I don't know what to do, am I going to die? How old are you all? Not got the results from the xray yet but the doctor thinks its a done deal

She has put me on steroids and a Salamol blue inhaler but this tells me nothing, would anybody know please. From what I've read you all seem really nice and supportive to each other which is great, at least you all know whats happening to each other. I've read alot of your comments but I think Im still in shock from being told I'm 99% suffering from COPD. Do you have to stay in hospital or does the doctors surgery deal with it all? Hope you've all had a good day x

41 Replies

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  • Hi there I am new here but I have a friend/neighbour male aged 75 with COPD an he has a good life goes to his caravan every weekend he always has a smile on his face hope this helps as I am also waiting for my results of lung disease x

  • Hi taffydaffy, thanks for helping, does this mean I'm not doomed to immediate death then? Do they put you in hospital? x

  • Hi, welcome, slow down, don't panic. Just take some time to have a read around, pop over to the BLF main site if needs be to find out more. >>> blf.org.uk/Page/Recently-di...

    In short, we'll all die one day. There, now forget about that for a while :) You could have many good years ahead of you yet. There are lots of people here who've been diagnosed years ago and are still very much with us. Bear in mind that there's always someone worse off than you are... ;)

    Best advice is to call the BLF helpline, open 10am-6pm Mon-Fri, 03000 030 555. They'll take a few details and call you back, so don't try reeling it all off as soon as someone answers. Have a chat and ask any questions you like, the team (usually) know the answers.

    I'm not a million miles from you, I'm over in Donny. There are Breathe Easy groups, local people like you and I, who meet in different towns. Barnsley Hospital, Badsley Moor Lane Hospital, Rotherham and Quaker Meeting House, Sheffield are your nearest. Ask about these when you speak to the helpline.

    There are hundreds of messages on here if you just want to do some reading. Click 'Blogs' or 'Questions' on the blue menu bar. The front page only shows the most recent.

  • Sorry Gordon, was typing my reply at the same time as yours but you were faster!

  • Hi, nice to meet you! Copd is the umbrella term for bronchitis and emphysema. If it's emphysema you have, if you've only just been tentatively diagnosed then the chances are you will be at the mild, or maybe moderate, stage. You will most likely be treated by your gp who will have a respiratory nurse at the surgery, and you may have to go to the hospital for lung function tests to more accurately diagnose your condition. The British Lung Foundation have a great website and if you copy and paste the link below it will take you to the overview of copd. You will also see causes, symptoms, diagnosis, treatment and living with the condition at the top of the page just under where it says "COPD". You will be reassured by reading the information that the disease is manageable if you maintain a healthy lifestyle from now on, the major thing you must do without delay is stop smoking (if you do!). Any questions you have will always been answered by someone on this forum, so don't be a stranger and don't worry! Libby PS: I'm 60!

    blf.org.uk/Conditions/Detai...

  • Hi Libby thanks for your answers you seem as if you have everything together, I won't be a stranger I need as many people,please can be bothered to chat to me, many thanks in advances xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

  • Hi Classybird......welcome to this site.

    All good advice given so far lots of knowledgeable people on here.

    Not sure of our youngest and oldest members...im 73.

    I think we range between our 30s and 80s.

    Take care and don't worry....Ivyleaf

  • Hahahahahahaha, you know me already then, 'don't worry' - its my middle name Ivyleaf x

  • Hello Classy

    Like you, I am new to this web page. I have found that everyone is very kind.

    Also, like you, I have not yet found out exactly what is wrong with me. I have had a two operations for cancer - four years ago and again two years ago. You will probably think that I am somewhat 'cracked' because I found the cancer diagnosis easier to deal with than what is happening to me now. I have serious problems breathing and it scares the hell out of me when I have a bad experience. Nothing has yet been confirmed but I have been told that I have emphysema, asthma, COPD and goodness knows what else. As I mentioned before, though, nothing has been confirmed.

    Yesterday I had the result of some blood tests - I've been told that my red blood cell count is high. I was also told that my oxygen saturation is very low. Today, I had an x-ray at Falmouth Hospital and have a further appointment at my GP's surgery in a week or so.

