diagnosed with copd

I was diagnosed with copd 3 years ago by my gp, I didn't pay much attention to be honest as I didn't think it was serious.

I had a spiro test back a year ago and my test showed 88% which I thought sounded fine.

Now today I had to have another spiro test as a matter of routine

, this time the test showed up at 66%, that's a 22% drop in just one year. Now after reading on the web about copd I have got myself into a right state.

I think I am about to die very soon and it is frightening me to death.

Any help or advice would be greatly appreciated.

thanks

Vangellis

16 Replies

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  • Hello Vangellis :) and welcome to the group. We all understand just how you are feeling at the moment so the first bit of advice is to try to control your feelings of panic. You are not going to die soon. I was diagnosed 13 years ago and am still going, relatively strongly :) with a lung function of 30 %. The feelings of panic won't help your breathing either :(

    Next, ring the British Lung Foundation Helpline on 03000 030 555 . They can help a lot and can answer any worrying questions you might have.

    There will be lots of other people here shortly who can also offer you the reassurance that if you take control of this condition (instead of letting it take control of you) you have many, many more years in front of you yet :)

    If, at any time, you have doubts or anxieties, then we're all here to help :)

    I wish you well

    x

  • Hi, try not to panic. Sometimes a chest infection or some such can cause a lower reading. Or maybe you did not blow as well as you did before? I can only say I agree with the comment left by elian. I was diagnosed 6 years ago and the best reading I have ever had is 33% - but I'm still here! Some websites are not helpful and are likely to scare you to death! Ringing the BLF is good advice.

  • Hi, welcome to the forum.

    You can read lots of things that will put you even more into a panic, or you can take a few deep breaths (you need them!) and calm down, then talk to someone. The BLF have a wonderful helpline with some really nice people, you can call them Mon-Fri from 10am to 60pm on 03000 030 555. 03 numbers are usually in inclusive minutes on phone packages, although the BLF will usually take some details and get someone to call you back.

    COPD is a Chronic illness, in that it does not go away, there's no cure. But, it's down to how well you manage your own life that counts. With the right medication and a healthy routine you can stabilise the problem and live a quite normal life.

    We've all had that feeling that we've only got a year or two left and it's frightening, but then you read about people, like we have on here, who are doing better than some of the people who maybe don't take as much care of themselves.

    The BLF can send you an information pack and point you at your nearest Breathe Easy group, which is usually an informal gathering of people who are also sufferers. Being a part of a group can help, or failing that there are the blogs and questions on here. All of which are from people in a similar situation, so tend to be more helpful and factual than some of the stuff on the 'web.

    Spiro tests can be affected by your health, if you're feeling a bit off, or have recently had a course of antibiotics, for example. Your GP practise should be talking to you about your condition, if they feel it's bad enough they can refer you to the hospital for further tests and to see a consultant.

    They've not packed you off in an ambulance with the siren going, so wind yourself back to feeling anxious, not a full blown emergency yet. You can feel anxious, that's allowed ;-)

  • When I was first diagnosed with the condition, I went into freefall and panic, then pulled myself together and went to a breath easy self help group, I learn't a lot , there were people there carrying their own oxygen around but the laughter , the holidays they have. They were not going to let a little condition stop them having a life. Now its a case of oh well just get on with it. If you can find someone to talk at your medical practice. ring the blf do so there is lots of help out there

  • Hi welcome. I understand how frightened you must feel but please don't be scared. COPD whilst irreversible does not have to progress, or if it does, then not very much.

    I was diagnosed with COPD about 2 years ago but I have known for some time that I was probably going to get it. The main thing is to remember is that it is not the end of life as you know it. There is a lot you can do to help yourelf.

    If you smoke you need to stop. You need to avoid passive smoking too. You also need to keep excercising and to stay fit. A good diet is beneficial too.

    Make sure you take the medication as prescribed and learn to recognise the symptons of your lung problem ie if you get a chest infection (exacerbation) make sure you visit your doctor as soon as possible. In other words take control of your illness.

    Most of all love don't worry too much. - it is not the end of the world. You still have every chance of living a long and healthy life.

    Bev xx

  • Exactly what I would have said Hypercat. My GP says if you do these things, it won't get any worse than the normal ageing process. There is a lot of rubbish on the internet that needs to be ignored as it is out of date. BLF is a good source of info.

    Lynne x

  • Just read back what I have written and realise how much I have changed and come to terms with it. Thats from learning about the illness from a PR group (Pulmunory Rehab), the COPD nurse and last, but not least, BLF and this support forum.

    Please blog or put a question anytime Vangellis. There will always be people here who care and will support you. I have had a lot of support and care here and I am so grateful I came in. There are many fantastic people here who are suffering far worse than me who are still enjoying life despite their health problems. And they never lose their sense of humour.

