Log in
British Lung Foundation
39,080 members45,934 posts

Having difficulty coming to terms with mild emphysema diagnosis - anxiety and feelings of hopelessness.

Hi Everyone, I’ve been visiting this site regularly since just before Christmas when a CT scan report came back showing ‘Mild Centrilobular Emphysema’. I had the CT due to finding some blood in my mouth after brushing my teeth (this ended up being from my nose, not my lungs). I went into complete shock, have been crying and panicking a lot and have been suffering with acute anxiety and feelings of hopelessness. I’m 39, have suffered with anxiety and depression throughout my life and this has felt like the final straw. Both of my GPs said to forget about it, to not smoke and I can tell they think my emotional reaction and all the questions im asking to be quite extreme. I said I would go and speak to a psychologist about how I’m feeling, however I don’t know if that will do much to help me as I’ve never found them useful in the past. Got a heap of blood tests done at the same time as the CT and they all came back clear, and nothing else was on the CT. Pulse oximeter was 98. Had a bad cough/cold for a few weeks last winter and a mild smokers cough - used to smoke 15 or so cigs a day for 20 odd years. Against my GPs advice I got a referral and am going to see a pulmonologist mid February. Apparently that appointment starts with a heap of tests in the lab, then the results are available straight away and I discuss with the doctor. I have stopped and will never smoke again, so that part is sorted. I need to up my exercise but haven’t done that yet as I’m feeling so low, but I will. I feel really scared and alone and I can’t believe I’ve done this to myself, the thing is I could never quit smoking before as it made my anxiety feel worse, and in turn it fuelled my anxiety. So to be honest while the withdrawals have no doubt been contributing to the anxiety I’m also feeling in a weird way relieved to be rid of them for good. I now have no dough and zero other symptoms that I can tell - sometimes I’ve got a bit of mucous but doesn’t everyone? So apart from this CT finding - three words - I have nothing else to do on, a part from my smoking history. There’s most of my story so far and why I’m writing is I want the universe to tell me that if I do the right things now I will live to a super old age with no or minimal symptoms. 20 years or so won’t cut it as I have two very young children, one is just 10 weeks old. Any advice appreciated, and I’m so glad I found you all.

56 Replies
oldestnewest

Welcome to the forum Ticks and well done on stopping smoking. That’s such a good thing to do.

Everyone is different but yes, if you take good care of yourself you can certainly live a long life and enjoy seeing your children grow up.

It’s been such a shock for you and takes time to come to terms with. Get help with your anxiety and enjoy your life with your wonderful family.

Wishing you well. Xxxxxxx

4 likes
Reply

Thanks Sassy. Funnily enough stopping smoking hasn’t felt as hard all of a sudden with so much at stake now. I’m not sure how I’m going to come to terms with all this, but I very much appreciate the support, thank you xxx

2 likes
Reply

You’ve already done a good job by talking to us. I hope you get some more replies soon. Xxxxx

1 like
Reply

I also forgot to ask - does the CT finding represent a diagnosis? And what are the odds of the CT finding being wrong? Appreciate any advice from the community.

Reply

Your doctors make a diagnosis based on CT reading, so what they say is your diagnosis. Not likely a CT is wrong after 20 years as a smoker. If you stay quit and exercise your decline in lung function will likely be just age related. It is difficult when you realize that you are responsible for possibly shortening your own life by smoking...but, that is really not anything unexpected...it's is really no "surprise"

2 likes
Reply

My GP is only going off the scan result, that’s all there is to go off as he had listened to my chest etc and I had/have no symptoms. I am getting LFT when I go to see the pulmonologist... While it shouldn’t be a surprise, it is. It has rocked everything. I’ll never be a smoker again, that is the only good thing to come from all this. Thanks for your reply and some serious exercise is next up for me to get underway. I’m not overweight and I eat reasonably well, but there’s room for improvement which I’ll focus on now.

Reply

CT scan is way better than an xray for diagnosis. We're not medics here, just experienced patients. I recall being elated when the registrar showed me the scan of my lungs. Not nearly as unhealthy as she and I had expected. Please try not to worry. COPD is not a death sentence, you're very young, I would take it as a warning to look after myself, get healthy and fit to keep it really mild. There are many 80 year olds with copd living good fulfilled lives.

