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I had my annual copd review this week

Posted , 8 users are following.

hypercat
hypercat

I am a bit confused by the results.  According to the nurse via spirometry my FEV1 has increased from 66% to 78% in just over a year and I can't see any reason why.  I actually feel worse with more sob.

The nurse ignored my 3 chest infections in 4 month,  my 'severe' symptoms such as not being able to keep up with my peers walking on the flat and also having to stop for breath after walking on the flat.   When she did my sats they were only 91% and they are often as low as that.  

She said all these are because I am still smoking.  Could this be the case?  I don't want any smoking advice please as I know I must give up but do you think I should investigate these symptons further?

She said I looked a good colour and wasn't out of breath talking to her so she wasn't worried.   

I think this is rubbish and she is fobbing me off.  What do you all think please?  

Thanks  Bev x

0 likes, 69 replies

69 Replies

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  • julia14760
    julia14760 hypercat

    Posted

    Hi bev, I have had copd for 10 yrs now, I still smoked till 5 yrs ago until I almost died with respiratory failure. I used to tell lies and tell doc etc that I'd stopped as my consultant refuses to treat persistent smokers. I had tried so many times to stop and spent a fortune on hypnosis, acupuncture and anti smoking aids I even stopped once for 2 yrs and stupidly started again. Even now I could easily have a cigarette. It is very hard to stop for some people others manage fine, it's these people who don't have patience with people who are struggling. I truly sympathise with you and hope you can manage to stop soon, my husband smoked till November then started using an electronic cigarette, hes doing great with it. I'm now on oxygen 24/7 And can do very little without being breathless, I need a wheelchair to get around outside which I hate so I very rarely go out. I know carrying on smoking made my copd deteriorate more quickly so I only have myself to blame for being where I am now. Take care and stay strong.
    • hypercat
      hypercat julia14760

      Posted

      Oh Julia I do feel for you and I am so sorry you have ended up on oxygen. That is my big fear which is why I always put so much pressure on myself to stop.   I am glad you managed it in the end though as hopefully it will stop you getting worse as quickly and prolong your life.  

      I have had ex smokers telling me 'Give it up it's easy'  My answer is 'Good for you I am glad it was easy for you but we are all different'.   Actually the last person who said that to me nearly got their head ripped off lol

      I am going to get an e-cig as this does seem to have the highest success rate and some of my friends have stopped using these.  

      Please try not to feel guilty though Julia - we are only human.  You have a lot of living to do yet so please go out in your wheelchair.  Try seeing it as an aid to help you live your life rather than an emcumberance.   Could you get a scooter instead?   That might make life easier.  Take care and thanks for your reply.  

      Bev x

    • julia14760
      julia14760 hypercat

      Posted

      Hi again Bev, I do have a scooter I leave it at our caravan and use it while their although like the wheelchair not often. I'm almost 66 but still feel much younger in mind being in the wheelchair or on the scooter makes me feel really old lol. I've promised myself I'll go out more once the caravan season starts again I love being there with the grandchildren so I'm going to get out more. When you're stressed as you are now you will never stop smoking so try to ease up on yourself a bit. I know the more people went on at me to stop it just got my back up and made me angry because I knew I shouldn't be smoking but I found it really hard. You will do it eventually, give the elec cigs a go. My son has one, he manages to stay of the cigs at home but when he's away working he finds much harder but he'll get there too I'm sure. Good luck. Julia xx
    • hypercat
      hypercat julia14760

      Posted

      Thanks Julie that is exactly what I am talking about.  You are offering proper support I can really relate to and this will help me far more than shouting and yelling at me.   You are building me up instead of pulling me further down. 

      Don't let your illness beat you Julia or define you.  You sound like a lovely genuine person with a lot to live for.   If I ever need a scooter then I want a pink one with a silver stripe and will put a sign on - 'watch out - loony about' lol.   Personalise yours - remember you are still first and foremost a good person who is coping very well with disability.   You are still you and not a wheelchair.   Smile and be proud of yourself.   

