I'm 68, female ex smoker (gave up 7 years ago) and now a vape addict.
I was invited for a lung health check and had a CT scan 5 weeks ago. The doctor from the Lung Health team rang yesterday with results and said they found a small nodule in my left lung and I should go back in a year for another scan. He added that it could well be nothing, but best to check etc.
However, he added that they found emphysema and added "50% of your lungs". He then asked if I smoke or have been diagnosed with COPD. I told him when I gave up smoking and that I vape now, and that I've never been diagnosed with COPD and that I was surprised to hear about emphysema, as I don't feel I have any breathing issues and asked him to repeat the figure. He said "Yeah... 50%, well... 50-75%".
I assume he's saying that 50-75% of my lungs are affected (destroyed?) by emphysema?
He said I should contact my GP for an appointment to discuss the test results and he explained about Lung function tests etc, which my doctor can refer me for.
I am worried sick, having googled the life out of Emphysema and the presence of a nodule. I'm grateful that only one nodule was picked up, and that they don't seem to want to explore it urgently, and if it's cancer, it sounds like something can be done about it, but the emphysema news is frightening me a lot. I gather it can't be cured and will doubtless get worse.
What I also want to understand is what the 50-75% figure means. It sounds like I'm operating on barely any healthy lung tissue, which is confusing, since I feel like my lungs are working fine. The only thing I notice is that I feel very uncomfortable, breathing-wise, if I lie absolutely flat (this has been the case for the past 30 years), so I always have lots of pillows and sleep on my side. I have a lot of stairs in my home, which I'm always up and down, and feel slightly breathless once I get to the top, but assumed this was normal for someone my age. I walk the dog no problem, but I guess going up hills isn't wonderful (luckily the dog is a husky mix, so he likes to pull me) but I'm still capable of holding a conversation and I don't feel like I'm really struggling. I guess emphysema creeps up slowly though, right?
Any info/advice would be gratefully received. Thanks, people.
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Winterbells22
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I have emphysema/COPD with 24% lung function , when i was told this i also had 4 nodules , i cant do much walking at all and am out of breath after going up the stairs. The history is just to give you a yardstick.
Emphysema will progress faster while smoking and i found i couldnt vape without agravating my chest and coughing up phlegm , i reluctantly had to give up smoking and never really got started on vapeing.
The nodules just turned out to be inflamation.
Your consultant should have written to your doctor about the results and i would suggest that the first thing to do is talk to your doctor.
The diagnosis seems a bit vague and needs to be followed up by your doctor with tests to confirm the diagnosis and also properly quantify your lung function.
Dont worry to much at this stage but make sure you get a proper diagnosis
Hi Winterbells22, hopefully someone will be along soon to help you. It's scary to be given information without any next steps, but usually diagnosis is a good thing as we are then given treatment to help with the symptoms.
I would wait until you see your GP and get referred for the lung function test. Hopefully the report sent to the GP will make more sense and they can explain it to you and sort out if medication is required.
My mum had a nodule that was monitored 3 monthly, fortunately it disappeared by the 12 month xray, she was told it was probably from when she'd had an infection.
don’t panic small nodules are very common, I got told I had emphysema when I was being investigated for other lung problems. That was over 10 years ago, the % figures is your lung function compared to an “average” for age and build. 50-75% is quite a wide figure. It’s only a guide and it’s the next test will show if there is any deterioration. Unless you are a super fit athlete the figures will normally be lower than 100%, mine is now down to 25-30% I was 35% but I have recently been in hospital with a major aspergillosis flare. The % figure will do down a bit every time you have a lung infection and as we get older. Stay off Dr Google unless you are fully confident that you can see through the doom , gloom and misinformation. Emphysema is slow acting but it will impact your mobility due to getting breathless, but it’s all about adjusting to a new normal. I have more than emphysema to deal with and I got to the point of not being able to walk more than a few paces, so I now use a mobility scooter, had a stair lift fitted at home. I don’t say I can’t do it, I say how can I do it and look for tools and aids to help
I had several nodules and have been monitored with follow-up CT scans for the last three or so years.. At first they were three months apart, then six, and now have two nodules that have been stable so won’t have another CT scan for a year. Most nodules are nothing to worry about but as they can be they need to be followed up. As far as the emphysema I’m not exactly sure what he meant by 50%. They usually determine the stage by a pulmonary function test which measures how much obstruction there is in your lungs through various breathing procedures. The fact that you walk your dog and are up and down the stairs a lot in your home helps slow the progression and helps you keep in better physical condition. Stopping smoking or vaping is the best thing you can do followed by exercising and eating healthy and avoiding infections. One of the worst things you can do is smoke or vape as it continually irritates your lungs and can cause inflammation. I know some people vape to help to stop smoking but it is important to then stop vaping. Life expectancy can vary quite considerably from person to person but there are people here who have COPD for many years so you can live a long time with COPD, but keeping active is very important. I was diagnosed in 2005.
