33 with lung age 58 COPD

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Hello I am 33 years old and 6 moths ago I was diagnosed with COPD Chronic Bronchitis and Asthma after sudden constant breathlessness, even just going up stairs or putting the hoover round makes me breathless.

 I have been put on Sprivia and Fostair which keeps it at bay but the Sprivia seems to not be working as well lately.

My specilalist was not very good so have asked for a second opinion. My chest xray showed over inflation of my lungs and a CT scan revealed scarring of the bronchial tubes. 

  I am going to attamept to attach my spirometry results so if anyone could offer any advice that would be great. Thanks.

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  • Posted

    I'm so sorry yoou have this at such a young age, it must have been a shock to you.

    I don't know how to read spirometry test results, I rely on the Practice Nurse to tell me, which so far as been good news:  I was disagnosed a few years ago with 30% lung function loss and it hasn't decreased since.

    I've been on Spiriva since diagnosis and haven't had any problems with it, also Symbicort - I assume Fostair is also a cortisone?   I've had dramatic improvement with the Symbicort, except when I did two puffs twice a day and got horrific leg cramps, so I cut it back to 1 puff twice a day and only occasionally get mild cramps which are bearable.   

    It's great you're getting a second opinion - I wish you all the best and suggest strongly that if you can get yourself to a Pulmonary Rehab Group you should find it invaluable - I did, anyway.  Of course "rehab" is a bit of a misnomer as we can't actually rehabilitate from COPD, but I learnt heaps about how to breathe more constructively, conserve energy, lifestyle changes and exercises, which I do most days.   I'm sure what I learnt in rehab is the reason my condition hasn't deteriorated, although I realise it eventually will.

    I have had pneumonia twice, hospitalised once but the recent one was able to stay out of hospital with the help of my GP and a 2 week course of antibiotics.

    Take care of yourself!

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  • Posted

    Thank you for replying jude.

     I have been told that I have mild copd, however as I stated before my breathlesness is very bad when not on medication. My symptoms started with the breathlesness and not coughing, even now I ont cough very often wich is a side affect of the bronchitis so im not sure if it it actually chronic bronchitis causing the breathlesness. What are your symptoms? If you dont mind me asking.

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    • Posted

      That's ok, you can ask just about anything on this site!   My initial symptoms were chest pains and as I'd had a heart attack not long before it was sort of put off for a while as angina, until I told my gp that they were different, in that the chest pains I'd had before the heart attack were never on exertion, always when I was asleep or resting, whereas these new different pains came when I was doing something physical and went away if I stopped and rested.  

      I wasn't very breathless at that stage, but I am now if I overdo it:  one of the most, if not THE most important things I learned in rehab is that you just can't "soldier on" with COPD & learned how to guage when to stop, because going on just makes the recovery time longer and there's no point in exhausting oneself.

      So, chest pain and then breathlessness - I told the GP I was sure it was my lungs:  even though I'd stopped smoking about 6 months before the heart attack I'd smoked for more than 40 years before that, but was hardly ever sick with colds or flu so fooled myself it wasn't affecting me - oh the excuses addicts can make and the lies we tell ourselves!

      She sent me for a spirometry test which went to a pulmonary specialist and he diagnosed COPD & prescribed Spiriva, which was a great help  - UK people mostly seem to have x-rays as well, but I didn't have one until I called an ambulance a couple of years ago with quite severe chest pain which I thought was another heart attack, but turned out to be "walking pneumonia"  ie I didn't collapse and didn't even have a termperature or any cold/flu symptoms, just felt really tired for a few days.  Ended up in hospital on intravenous penicillin - yuk to both and double yuk to the dreadful food, dirty floors and inoperative showers.

      I had pneumonia again recently but with a different GP was able to stay out of hospital BUT the time seems to come to all of us with COPD that we go in and out more frequently as the condition progresses over the years.

      I can be a slow condition if we look after ourselves and with the right medication AND my personal hobby horse, attending rehab groups.

