How does copd affect you?

As this is all new to me, (as it is to everybody in the beginning) I'm just wondering how it affects you? Why did you go the GP in the first place? What level where you diagnosed with? What meds were you prescribed with? I'm back at Gp's on Wednesday as I'm still struggling , however I got flu! The first time in 14 years! I need more meds lol!

Wishing you all well,

Kay

:)

38 Replies

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  • Hi Kay I can only speak for myself. I had asthma for many years so had an annual asthma check with a nurse. She warned me I was heading for copd and when I got it was diagnosed as very mild. So I was lucky I found it early.

    I believe many people aren't diagnosed until they are moderate/severe as they put it down to smoking, old age etc. It's not until they realise they can't do a lot of what they used to that they finally go to a doctor. Or until someone points it out to them.

    I think there should be a lot more awareness of copd, the causes and the effects, as many smokers I know have never even heard of it. Oh they have heard of lung cancer and tumours which are a lot less common but everyone thinks - Oh I will never get that. They don't know about copd or oxygen or suffering for many years and gasping for breath and all the other distressing and serious symptoms caused by copd. There needs to be a lot more public awareness as this is much more likely to happen than the more serious and life threatening illnesses. That's my view anyway for what it is worth. x

  • I went to the doctors feeling unwell. Saw a new lady GP who examined my chest and told me to go straight for an x ray and if I had any pains on the way to go straight to A and E. This was quickly followed by an appointment with a consultant who said results showed old scars. I was able to say that as a child I had to have an X Ray having shared a bed at grandmothers with 21 year old aunt who died of TB soon afterwards.After telling him I was getting some clear very sticky mucus I was sent for a breathing test which showed I had mild COPD. Was prescribed Seratide and Spiriva inhalers along with a Ventolin one. Was given appointment to see specialist nurse who showed me how to take them properly. That was over 4years ago 6 months after stopping smoking. The doctor who started the ball rolling who must have thought I had heart problems did me a favour.I had about 4 follow up appointment with the consultant but now just have an annual check up with a nurse at the practice. Not an easy disease to live with but can't change anything so try to make the most of everything. Joining this site was one of the best things I did. Hope you keep well. Joyce.

  • Thanks Coughalot, I lost my Dad 15 years ago to copd and that is how I know about it, and why I stopped smoking. I agree with you completely about the awareness etc! How does asthma turn to copd, is it because asthma damages your lungs?

    Wishing you health :)

    Kay

  • You have got me there Nicgum! I guess asthma must damage the lungs in some way but with meds it is usually controlled completely and is reversible. That's the difference between asthma and copd. x

  • my reply to you has gone further down coughalot, sorry

  • I had a bad chest infection and doctor thought my lungs were damaged,eventually diagnosed with copd with loss of over 50% lung function.When i am sitting down i am fine but when i walk or go upstairs i become very breathless and it seems to have gone worse the last fortnight. I cough a lot and bring up lots of mucus,i do get frightened when i have really bad bouts of breathlessness, and it puts me off going out, but i know i must walk and do some excercise, roll on nicer weather.I was such a busy energetic person and the adjustment to not being able to to what i could before has been hard, but hey i'm alive and very grateful for that.

  • Let's hope spring is round the corner and you can sit in the garden, I'm sure having the heating on doesn't help with the congestion. I'm doing the gargling with salt water & (I know this sounds awful) pouring boiled water mixed with salt up my nose & blowing out what's up there! Thank you so much for your reply BG & hope that you improve as the weather get's better,

    take care,

    Kay

  • Hi Kay. I had a chest infecction and saw a young Locum Doctor who actually took my Oxygen levels first time ever, and was horrified they were so low. Told me if I got very breathless to go to A & E which a day later I did. Diagnosed COPD. After CT scan and a Consultant visit was told Emphysema Fev1 32%. Suzy

  • OMG! How quick was that Suzy! Wish we were rich & could have a full health check every year, then it would have been picked up sooner, maybe?

