Hi I’m Sue and feeling very nervous about writing on a forum but I feel like I need support before I have a mental breakdown!
I was admitted in June to hospital with breathlessness, had a spirometry test in September which revealed Stage 4.
I am trying so hard to keep positive but am failing miserably. I don’t know how to deal with this news… I’m in shock and trying to find answers but I’m sending myself crazy thinking I have a death sentence.
Can anyone help or relate?
TIA
Hi Sue, welcome to the forum and don't be afraid. We really are a caring easy going community.
By stage four I take it you mean COPD.
Can I ask you, how long have to had COPD? for eg - Have you had a Arterial blood gas test?
To check the oxygen and carbon dioxide levels in your blood.?
I have COPD but not yet stage 4, that is why I asked, and are you on Oxygen?
I know you feel you are cracking up, but with what you said, you don't seem to get much support.
There are others on here better able to help you, I am not at stage 4 yet
I have aggressive cancer - How do I deal with it (I felt just like you) - I know how desperate you are feeling but, we manage,
Please stay positive, that really matter - other who know more than I do, will give you better answers when they see this.
We really are a friendly supportive group on here,
Good luck I will be following this thread.
Hi thank you for replying
Yes I mean stage 4 COPD and no I haven’t had any tests … only the spirometry test which told me tge stage. No further follow ups so I’m unclear as to how I should be looking at things going forward…
Also this is why I’m shocked at the stage I am at…. I’m not on oxygen.
Obviously I get breathless but I don’t feel like I’m at stage 4 if that makes sense!
It does make some sense, Sassy hit the nail on the head. Keep warm also, infection is last thing you need.
Yes pizza. C. Stay positive I’m stage 4 and it is managed successfully the blood gas’s need to be monitored which your COPD team will do I’ve had emphysema for 10 years from diagnosis till now. Positive is the answer and fight the depression I’m on 30mg of Citilapram you’re going to get depressed get help for it. I’ve gained much first hand experience from this lovely forum so keep posting for support. Sam xxx
Welcome to you Pizzacrazy, love the name, and hope you enjoy being part of this brilliant forum. You will get more replies I’m sure as many have COPD and other lung issues. You don’t have a death sentence although it is progressive.
My husband was diagnosed 13 years ago and is still doing well. Medications are much improved so don’t despair. Good diet and exercise will help a lot.
Take care and keep away from those with colds, flu etc. and covid too of course. Xxx
Hi there! So nice to hear a nice story regarding your husband. I googled the outlook on Stage 4 and frightened myself to thinking my time is up!
I’m trying so hard to be positive but some days I have meltdowns and it’s horrible
Xx
Hi there, i don't have copd but asthma , Small Airways Disease and CFS because of the former with loads of pneumonia, infections and antibiotics when asthma took a downturn. In my case I found it essential to rebuild the immune system to stay on top of the cold which always manage to turn into bacterial chest infections. Flipping pain in the wotsit and exhausting. As Sassy says, avoid people with germs, exercise, healthy diet and exercise have all the vaccinations like flu, covid & pneumonia.
Don't despair, ignore Dr Google for were all different - many many members have had copd for a long time as you'll soon discover.
Best use the NHS website its great & not scaremongering at all. There's also the helpline man or womanned by professionals.
You'll learn a lot here to help yourself, lots of us havedone the Pulmonary Rehabilitation group classes, mine back in 2013 was brilliant. Can be requested from GP, respiratory nurse or Consultant.
All the best, P
Hi there! Yes I’ve done everything that is in my best interest ie stopped smoking and attended the rehabilitation classes. I’m just struggling with anxiety and depression… feels like I’ve lost myself. Stage 4 at 59 years of age. Have days of feeling sorry for myself and I don’t like those days but somehow I can’t snap out of it.
Thank you x
Over the years I recall members whove worked at the exercise & lifestyle changes who've managed to improve instead of deteriorat however, it doesn't happen overnight. Take care & be good to yourself
Thank you
Yes, peege - I'm one of them who made the changes and improved from moderate to mild COPD with results bottom end of the normal range. So it is worth making those changes, doing PR. My secret weapon in the fight to keep healthy is running a weekly singing for lung health group.
