Hello. I'm new to the Forum and have recently had confirmation of a COPD diagnosis (emphysema) after being admitted to hospital with breathing difficulties during a chest infection. I had spirometry tests last October but still have not had results so have no idea where I am on a scale. Nor do I know if a scale exists or what numbers mean. I feel like I've been given a death sentence. My life is falling apart and I cry every day. I'm about to start Pulmonary Rehab course but feel I need more information about my condition and life expectancy. I'm sad and scared.
Recent COPD diagnosis: Hello. I'm new... - Lung Conditions C...
Recent COPD diagnosis
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TDM2023
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Hi TDM2023
I was diagnosed with severe COPD 14 years ago. I found Pulmonary Rehab really helpful both physically and informatively. There is a 'scale' for COPD and it's interesting to know the figures but really it's how you feel that matters.
I stopped smoking and started exercising regularly and although I'm getting older (aren't we all?) I'm not doing badly.
If you register on Patient Access or the NHS app you might be able to see your spirometry results.
Don't use Dr Google.
I hope that PR brings you help and reassurance.
Thank you so much
hello, and good morning, am sorry to hear your news, I have been Diagnosed with Enphasema for 21 years, I am on Trimbow and ventolin, been in hospital twice last year , and I have my own nebuliser at home, and am very fortunate that my husband is a qualified A&E nurse. I was told 2 years ago that there was surgery which is (LVR) but there are strict conditions, stop smoking, pulmonary rehab and maintaining a healthy weight. I am awaiting an other PR. My problem is time , I am worried that if I get any worse I will not be offered surgery, that’s why I am wanting to go down the private route at the Royal Brompton Hospital/London and set up my gofundme page. gofund.me/d9593044
And am in a race against time 🕰️
I hope I give you some info ,
Take care and ask your consultant lots of questions.
Also, forgot to to say , if I was successful to have my surgery on NHS i would be donating the monies to The British Lung Foundation.
Thank you for your reply. And good luck for your fundraising- financially I can't help atm but will bear you in mind
Hi Trevor,Just to let you know, I am currently on a trial at the Royal Brompton. I have had lung stents fitted due to having severe emphysema. I had the stents fitted in two phases. One lung in October last year, the second in November. Then follow up appointments at 3 months, then six months.
I asked my GP two years ago to be referred to the Brompton which I had to push for, either my GP forgot or didn't think it was worth it.
However I have discovered you can self refer.
On receiving your referral, it gets discussed in the 'Multi Disciplinary Team who decide the most appropriate treatment for you. Then they will contact you.
I am not a private patient, I am under the NHS.
It has been a long journey but well worth it. All the staff at the Royal Brompton are amazing and wonderful.
So without going into all the details of my treatment as it would take ages I can only reccommend that you refer yourself, which you can do on their Website.
I’m like you and go on trials , you would think people would be knocking down doors to get on trials and get free medical check ups . But they really struggle , unbelievable
It’s totally calmed me down and given me a lot of confidence ❤️
I've been interested in the work they do at Brompton and have inquired about trials. It seems to me that having exacerbations and hospital stays figure quite highly in whether one would be accepted, for trials or treatment. As I don't really have exacerbations (don't think so and rescue packs very difficult to get, so don't bother) I'm thinking I'd be turned down. Also central London is a very long way from my home in the south west.
I live in Doncaster, approximately 170 miles away. Fortunately I have two fantastic friends (we have been friends for over 60 years), they helped me to visit the Royal Brompton, we used the train, with a Railcard, making travelling cheaper. We took a Wheelchair as I couldn't walk far, and managed. I had to stay in the Brompton twice for three nights and once for one night. My son picked me up by car to go home after operations. So you just have to use friends and family who I'm sure will be glad to help. Also some trials will reimburse some expenses.You will not necessarily be turned down, I never had exacerbations, my main problems were low lung function and severe breathlessness which have both improved since having lung stents.
It's worth a try if they can improve your quality of life.
I can't tell you how grateful or how much I appreciate what they have done for me. I won't be able to run a Marathon, but at least I can now leave the house without oxygen and exercise which I was unable to do before my treatment. I feel so much better mentally and physically.
Many thanks 64girl for that fantastic information, much appreciated! I'm sure many of us are not getting properly "looked at" and never see a specialist. I last saw one in 1999, when I was diagnosed with COPD with asthma. From what I've read, the RBH is THE centre of excellence for lung disease. It's a shame that people have to get quite bad before their problems are investigated and treated, but that's how it is now and probably how it's always been.