4 likes
Reply

Thanks Peege - I have taken it absolutely as a massive warning to clean up my act and my life. I’m so glad your scan was better than what you were anticipating, I can understand your elation! I certainly want to live well into my 80’s, and I will be taking your advice around the fitness.

1 like
Reply

A ten week baby, no wonder you're anxious! Give yourself a break, beating yourself up isn't going to help the anxiety so I hope you will find the strength to quit that too? if you can quit smoking it proves how strong you are Ticks, that's an amazing achievement.

Exercise is a cheap, a simple start to feeling good, get that serotonin moving even if it's just going up and down the stairs.

6 likes
Reply

Anxiety is my Achilles Heel unfortunately, has been all my life. The thing is too that it is bad enough at times coping with clinical anxiety in everyday life, so this news hitting right before Christmas and with my new baby really knocked me around. I haven’t felt particularly proud of myself for stopping smoking as yet, because as you say I’ve been too busy beating myself up. I’ll try to do this somehow. But I always hated myself for smoking, each and every day I really and truly loathed what I was doing but just couldn’t stop, despite the shame. Now and thanks to emphysema I am free. It’s a double-edged sword. Thank you for your kindness and understanding and I will kick off the exercising in earnest this week (I already do yoga regularly, but I’ll also do something else). Xx

Reply

Fantastic that you do yoga already 🙏 👊 Strikes me you need a couple of people around to tell you you're marvellous. In the meantime put up some postits everywhere to remind yourself that you're a fantastic beautiful woman and remember the glass is always at least half full.

You'll get there. If you really do have emphysema it's mild and you can keep it that way. X

4 likes
Reply

The post-it’s or some form of self-affirmations is a good idea. Thank you so much for your caring and lovely words for me. They’re very heartening.

Reply

Yes, great idea. When I was struggling to get better over 30 years ago, I made posters which I put up around my house. One on my dressing table said "be a hero today". Another on the living room wall said "Today is the beginning of the rest of your life". A third on the front door said "Outside adventure awaits".

I'm sure, Ticks, you can find your own inspiring words to help you live in a more positive frame of mind.

2 likes
Reply

Marvellous aren't they. I had one, it was rather long. My then 8 year old trained me to learn the whole thing saying "mummy if I can learn all the lines for a play you can do this". It was she who wrote out the postits and stuck them everywhere. She's still an angel. ❤

2 likes
Reply

Thanks so much Ergendl! My favourite part of your post was the part where you said ‘struggling to get better over 30 years ago...’ and you’re still here, doing great! You’re very inspiring x

2 likes
Reply

If you take care of yourself, not smoking, avoid smokie atmosphers. Eat a healthy diet and exercise (stop putting it off even a walk with the children is exercises) and thear is no reason you wont make old age. Enjoy your children and look forward to a long future with them

3 likes
Reply

Thanks Corriena, I will do all of those things, absolutely. Wondering if I can ever safely sit around a camp fire again, or what is the best approach on that? I don’t do it often, but I would still like to be able to enjoy that sometimes.

Reply

Yes but like BBQ 's just be sensible stay out of the smoke dont stop doing what you enjoy just think about your health and adapt as appropriate

2 likes
Reply

Sound advice, thank you.

Reply

Check the wind direction and sit where the wind carries the smoke away from you.

1 like
Reply

Hello Ticks. On here we r all in a similar boat with regards to lung conditions. With regards to exercise, I would highly recommend asking ur doctor about pulmonary rehab. The doctor has to refer u. I have been going since 2017. U get 6 weeks on the NHS and u go twice a week for 2 hours. 1 hour is exercise and the other hour the physio’s teach u about how to manage breathlessness, how to use an inhaler properly and many other things to do with the condition we have. U meet other people and the physio’s r there to answer any questions u might have. I have felt a lot better since I have been going and would highly recommend it. Worth thinking about. Good luck. 👍🤓

3 likes
Reply

Thanks for your reply and sharing your experience Roysieboy. It’s feeling good already to become a part of a community that understands.