Singing groups are great and they improve your breathing,I am part of a singing for lung health group and you meet new people that all have lung problems we get together once a week but most like me do it on zoom and I look forward to thursdays for singing and seeing friends, I would encourage you to do that ,you will love it and it will make you laugh.
Hello. I am Lucy. I am end stage COPD at 52. I know how you feel and was in resuss 10 times last year until I stopped smoking. Not been to hospital with a serious episode since. Too bad to do rehab course but it's not getting any worse at the moment. It is tough but I manage to stay positive most of the time. Big hug xxc
I was diagnosed almost 6 years ago with Stage 4D COPD. Not on oxygen yet, but I feel the time that happens is getting closer. I am in the US waiting to hear from Mayo Clinic on a possible transplant. I am 60 years old. The busier I am, the healthier I feel. Best wishes to you!
Welcome to the forum Sue. It is very frightening when you are first informed of your condition, but you will soon learn that all is not lost. I’m 92 now and still chugging along donkeys years after told my time was limited. 👍😘
Hi Donald! That’s brilliant! Lifted my spirits
I think it was the shock of being told stage 4, lung age is 89 and 37 percent lung function
A lot of information to take in
Xx
Bed-side manner is a thing of the past Sue. In it's place we have Dr Google who puts the frighteners up anyone visiting. You will find kind and knowledgeable friends here. 😉
Amen to that sir! Thank you so much x
I agree fully. The only reliable medical websites are the NHS site and those of a few specialist medical research teams, often at a university. Chin up Pizzacrazy!
Hi Pizzacrazy - glad you came on here. You can see that there are many people living good lives with Stage 4. But Im surprised you've been told you are at Stage 4 as 37% is Stage 3. Stage 4 starts at 30%. Last time I had spirometry the result was 36% - that was about 4 years ago. I dont really want one at the moment - Im functioning pretty well, use oxygen just for exertion, ie fast walking (which is in fact a stroll for normal people!) The reason I dont want one at present is that in general its more about how you feel than about the figures - especially if you are doing all the important things to prevent (or slow) progression. But since being told you are Stage 4, and given the distressing effect that has had on you, I thought I'd mention that, short of new classification I haven't come across, I don't think you are.
You don't say if you are still breathless. I hope your medication is optimised (the word my consultant used after changing my meds for the better). If you feel you need a medication review ask your doctor or consultant and if you are not happy call the Asthma & Lung helpline (number at the top).
Final thought: when we were British Lung Foundation before amalgamating with Asthma UK, there was one year where the BLF had "Get breathless" as its awareness campaign slogan. Breathlessness is annoying but becoming breathless through exercise is nothing to be afraid of - quite the contrary. If you can exercise, however slow you have to start, that will slow progression. Also bear in mind that anxiety can cause breathlessness so meditation, counselling and exercise can help. Good luck 
Hi there!
Thank you for your advice. I’m stage 4 but stage 3 after using my inhaler and repeating the spirometry.
I did everything I could to feel better… definitely stopped smoking and went to pulmonary rehabilitation classes (which have now stopped) so I continue at home.
I’m just struggling just lately with generally feeling down and wanting the old me back!
I feel like I’ve been told stage 4 and that’s it. I’m not sure what I’m searching for either. I never expected to be the stage because I can walk pretty well without becoming too breathless.
At present I’ve just had a migraine which I’ve never had before and feeling sick so I’m getting totally paranoid that something’s going on whilst I’m asleep.. sounds crazy I know!
Thanks to everyone for their help… I’m not very technological so not sure how to reply individually
Much love
Really hope you can get some support & get a referral to respiratory clinic. I'm 59 diagnosed stage 4 three years ago. Dr Google isn't your friend as I found out, I stick to the NHS sites as recommended earlier. I have severe emphysema, chronic bronchitis, asthma and bronchiactesis. Recently diagnosed with lung cancer which was a bit of a shock. I usually manage to plod along, pulmonary rehabilitation really helped me. I'm just getting over the dreaded COVID too which is just dragging on. I'm also doing the maintenance pulmonary rehabilitation online, I've had to take a break due to the COVID but I find it really helps me. Hope you can feel better about your diagnosis & get the treatment you need soon xxx
Aw poor you. it’s so scary being diagnosed with an illness and it’s natural to imagine all sorts and be scared and panicked. This site is packed with helpful info and zillions of tips on how to deal with COPD and what things to do to help yourself. lots of laughs too! They say with Covid research and Artificial Intelligence new things may be discovered too.