    Thank you for replying & wishing you well,

    Kay

  • Richer would help but I think knowledge is more important. Many smokers have never heard of copd so put their symptoms down to getting older and smoking so delay in going to their doctors. x

  • HI Kay

    I was told I had asthma, symptoms didn't match so argued I didn't and they were wrong, nobody listened. Moved from Wales to England, Dr here listened and tested and said no, I didn't have it. Asked what made me SOB he shrugged and said he didn't know. Unhappy with the answer I set about figuring it out myself. Bought a COPD screener from internet, tested myself and took it and results to Dr. He had me do one single blow into his screener, which was like my one, and confirmed I have Emphysema moderate stage, FEV1 58% and gave me Spiriva and a rescue pack of antibiotics and steroids. Strangely he removed my blue inhaler from repeat prescription though. Presumably I don't need to use it, or regular use is bad. Ive no idea.

    Carole

  • That is terrible Carole! Why don't they listen! Just as well you bought that kit at the very least you have a dx and know what you are dealing with. I do hope the meds are helping with your SOB , I don't know much about inhalers yet however I thought you could have Spiriva and ventolin, maybe wrong though as still just learning.

    Thank you for replying & wishing you better health,

    Kay

  • Hi Kay

    I do have Spiriva, sorry if I gave the idea I didn't. At the moment Im doing pretty well. Hope you are too.

    Carole

  • Hi Kay

    I was diagnosed around six yrs ago. At this point, I'm around 62% fev1. I don't use any inhalers yet. . Still working,

    Cleaning offices 5 hrs a day. As you can see, some people can do more than others. Don't know why. That I couldn't

    tell you. Let us know how you make out.

    RUBYXX 😊 ☺

  • Hi Ruby, (one of my grand-daughters is called Ruby :) ). So pleased you are doing so well :) Long may it continue :) . I'm working hard on getting well , I blamed anxiety for my breathing problems and so have let the congestion build up when it wasn't! Now I know, I'm onto clearing it! I hope lol,

    Thanks Ruby,

    Kay :)

  • Hi Ruby: I hope you wear a mask when you clean the offices, especially for when you use cleaning,chemicals. Ptotect the lungs from further destruction. Jackie

  • I did wake up with shortness of breath that was pretty bad to say the least.I never really had that before and only had a cough a few times over the previous years...so I WAS very surprised to be diagnosed with copd and then had ct to further diagnose my condition. That was April,2014. The doc called me pretty severe and wanted me use several meds. All I use limitedly is the albuterol inhaler and albuterol in the nebulizer. I am doing the PIE study..pge2 blocker study out of university of Nebraska. Google it.also take Serrapeptase 250000 units x 3 day.my hope/plan is to remodel my lungs.

  • My COPD was diagnosed during a routine check-up. I wasn't aware of anything other than a smokers cough. I hadn't been to the Doctors about the cough, because I knew what his answer would be. I was given a blue inhaler and told to use it when I felt the need, but I wasn't told how to recognise that need and gave most of them back to the pharmacist. I think I'm lucky, because it doesn't seem to affect me too much, I don't feel any different than I've felt for years. I've never been told what stage my COPD is, never asked and I don't want to know. My biggest improvement came from stopping smoking, where in just 5 weeks my lung age reduced from 96yrs to 72yrs. If anybody on this knows how that equates to my COPD stage, please don't tell me.

  • And long may you continue to feel well Steve :). Super congratulations on stopping smoking! I know how hard it is, I loved my ciggies and only stopped (13 years ago) after my Dad died with copd....he only gave up smoking when he was put on oxygen bless him...keep it up :)

  • Thanks Kay, 13 years? That's brilliant! I can only say, COPD or not, Flu will always knock you out. Don't allow how you feel right now to map the rest of your life. Forget the numbers you read on this site, just go on how you feel. I think I've only had proper flu 2 or 3 times (not counting regular bouts of man flu), it really does knocks you sideways. I can't advise you, I deal with it by ignoring it. But I'll tell you what, I like your dad - only stopping smoking when there's a risk of explosion....a proper man!

    Take care, Kay

  • Hi Steven, your FEV1 is a strong indicator for what stage you are with your COPD. It is available when you have a spirometry test.