    I must go to Bristol on Saturday to be with my son who is having chemotherapy at the BRI - I am going to Bristol alone and am really anxious about being able to complete the journey. I'm afraid that I will have a 'breathless episode'. However, my son is the most important thing in my life so I must go to support him at his chemo session.

    There are so many people on this site in a far worse state than I am in that I feel guilty for being afraid but it is very scary not knowing what is wrong.

    I hope that you (and I) manage to come to terms with whatever the diagnosis is.

    I will be having a look at this website every day and I wish everyone on it all the best.

    Look after yourself Classy and (with me) wait until we have a definite diagnosis. Once we have that then we can go from there.

    Best wishes to everyone

    Annec

    x

  • Well it sounds rather like we will be going into his together Annec so lets try and be there for each other. How old is your son whose having the chemo? Not having a good time love are you?

    Best Wishes and regards to you all, Classybird= Louise

  • Hi Annec,

    We'll both be having a panicky weekend then as I have to drive to Andover to collect a mobility scooter (60miles each way) and I hate being more than 10 mins from home!

    Lucky

  • Hi Lucky

    I have to admit that I am not driving! If I have to drive up country (past Truro in Cornwall) then I won't do it.

    The last time I drove past Truro, I went to collect my husband from a ship in Portland (he was in the Navy). Falmouth to Portland in Dorset does not involve driving to just outside London - unfortunately I ended up outside London. When I eventually met my husband his greeting to me was "Where the hell have you been".

    Good luck with your drive to Andover.

    Best wishes

    Annec

    xx

  • Hi Annec

    Have ducked out of going...emailed the guy and told him how anxious I was about it (collecting a mobility scooter) and he very kindly offered to bring it to me instead. What a relief!

    BTW I wasn't actually going to do the driving, my hubby was, but just the thought of going so far from home was freaking me out - I'm a daft mare! I do drive to my doctors and hospital appointments but they're local, I just hate all the traffic on the roads now, especially when I don't know where I'm going - I just panic!

    So glad I don't have to go now.

    Lucky

    xxx

  • Just to clam you a bit hopefully, emphysema is part of the umbrella term of COPD...so is chronic bronchitis and a lot of times there is a reversibility component to the illness which they diagnose as asthma so you've not really been given lots of different possibilities - just the same diagnosis as mine.

    Breathlessness from panicking is a bit different but understandable for us all, given a bombshell that our lungs aren't behaving properly.

    When your oxygen sats are low your bone marrow reacts by producing more red blood cells to help carry more oxygen round your body - hence your blood test results.

    All part and parcel of the same darn thing - dodgy lungs! No, don't panic, lots of us live for many a year...you're not doomed by any means.

    I can completely understand what you mean about cancer being easier to deal with...we all know so much more about it, it's 'x' the unknown quantity that's so frightening.

    Hope this helps you to tie things together a bit.

    Good luck with your son in Bristol this weekend, I hope that all goes well.

    You take good care and don't be a stranger.

    Luv

    Lucky

    xxx

  • Hello Lucky

    Thank you for your lovely message.

    Annec

    xxx

  • So .... does it mean that if you have enlarged red blood cells it is the same as having more red blood cells? Do you or anyone else know?

    Now I ask myself, do I start looking at my blood tests even more closely or is it just more 'bad news' that eventually I give up on as there's little I can do about it - I may have good control mentally over my feelings but not sure it extends to controlling my blood cell production :-)

  • Hi,

    No, it's not the same at all. There could be all kinds of reasons for enlarged red cells. It could be a simple vitamin or mineral deficiency but if you've been told this then your doctor should be investigating the reason behind it.

    Good luck,

    Lucky

  • Thanks Lucky - it was a bit off topic but ...

    I'll add it to the list for the GP

  • No problem Hun

    xxx

  • Hi Annec

    Sorry for your ignorance with your condition and what you need to do is to speak to your doctor who can tell you and to keep yourself from worrying.

    I myself have had a bad bought of pneumonia so that takes a while to get over so although you know this is bad the Dr says it will take time and carry on as normal to a degree and it is up to me to find that degree between doing good and going over the top.