Hi Pizzacrazy and welcome,
I can totally relate to your situation. We all have a story to tell and hopefully you’ll feel you’re not alone.
I was diagnosed stage 4 in 2009 at the age of 44. I had 27% lung capacity at that point. I stupidly continued to smoke for another year or so because I was in total denial.
I’m now 57 with 22% lung capacity but feel better than I have in years. I have embraced pulmonary rehabilitation as I think that was the game changer for me. I went through the course and now go to the same rehab gym 3 times a week. We keep as fit as we can but I’ve also made firm and close friends who are in the same boat as me and both my mental and physical health have improved so much.
I’ve had my ups and downs with the illness, as do we all. I could say, “try and stay positive,” and totally understand that this is a lot easier said than done. But with a good support system around you…including this forum…hopefully you’ll begin to see you have lots of living still to do.
Sending you lots of positive thoughts and a big hug,
Lynne xx
Hi sue I'm also stage 23percent lung function not on oxygen but when I got my lung function results I also turned to this group ive been on it a few years but never say much lol but earlier this year I said how scared I was etc and I was put at ease with the reply I got its a great group so friendly good advice .
Hi Sue, I'm sorry you are feeling so bad and scared at the moment . I believe you have come to the right place for support and comfort as the knowledge of people on here is immeasurable. I'm sure you will receive so much good advice on how to deal with many things, including important questions that you may wish to ask your medical team (probably things you didn't even think of, as it's all new to you). I don't have any answers at the moment, however, I'm positive you'll get them on here 🙏.
Take care and Sending Love ❤ x
Hi please do not base everything on one spirometry test my own go up and down every time I take one. As anyone spoke to you about things up can do to help yourself? For example exercise or loosing weight etc. Are you under a respiratory consultant? Perhaps pulmonary rehabilitation would help you . Managing COPD is a matter of trial and error to find out what best suits you from inhalers to types of exercise and finding out what can bring on a flair of COPD on. Education is very important and so is self help. You will get some good advice on this site and they do have expertise via the telephone line. I went into a panic very much like you but by education and talking to other members of the site realised that it was not a death sentence but much depends on what you do to help yourself. I am nearly seven years after diagnosis and not much as changed except I am fitter and look after myself more.
Hi there,
Sorry to read that you have had quite a shock about your lung health. I hope you feel a little reassured by the replies here ?
Yes the diagnosis of COPD can take a while to come to terms with. I was diagnosed as moderate to severe nearly 20 years ago and here I am still going.
There is lots which can be done to moderate the progression of this condition.
I don’t know why they still use the stages 1-4 ?
If you look at GOLD stages they are a lot more useful and are built on how well we function rather than the condition of our lungs. Everyone is so different and no one size fits all. I will try to find the link and post it up.
Can I suggest that you join the Asthma + Lung COPD support groups online ? They can be very helpful as can the helpline.
Keep in touch with us and go well.
Pauline
Good morning Pizzacrazy. And welcome to the group. Yes it does knock you for 6 and feel like a death sentence when 1st diagnosed. But as you can see from your replies that it is not. We can carry on for years. Please try and keep as active as possible. By just doing cardio rehab exercises at home if possible and keep safe and warm and away from colds and bugs. Take care we are all in the same boat. Brian
Hi Pizzacrazy, try not to panic. I have copd but don’t know a stage the GP has never said. I don’t really post much on the site but I do read the posts daily and there are some very informative and kind people on here. Hope you find the forum helps, take care.
Hi Pizzacrazy! I think you are getting a very good idea of what this forum is all about!