Reply

I have actually noticed comments about pulmonary rehab , this seems like something I would do and finding out about the correct way to take inhalers a very positive way forward

2 likes
Reply

Your dr or resp nurse or specialist can ref you. Its worth going i lernt alot

Reply

Thank you Corriena I intend to follow that up stay cosy ❤️

1 like
Reply

Welcome Ticks. Youve done the right thing quitting smoking. Eat healthily, keep active and you should be ok. In my experience, some health professionals don’t take emotional health seriously enough. I really feel for you as it’s much harder to take care of yourself if you are feeling low. Why not make another appointment with your gp and tell them how low you are feeling? Maybe a short course of antidepressant might help? Or if not done talking therapy? Either way I wish you well. Feel free to post away on here as lots of us totally get how you feel! 😊

2 likes
Reply

Thanks for your understanding Brian, and I agree with your sentiments re the treatment of the emotional side of things. Mental health manifests physical health and vice versa! We all have to carry on and keep going despite crappy health news, but I know it should also be ok to be honest and vulnerable. This stuff is a really big deal! I also agree with your suggestion re my taking something for a while, I haven’t taken anything for some years, but I think recent stressors all bundled together is really testing my mental and emotional capacity, so I know need to be proactive in dealing with it all effectively. I can really sense the warmth in your message, and your advice is bang on. Thank you!

1 like
Reply

Hi ! Welcome . I was in the same boat as you as far as my CT Scan is concerned although my PFT wasn’t up to snuff. All the advice is correct and yes we all are different. I’m not a big exercise guy but I keep it mild but I am big on clean eating which I believe is as effective although balance is the key . I always joke about how many folks here in USA are always at the gym “working out”and soon after they run to a fast food place (completely defeated the purpose) I am in the minority in putting clean wholesome food in my body and it is working . Our bodies are like cars , it’s important to put in the right fuel (food) as well as a goof cleaning and waxing (exercise). The most underrated important thing is you’ve QUIT SMOKING which in my humble opinion is the best thing you could have done . Keep doing what your doing life is much better as a non smoker.

1 like
Reply

Thanks so much for your comments RedSox. I’d be interested to hear your advice on clean eating and the best / worst foods for lung health if you would please share a little with me on this... I want to do everything I can to keep any further deterioration at bay. I love the car analogy, very apt, and I 100% agree with you - life is infinitely better as a non-smoker...

Reply

Sure thing Ticks . I add a lot of fresh greens , pineapple, apples, ginger, garlic , green tea Supplements Vitamin E, Vitamin A, COQ10, NAC as some on this forum don’t put much emphasis on food as I do that is their prerogative. Of course a good daily exercise routine is imperative as it will strengthen muscle mass and also a good positive mental attitude. The one denominator is quitting smoking . Like it or not there is factual clinical evidence that stopping smoking is the best treatment. Don’t smoke , don’t vape and stay away from secondhand smoke and other lung irritants and listen to your Pulmonologists . That’s my advice. Good luck and stay well.

1 like
Reply

Ok from your list I need to up my ginger and greens intake, and I’ll drink some more green tea. The supplements you’ve listed are interesting as that’s what I’m planning to get sorted next. I notice you haven’t included Vitamin C or D3, when I’ve noticed quite a lot of folks recommend those particular ones for COPD. What do you think?

Reply

Sorry Ticks yes I am a big proponent of both vitamin C and D 3 I’m sorry I omitted them also I do like fresh avocados which I have on whole wheat toast some mornings topped with over easy eggs. Lean protein like salmon is also good . I do have sins such as a wee cup of hot cocoa on occasion

Reply

That all sounds good, I’m assuming there’s no dramas with my still having coffee? There’s got to be some indulgences left surely??

Reply

I drink coffee every day with no guilt . I look forward to it always did and always will

1 like
Reply

Hi Ticks. You are me essentially but I'm a year older than you and my child is 7. I, however, was diagnosed because I am symptomatic and also have quite bad asthma. I can completely identify with what you've said pretty much and I too have a pretty impressive history of anxiety disorders and depression! I can't really give you any answers as I'm still in the middle of making sense of this all myself but I wanted to let you know that you're not alone. Also, you've definitely found the right place for support and friendship- I hope you find everyone to be as kind and helpful as they have been to me. Keep in touch. Xx

2 likes
Reply

Hi Artichokes, No good being similar to me with the anxiety. Not much fun is it?! I liked your description of your ‘impressive history’ - made me LOL and I can absolutely relate :) But it is true what you say, it’s good to know you are not alone and to feel supported, and likewise I intend to ‘pay it forward’ as much as I can through this community. It’s pretty hard dealing with all this with young kids in tow - you want to be a good parent but it’s hard when all you feel like doing is falling in a heap. Yes definitely do keep in touch and thanks for your kind words xx