You’ve been given a bit of a wake-up call, and of course it’s scary.
But there’s lots you can do to help yourself in terms of keeping up with your exercise. It can feel unpleasant to be breathless and out of puff, but keep at it, don’t give up. That’s a major step you can take to keeping you fit.
Eat well for good nutrition and keep your weight under control, it’s easier to move when there’s less weight for challenged lungs to cope with.
Stop vaping - you’ve cracked the smoking, now get on top of the replacement. It will cause inflammation and thus breathlessness, even if you think you’ve stopped the cancer-causing bit. A number of people in the group used to smoke - not all by any means - but you know that’s another step to better health. And try to stay away from second-hand vapour, smoke and other air pollutants, they all trigger airways inflammation in those susceptible.
And get on with making that GP appointment, to get started on whatever medical help there may be for you.
Good luck, read on here, and ask away any more questions you might have. 🍀👍
hi, I was diagnosed in December 2017 with emphysema , I was actually being tested for cancer as I had lost my voice for over a week and I was on a 2ww. So no cancer but found out I have 4 holes in the top of my lungs but I felt fine, no issues with breathing and very rarely coughing. Never heard anything for about a year and then I got a txt for the flu jab as I was COPD ( no one told me) went for a spirometry test and they told me I didn’t have emphysema. I found the letter from my consultant gave it to the gp then they went into overdrive, I was issued a rescue plan and rescue pack (medication) given the flu jab asked if I wanted pulmonary rehab (I said yes) . I stopped smoking in late 2018, I also vape , I do struggle with stairs and slope’s but my breathing is ok only used the rescue pack a few times. Now I have more holes to bottom and rear of my lungs but still feel the same, I have 2 inhalers one daily and one for emergencies (as and when). After 2 years I got an appointment for pulmonary rehab but when I went it was deemed too dangerous for me to do it. Emphysema is progressive but affects people differently I used to know a guy who could only do three steps and rest so never went out. And my nan had it and she was in her ninety’s. Get all the help you need from your doctor and you will get plenty of advice from this site. Good luck for the future. Kevin
Hi, I have emphysema, was diagnosed 13/14 years ago, it is progressive but you can help yourself by being as active as possible, not sure how often you use your vape but start trying to stop using that too, I vaped to help me stop smoking but I only used I outside, never indoors, treated the same as I did when I smoked, so when it rains or weather not good didn’t go outside so eventually I found myself using it less & less, hopefully your not having nicotine in it either, once you’ve had a lung function test you will know more about your lung health, get referred for pulmonary rehab, it’s a good teaching tool for exercise & how to keep healthy & understand your lungs, good luck & keep us updated on how you get on 💐🌺😊 xx
Hello Winter bells. welcome to the forum and please don't despair; emphysema is very slow acting and you sound pretty healthy. Don't believe all the codswallop you read on Dr. Google. Damaged lungs still function, but not as well as healthy ones. (Just as well for some of us.) Your stair climbing and dog walking are a definite plus. (Wish I had a husky to haul me up hills.) If you possibly can, cutdown on the vaping- that would be the best thing you can do to help yourself. Read up about the condition on the Asthmalung site-that will tell you the truth, or even ring the helpline (03002225800) for reassurance. With luck you should have many years of active life ahead of you. I have bronchiectasis, but my dad developed emphysema in his 70ies and lasted to 83 in spite of a lack of info in his day. He was actually caring for my mum for much of that time and still having the odd cigarette. He was a tough old bird. As you can see there is lots of good advice on this forum. Good luck and best wishes for a long and healthy future.