I have "severe" COPD (emphysema), but that is the only label I have been given. My doctors and consultants don't do measurements or tests as such, it all goes on how I feel and pictures(X rays and CT scans). Atm I feel really good and very positive 😃
As everyone has said, look after yourself and you will have years! AND DON'T LOOK AT DR. GOOGLE!! 😘😘 xx
Hello Sue and welcome to the forum. the main thing for you to think about at this time is that you should keep well away from anybody who is unwell that way hoping you stay fit and well. Stay as warm as you can eat well and if at all do some sort of exercise. I am 73 years old and have had COPD for 33 years. Ok I am now on oxygen but I am still here and live a fairly happy life so being stage 4 does not mean your at deaths door, you may well live quite happily for many many years. So do smile stay happy and enjoy the life you have. Best Wishes Ruth
Hi Sue, welcome to our friendly forum. I have stage 4 lung disease and have been at that level for about 5 years. Each year I feel a worsening but I'm still plodding on. Lots of support here from people who understand. Best wishes, Carole.
Hi Sue 🙋♀️. I haven't got COPD but have Bronchiectasis, Asthma & recurring Aspergillosis which all cause me breathing problems. Like you I get very depressed & anxious. But you have come to the right place for support, tips & understanding. As Ern says this is a very easy going group and it is an important part of my day now (helps me feel less alone) also it is fun to be part of. Take care 😊xxx
Hi Pizzacrazy, my late husband had a spirometry test at our surgery and was told he had COPD in 2012, 3 yrs later after numerous chest infections his GP sent him for a CT Scan which revealed he didn't actually have COPD but infact Idiopathic Pulmonary Fibrosis. The symptoms are very similar but the disease very different. I get very concerned that some people are diagnosed incorrectly.
Welcome to the forum.U can lock your posts so only members can see Yr posts - it gives u option st bottom of yr post x
Hi Sue.. I'm so sorry to read your post and understand how frightened you must be. Have you family? Who's care have you been put with medically? What about ringing the asthma nurses on this forum and see what they can suggest....you don't have to be alone with this. X
I hope you find encouragement and peace Pizzacrazy in this new day. “Peace I leave with you; my peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, neither let them be afraid.” John 14:27
You have excellent responses which I’m sure have helped you to come to terms with your COPD. Someone will come to your aid when you post on here. It’s like having an enveloping hug around you. Take care. X
I understand how you must feel when they give you results it shocks you're system and ya can't get it off you're mind and then think off the worst keep off Google I made mistake doing that and frightened myself to tears I was told 6 year ago copd and with right inhalers you can have active life so don't worry I have found this forum with great peaple happy to support and share experiences it's valuable information take care and don't stress
Hi , just to add to everyone saying try not to worry too much. The best thing you can do is look after yourself. Try and keep exercising- keep your lungs working as well as you can. Avoid bad air (chemical sprays, that sort of thing) . Positive attitude, and keep doing what you enjoy. Xxx
Welcome to the forum, Sue. I hope the answers you have received make you feel better. We all lean on each other whenever we need support. And enjoy Don's funny poems, Blackbird's photos and various contributions from lots of other members. Please stay with us and post whenever you want to chat. xxx
Did you have a full Pulmonary Function Test or just a spirometry? You could be having an exacerbation which would make your results worse than what they would be normally. Are you going to be seeing a specialist? Have you been prescribed any medication and what inhalers have you been given? If you go out for a walk how far can you walk without having to stop?
I am not a doctor but it just seems strange you would be at stage 4 when your symptoms prior to your hospitalization don’t appear to have been bad enough for you to see a doctor which seems a bit odd, unless your symptoms were severe and you chose not to see a doctor?
Hi PizzacrazyGreat advice on this fab forum. Definitely not a death sentence. Look after yourself, exercise, breath,smile and try to keep a positive attitude. I was surprised when I was diagnosed. I now have the right medication, keep fit and healthy, have all my vaccinations, sing in a ukulele band, and have active grandchildren in my life, and a hubby. Take care xx
Hi Marguerita (my fave pizza) .... anyway, I too am stage 4 COPD with a side order of bronchiectasis and a few other dishes i could do without.
I am now on pretty much 24x7 oxygen. And I get frequent bad breathing sessions.
And to be honest, like you, it is getting me down a bit. But I reckon if we are still here after all we have put our bodies through we are not doing so badly.
And I think about family and friends and how I don't want to be a burden.
And, yes, this is all a bit heavy and uncomfortable but you know what? Facing it head on works for me.
So to a few things I have learned.
