Hi I’m new to this forum . I have had asthma for years and at my latest review I had a spirometery test. I was completely floored when the nurse said I had COPD and gave me a leaflet and a new inhaler Anoro Ellipta.
my parents were both very heavy smokers but I have never smoked. My dad had emphysema and was on oxygen. Im terrified I end up as he did before he sadly passed away. I was told my COPD is mild but reading all the stuff on internet it says it progresses. I feel like I’ve been given a death sentence and can randomly burst into tears.
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Pepeliscious
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Welcome to you Pepeliscious, you’ve come to the right place for friendly help and advice. It must have been a shock to be diagnosed with COPD but you’ve not been given a death sentence. Yes it is progressive but many, my husband included, can and do live for many years with it.
Medications are improving all the time and you will be monitored so that any changes can be picked up. Please don’t keep looking online but speak to a specialist instead. We can help on here too but nobody is medically qualified. Experience counts for a lot though. Take care. Xxx
Made me feel so much better. I have list done weight and am determined to exceed use more. Walking and swimming are my choices. I’ve started going to a yoga class with a lovely bunch of people.
Good advice as already been given. You do not smoke which is very good and now may be time for a few life style changes for example watching your weight and perhaps starting to exercise more. When I was first diagnosed I had the same reaction as you however six years later nothing as changed except I stopped smoking and started to exercise. COPD is not a death sentence.
Hello 😄 What Sassy says is so right. All I would add is that diet and exercise are paramount in keeping the condition at bay. Keep in touch and ask any questions, as sassy said we can give you the benefit of experience. Don't be despondent , you can keep yourself happy and healthy for years and years 😘 xx
Welcome aboard, you’ll be just fine when you have got over the shock. 🙁
I wouldn't trust a diagnosis of copd by a nurse, based on a spirometry test. Especially as you never smoked. This could be to do with your asthma and these nurses don't have the knowledge to deal with that. I think that you should look for a specialist in asthma and insist pn a referral.
As a respiratory consultant I cant agree more!! Never smokers in he UK do not get COPD. (Cue; rare cases/ developing countries and smoke inhalation in those cooking in poorly ventilated places and burning biomass as a cause of global COPD)
Reasons for referral to hospital BTS asthma / COPD guidelines; doubts over diagnosis
@littlepom has give great advice- you need someone to triple check whats going on Pepeliscious ask for a referral. The drugs used in asthma and copd are often but not always the same so starting off right diagnosis is really important
As you are a respiratory consultant I would be grateful if you could solve a mystery for me. In June/july 2023 I had two pleurodesis following four pneumothorax of the left lung. It does appear to have worked, barring ongoing pain and breathlessness. However, I am getting a persistant strange taste. It is a kind of scenty gluey taste. My bronch consultant, who is at the top of her tree, doesn’t seem to be interested and can’t answer me, cardiologist and GP just shrug. Just wondering if you have ever come across this in post pleurodesis patients.
Hi Pepeliscious - welcome, lots of good advice already. Can I just ask: you dont say whether you had what is known as a reversibility test during your spirometry test. What happens, and sorry if you've already know this, is that you do the main/first spirometry then you take two puffs of salbutomal/ventolin and wait about 20 minutes before doing the test again. If there is then a significantly better result, i.e. reversability, it is considered likely that what you have is asthma rather than copd. There may be more aspects to this, indicative of something else, but that is my understanding based partly on my own experience as someone with asthma and copd, and on what my respiratory team told me at the time.
If you do have copd, as above it really is not a death sentence. I was diagnosed a mid-moderate stage in 2000. Im still doing ok 23 years later. Ive slowed the progression down largely through exercise and it looks like you've got that sorted. Keeping up socialising with friends/family is important but so is keeping away from viral infections. This is important for asthma too of course. I endorse Littlepom's advice above - try to see a specialist and push for as much information as possible. Looking forward to seeing more of you on the forum, take care
Hi and welcome to the site. I understand your shock as I too had asthma and was diagnosed with copd too in my mid 50's. It was mild though.
The doctor said don't worry about it as something else will get me long before copd will ie old age!
I am late 60's now and am probably more stage 2 now ie moderate (don't know exactly as not had a spirometry since 2019) due to covid.
Carry on living your normal life and follow the excellent advice given by the others.
One thing I will add though is to learn to take your lungs seriously and pay more attention if you have a chest infection or something and don't hesitate to see a doctor/nurse to get it treated. This is because it can cause a bit more damager to us copders lungs.
I know exactly how you feel the same thing happened to me 5 yrs ago I had all those bad tramatic feelings for months but with right medication you just carry on and things get easier to process it but this forum has the most wonderfull peaple that can help with there experience it's being a god send to me for support take care
COPD is generic name for Emphysema or chronic bronchitis, it needs X-ray and CT scan for correct diagnosis, as mentioned a spirometry test is not sufficient for a diagnosis, poor lung function can be caused by lots of different things. I was first told I had emphysema 10 years ago, I had a yearly review yesterday and I’m still stable with my lung function only slightly down on what it was two years ago and that could be down to age, scarring etc. Unfortunately I think COPD is used too freely nowadays, ask your GP which condition you have
Welcome to the forum chook, you had the same reaction as I did when you mentioned the death sentence. Your copd is mild at the moment although it might take time to figure out which inhalers best suit you or you could find them straight away. My advice would be to go to the NHS website which will give you umpteen videos and advice about keeping fit down to food and more with copd, I wish you well with your copd. You will find this forum so friendly and informative and will always give you comfort and advice 😊
Hi sorry to hear about your diagnosis however having read your post it could possibly be a similar experience to me. About 5 years ago I was diagnosed with COPD by the nurse at my yearly asthma review. It was a shock. The following year at my Asthma review a different nurse said I see on your record you have COPD. I don’t think so. I think it’s just your Asthma & said she would remove it from my records & changed my inhaler to Fostair. So definitely try to get it checked further just to sure.