Thanks again for your post which offers hope to us all 🩷
Hi. thanks for that information I am going to follow that up , I will keep you posted , once again thanks
Hi , good morning, I knew about RBH , I have just made an inquiry regarding to be assessed, my team down here are great , but it’s been 2 years on waiting, and I have been roughly told within an other year to be referred to mult disaplinary team . Am worried if I don’t have surgery soon I may cross over to a situation that I cannot be suitable for surgery.
Hallo. I am awaiting tests to see if I can be refered to the Royal. Sorry to be personal but can you advise how much it is for LVR privately?
Oh please don't be sad or scared. Many on this forum have had emphysema for 20+ years and are still living a good and active life.
The number one thing to do is to stop now IF you are a smoker - contrary to popular belief not all lung disease is caused by smoking. The next thing you can do to help yourself is to go to a Pulmonary Rehab course and you're lucky enough to have that in hand. The people who run these courses will answer all your questions and show you how to manage your symptoms. Try and stay active. Walk as much as you can. If the weather is too foul to go out in do some chair exercises - plenty available on the internet.
Spirometry test results are very helpful in giving us a baseline: further tests over time enabling us to judge whether we're improving or maybe need some additional help but they are not the 'be all'.
Are you taking any medication to help with any ongoing symptoms? Could you talk to your GP about both the test results (GP should have received a copy of any test results on your discharge notes) and maybe discuss how you're feeling? Some GPs are very good at explaining both test results and medication. Others, unfortunately are not so good. Respiratory illness and treatment is a specialisation and not all GPs have the necessary knowledge to help. Might be worth a try.
In the meantime keep active, be kind to yourself and try not to fret too much. You'll hopefully soon be on your Pulmonary Rehab course. You'll be able to ask questions and talk to other people in the same boat. I find that helps.
Best of luck
Please don't be sad, there are lots of us here with copd who, with careful management, are living good lives. Pulmonary rehab is definitely a good first step to learning how to manage copd. I've even managed to increase my lung function, a thing I didn't even know was possible! Because of the increase (and results of many tests) I have been discharged, after two years, from the lung transplant unit! Please don't hesitate to ask questions here. It is a fun, friendly and informative forum.
Thank you for your kindness and reassurance. I didn't realise that my lung function could improve - the emphysema feels like a terminal diagnosis and I'm thinking how many years I have left so I know what time remains. It's hard to cope with that in my head 24/7. Thank you so much for your positivity and encouragement
Welcome to the forum. There are lots of people on here who have had COPD for many years, so I hope you will be assured that it is not a death sentence. Properly managed it progresses very slowly. Pulmonary rehab will hopefully give you lots of info on how to manage it. Good luck andbest wishes.
Thank you so much! People on this forum are wonderful 🥰
Welcome to the forum.I always see a diagnosis as positive,as u and drs know what the problem is & with copd,how to treat it.
You'll learn a lot about copd atpulmonary rehab
ive just finished a Pulmonary rehab course - very good - it will help you a lot. Its good to know what exercises to do and that getting short of breath is ok. I found being seen every week where you are checked in and have your blood pressure and oxygen sats tested, is very reassuring and that someone is keeping an eye on your health and by the end you ae more confident about managing your condition yourself. The education sessions are very useful too. I found being with other patients really good to chat and share tips as well and have looked for a support group since but there are no groups near enough to me - and found this group on line - which is brilliant and very supportive. So try not to worry too much - and hope you will let us know how you are getting on 
Thank you 🤗
so sorry to hear you are not coping well don’t be worried it is really how you manage it that’s important I was diagnosed 7 years ago and really struggled to get my head around it especially as I never smoked but with 1 tablet a day and a few puffs of an inhaler I’m really good better than before diagnosis as I was constantly coughing and wheezing. Think of the stuff that you are struggling with and change it there is another way I couldn’t do up the laces on my trainers so I bought one that slip on struggled with shower because of the steam changed shower head and leave bathroom door open if you spend a lot of money on summer holidays go in the winter and stay longer. Getting to know what works for you is key. Try and accept it and not worry about it take care x
Thank you for taking the trouble to reply
Good morning TDM2023. Yes your right it does come as a huge shock being told you have copd. Because there is no cure. But as people have said its not a death sentence and we all cope with it in different ways. I was told straight away my lung function test results were 33%. And meant severe copd. That was 4 years ago and I still feel as good today as I did then. I have my limitations like walking up hills. But can still walk around supermarkets and holiday resorts. Just have to stop and get my breath back more often. The Pulmonary rehabilitation course will be a big help to you and ask questions to learn about your condition. Keep in touch. Brian
Hello There, i feel i understand.I used to run Marathons and was very fit.
Suddenly my breathing detoriated and i was admitted to hospital twice ,same diagnosis as you.
Just keep asking questions, ask to be reffered to the respiratory clinic.
All the best. x
Thanks, Donnie!