First, breathing control helps when things get hard. And I use the picture trick - choose a picture on the wall, or a window, or the TV screen. Then, breath in through your nose slowly on the short up and downs. Then breath out slowly on the longer top and bottom rails. This way you will get the 3 second/7-8second routine going and I am sure will find it helps.
Getting your gases sorted is also a good start. I am sure you know how it all works but in case here goes
>>(skip this if you do) - the air we breath consists of just under 20% oxygen (O2), just under 80 % Nitrogen (N), a very small % of Carbon Dioxide ()CO2) and some noble gases (noble 'cos they do not combine with anything else). Now neither does Nitrogen except under heat and pressure. But Oxygen is such an easy going molecule that it will not even go about on its own and is always paired up as O2 (and rarely and uselessly as O3). The air we breath is at pressure and so when we 'open our lungs' the air rushes in; when we breath out we have to push it out. That's where the otherwise unused Nitrogen comes in - it is the 'mass' that helps us do both these things. <<
The O2 goes to your little alveoli (minute things like grapes inside your lungs) from where it passes into the bloodstream and can get to work powering your various functions. At the same time the CO2 (created by the work your O2 does) is let out to be sent back into the air on your out-breath. Part of the 'stage 4' diagnosis is about the quality of this transfer.
Turns out I am a 'retainer' which means that when I transfer the O2 into my blood and CO2 (Carbon Dioxide) out some of the CO2 remains in my lungs. (Due to the damage done by smoking). And that blocks access for the important O2. I have been taught a trick to remove it called 'pursed lip' breathing. You breath out deeply, then in deeply and force the air out through pursed lips as if you were whistling I(which you might find happens anyway!). The idea is that the higher pressures help to force the rather heavy CO2 molecule to get moving. Seems to work.
There are some more tricks but they are more to do with bronchiectasis; if they could help let me know.
That is more than enough for now.
This forum is a good one for sharing all sorts of thoughts so stick with it.
All the very best
Richard
Hi Richard - or Timberman (Great nickname 🙂). I have Bronchiectasis and if you ever get the time/feel up to it I would love you to post any tips on breathing etc. as I know my techniques are rubbish!! 🙄😅. Take care & thank you for reading this xxxx
Hi - well I do have a couple of ideas which may help:
Huff breathing - this is when you make a 'huffing noise as you breath out. The theory is that the vibration helps to move mucus up the airways which our damaged cilia cannot do. I find that if I do this for 8-10 breaths first and last thing I can get a better day and night.
Explosive breaths - this is a bit more complex and new to me; so far I am not convinced but I shall keep at it. You start with controlled breathing - that is getting a nice steady rhythm going - 3-4 seconds in; momentary pause than 6-8 seconds out; and repeat. About three times. Then breath out deeply and I do mean deeply - if you have a feather use it to show when you actually stop passing air; you may be surprised! Then breath back in slowly and deeply; then out and back to three controlled breaths. Now draw in a really big breath and finally force it out with a huge aaargh! as if coughing. The idea is to shift the mucus which is or may be building up in your bronchus.
This can be quite hard work so take a rest before repeating it. If it hurts your throat then take it easy and seek advice.
Now a warning - I am not a clinician; just been at it it for 15 years now. So please, please check anything I say with your own clinician (not a GP; they know too little about these difficult diseases).
Hope this is of help,
Regards
Richard
Hi Richard, thank you so much for your reply. I will definitely give both ideas a try. I'll start with the first one and once I've mastered that will have a go with the second (sounds complicated! 😅). I do understand that this is you explaining what helps you and not medical advice for me personally👍. But I'm very grateful for you taking the time and being kind enough to share it with me 🙂xxx
Hi Pizzacrazy and welcome to the forum. I just wanted to add to the informative and kind posts from our members, you can contact us to chat with our Clinical Team if you wish, for support and advice about your diagnosis.
If you are in the UK you can call us on 0300 222 5800 Mon- Frid 9.15-5pm
Take care
Helpline Team
Hi Sue
It’s a real shock to be diagnosed at stage 4 but real good advice on here. Main thing is to try and improve your activity slowly a bit at a time. Keep your body weight healthy and keep your distance from anyone with colds or infections to keep things at bay a maybe improvement . Take care and don’t google too much as many of the info is unreliable. Take advice from your respiratory team . Best wishes Christi x
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