1 like
Reply

Hi Hun, Reading all these Wonderful Answers to you, will help Big Time I'm Sure, Please Take Heed That you are never alone on Here. Listen to your inner self also. Enjoy your Long Future with you Beautiful Children and Please never smoke again. Be Strong and Avoid that Dark Place. Sending Love and Gentle Hugs. Carolina XXXX

2 likes
Reply

My smoking days are over that’s for sure. Now I just associate them with suffering and pain. Hugs right back at you too! Xx Ticks

1 like
Reply

Greetings

-- and welcome to the forum, even if in difficult times.

I was told I had emphysema when I was about 36, I think. Stupid me carried on smoking, though. I wasn't sensible, like you, or I'd not be in my state now. I'm 72 soon; much slower, more breathless, more in need of support -- but still trotting off to the cinema, to my lace groups, to pulmonary rehab twice a week... Life is different (I'll never again be able to throw double somersaults on a trampoline, for example), but I'm still here.

Anxiety, panic attacks and depression (sadly) do accompany respiratory problems. Get treatment for those first. You just had a baby!! My goodness -- that's enough for anyone to panic!

Keep off the fags; you will have loads of exercise with a little one. Stay healthy and you have donkeys' years in front of you. Just watch out for that #69 bus!!

Cheers

Catnip

3 likes
Reply

Hi Catnip, Reading your message it sounds like you’ve had your condition for half your life, and 72 and still active is great, though I understand you’ve got some symptoms you’re managing. Gives me lots of hope and inspiration. It should make you feel a bit better that I have NEVER been able to throw double somersaults on the trampoline, that’s pretty impressive you ever could! 🤩 Weirdly one benefit of my anxiety is that it has made it a lot easier just to drop the fags following this health news. The sheer terror I feel when I consider how bad things could have got had I not discovered it, is truly blinding. I could never quit before - and I’d say I had about 100 attempts over the years. Now I’m determined to fight it so it never gets worse. Why do anxiety, depression etc accompany respiratory problems - is there any research? I’m wondering is there some physical connection, or it’s just because they’re chronic conditions (and thus a bit of a downer)? I know firsthand that treatment for mental health is not straightforward, unfortunately, and I’m hopeful all this doesn’t make things worse for me in that regard over the long term. Thank you so much for sharing your thoughts and indeed, I will definitely steer clear of buses!

Reply

''tis me again, Ticks.

Its estimated that about 80%of people with lung disease have problems with depression, probably because it is (a) incurable and (b) debilitating. However, the one thing that we should all recognise is that it's _treatable_ and can be "managed".

The first and hardest step for a lot of us was to stop smoking and you did that. Then there's exercise -- you'll get LOTS of that!! Hopefully, you will be eating well, too. That really adds up to your lungs staying much more healthy for much, much longer!

Far be it for me to preach -- but if you'd like to chat, let me know. We can do that on private mails. Most of all, stay away from chills and people with colds (yeah! -- kids are germ carriers!)

Catnip

1 like
Reply

Welcome Ticks, its a shock ad you say when you find out about a serious health problem. People with COPD/Emphysema can and do live long lives but the key is to keep positive and keep fit.

Any exercise will do, but walking is so easy with young children and swimming.

Find a support group like this one and ask to be referred to the Pulmonary support group.

Well done for quit smoking you will live longer just by doing this one thing! Get something to help with cravings so you dont relapse-like Patches or Vapouring.

Get plenty if Vit C-eat healthily and look after yourself as best you can.

Try not to worry about the future-live each day well and enjoy your children-they grow up so quickly.

Distract yourself with things you enjoy and try to see friends & family so they can support you.

Its not all doom & gloom many people live long and good lives with this horrid condition.

Good luck,

Janzo 💐X

3 likes
Reply

Thanks Janzo! I definitely won’t relapse on the fags, making me stop at last is the silver lining of all this. I’ve now had the pneumonia and flu shots, have a script I’m going to fill tonight for my standby ‘rescue pack’, and the next thing I’m going to do is get some vitamins (I’m going to start with just two - Vitamin C and D3). I’m working up the courage to go down to the local gym, but I’ll get there soon. I’m going to live a long life xx

2 likes
Reply

Yes you are!! Well done 👏👏

1 like
Reply

hi i posted a while back and like you a basket case-I smoked vey little and had a ct scan and was beyond shocked when the doc said they found a trace of emphazema,i have not smoked for a long time and will see my pulmonlagist march 5th-after reading all these post to you I feel so much better and not so darn depressed its been rough because I have no one to talk to and I guess I just wanted to hear things like im not going to die really soon!