    Kindest regards

    Terry

  • Hi Classybird. Some people have had COPD for 20 years and are still going strong so try not to worry.

  • Thanks for your kind response Puff, that sounds promising, like I said to someone earlier, panic, fear,ignorance all got to me in the middle of coughing being breathless and just figured this must it, I'm gonna die now but I don't want to, I have too much to look forward to, I need to be on a quickly sorted out med plan so I can get on with my life then, these big wheels keep on turning but sometimes too slowly!!

    Kind regards PTMD. Classybird= Louise

  • Hi Classy,

    Please don't panic, it's the worst thing you can do...will take your breath away even more. Most of us have a long life still ahead of us and certainly don't intend to spend it cooped up in a hospital bed, we all do what we can, when we can. Just accept that you may have to slow down a bit and enjoy the scenery as you go!

    Good luck with your results,

    Lucky

    Xxx

  • You got some good advice there girl,,try not to worry we all in the same boat,,we all live full lives,,,,,,,,,,, you just have to put brain in gear a bit more,,dont be afraid to ask gp things thats what they are there for

  • I think we all probably have been through this initial panicky stage, but remember it will pass.

    There was a really good blog on here a couple of days ago, which I think is worth reading / listening to. blf.healthunlocked.com/blog...

    I was diagnosed with COPD some 15 or so years ago and am still here and intend to be here for quite some time. Take heart, manage your condition and realise that, although life will never be the same again, it can still be a good life.

    By the way, emphysema and COPD are one and the same thing. COPD became the umbrella term for emphysema and bronchitis a few years ago - no idea why, but my favourite thought is that it was because doctors could not spell emphysema, so made it easier for themselves!

  • Hello from me too. As everyone says DON'T PANIC :)

    I am 58, have COPD (emphysema) and it really doesn't affect my life. I work, I have never been in hospital and don't need oxygen

    Key things are don't smoke, keep fit (proper aerobic exercise), maintain a healthy weight and eat good foods.

    As Gordon said, take some time to do your research on this site and ring the BLF.

    Lynne xx

  • check out the blogs about breathing exercises on here ... very helpful :)

  • Hello Classybird, if you click on my name you can read my' about me' and you will see you have a lot of life left! Keep well and have a positive outlook!

    Carole x

  • Panic is one of our big enemies, the more we worry and think about breathless attacks the more likely we are to have one. Your GP can give you a mild calm down pill (diazepam) which might help, but if you read through this site you will find lots of advice on breathing and controlling the attacks before they get out of control. Speak to the helpline they can explain what is happening to you so you understand what is going on, this is a great help in controlling it all.

    Maurice

  • Hello Classybird. I'm new to this site like you and still coming to terms with copd. I kept having chest infections, breathless and a dreadful constant cough. The damage to my lungs is through smoking for 6o years. I am now 78 and like you, thought I would die soon. However, I gave up smoking 5days ago only but hoping that in a few weeks I can get back to doing gardening and housework without getting out of breath every couple of minutes. It hasn't put me in hospital yet but it was only a matter of time if I didn't quit smoking. I hope you keep coming on here and sharing. There is such a lot of support on this site.

    Take care, Marina x

  • Hi Classy pl ease don t go into meltdown I was diagonised in 1998 and have kept well until the last six months hasn t been a good winter , could be something to do with age as well I am now 75 .I did give up smoking when advised, and keep as mobile as possible There is a lot of help out there and if your doctor hasn t supplied it try BLF pr breathe easy groups As for the hospital question I ve only been in once , hope this helps.

  • Hi I'm samantha I am new to this site too .but I have emphysema badly but I don't have to stay in hospital I have always got infections but unless my sats drop very low then I'm at home .your doc should give you inhalers that you need for your lungs .pleasedont worry about going in hospital hopefully you can manage at home .i do hope so take care Sam

  • Hi I was diagnosed 10 years ago and am now on the transplant list. When I have been really worried I have found the BLF to be most helpful, its great listening to other people but for the real professional advice I would recommend talking to them they are far more knowledgeable than doctors and nurses as far as I',m concerned and can really put your mind at rest.Susie Q

  • Hello Louise

    My son is 44 (I was 20 when I had him). Unfortunately, I didn't have any more children but I would have loved to have more children.