      Good luck, take care of yourself, won't you?  

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    • Posted

      Is your condition chronic bronchitis or emphysema? I know most copd sufferers have a bit of both. I quit smoking 6 months before I was diagnosed and at that point had no symptoms at all, I have has physical jobs all of my life and before I was diagnosed I worked as a tree surgeon and Fencer for 7 years, they suspect it could be a combination of the saw dust and concrete dust mixed with smoking that caused my condition.

       I now work in a factory and walk around most of the day so it is still a physical job, 12 hour shifts walking for most of that keeps me fit but I have recently been having joint pain in my knees, hips and ankles and chest pain so im not sure if this could be related to my condition also.

      I am trying to do what I can to stay healthy but every day there are risks such as pollution, people smokng around you, ill people at work, unavoidable dangers to us copd sufferers.

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    • Posted

      I only have emphysema and I've never heard that most COPD sufferers have "a bit of both".   COPD is a group of conditions and while some people may have two (or even more I suppose) of the conditions - eg chronic asthma becoming emphysema later in life - I don't think that's the majority.

      I had no symptoms when I stopped smoking about 18 months before diagnosis, but then nicotine is a cough suppressant believe it or not - that's why lots of people go back to it because they say they always "get sick" when they stop - they're not getting sick, it's the lungs now being able to get rid of old muck that's been stuck down there, causing such conditons as emphysema.   I know this sounds ridiculous, but research it - doctors in the 30's and earlier used to RECOMMEND smoking to TB patients because it stopped them coughing and then bleeding from the lungs.

      In your case the suggested combination of causes sounds spot on to me.   I think you should get the chest & joint pain checked out - could be from COPD or maybe not, could be something entirely separate ... esp chest pain, don't muck around with that.

      It sounds like you're doing well if you can still do12 hour shifts on your feet - I'm assuming the factory is pollutant free?    And yeah there are risks every day:  I asked my gp if being around smokers a couple of times a week (I love outdoors live music) is shortening my life or just exacerbating my symptoms for a couple of days:  he looked at me quizzically and said:  "Jude, you've already shortened your life!"  - and he's right, after more than 40 years of smoking I did the vast majority of the damage myself, which doesn't mean I'm letting the tobacco companies off the hook.

       

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    • Posted

      I can manage while on the inhalers unless I'm ill and then the medication had little to no affect.

      I got ill just after Christmas and haven't been the same since.

      It is hard to come to terms with and i worry about when i get worse as it will over time i just don't know how bad i Will get or how quickly I will get there.

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    • Posted

      It's tough, isn't it?  I worked out after a while to let myself be inspired by a friend (now passed away) who told me she dealt with her juvenile onset arthritis and declining health and mobility over the years by focussing on what she COULD do and not on what she couldn't do.

      We really have no choice about it do we?  Frustration, anger and grief are totally natural when first diagnosed, but allowing ourselves to stay stuck in those feelings is totally pointless, then we're just miserable and depressed as well as ill!

      Most days I manage to keep in mind the 12 step prayer:  as I'm not into praying I use it as an affirmation: 

      I HAVE THE SERENITY TO ACCEPT THE THINGS I CAN'T CHANGE, THE COURAGE TO CHANGE THE THINGS I CAN AND THE WISDOM TO KNOW THE DIFFERENCE

      Works for me - try it and see!   Sorry to say it, but you will never be the same again as you used to be and neither will any of us, that can't be changed but we can change what we do about it - eg rehab, exercise, in my case meditation.   I've just joined a local council centre which has a seniors discount and I'm going to do water aerobics and tai chi, also I hope to be able to afford swimming lessons so I can do laps - all good for my lungs.  

      We can slow down the deterioration and learn to manage it - I hope you can get to that stage soon!   Take care of yourself and let others take care of you and help out when you need it:  asking for help is VERY hard for me and I have a history of asking the wrong people or in the wrong way, no point in that either.