Reply

Hey Les, sounds like we’ve both had a big shock. I’m still doing a lot of reading, and a lot of thinking, and trying to come to terms with it all. I’m seeing a pulmonologist mid-Feb and are having all the tests at that appointment to then go with my CT that’s already been done. I’m looking forward to the expert advice from the doctor about how to lead a long, healthy life. I’m hopeful then I’ll have my plan of attack in place and I can largely forget about it. It is a real downer to think about too much! Feel free to get in touch if you need a chat.

Reply

As usual roey123 your advice is right on the mark . I too now just listen to my Pulmonologist and avoid many of the hard luck stories and so called expert advice on internet. As I noted in the past my Pulmonologist said quitting smoking is the best I could do and numbers, stages etc are not as important as how life has changed since quitting cigarettes. He said that no matter life will be much more pleasant without them no matter which way you cut it cigarettes are no good for you even just one. I like you am putting my trust in my Pulmonologist and my treatment and I feel better for it and worry less now on speed or lack of speed of progression. The older we get we all progress to frailty whether we are suffering from a disease or not. Life itself is a progressive disease and it excelarates after we turn 25

2 likes
Reply

Thanks Roey, that sounds like good advice.

Reply

Well done for the end of your smoking life, I did it too 5 years ago. Had a cough, smoked one out of the packet, nearly choked myself and ditched them. No aids were used as I couldn’t have patches and hated gum so went cold turkey and here I am albeit a few stone heavier 🤫. I too suffer from anxiety which isn’t nice at all. Its never easy getting going but gentle exercise walking the baby in buggy will ease you into it, once you have got yourself past the going out panic attack. Strangely enough I was taken I’ll on Christmas Eve and was in hospital for 4 days and my anxiety has somehow taken a backseat now my new worry is this bloody Oximeter on checking sats I’m obsessing. I do hope you find the best way forward and don’t hesitate to use the collective knowledge of all your friends on here they are priceless. They all put me at ease when I was scared a few weeks ago, take care x Julie

1 like
Reply

Hey Julie, interesting you mention about putting on some weight post stopping smoking, as I’m sure my metabolism has slowed down. At the same time I’m doing quite a bit more exercise than I was doing before so hopefully that counteracts any potential weight gain. I’m sure it’s easy to become obsessed with checking your readings if you have equipment at home. I’m not sure what the answer to that is but perhaps you need to limit it to say, checking it only once at the same time each week perhaps? Thanks again for reaching out and offering support, this community is really great, you’re absolutely right xx Ticks

Reply

💕 anytime I’m always around

1 like
Reply

Your anxiety is understandable, I was the same when I was diagnosed, but don't worry too much. I have been ill with lung disease for over 20 years and I'm 65 now and I can play indoors with my grandchildren, not so good outside till it gets warmer. Well done for becoming a non smoker and try to stay away from other smokers, eat a healthy diet and look after yourself, and you'll be ok.

1 like
Reply

Thanks for responding, and for your understanding. I’m going to do my best to live the healthiest life I possibly can from here and try to stop this progression as much as possible. Your story inspires me too and I’m heartened to hear that you’re still living a fulfilling life and that you say I’ll be ok. Xxx

Reply

Have no fear of dying from your diagnosis at an early age, as you now know I was first diagnosed at age 40 but still here at 69. You have a much greater chance of doing better than me as you have managed to give up smoking I didn't succeed until 13 years later which did me a lot more damage. So eat well exercise as much as possible and enjoy every minute with your wonderful children, and no reason why you will not live to be a granny in the future. I wish you well

1 like
Reply

Thank you so much for taking the time to share your advice and own experience with me. It has all been a profound wake up call for me and I’m working to get my head straight and make a plan for how I’m going to live the rest of my life in a better way than how I’ve lived it to date. Thank you for the reassurance and the kindness, it’s means a great deal! Xxx

Reply

Your very welcome and I wish you all the very best

1 like
Reply

You may also like...