to smoking but some sites do say some one in the family would have it az well but there is many ways you can get copd as well as smoking so get them all to gether and tell them but like i said no one can tell you how long

  • Wow, I'm so thankful to all of you for taking a moment to respond. I can see this group will be very important moving forward. I need to speak to people who are living with this and/or understand it's effects first hand. I've never been part of a blog or a support group. This is new to me too. I appreciate being able to ask tough questions and also honestly express how I feel. I am really terrified, almost paralyzed with fear. I need to find a way to get past that. If I only have a few years left (I can't really wrap my brain around that at all) I don't want to spend it feeling depressed and hopeless. I have people around me who love and support me, but I am always the strong one for them. I'm the one in charge, the one keeping the machine moving. I really don't have a clue how to cope with this. I'm thankful to this group for guiding me. It means a great deal to me. I hope, one day, that I have found the strength and hopefulness to provide support to someone just entering this group.

  • Ok, more questions. For those that have a diagnosis of severe COPD/Emphysema: How long have you had severe COPD? How do you feel? Did you smoke? If so, when you stopped, did you stabilize? Or, are you getting progressively worse? I actually feel really good right now (since I quit smoking). I've never had pneumonia and never been hospitalized. I honestly don't even feel sick. A little breathless. Nothing a puff of Albuteral once a day doesn't fix. I would have no idea that I was so sick if the tests didn't prove it. I just wonder how long it will last. The statistics say I have a 67% chance of living 4 years. What about after that? Am I truly on borrowed time if I'm lucky enough to make it 4 years? Do I just learn to live with the fact that there aren't answers for these questions? Not sure how to do that.

  • yes you learn to live with there's more questions than answers.

    but theres always the answer "i don't know" so i gusse there is an answer for every question.

    in truth all the replys you've had just about cover it all..we all go through with what your going through when frist diagnosed .

    try and settle down a bit and talk to your boys they will need to know and there old enough to learn to help you..i dont know what ADHD is so i hope am not talking silly.

    the one thing that you say is that you hardly notice that your ill and theres very little breathlessness..well thats a good sign.

    we got a long way to go and there is real hope for the future. xx

  • Given your symptoms, I would have to say that the 4 years you have been quoted is wildly wrong, I don't know where you got that figure from, dismiss it from your mind , it is so very, very wrong. Take care with your lifestyle and you will die of something else, like old age, not COPD.

  • Hi Luann, I was in the same position as you are now 10 years ago, very breathless on stairs etc. Used Ventolin occasionally, but carried on my life as normal. At the end of last year had pneumonia which knocked me for six. Am now getting better on extra inhalers and trying to exercise, and hoping to join PR. Why do you think you have only 4 years to live?? I think many things are causing your depression. Your family are not going to have to manage without you for a very long time. You can die with COPD not because of it. I think you need a bit of help with your depression. Regards Lilian xxx

  • Thank you. You have given me perspective and hope. I will reach out to my doctor and be honest about my depression and see if I can get some help for that.

  • I think the 4 years parameters is no longer valid data. Nor was it ever, in my opinion. My father passed mid 80's age and he had COPD. He was ashamed too and I wish he wasn't so. He would have lived longer if he did not have other issues. Don't be ashamed. I told everyone I know that I have Copd. I know there are thousands and thousands of folks just like me. You did nothing wrong.. Smoking is a beast to give up. You are on a good path now. Positivity is your best ally.

  • Ya know...I don't have one single person in my life who has been addicted to something so severely that they live and breathe (no pun intended) by their addiction. I don't know another smoker, or former smoker for that matter. It has always been difficult to speak to my family and friends about why I smoke, what compels me, and why, despite knowing the negative consequences to myself and my family...I could not quit. Then, when I tried to quit, no one could understand how difficult it was. Most, I think, were just disappointed that I was not strong enough to quit for good. Now I have stumbled upon this amazing group of people who not only understand the grip smoking has on me, but also first hand experience with COPD to help me navigate this scary, unknown road. To say I feel blessed is a complete understatement.