  • well its been a long time since I last wrote and I read a lot of what problems we all have yes I think we all go through the same at the beginning some more than others you don't say if you smoked /or still do I did nearly 30yrs ago any way some 5yrs ago like your self kay got the flu that lasted 2mnths on and off the following year the same thing again they told me it was due to smoking mm i thought nothing to do with polio then // blank they put me on seratide 250it was like sucking desert dust with the use of ventolin any way last year after many complaints iam now on SYMBICORT AND SEEBRI INHALERS dont use the ventolin like all meds it takes time to get into your system hope this helps and don't for get your flu jabs OLDGRAMPS ps keep reading the posts ect every one is not the same best of luck again

  • thanks oldgramps, loving your name :) Maybe I should have called myself oldgran as we have 18 grand-children lol. And I am terrible about the smoking thing with them . I loved my ciggies and was a heavy smoker for approx. 32 years however stopped for 13...this is terrible I know however the older ones used to call me Grandma CiderFag :( Nowadays I'm known as Teenage Grandma although my breathing lately might contradict this ;) What is symbicort? I am on seebrihaler & take ventolin,

    Take Care,

    Kay x

  • Forgot to add, I don't drink cider now either, it has too many calories ;)

  • Hi there. We all have varied stories to tell of our diagnosis and symptoms. I was diagnosed in 2010 when bronchiectasis showed up on a CT scan which was being done to investigate acid reflux and weight loss problems, so it was very unexpected by everyone. I had stopped smoking about 10 years previously and was a light smoker back then. I had no real problems with breathing before diagnosis. It seems to have got a lot worse since I was diagnosed and I don't know if that is anything to do with the acid reflux having still not been resolved. I was then diagnosed last year with COPD as well and that showed up on a recent CT scan, as well as the bronchiectasis. My medication is SPIRIVA and SEREVENT inhalers daily. I tried Seretide but lost my voice shortly after starting it and got the GP to change me to a non-steroid one (SEREVENT). I got the pneumonia jab and a yearly flu jab. I tried a flutter device, Mucodyne, and a salt pipe but had no success with any of those. I do some breathing exercises and am waiting for pulmonary rehabilitation. I have passed a poor winter season with shortness of breath and chest pains and a couple of long duration infections. I have a back-up supply of antibiotics and also prednisolene. I am learning all the time about this illness and trying to manage as best I can. This site is great for seeking advice and sharing information. Best wishes to you. xx

  • Thank you for your reply stillmovin and so sorry you have had a bad winter. Many many years ago whilst I was still a smoker I lost a lot of weight, had chest pain & couldn't swallow, it was dx as oesophogitis (sp) & they gave me acid reflux tablets & that sorted it....unfortunately I carried on smoking ( retrospect is a great thing ) I will be getting the flu jab in future!. Hope feel much improved when the spring comes and we can switch the suffocating heating off and get in the garden!

    Best Wishes,

    Kay

  • I hope the coming of spring brings you a lot of relief Kay. I can feel it helping me now. I think when your spirits are lifted and you start feeling you can get out and about for walks or seeing friends in the milder weather, then that has a big effect on your health. It is not the best solution I know, when you are having infections and poor breathing, but give relaxation tapes a go for a little bit of time each day too. It can all go towards your overall treatment. The mind and your mood play a big part towards healing too. As well as the right medication of course. Best of luck to you. xx

  • I was plodding along no problem, been short of breath for years, diagnosed with asthma in 87, didn't take inhalers as I didn't like them. continued smoking like a chimney. Packed in 10 years ago and initially felt tons better, but COPD for a few years now. I feel tired and quickly get exhausted. This autumn/winter has been my worst ever. one cold after another and whilst results of specimens came back clear it felt like a chest infection on 2 occasions. COPD now moderate and the flu injection was a total waste this year. It does make me think what im going to be like in maybe 5 years from now. It can get depressing at times. thank god for facebook

  • Thank you for your reply Witchy, seems to have been a bad winter for many of us....even though it hasn't been to bad!. Like you I loved ciggies & packed in 13 years ago.....catches up with us though doesn't it :(. Totally understand your feelings on 5 years from now! If I'd known what it was I wouldn't have let myself get so congested...I thought it was anxiety ! So now my course of action is to get rid of as much phlegm, mucous, gunk as I can! Bit puzzled about inhalers? This is my thought...they open the airways, therefore helping to get rid of phlegm etc?,