      I learned many years ago that there is ALWAYS suport around in any circumstance, it's just not always where we want/assume/expect it to be and is often from unexpected sources, BUT IT'S ALWAYS THERE!

      All the best, stay on this forum, it's wonderful

       

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    • Posted

      Hi I disagree with you as I was told most copders have a primary illness but with a mix of the other as well.   Chronic bronchitis is damage to the upper airways and emphysema is damage to the bottom of the lung (the aveloli).  Most people with copd have both.   I know I do.   x

       

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    • Posted

      Hi I have had asthma for around 25 years and I was diagnosed with copd around 6 years ago.   I was mild am still am.   I gather you are not in the UK?   I have never seen a specialist and when I asked was told very firmly I only needed to see one when the surgery could no longer manage my care.

      I was refused an x-ray for diagnosis and was diagnosed purely on spirometry tests.   I did manage to get an x-ray around 4 years ago but only because I insisted.   I haven't even been offered a cat scan.

      Despite me asking whether I have primarily emphysema or chronic bronchitis I am told very firmly that it doesn't matter as it all comes under copd and the treatments are the same.   The illnesses are slightly different though as one is damage to the airways and the other is damage to the bottom of the lung.   In the later stages of the illness the differences become more crucial.  

      One thing I will say to you is that you are very young to be diagnosed with copd as most are over around 45.   You need to ask your doctor for an alpha 1 deficiency test in case you have the gene.  It is rare though but is a cause of copd in younger people,  so it should be checked out.   I believe this can be done free online if your doctor refuses so google it. 

      The other thing is anyone who has smoked or been around passive smoking can still develop copd in later years even if they have been stopped for many years.  Look at Leonard Nimoy (Mr Spock)  he had stopped smoking 30 years ago and still got it and he died at end stage so he must have had it for quite a while.   x

       

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    • Posted

      Hi hypercat. I do live in the UK, I came down with sudden breathlessness to a point at which putting my shoes on was making me breathless and weaze, my doctor did what she could and decided to send me to hospital as she couldnt figure out what was happening. I have had lots of tests done but I had to fight tooth and nail for them.

       They initially told me it was asthma and tested me for every allergy that they could but they all came back negative so I went to see a specialist who told me that my breathlessness was definitely not asthma and so sent me for a lungfunction test, it was at this stage that he said I had some form of COPD and asthma. After this I demanded A CT scan as they couldnt rule out Pulmonary Fibrosis without the scan, the scan came back confirming that my bronchila tubes has significant scarring which may be causing the breathlessness. The Alpha 1 test came back negative and my chest exrays show my lungs are over inflated.

       They have told me that I have mild copd but my symptoms are in my mind quite bad, without the spiriva and fostair just walking up the stairs gets me out of breath and very weazy.

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    • Posted

      I'm not sure what you"re disagreeing with Hypercat?    All these conditions are covered by the umbrella term COPD.

      Emphysema IS  a primary illness, mainly caused by smoking but in fewer cases by chronic asthma or bronchitis,  so yeah many people have more than one condition.

      I have emphysema, that's all, and that's enough!  From smoking .... I don't have chronic bronchitis and I've never had asthma either.  

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    • Posted

      If your condition were more than mild you wouldn't be ABLE to walk up stairs at all and why would you be doing that without taking your medication anyway?  Sorry, not having a go at you, just a little confused ....
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    • Posted

      I  too was diagnosed solely on spirometry, never had an x-ray except in A&E to diagnose pneumonia when I called an ambulance fo severe chest pain & tightness, thinking it was another heart attack.  My present gp diagnoses it in the oldfashioned way by listening with a stethoscope, which keeps me out of unhealthy boring disgusting food hospitals.

      i've been amazed at how many people on here have x rays to diagnose COPD because everyone I know only had spirometry.  

      Why do you want a CAT scan?  