Ooooh yes, not a good way to be diagnosed with Emphysema, and scary yes. It does take time to process and as you haven’t really noticed too many issues before this then you are likely to be in a good place with it.
The 50% they mentioned to you is likely to be that your lungs function at 50% of what is expected of a person your age etc who has normal lung function. Lung function declines any way as we get older.
Nodules are very common with this condition. I have several.
There is no cure but there is lots you can do to slow any deterioration down.
Do speak to the Asthma Lung U.K. helpline for more information. They are very helpful and you can sign up to the their online support groups as well.
Keep active and walking is great. Education and good self care is the key.
I was diagnosed with 49% lung function 21 years ago now. After I stopped smoking my lung function improved to 54% ! Yay. I am very active, 3 exercise classes a week, eat very healthily, long term meditator. Lover of life, lots of interests.
Keep in touch with us… there is good help here. Let us know how you get on with further tests.
The progression of the condition is as you know, dependent son so many different factors. Phenotype, self care, exacerbations and so on. I have Asthma COPD so the symptom burden is slightly higher than in ‘plain’ COPD. I have Type 1 Respiratory Failure.
To be honest I am not too worried about the figures/stages of my lung function. I am more interested in my own personal level of function ie what I can do day to day and the quality of my life.
Some people with COPD can do very little and people at the extreme level can do quite a lot.
Recently the house needed decorating, Until now I used to do it all myself, though this time I had to buy a decorator in. Although I am painting all the woodwork. Otherwise I am almost fully independent.
Have you seen this ? It can be quite a useful guide to how we are.
Thank you Pauline and glad to hear you are still doing reasonably well and are staying independent for the most part. Does the odour from painting the woodwork not bother your breathing?
Thanks. Yes doing ok, especially this time of year. The warm weather helps so much.
Paint. I choose low VOC paints these days. emulsion, actually Valspar is better than Dulux. And then for paint work I use the water based stuff Dulux Trade quick dry, it’s really good to use.
I use only plant based household cleaning materials too. Do all I can really to keep all the chemicals at bay. Live now in a clean air neighbourhood which also helps.
I always find these hard to do as it is so subjective. I got a score of 20 but could easily be a couple of points higher or lower as it is really hard to accurately score some of them. Probably a little lower than 20 would be more accurate.
I might be judging myself a little harsher than I should as well as everyone talks about how fast I walk and they generally can’t keep up with me, although now I do get winded much more quickly but am still a fast walker.
Hi and welcome to this friendly, informative and funny forum. I too have nodules, have annual scans but they remain stable so no worries there. I have severe copd and bronchiectasis. Please only google reputable, peer reviewed articles! The rest can frighten the life out of you! 🤣 Lots of good advice here, e g. healthy eating, exercise, appropriate meds and have fun! Ok, there is much some of can't do but so much more we can do.
Thank you all so much for your replies. I am really grateful for all the advice and experience you’ve all shared.
One thing I don’t understand, though, is how that 50-75% can be my lung function when I haven’t yet had a lung function test. The consultant was certainly keen to let me know that the emphysema is very much present, so I’m assuming his 50-75% statement must mean ‘emphysema is present in 59-75% of your lungs’.
I’ll be making an appointment with my GP soon anyway, so will no doubt get a better understanding then.
Again, thankyou all. I’m so grateful to have found this forum.
I was given a lungX Ray when I was diagnosed with 6 mm lung modules. - Turned out to be extra scarring due to COPD. Not all nodules are cancerous.
I could not walk up a hill, even aided by a dog
Best advice is to get you GP to get to know what the nodules are, while you don't know youwill worry.
I stopped smoking 30 years ago but it had got my lungs. Never smoke again they can control your COPD but they can't cure it.
I would seriously think you could consider stopping vaping. true there is no tar to clog your pipes but, is it wise to put steam/fluid in your lungs, try stopping bit by bit.
Last don't worry before you know what the nodule is. I have had two and nothing has happened.
Thankyou for your response. I agree that I need to eliminate vaping -it’s become even more habitual than smoking was for me and I have to be tough and stop it.
I think most smokers who’ve given up don’t realise (as I didn’t) that although lungs repair themselves, it’s only to a certain extent and there can be damage that is irreparable and there may not be symptoms until years later.
I’m really in awe of all the people I’m reading about here and how you’re all managing with your symptoms. Thank you again for all the advice and support.
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