How quickly can this progress?

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I was diagnosed a just over a month ago with emphysema by a cat scan. I am only 44 and a nonsmoker. I have never smoked other than the occasional cigarette out with friends but my mum smoked when I was a kid. I have been tested for alpha1 and my levels are normal and have mm gene (normal). No one is able to explain how I possibly have emphysema. I have seen 2 pulmonologists and have no answers. I am scared as I do not know how quickly this will progress. My FEV1 has stayed around 77-80% but my TLCO (gas exchange) dropped 10% in the last year to 67%. I know these numbers are not bad at the moment but if my TLCO continues to drop at this rate it won't be good. My doctor said they the TLCO is equally as important as the FEV1 and the drop was a concern to him. My RV and TLC are steadily increasing which is not good either. Just scared as I have 3 young children whom mean the world to me. I am feeling terribly depressed and isolated. None of this makes any sense to me. Can anyone give any insight on the drop in TLCO? How quickly could this progress? . I going to see an alpha 1 specialist who will test for rare gene defects in January. I am hoping they will be able to provide some explanation of this. If you have any insight please let me know. Thanks for any input.

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  • Posted

    Hi I emphasise with you as being diagnosed with any lung disease is very scary especially at your relatively young age.   My FEV1 is around the mid 70's but don't have a clue what the rest of your figures mean as mine have never been measured.  I have asked for referral to a consultant several times but have been refused. 

    I understand the most important thing is how you feel not what your figures say and that the FEV1 is the most important figure.    Do you still feel ok and fit enough to do what you have to and want to do?  If so then I wouldn't worry too much about it.   At your level you wouldn't usually progress quickly and it will probably be many years before you start having real difficulty,  if at all.   When I was diagnosed with copd at age 56 my doctor said not to worry as something else would probably get me first ie old age.  

    Only about 1 in 4 people end up with copd and you are very unlucky to have got it especially as you have never smoked.  You must be ususually sensitive to pollutants as you are isuffering due to second hand smoke.  

    As long as you lead a healthy lifestyle you might not progress much it at all for a long time.   No one can predict the progress exactly as we all vary,   x

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    • Posted

      What does "probably many years before experiencing real difficulty"? Define "real difficulty"?

      LT

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    • Posted

      No one can predict the future coz we are all different,  a few unlucky people will progress quickly while most with your lung function won't.  So far I am not progressing at all as my fev1 is still the same as when I was diagnosed 5 years ago.   If you are one of the vast majority I wouldn't expect your illness to impact on your life very much for many years.  

      For me real difficulty would be unable to walk more than several hundred yards on the straight  without getting out of breath.   Or being on oxygen at least at night.   I just carry on as normal with my life but a bit slower that's all.   It's when  I couldn't carry on as normal that I would define as 'real difficulty'.  

      You might have to make some minor adaptions to your life but that's par for the course,  but I wouldn't expect someone with your lung function to have to make any more than minor adjustments.   It;s if you have to make more major adjustments then life would be more difficult.

      The most important thing to recognise is that while it is a chronic condition it is also manageable with a bit of care,  like most chronic conditions are.   The most important thing is not to let it take over your life and to keep a sense of perspective and sense of humour.  Over anxiety about it will not help.  I hope this helps.  x

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    • Posted

      Thanks for your response.  I would not be quite as concerned if my gas exchange numbers were not dropping so quickly (10% in the last year).  Most people are well informed about FEV1 but apparently the TLCO is equally important as it shows how well the oxygen is being absorbed from your lungs.  So needless to say, although I am not hindered by breathlessness yet, I am concerned about where this is leading.  For a year my doctors (I saw three - one GP and two respiratory) told me this would not be COPD even though my spirometry tests were saying it was.  They said my numbers may have just been below normal due to damage in early years but they were all wrong so I have lost a bit of faith.  I know if you do not smoke your numbers should not decline this quickly so I am just terribly confused about why mine are.  Thank you for sharing and I just hope that  it does not progress further.
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  • Posted

    Hi Cookie25.

    I feel very sympathetic to your situation.  It is very difficult.  I guess you are in US? The time of the posting and the terminology you use indicates that.  I cannot help a lot as I am not a doctor, only a patient and I am concerned in case I worry you more. But it seems you are worried anyway. Exactly what was the diagnosis of emphysema based on?  What did your pulmonologist (we call them respiratory consultants in the UK) see on the scan that led to that conclusion? It seems highly unlikely that your smoking history and the exposure to your mother's smoking can be significant. COPD, (which is an umbrella term for the group of conditions containing emphysema,) as far as I know, always has a cause. It doesn't just pop up. As you know Alpha1-anti-tripsin-deficicncy seems to be the only other cause. And that has been ruled out. In my exderience, and others may disagree with me, the worst about these puzzling medical matters is not knowing what a disease is. Even if it is a nasty one I believe we are generally better off knowing. We know what we are dealing with, we can access the help and support of doctor and nurses with the expertise.  It does sound as though your pulmonologist is doing her/his best to get to the bottom of it. One of my bugbears is that I believe doctors are too quick to diagnose COPD because it is common.  So push for the answers. There are other conditions that fit the profile that your tests show. 