  • Hi Luan, with no more fags, regular exercise, you'll have a long life, you will be fine. Some things will take longer to do but you'll get there and its not copd that will kill you off, it will be old age. Take care

  • Hi Luann, it comes as such a shock as like you I thought emphysema was an old person's disease (I was diagnosed at 50). Ten years on I am so much fitter (and certainly have more muscles). I started exercising for 15 minutes a day on a cross trainer and now do 45 minutes. I work full time but also try to make time for other exercise such as walking or cycling but not always easy. It is not always easy but you have done the hardest bit by quitting smoking - good for you! I didn't tell anyone for a long time because of the shame (it went when I found this site). Also very important to get the flu jab every year, best wishes x

  • Thank you for posting such an honest account of your life. I am ashamed to admit that I also have COPD and STILL can't stop smoking. I hate myself for it. My health is not nearly as bad as some people on this site but will be soon I expect. I went to my GP years ago to ask for Zyban to help me stop smoking. He said he would prescribe it for me but that I had to have a liver function test first as it can badly affect the liver. My liver function test showed I had Hepatitis C Genome type 4 and I almost certainly got that from a blood transfusion in Egypt many years before. (Type 4 is from Egypt) So I had to have intensive treatment at KCH and I was one of the lucky 50% that got rid of the Hep C. But by then, I was so worried about my liver that I didn't even think about stopping smoking and still continue to smoke. I know it's disgusting. I would like help and inspiration. You might be just the person to inspire me. Thank you again for your honest post.

  • Hi Pamela, I'm no one to talk. I've just quit smoking. It's only been a month. But, for the first time in 37 years of smoking, I am really convinced that I will never smoke again. There's something about hearing "severe emphysema," at only 52 years old, that seemed to give me the power to resist. The irony is that I needed to smoke to help me cope with stress..now I'm under more stress (the real threat of dying) than ever before, and I actually have confidence that I can do it. Go figure! I feel like the people on this site can help me stay off the cigarettes, deal with this diagnosis, and help me keep my depression in check. You are not disgusting. You will do it when you're ready. My only hope is that you don't wait as long as I did. Good luck.

  • You gave up smoking well done that's probably your biggest battle won .and now your stuck with us lot it's enough to make you want to start again 😊 I love this site and feel so blessed to have found it l feel like i have so many friends on here .l may never meet them but l know they are there so big hug xxx

  • I honestly can't even remember how I came across this site. I feel like it's the best thing that came out of all the internet searching! I really feel supported and I'm so thankful. Hello friend, it's nice to meet you!

  • And you my new friend I really don't mind asking anything on here however stupid i think it sounds as there are such lovely people on here that have been through what you are asking and tell you what things mean .also if people are feeling down l try to send a hug as if they are good enough to support me it's my way of supporting them .so it's lovely to "meet you " x

  • If you had a lung function test while having a cold or shortly after it is not likely accurate and another one once you have recovered may tell a completely different story. If you are walking three miles a day I think there is a reasonable possibility you lung function may be better than what the original test showed. In addition quitting smoking may also improve the results of the lung function test. Stay away from cigarettes and continue to exercise and you could have a long life ahead of you. Everyone seems to progress at different rates and some seem to plateau or stay at the same lung function for sometimes years, so stay positive as that can only help.

    All the best to you.

  • Hi Luann, I havent been on this site long but have dealt with health issues for several years including cancer, a lobectomy , Vasculitis resulting in my COPD and some kidney damage from the vasculitis and of course COPD. I am a former smoker but my severe lung condition hit me with in a couple weeks and I nearly died.

    I see alot of knowledge here and I would add that I see things as they are because the fact is I cant change it but I can have some control going forward.

    You quit smoking, that is a big step! Accept the disease and try not to stress over it because,remember, you cant go back and change it so don't beat yourself up over it!

    You should share with your family the details of your disease, they need to know so they can get educated and help you out from time to time. I have 4 grown boys and get lots of help. I had a mother who died from COPD and I was there when she took her last breath. Our relationship was not strong but now I wish I would have been more involved. You will want the help and they will no doubt want to help once they understand it all!

    i also pushed the Dr. for a life expectancy and he gave me one but I will not share it because I now know that the Dr.'s cannot determine that. They are only human. I know that the time will come when my quality of life is not what I want, and as I said ,he told me the best I could expect and it will be a while. I have severe COPD also and lost 2 lobes of my right lung and a disease trying to destroy the rest of the lungs and kidneys.