       

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    • Posted

      I had to walk up the stairs because at that time I didnt have any medication, they were still busy telling me I had asthma and the ventolin did nothing. 
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    • Posted

      I also know nothing about the stages or how bad they are, im currently 79% fev1 so aparantly stage 2 however the copd nurse said i have mild copd which is stage 1 so i am confused as to what stage i am actually at. I know the sypmtoms vary but I have no idea where I go form here as I have never talk to people who have this condition.
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    • Posted

      Thanks for explanation ... first thing which was checked with me in the spirometry test was whether it gave different results with ventolin and in my case it makes no difference so I don't have it.

      I don't understand all the lazy diagnoses which people are experiencing from the posts on here:  it's not rocket science, if a spirometry test shows decreased lung function and lung cancer can be ruled out, you have COPD.  I don't see that it matters whether it's from smoking (except for the guilt of ex-smokers like me!) or ashtma or whatever that's caused it except for the ventolin issue, nor what stage you're in.

      I'd be focussing on getting yrself to rehab to slow down the deterioration and alleviate symptoms ... does it matter what stage anyone says you're in?

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    • Posted

      I am disagreeing with the statement you made previously

      'I only have emphysema and I've never heard that most COPD sufferers have "a bit of both".   COPD is a group of conditions and while some people may have two (or even more I suppose) of the conditions - eg chronic asthma becoming emphysema later in life - I don't think that's the majority'.

      It is all copd of course but most copders have primarily emphysema or chronic bronchitis but with some of the damage caused by the other.   Very few of us are completely one or the other.   CB causes damage to the upper parts of the lung whilst E causes damage to the bottom.  They are both lumped under copd because while the diseases are slightly different the treatment is the same.  

       

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    • Posted

      Oh forget to add that it can be very hard for a doctor to distinguish between asthma and copd in the early stages - some symptoms are typically asthma and some copd.  I have both.   The difference between them is that asthma is reversible with the right meds whilst copd isn't.   In the early stages it can be difficult to separate them and give a correct diagnosis as spirometry isn't clear enough to always know the difference. 

       

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    • Posted

      Oh does all this really matter?  Semantics semantics semantics, we're saying pretty much the same thing in different ways, I'm not going to continue this nitpicking, I have better things to do
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    • Posted

      No, it's easy, all the practice nurse did with me was do a test without ventolin and then one with it:  the one with it made no difference therefore I don't have asthma because that does respond to ventolin, as we  all know. 

      And I was in the early stages then

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    • Posted

      I don't believe I did and I also trust that people on this form are adults and can check out what other posters say.  Of course I could be wrong, I'm not perfect but then neither are you
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    • Posted

      It's a good job I am then... Im just happy to have some input from people with my condition. No more arguing now guys.

      Thank you both.

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    • Posted

      No more arguing!  Too late at night here anyway:  I fell asleep in the old armchair in front of the wood heater waiting for one of my favourite programs to come at 7 pm and slept for 1 1/2 hours until the dog reminded me it was well past her dinner time!   I often fall asleep in that chair and it's the one I sleep in if I'm woken up by coughing in the night and I've had a busy day, so that's all ok.

      It's nearly 11 pm here now and I'm wide awake!

      This emphysema totally stuffs up my sleep patterns  - do others find this too?  Fortunately I'm on a pension and only work part-time casually from home on a call centre and can log on & off whenever I like, so I've made some $ since I woke up.

      Look after yourselves, everybody and lets all keep our brains turned on and our questions clear for the medical people so we don't get bamboozled

       

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    • Posted

      I'm sorry to hear your condition is affecting your sleep. I haven't been sleeping well for the last couple of weeks, getting to sleep is the hardest bit most nights it's 2 am before i drop off and sometimes waking up gasping for breath but that isn't often, i think maybe it's down to stress.

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    • Posted

      I very rarely have trouble getting to sleep, it's the waking up choking and/or coughing that was getting to me, but is much less often now, in fact I've slept right through the last few nights.   When I can't do that I now just accept it, either sleep in the armchair or start the day early.

      If you reckon it's stress keeping you awake that's a different matter:  how are you handling that because that's a really hard sleep pattern to change once it becomes a regular occurrence

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