    Sorry I can't offer bland reassurances.  My condiiton is somewhat similar to yours, and it is proving hard to diagnose. 

    I do hope you get seme help.

    K xx

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    • Posted

      Hi Katinka.  Thanks for your response.  You mentioned that your condition is similar to mine and hard to diagnose.  I am wondering if you could share more on that with me.  It seems everyone with COPD has a straight forward case - either an long term smoker of someone with alpha 1 deficiency.  I seem to be neither which just does not make any sense to me.  As you said not knowing is making this whole thing harder.  I am not willing to take this lying down.  I feel like I need some answers on this.  I am hoping the specialist of rare genetic types of alpha 1 might shed some light on things.  

      To answer your question about the diagnosis - the emphsema was seen on a cat scan so unfortunately there is no questioning that one.  I would not have even investigated anything as I am not hindered by breathlessness and work out on a regular basis but I have a cough eacha and every morning which I knew was not normal

      So - you are half correct on the American frontsmile  I am American but have lived in the UK for 10 years so I still use my American terms on many fronts.  In America there seems to be much more support on the alpha1 front.  For example, if I were there I could be be able to request a kit for a blood sample, mail it off and they would test for rare types of Alpha 1 by mail for free.  Amazing.  It is all part of awareness and research done by Alpha1 Foundation.

      Anyway, thank you for your imput.  It is nice to hear someone else understand that not knowing and not having answers makes it really hard.  If you have a minute, I'd be curious to hear about your condition.  xx

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    • Posted

      Mornng Cookie25

      Thanks for your response. Mine is quite a long story, but you did ask. Six years ago I had multiple, bilateral pulmonary emboli after a hip replacement operation. I also have a history of asthma since I was a child which muddies things considerably. (Doctors assume that my symptoms are down to poorly managed asthma.) I never recovered from the PEs: remained very breathless, but I knew it was not asthma. Because I did not recover and the condition was in fact worsening I knew after about nine months that I had chronic thromboembolic disease (CTED). It took doctors another four years to catch up with my diagnosis, which was finally acknowledged in August 2014. It then became increasingly clear that my symptoms could not be accounted for by CTED alone, which in my case was mild and was not causing pulmonary hypertension, and that there was also, and more significantly, an obstructive lung disease that was not asthma. This seems to have come on suddenly after the PEs, (COPD and emphysema do not come on suddenly, they take decades to develop), and may have been linked to the bleeding and congestion that I experienced with the PEs. (I went on coughing blood for six weeks after the PEs.)  I believe I have a condition called obliterative bronchiolitis.  This comes about as a result of injury to the lower respiratory tract, (the small airways), the body goes into repair mode to heal the damage and then forgets to stop, so that scarring continues.  It is difficult to diagnose, can't be seen directly on CT scan, and often the pulmonary function and spirometry numbers can be near normal. It is usually diagnosed from the history, symptoms, evidence of air-trapping seen on high resolution CT scan.  It has none of the usual symptoms of an obstructive lung disease, there is no inflammation and is resistant to bronchodilators and oral and inhaled cortocosteroids. So I tick all the boxes and I am just waiting for my consultant to do the same or tell me what his evidence is that counters it. 

      It has been six years of ongoing nightmare, with doctors telling me that it is dysfunctional breathing, that I am anxious, depressed, "it's all in your subconscious," "you need cognitive behavioural therapy."  Which constitutes another whole story....

      And, of course, it should never have happened: I did not have adequate medication to prevent the PEs in the first place, I told the surgeon that there was a history of thrombosis in my family, but he ignored me.

      And that is another whole story as well...

      However, I am a tough old bird and am incredibly lucky with my friends, and family.  I could not have managed without their support.

      All the best and do tell me how things develop.

      K xxx

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    • Posted

      P.S. The reason I asked about the details of your diagnosis of emphysema on CT scan is that I was curious to know exactly what the CT images actually show. Is it evidence of very specific, unambiguous, emphysematous 'holes' in the lung or does it show air-trapping? The word 'emphysema' was written on one of my tests results, but I do not have emphysema. Even Alpha1 develops slowly.  If you have air-trapping on CT then there could be other causes than emphysema.