    I'm off to Bristol on Saturday so that I can be with him for his chemotherapy session on Monday. After this session he only has three more to go.

    I wish that I could be with him to look after him but he has a partner, Laura, and she is lovely so I think if I moved up to Bristol I would be seen as 'sticking my nose in'.

    Like you, when I have a 'problem with breathing session' it really does scare me and I think I am about to die. I'm not being a drama queen that is really what I think.

    You must let me know how you get on and I'll let you know what is happening with me.

    I noticed on TV that it is supposed to be a really cold weekend and that snows is expected. If it snows down here (Falmouth in Cornwall) and I can't go to Bristol then I am going to throw myself on the floor and have a 'paddy'.

    Best wishes lovely girl.

    Annec

    xxxx

  • Hi Classy, i'm so glad you asked this question, its exactly how i feel but was scared of saying as everyone on here so brave & seem to be coping much better than i am, i was diagnosed 2 yrs ago, i still panic about it & i'm struggling to accept things, head in sand is how i dealt with it at first but then i spent a week reading the advice on here & now i'm starting to join in & feel a little more optamistic about life with copd i'm even plucking up courage to have another go at quiting fags, after failing 5 times over last 8 years! but Marian(teabag333) & Lucky are making such a grate effort i am determind to try again. So i think you'll be fine & if you are down or scared come here & the amazing, brave & kind bloggers will support you, karen xx

  • Hi Karen,

    I think we all have our 'scared' moments. I first tried to give up smoking twenty years ago and failed miserably after six days, ending up in A&E having an all out panic attack having tried to drive into a brick wall!

    So...it's taken me twenty years to make the effort to take my life back into MY control, twenty years of psychiatrists, benzos, antidepressants, antipsychotics, ECT, in-patient psychiatric for three months (ten years ago), chronic loss of memory...you name it, I've been there.

    I was diagnosed around the same time as you were so I've been burying my head a bit too - only found this site myself two weeks ago!

    Thanks for your acknowledgement of my effort to quit smoking - believe me - its a huge one this time as my condition has deteriorated so much in the past year, I blame the rotten weather! Had two infections back to back and now can't walk my lovely dogs anymore!

    Am awaiting PR to try and get myself fitter. Hope it's not too long in coming.

    Lucky

    xxx

  • Hi classybird just wanted to say hi and welcome to the site. I agree COPD is not a death sentence. With luck, proper medication and looking after yourself many sufferers can lead a more or less normal life. And live a normal lifespan.

    We all understand how difficult it is to get a lung problem diagnosis but we are living proof that life carries on...often its just a matter of adjustment. So don't panic please.

    Bev x

  • Hi Bev and others that have responded to my little panicky modes, over the last 2-3 days I feel I have answered alot of my questions by reading the blogs and look forwards to reading the questions I look at afterwards that other people have asked. Just like to say a big thank you to you all - xxxxxx Classybird Louise

  • You could live many years with copd. In fact something else could get you first. You may like to look at my copd blog. it can be found at bitz-and-bobz.co.uk/copd/

  • Hi there, Have just read your question, welcome to the site. Yes, everyone here seems really nice, and give lots of advice etc., it really helps, and people like Gordon57 cheer me up . He is always positive, which is what we must try to be, and makes light of a lot of things. I tend to be a bit pessimistic, but reading posts from people like Gordon, and King of the Cocktails, helps to make me think positive again. I hope you will find some comfort to your worries on this site, im sure you will. Take care.

  • Hi Classybird, im a mum of a daughter who recently got told she has some form of COPD, she is only 28. I went on this site the day she was told as i was feeling much the same way as you are, by the time i read some of the replies i felt a million times better, the people on here are wonderful and put you at ease. My daughter still has a load more tests to have but its lovely to know i can come here and ask anything and someone will know the answer or point you in the right direction. Take care and im sure we will speak again. Elaine x

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