      Love and hugs  Bev xx

    • julia14760
      julia14760 hypercat

      Posted

      I can just picture you riding down the street with your shocking pink scooter lol. Mine is boring red haha. Once we start going to the caravan again next month I'm determined to go out more. Thank you for your lovely comments,stay strong. Xxxx
  • ohara
    ohara hypercat

    Posted

    The only thing you can do apart form 'you know what '  is exercise  and generally doing all the things that help prevent you further damaging your lungs..... having the flu jab/taking supplements/ keeping away from people with colds/

    It doesn't sound as if constant chest infections are you problem,  these constant excerbations seriously damage the lungs and reduce lung function, so you are lucky that is not your problem

    Once you get onto having to have oxygen, then you will HAVE to stop smoking as they wont give you oxygen unless you do as its highly inflammable and so not given to smokers generally.

    91% sats is low...you are well on your way to needing oxygen.

    Try to go for a walk every day, and do some exercise at home as well.

    • hypercat
      hypercat ohara

      Posted

      Omg ohara you are scaring the s... out of me now.   Thank you this is what I need and what I asked for.  I have nightmares about needing oxygen....

      I do take my sisters dog out every day so do get some exercise.   I do suffer with depression too so find it very hard to get motivated but I try

      my best.  

      Thank you very much   bev x 

  • ohara
    ohara hypercat

    Posted

    Have you bought an oximeter?  they are reasonably cheap on ebay  about £20...they give you your stats reading very quickly ....if your reading goes below 90  you should contact your doctors...if it goes any lower you need to phone an ambulance....80+  stats you need oxygen ...otherwise you damage organs in your body that need the oxygen

    Its nothing to do with SOB    just you needing oxygen to survive...

    If you walk with the dog each day OK you sound like you should be OK for now

    Yes Bev its getting serious for you.......I have had bronchectasis since  a baby... both bottom lobes removed at age 15.....I am very old now, but my sats are MUCH better than yours.......

    You however are doing this to yourself....you are slowly killing yourself and leading  yourself to a life on oxygen......even if you stop smoking now, I think you will still be at that place one day...but you will have LONGER  in a normal way of life...the choice Bev is yours....I am not trying to scare you, just stating facts

    • hypercat
      hypercat ohara

      Posted

      Thanks ohara I appreciate your comments as they are a healthy dose of reality.   I have an oxymeter and compared it with the nurses one and it is accurate.  Just taken my sats and they are 91 sad  

      The thing is I am 61 now and know if I stop smoking and look after myself better I will probably not end up severe or at least not for many years by which time I will probably have pegged it from something else. 

      You have given me a lot to think about - thanks again.  

      Bev x

    • julia14760
      julia14760 hypercat

      Posted

      Hi Bev, 91% isn't too good. Maybe you need an oxygen assessment. Did you take your sats after you been busy or were you relaxing? What was your pulse rate? My pulse rate is always high usually 100 + my sats usually about 97 on 2 ltr oxygen, a few months ago my sats never went past 92 and just walking to the bathroom they'd drop to 88. I'm not doing anything different but I don't get so many infections now, where I would have at least 1 course of antibiotics and steroids every month. Please don't let yourself get to my stage too soon, give yourself a few more years before your condition worsens. Good luck xx
  • ohara
    ohara hypercat

    Posted

    I have just re-read my last post. I realise I was very harsh   I hope you can look at my post as 'tough love'

    i so want you to be happy Bev & live as long as you can. When I see someone struggling to breathe & then lighting up a cigarette it breaks my heart. I know you know all too well you should stop. I don't doubt you have tried to a hundred times. I know you don't need anyone to tell you anything on the subject. You already KNOW but perhaps your depression is preventing you from making the difficult decision. 

    Nicotine is a drug. It finds ways to 'brainwash ' you into getting more nicotine. One of my sons was an alcoholic & drug addict & smoker. He is now tee total. Off drugs & non smoker. But he said by far the hardest thing to give up was smoking. A little demon inside your head keeps telling you reasons why you should smoke. Just so as he gets his next 'fix' of nicotine 

    it's really hard. It can be done though. The question you need to answer Bev is. ' will all the pain be worth it'

    only you can answer that question

    'BIG HUG' to you Bev. From Ohara

    • jude65855
      jude65855 ohara

      Posted

      As someone who was always giving up or about to give up for most of the more than 40 years I smoked, I totally identify with your son's comment about the "demon" of addiction.   When I gave up for the last time (too late to prevent COPD being subsequently diagnosed) one of the tricks I used was to argue with the addiciton ... eg, when that little voice in my head told me I'd never cope without fags, or just one drag on someone else's smoke wouldn't hurt, I would tell it to f.... off and even put my fingers in my ears and say "Blah blah blah" so I couldn't hear that sneaky little voice.