Hi and welcome, I was diagnosed with emphysema in 2017 after a 2ww for cancer, found no cancer just 4 holes in the top of my lung. One year later GP told me I needed a review then they told me I didn’t have COPD . I pointed out the letter from the oncologist and then I have COPD. Go for the review and they ask about my inhaler (was never given one) . After that went through 6 different inhalers to find the one best suited to me and then they gave me an action plan (tells you what you need to do in certain situations) then I was given a rescue pack(antibiotics and steroids) which I have used 5 times already . So make sure your GP sets this up , they may get you to have a scan and refer you to respiratory clinic. Like others have said it’s no life sentence although progressive it can be very slow. In my case my last scan showed that I had more holes on the bottom and rear of my lung but feel no different so it is very slow. Just make sure the doctor puts everything in place for you so it’s in place for when you need it. Have a good day. Kevin
Hello Pepeliscious, Welcome to this supportive and friendly forum. I have mild to mod COPD since 2009 and have taken an inhaler since 2020.
With information from this forum, I asked the GP to attend a pulmonary rehab. course in 2023 which brought its own improvement in health; strength and well being. From there I went onto a referral to the local Gym and with an action plan from a lovely trainer and now attend weekly. I’m so pleased with feeling better and my breathing has improved. I feel more in control and more positive with living with COPD.
The GP apractice has stopped all assessments for COPD since 2020. I’ve bought a peak flow meter from Amazon and check levels every now and again. Also the nurses on line here are very helpful. In addition the physios at the Pulmonary Rehab centre have said I can contact their phone help line manned by a nurse, for as long as I live! What more can you ask for.
As you gain information about COPD and learn to live as healthily as possible, you’ll feel more confident and better. 🤗x
If it’s any consolation, I was diagnosed with moderate/severe COPD about 8 years ago after complaining about incessant winter “colds” for 6 years - I’d never smoked and it turned out that the “colds” were undiagnosed late-onset asthma. Other than a complication called bronchiectasis (which results in excessive lung mucous), I never really noticed I only had 53% lung function, and the actual symptoms of COPD can vary widely.
The most important point to remember is that all lungs deteriorate over time, and the diagnosis of COPD is based on a comparison with the so-called 95percentile population, taking account of age, height, gender, etc; so you would expect everyone’s lungs to deteriorate as they get older. If you’ve got mild COPD then yours has probably deteriorated no more than 10% compared to the 95%tile range, and at least 5% of people have normal lung function even though they are outside this range. My lung age (90) hasn’t changed in the 8 years since I was first diagnosed, so I suspect the treatment has stabilised it (which is obviously what you want any treatment to do); my actual age is gradually catching up with my lungs! So it’s entirely possible that, with the right treatment, your lungs will simply deteriorate at the same rate as everyone else’s and remain at the mild COPD level.
Welcome to the forum, as you can see you will find support and information from members with a wealth of lived experience, you can also call us at the helpline to speak to our Clinical Team if you wish, they can answer any questions and discuss worries you may have. We are here Mon- Fri 9am-5pm on 0300 222 5800
Welcome to the forum. I hope all the answers you've had have cheered you and convinced you that you are not heading for an early grave. In fact because we lungies exercise and eat sensibly, I think we are probably healthier than many of our contemporaries.
I was in shock when I got my diagnoses of COPD as I had quit smoking 24 years prior. I was brought up in a house where my dad was a heavy smoker... also smoked in the car! I went on the internet and had myself in a very bad spot mentally. Then I joined this forum and all these wonderful people brought me out of my bad outlook!! Going on almost 3 years since diagnosed and nothing with my breathing is notable worse... actually I feel it's better!! I love walking and I feel that has helped me immensely. Need to get back to my long distance walking... had a total knee replacement 4 months ago so the fast walking isn't happening quite yet!!But still go out to the grocery store to do my walking... usually average 1.5to 2 miles . So please try not to google COPD and chat with these wonderful people on this forum. The knowledge and bouts of humor are just great!!
Thanks. My parents both smoked non stop in the car and it makes me cringe to think how much smoke me and my sisters were subjected to. I visited my doctor today who was very reassuring.
I was just diagnosed with emphasema yesterday and I feel the same way. I stopped smoking cigars and pot 9 months ago! Everything has gotten worse since I have. I'm trying the anora ellipta first time today. What makes this diagnosis tricky is the word attached to it .. PROGRESSIVE!And the thing that's scary at least for me is that like most others , don't know the time frame of that progression. 😞
Good luck . I had a long chat with my Gp who was very reassuring. I think reading all the stuff online is very scary . I am hoping that I can be maintained at the current level for quite a time.
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