    I think I got my determination from mom and she was an alcoholic and was able to go cold turkey on the smoking but she still liked her beer and when she got a few in her she was one mean little 95 lb woman who would go after the biggest guy in the bar if she took a notion but she never complained to me of anyone that I know of about the COPD except dad but she did tell me in the ER that if it hadn't been for my dad through all of this she didn't know what she would have done. I didn't know those were the last words she would speak and went on a ventilator for the next 2 days when she finally gave up! She was comfortable and didn't suffer once she arrived at the hospital. I guess my point is, try not to scare yourself. Find an outlet for your own down time. I listen to music and my favorite artist from my childhood. I'm 60 years old and meditation with music got me through stage 4 cancer treatment and through the crap we have to put up with. Share with your family and when they or others ask how you are doing. Tell them! How else will they know or be involved unless you let them in?

    Your feeling a little guilty I bet as it seems like most people who learn about this awful disease and blame themselves! Again, don't beat yourself up. You have this site and other sites for support as well as your family to rely on!

    Sorry for the ramble but i believe that its best to move forward and accept the things I cannot change! Im pullin' for ya. hang in there!

  • Thank you so much for your reply. I sincerely appreciate your time and effort and hearing your story does help. The consensus seems to be to share this with my family now. I will take that advise and talk about this with them soon. Maybe it's best not to press the doctor for life expectancy. Receiving this diagnosis, and the internet research since hen, has made me feel sick and doomed. When in fact, I feel pretty good. That's what I need to focus on. It's clear you have had many struggles with your health. I'm so sorry for all that you have gone through. You're such a strong person. I respect where you've been, and where you're going. I will heed your advise and try to accept this and not stress over. You made a difference...thank you.

  • Stay off the Internet...ask here...We all went through the same panic,doubt,a few of us I'm sure cursed and swore thinking that's it...most of us are still here...stopped smoking...brilliant...takes a lot of guts to get rid of the crutch we've used for years...I think you do need to tell your family even old grouchy...you may be surprised how they come round when they find the centre of the family is ailing...exercising...brilliant...shows that you're gonna fight this all the way...most impressive...you are now on a site that will help you in every way it can with experiences of the same unlike a lot of professionals that are trained to stand aloof from reaction...This site has helped me so much in realising it's just another part of life...you're doing all the right things...keep on doing them...keep checking in...take care.

  • Thanks for your reply. The effect these posts have is quite remarkable. I've never been to therapy and don't like talking about my problems. But, it really does make a big difference to feel "not quite so alone" in this. The feedback has really helped me to be able to say "maybe." Maybe I won't be dead in a few years...maybe I can live with this...maybe I can enjoy life without the sense of doom. Honestly, I didn't have these feelings of "maybe" before I wrote the first post. So, thank you. I do feel more hopeful.

  • Well done for giving up the weed. If you can still walk 3 miles a day you are doing well. Your concern should only start when you cannot walk that distance each day and you cannot really find the energy to do anything. Hopefully for you if you can keep up the energy levels, whilst life might feel depressing for the time being you have nothing to feel too bad about.

    Only when you are not able to complete the walk and you are unable to find the energy to even dress yourself then you start to feel concerned but that should be a long time coming from what you are able to do at present.

    There are treatments that are open to you at your age, you could, subject to doctor's approval, try for a lung transplant, stem cell treatment, lung valves, lung coils and many types of inhaler treaments.

    Don't fret too much at this stage, try to enjoy life, timing is not a given period, keep active. see your doctor to see if you can be referred to a local pulmonary rehabilitation scheme which will teach you how to exercise, how to pace yourself. you will see people worse and better than you and take heart from their experiences. Do this ASAP it will help with the way forward for you.

  • The best thing is to do what up have done, pack in the cigs. The next best thing is exercise. Pulmonary rehabilitation can b arranged with your doctor and is an excellent start. Next discuss lung transplant. I had mine 3?years ago and now have a great life but keeping your strength up is paramount . Good luck

    Sue E

You may also like...