      The other thing which helped in a really sad way was learnng that  in some disadvantaged countries where tobacco is grown, child slave labour is used - as young as 4 & 5 years old  - and if the kids don't meet their quotas they are sexually abused as punishment.  Once I knew about that I could no longer support such a disgusting industry.

      I hope these 2 pieces of info help someone else - 2 people close to me have stopped smoking after observing my symptoms and being given the above info.

    • hypercat
      hypercat ohara

      Posted

      Yes Ohara any pain will be worth it to get off the fags.   There will be a lot more pain if I don't - and I don't do that level of pain.   

      Thanks very much for being so supportive love,  I appreciate it.

      Bev x

  • gpgp
    gpgp hypercat

    Posted

    Dear Hypercat, there seems to be a lot of scaremongering, all done with the best of intentions but in your current situation and with your first question not very helpful. As far as I can tell you are nowhere near needing oxygen. Sats done once can be very misleading and not necessarily accurate.

    As your FEV1 was said to be 78% of normal(predicted) for your height and age then you are only just in to the moderate stage. Until a couple of years ago in the UK 80% or more was thought to be normal, but classification has now fallen in line with the international GOLD criteria. If you put GOLD and COPD into the Internet you will get to their authoritative web site.

    I have listed the summary of classification below to help you see where you're at.

    what is missing still is the ratio of FEV1/FVC which is fundamental to diagnosis and understanding the classification. It is really easy to calculate and there are online calculators if you have doubts. It is simple maths - FEV1 in litres divided by the FVC in litres. The spirometry read out gives the two figures so you can ask the nurse and I will help you. 

    People only start to get a bit breathless once the predicted value of the FEV1 goes below 80%, and according to your nurse you are only just in that category. My point is that if that last reading was accurate, another reason for your breathlessness needs to be looked for. 

    You and many others are addicted. However doctors have to treat you without discrimation, in the same way as they HAVE to treat diabetes in people who are addicted to food, or injured runners who are addicted to running. 

    Stage 0: at risk; chronic cough and sputum production. Spirometry is normal.

    Stage I: mild COPD; mild airflow limitation (FEV1/FVC) less than 70% but FEV1 80% or more than predicted; usually, but not always, chronic cough and sputum production.

    Stage II: moderate COPD; worsening airflow limitation (FEV1 50-79% predicted) and usually progression of symptoms, with shortness of breath, especially on exertion.

    Stage III: severe COPD; further worsening of airflow limitation (FEV1 30-50% predicted), increased shortness of breath, and repeated exacerbations.

    Stage IV: very severe COPD; severe airflow limitation (FEV1 less than 30% predicted) or the presence of chronic respiratory failure.

    • hypercat
      hypercat gpgp

      Posted

      Thanks gpgp I do know the stages but they are still a good reminder.  I am not sure I trust the figures the nurse gave me as it seems impossible to increase from 66% to 78% lung function in 14 months especially when nothing has changed in my life to account for it.   

      I have been thinking to going to the doctor to double check the figures and ask whether they think anything else could be wrong as well as copd.   It's difficult to separate everything out though isn't it?   

      I do know that if stats regularly drop below 90 then there could be a problem as 84% is I believe the cut off point for needing oxygen to support the organs.  My sats are 92 now which is marginally better.

      Many thanks for your reply and advice.

      Bev x

    • gpgp
      gpgp hypercat

      Posted

      Yes, the increase in FEV1 does seem a bit odd. No test is 100% accurate. Do not be afraid to make that appointment with the Doc. There is a campaign in the UK at the moment called ' let's be clear about breathlessness'  so GPs are more aware than ever to take it seriously. 

      Tell the GP your Spiro has improved but you feel worse. Ask the question -could it be something else apart from the mild/mod COPD? Say you haven't had a chest X-ray for ......however many years it is. Tell them you have read about a blood test for heart failure, could it be that?

      Most professionals don't like being told what to do but you can push and prompt in the right direction.  

      Do you use any inhalers? If not they can help with symptoms.

      keep asking questions until you get satisfactory answers. good luck

       

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