    Bev xx

  • Hi Vangellis, dont worry please, i think we all went through the same when we found out, I my self cried with my son for 8hours he never left me. Ive had this for 3 and ahalf years now and Im still here, leading a different but acceptable life, I used to go to the gym for rehab, with lots of other sufferers until they stopped them, I continued at the gym but then started to feel very lonely there and had to stop going, which I shouldnt have done, when ypu go to these places as a group you encourage each other. So please dont get stressed as this doesnt help, take care love Im very new to this group but find reading and getting in touch helps me, so stay with it and youll be fine, lots of loverley people here xx

  • Some good advice given. I would add, ask for a referral to a respiratory consultant for thorough investigation to determine precisely what is going on in your lungs, this will involve various tests, scans, xray, cardiac and lungs, its routine to determine precisely what is going on and not going on, but I think best to know so you can get the medicine that is going to help you the most.

    If this year when you had your spirometry test you had a cold and/or you are without adequate medication your drop of 22% could be the result.

    Make sure you get your annual flu shot and have had the pneumonia jab just as a little more protection for your lungs and good health.

    Keep in touch and let us know how you get on.

  • Hi Vangellis, I am 66 and have had diagnosed COPD for over 20 years now and probably undiagnosed many years (15+) before that as I was on inhalers then.

    I still manage my COPD mostly myself, I am not on oxygen, I try to eat healthily and have as much excercise as I can manage, although I do have someone come into clean for me and also someone to do the garden, can't manage that anymore.

    Make sure if you think you have an chest infection coming get medication for it straight away it is very important.

    I and I expect many other on this site keep antibiotics and steroids at home ready for a flare up, (rescue pack).

    If you have a Breathe Easy group locally go there, lots of support from people with lung conditions themselves, you can find details of groups on the BLF site.

    Look after yourself.

    polly

  • Hi

    Thank you all very much for your very helpfull and supportive replies, I really appreciate them all.

    I must admit after doing a google on copd I did get some very alarming sites that scared the life out of me. Still my GP has told me to never use google for health related issues, so you live and learn.

    I feel much better after reading through your replies, and now realise it is not the end of the world :-))

    I had a heart attack in June 2007 caused by smoking and lack of exerscise, had a stent fitted in my right coronory atery, been fine since, no angina, chest pain or anything, so to be honest I think I had copd then, even though I quit smoking immediately.

    In reply to Zoee, I have NEVER been given any medication at all for copd, untill yesterday when they gave me some Ventolin spray. And yes, I did have quite a heavy cold about 6 months ago.

    I shall get in touch with the blf site and look for support groups.

    Thanks again for your replies.

    good luck and best wishes.

    Vangellis

  • Hi all, it's me again

    After reading through your posts I decided to push myself to the limits, just to see what happened.

    Armed with my ventolin spray I went for a very brisk 5 min walk, and I mean very brisk, but not quite a jog if you know what I mean. (I have let my exercise levels drop terribly lately) so I thought, start off in moderation, don't go trying to run a marathon.

    The 5 min walk consisted of about 200yds flat, then 100 yards uphill (quite steep) then 400 yards flat, 100 yards downhill, then 200 yards flat back to where I started. I wasn't puffing and blowing like I expected to be, although on the uphill part I could feel a slight breathlessness, but only slight, that stopped as soon as I got on the flat again.(nowhere near breathless enough to use the ventolin)

    So I think I shall begin walking a lot more to start of with, I shall obviously build up from the 5 min walk, even if it's the same walk 3-4 times a day, my GP has signed a referal letter for me to join a NHS gym here where I live for regular exercise.

    I think if I can build up my fitness levels I should feel much better.

    I hope so anyway

    Regards

    Vangellis

  • Excersise is very good, I have severe COPD and am on oxygen 15/24 but the OT have just given me a walker thingy so I put my oxygen tank in that and my husband and I take the dogs for a walk, only for half an hour but it will get longer, have 2 short hills which I cope with. I am 70 next month and was diagnosed 12 years ago.

  • I was thinking yesterday, For the past six weeks I have been on a blood pressure lowering drug called Ramipril, while I was on this I developed a very bad hacking cough (this is listed as a side effect in the patients leaflet) My gp took me of the Ramipril today as a result of this cough and put me on a different medication.

    I am now beginning to wonder if it was the Ramipril cough that made my spiro-test drop by 22%

    Regards

    Vangellis

  • I have just read your comment about blood pressure lowering drugs giving you a cough, sorry it's 9 days later but this may interest you.

    there is a mechanical device called "RESPERATE" . it is available on NHS. It works well by simply listening / using it to relax you 20mins each day.

    My husband had the same coughing problem and this has now stopped it. he is taking a much lower dose of blood pressure meds now, in time hopes to stop.

    forgive me if you allready know about it, if not then I hope it may help you.

    su from Somerset.

  • Hello

    Please feel free to ring the helpline and request to speak to or a call back from one of our nurses who are very knowledgeable and may be able to save you some worry and concern in the future. 03000 030 555.

    Good luck, have a great weekend.

    Heych from the Helpline.

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