    Hopefully you will feel easier just now when spring comes,

    Take care,

    Kay

    x

  • hi witchygirl, had to come in here with a response to you even though it wasn't my own post...there are a couple of things you mentioned which many of us have experienced, particularly the harsh winter we have been going through this year and the effect it has had on many of us (certainly wasn't the same last year at all for me anyway). This winter has really opened my eyes to the effect cold weather has on COPD and bronchiectasis. Also, specimens coming back with clear or 'no pathogens' results, when you are having infections which are lasting for weeks at a time. That's been happening to me (and others) too this year and it is knocking me off course, trying to understand why. Then, what you said about the flu injection...well, I have heard that too and I think the NHS is aware of that and let's hope they do something about changing that for next flu season. I also have had some 'what if' thinking about how I will be in the future with the illness if they are telling me that I am at a stage which isn't yet moderate! All I can tell myself and advise you is not to think about that stage at all but try your best to get to know how to manage this stage now/today. Wishing you alll the best for today and don't worry about later on. xxx

  • Hello Kay, well that's a lot of questions to answer,but I am sure you will get your replies as we go along. Welcome to the site, my reply is late as this is a busy week for me, about the same next week too. I have always had a cough of sorts, with lung shadows which were said to be insignificant until around 2008 when my chest symptoms changed and cancer was suspected. I was diagnosed with Asthma/ COPD in 2009 and have been treated with inhalers ever since.COPD was further confirmed in 2011, I gave up smoking in 2005. My illness as been fairly stable but must admit physical ability is reducing but some of that is age related too. Hope you soon find ways to manage your illness and keep asking questions if you need others experience.It took me three years of fighting before doctors accepted I did have the illness. Try to avoid infections or treat them quickly so you stay reasonably well. Best wishes

  • Hi Katie & I appreciate yours and all the other replies :) I find people on forums have more help than the medics, no dis-respect to them with their 10 minutes per patient & less if they are running late ;(. Phew so pleased it wasn't cancer for you x I was trying so hard not to use my ventolin tonight as I am desperate to not use it for 2 nights in a row but I had to...however I have had a bad bout of flu...I will be elated when I can miss 2 days.....I am on breezhaler once a day too. Thank you so much for your input & upset that it took so long for you to get a dx !,

    Spring is coming :)

    Best wishes,

    Kay

    x

  • Yes we have had a few sunny days and the daffodils are out so guess spring is on its way. You sound a little more cheerful now remember take each day as it comes and enjoy :) x

  • I was up at 4am to take inhaler again:( I'm going to cut back on my booze see if that helps as it's usually happening after a drink.

  • Some drinks do effect the breathing especially red wine, some drugs don't work well with booze either. So your idea is a good one, but it is hard to give up everything at once, so go gradual. Think of the things you like that you can do instead with the money you save and give yourself a treat. :)

  • I saw a programme on the television few years ago about how the body starts to react even after one pint. the lungs slow down and the heart fastens, if those are the right words. The blood temperature drops etc. and the more the alcohol consumed the more the effects increased. I have no medical experience mind you. I personally don't drink beer, but like the odd G&T sometimes even after a tiny amount I actually wake up with a headache! like half a drink can give a hangover?! Sometimes I'm fine next day.

  • hi ive just seen your post, reading the replies every one is different. i went to the docs because i was getting out of breath four months ago , they told me i had moderate copd what the ... was that. was given a booklet and sent home ( yes did read it peege ha ha) thats how i found out about it as i have never heard of it before. put on an inhaler. about a month later my lung colapsed dont know why had to have an operation to inflate it again. everything okay now have two inhalers.

    i still work full time in a cafe, get tired a lot quicker but nothing else. i dont have any phlem stopped smoking almost 3 months bit of weight on ha ha. i have learnt about copd on this site, still learning. about how exercise is good for you and that i should work hard to get weight of but feel abit at a lost because i dont seem to have any of the problems that others have i am lucky.

    there needs to be alot more information, i had hodgkins twenty years ago or more i was never told to stop smoking but since then learnt that radiotherapy can have a lot of side affects even years down the line. we all know the hurt smoking does and we still dont stop but maybe we need naging more, and more information

    keep well x

  • Thanks Moyzi, at least you got a booklet ;),...Your lung collapsed!!! What is that all about! Grrr, they should have told you why they thought it happened! Like you I had radiotherapy and I also had a radiotherapy boost which is 5 days intensive radiotherapy direct, skin touching! Burnt to cinders I was lol. What inhalers have they given you? I thought it was 13 years this month since I'd stopped smoking however since looking at my calendar it's 12, still on nicotine gum though ! Have the inhalers helped? and what are they? AND it has taken me ages to type this as I must have a crumb under my H key as I've had to re-type everything with a H in it lol :),

    Keep well and breath easy :)

    Kay x

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