The best thing you can do is the pulmonary rehab course, they give you lots of good information plus a good exercise plan to continue with at home, just make sure you eat healthy, keep exercising, walking especially, you haven’t been given a death sentence although it does feel like it when you’re initially told, just stay away from google because everyone is different, I was diagnosed with COPD emphysema coming up 13 years ago, I was then 58, I am now going to be 71 in April, think positive thoughts & exercise as much as is comfortable for you, I have no doubt you will get lots of advice from this lovely group, welcome to our group & I hope you get a lot from it, I always found it very helpful, good luck with the future & keep us updated on your health 😊💐🌺🌹 xx
Hi chook, that's exactly how I felt for a long time. The one thing you shouldn't do is look at Google and look for life expectancy as that will depress you even more. I don't even ask what stage I'm at. You should go to your gp and ask exactly where you are with this and chest xray should be done and to get on the right medication. This forum is brilliant for advice and just to talk. Good luck 😉
hi and just to add to all the great advice and support given by others here- keeping active and living the fullest healthiest life is the key. Please try not to worry x
I’m so sorry to hear about your health it’s so scary to hear 🥰 Pulmonary Rehab is amazing, the Respiratory team that run it will give you lots of information about your condition & ways to help you manage your condition. They can also refer you to medical teams for your conditioning.
I’ve just started a Pulmonary Rehab course & you meet others with respiratory problems. Sending you love & hugs 🤗 🥰 Sue x
Hi TDM2023 and welcome to the site. I hope the replies you have had reassure you and help to stop you being sad and worried. Have a look on previous posts by typing copd in the search bar there will be hundreds of replies and should give you confindence as will the pulmonary rehab course x
Hi TDM,
I can assure you that this is how we all felt when first diagnosed. That may be no help but you can be certain you are not alone and you have found a good place for support.
The first and best news is that you are going to Pulmonary Rehabilitation. You will find this an enormous help.
First because everyone else there is in the same boat you are, albeit at different stages.
And second because it is much, much more than exercises to help you stay fit and breath well. You will learn everything you need to know and the places to go to find out more (see below).
And third you will learn that this is indeed a LIFE sentence, not a DEATH sentence.
I have been on six Rehab courses and every one was a huge help; I cannot now go as my lung function is too severe - they say! I'd give it a go!
I was first identified as potentially COPD 25 years ago but not confirmed until 19 years ago. I gave up smoking at age 50 , 30 years ago. And I have a genetic input - my mother, her mother and three sisters all died from 'respiratory' (50s) complications; my whole brother has it but my half brothers (same father only) do not.
For the first 10 years it hardly affected my life; only 5 years ago and along with COVID did it change things.
I have had spirometry many times. At first I was about 50% but the last test was 32% so I rate severe. I am on oxygen all the time (2-3 litres per min) and have to use a mobility scooter at times - but I go for coffee in the town and villages every day; sometimes for brunch or lunch.
We even got a holiday last year but that may have been our last!
So here is the news -
COPD is a bugger but you can hold it off and beat it for years.
Do not smoke.
Try to get as much exercise as possible.
Keep your weight under control but do not be THIN as you may need a bit of avoirdupois to beat an infection.
Use and value the local COPD team; they are your best support.
Take your meds.
Use your bluey reliever.
Keep doing all the things you enjoy - avoid only those you do not!
Stay happy!
All the very best wishes for a long and happy life sentence....
Richard
Go here for more:
This is a combined site using the content of the old COPD site and the Asthma site. I do not approve the link up but who am I?
When I was diagnosed, it followed a few days in hospital being treated for pneumonia. My discharge letter said I had COPD. My GP said I didn't! So I pointed it out to him in the letter and he thought I should have a spirometry test. I did, and COPD was confirmed.
The test was done late on a Friday afternoon and I was given a few sheets of info printed off the computer. The nurse said, 'Don't look at the last page.' So, of course I did, and it was about 'end of life care' !
I was in total shock and don't mind admitting that I went into a decline. I had NO help whatsoever and, without this forum, I would have been in a right old state.
I learned such a lot from the kind folks on here. The main thing I learned was that I wasn't going to die! Well, not for a good few years anyway and, most likely, NOT from COPD!
I also learned that people with COPD can live a normal life. You learn to manage your condition.
Later, I was also diagnosed with Bronchiectasis and have also had asthma, which pre-dated the COPD diagnosis.
I'm 72 now and am enjoying a very happy, active life. My diagnosis has changed from COPD to Asthma with fixed airways, but the treatment remains the same.
I am currently feeling very well - better than I have done for years, in fact.
I think much of this is due to the fact that I make a point of saying 'yes' to every social opportunity that comes my way and I enjoy attending groups for art and my WI which also offers a lot in the way of craft groups.
I was very frightened at first and it took me a long time to recover from the pneumonia. I basically wrote off any chance of fun and laughter in the future and I became very depressed.
Please don't let this happen to you!
For every minus you will find a plus - you just have to look for it!
Go to the Pulmonary Rehab group - you will meet others there in a similar position to your own and you will learn a great deal. I wish I had been offered one in the early days but my GP mistakenly told me that there were no groups running in the area. I was able to correct him when I met a respiratory physio at a local Breathe Easy group who kindly wrote all the details down for me and told me to go back to him and demand a referral!
One thing you will find is that GP's don't necessarily have all the answers. Mine struggled to manage my condition for a long time before I asked to see a consultant and, after paying privately, I finally got the treatment that worked for me.
Good luck! Don't give up! Look forward to happy times and let us know how you get on.
xx Moy
Please do not panic - people can live with COPD for many years. Well, most of them, really. Pulmonary Rehab is the best thing for you. The staff is very knowledgeable, you can ask them any questions and they will explain everything to you. Additionally, their program will improve your health significantly. I consider the Pulmonary Rehab the best NHS service. All the best to you, keep strong and well, Helena
Unfortunately DR GOOGLE can be your biggest enemy or your best friend , to many people just look at the negative bits .
I personally find it very helpful but certainly don’t look at the silly things that we all have put in like ‘how long will I live with COPD’ , we are all different and I would not give time to the silly answers .
I’ve been severe for over 10 years and yes I have had to make changes and expectations but my head and body are in a good place and certainly have no thoughts of popping my clogs 😂. I’m 66 and on oxygen upon movement but still feel 16 in my head 😂😂all the best it really is not a death sentence as DR GOOGLE makes it sound ❤️❤️❤️
You have received some great advice from everyone on this forum. When I was diagnosed I also cried and went into a depression, making matters worse by going on Google. As others have said, do not let the numbers concern you as much as how you feel because we are all different. I try to walk as much as I can, take my prescribed medication, still wear a mask sometimes in crowded situations, and keep up with any vaccinations to avoid illness. Wishing you all the best.
hello and welcome. I’m very new to this forum and emphysema. I had a collapsed lung last September and a following cat scan showed emphysema. I googled every word on the results letter and gave my self 2-3 years to live. My doctors are rubbish and I only heard about pulmonary rehab through this group. I’ve only just found out a doctor at my surgery who specialises in respiratory and I’ve had to ask to be referred to rehab. I also only knew that it’s good to keep active by the good people on here, I had shut down and presumed that because I struggle to breathe when I do too much that it was best to not do much lol. I’m now trying to be more active and lose weight. You’ve done the best thing ever by finding this group, everyone is so lovely and supportive and it’s not all about our health ern posts lovely paintings and there’s some lovely pics posted too alberta is one ( sorry can’t remember everyone).
So once again welcome and keep in touch x
I've had copd for about 6 years give or take I can understand how you feel when I was told it was pure shock I thought might aswell go home and try to plod on and wait to die I had no one to talk to about docters weren't helpfull so thought I will see this through till my death nothing matters anymore I stopped going out wouldn't go if anyone invited me out only went to shop once a week if that just thought no point trying to do ought but I was WRONG you can still have a good life yes there is hiccups along the way but I got it out off prospective I found this forum and it's great I've gone from no one to everyone to talk to
Thank you. That's exactly how I feel. Just trying to get my head around it, thinking how many years I have left etc and nobody really understands and I don't want to burden people with misery and negativity
The scale for COPD is Mild, Moderate, Severe and very severe depending on your lung function. I was discouraged by Lung Consultants at my local Hospital when I enquired to be referred to the Royal Brompton. I was in the 'very severe' category, I wasn't leaving the house and couldn't do much without using oxygen.Eventually one of the Lung Consultants at my local Hospital agreed that I could be referred and told me I had to ask my GP to do the referral. I am not sure if the referral was done, but after a year I asked a GP at my Surgery if the referral to Royal Brompton had been made. I was told they could not find any information regarding a referral to the Royal Brompton. That Doctor must have referred me as I had a letter for an appointment at the Royal Brompton a few weeks later. At the appointment, I had blood tests, Spirometry tests and a 6 minute walk test (with oxygen)
I think I also had a CT scan. It seemed a long day with all the tests but obviously necessary.
As I said before each new referral is discussed in the Multi Disciplinary team and a decision made as to the most appropriate treatment if appropriate to your case. Luckily I fit into the category for the Lung stent trial or 'Breathe 2 Study' which I am currently still on.
However you can self refer as I mentioned before. Look on the Royal Brompton Website and you should find details of how to refer yourself.
Hope this is useful.
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