      K x

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    • Posted

      Hello again!  Wow!  It sounds like you have had a  tough time of things for the last 6 years with one health issue after the next.  Cannot imagine th frustration you feel when you knew (and advised!) that the PE's could have been prevented.  I am glad to hear that you have supportive friends and family to get you through it all.  I am going for a second opinion on things after the holidays.  My CT result was very vague without much written at all other tha emphysema lower lobes - possible alpha1?  It mentioned nothing about air trapping or enlarged lungs.  I am going for a second opinion on things and have a copy of the scan to take.  I am lucky in that we have private health insurance so I can go outside of NHS for things.  Americans are known for getting second and third opinions with things so I will follow the trends.  I will be certain to ask about the things you have mentioned. I recall my doctor mentioning obliterative bronchiolitis when discussing possible causes (before I had the CT) but it was discounted.  I will ask about it again.  I thank you so much for your input.  Apologies for the short responses but 3 kids are  home for the holidayssmile 
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  • Posted

    Smoking and genetics are not the only causes of COPD. Heavy or repeated exposure to pollution can also cause it...sometimes this can be work related environments for example...smoke, chemicals, off gassing etc.

    Also,  a child who might have many respiratory infections etc may lead to COPD eventually.

    Second hand smoke can also cause damage over the years.

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  • Posted

    I think we're all shocked when we're first diagnosed and although the cause is usually or own smoking habits, it can certainly be caused by other people's smoking.

    The important thing to accept and build on is the knowledge that unlike many medical conditions (eg lung cancer) the rate of progression can be slowed down considerably if we can learn to manage the condition.  My strong recommendation is that you switch your focus from the possible causes, which is something you have no control over, to getting yourself to pulmonary rehab ASAP,  because that IS something you have control over.

    No one can tell you how fast your COPD will progress because there are far too many variables:  all you can do is manage it as best you can.

    I know other forum members will have read this story of mine many times before, but you're new so I'll repeat it again for you:  when I was shocked and depressed and scared after diagnosis, my then gp told me to stop panicking, that she'd just been to the funeral of patient in her 80's who'd had COPD for decades.

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  • Posted

    First of all Don't loose heart. May God keeps you healthy...............

    I think this is transferred by the geans of your mother. Concern with other specialist might he helps you out. 

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  • Posted

    Wow. I diagnosd about three years ago after an x-ray for a chest infection that wouldnt go away.

    I moved house 18 months after that. My new GP took one look at me and said I did't have COPD and took me off the salbutamol which had been prescribed.

    The last few months I've had some problems at home and found that even the walk to school (1.5 miles each way) was too much for me.

    I don't smoke but I did for about 20 years. I panic every day that I have lung cancer. My husband tells me that I wouldnt be here now if I did have it as I've coughed for years now.

    Do you find that you cough more when you are panicking? Do you take your inhaler too much? This can make the panic worse.

    Hope you are okay x

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    • Posted

      Hi, I do not have an inahler yet.  My doctors main concern was the drop in TLCO (same as DLCO).  My symptoms are not bad yet. I am just concerned where thie is going...
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  • Posted

    Hi Cookie, its good you are going to have further checks regarding the alpha1, it will be good to get that ruled out for sure, so I will be keeping my fingers crossed for you do not have alpha 1, do keep in touch with us how you go.

    As for emphysema, this can stabilise if you look after your lungs as best you can, ask your doctor if you can be referred to a pulmonary rehabilitation course so you can best learn how to manage the illness and symptoms, precautions you should take etc.  The most important thing for now as we are in winter is wherevern you can try to avoid contact with people who have colds and flu, always wash hands when you come in from shopping and teach your children to wash their hands when they come in from shopping, school as well.  If you get a cold act quickly to avoid it going to your chest.  First signs of a cold, scratchy throat I gargle with listerine total 3 x daily.  If the cold goes to your chest try to get to see your GP quickly to get your lungs checked and if needed anti biotics and prednisolone will be prescribed.

    The DLCO, I know it as (UK) is the main thing that affects my situation, but my DLCO is quite a bit lower than yours. but I've only had the DLCO recorded on my initial diagnosis, I think the DLCO can vary as can the FEV from one test to another, so try not to worry about that, just ask for it to be checked again in 6 months or so, ask the alpha1 people if they also check the DLCO, 

    The progression of the illness varies from person to person, but I've noticed personally over the years that those who looking after themselves really well, live a much long life with more stable health, than those who continue to smoke, don't eat properly, don't exercise etc etc.  That's why the pulmonary rehabilitation course is a good thing, you get to know the does and don'ts.

    I've been diagnosed 12 years now and I suspect I've got at least another 12 years left in me if not more smile

    Just aim for getting all the tests done and out of the way, get on a PR course, do the best you can to maintain as good health as you can so that you can stabilise your condition and this will help you live a long a happy life in to old age.  

    Best wishes V

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    • Posted

      Thanks for your reply.  I asked about a PR couse and my GP said it was for people with more advanced COPD.  I will ask again as I know if you are onto things early, you can potentially slow the progression.  

      I have now seen the Alpha1 specialist and he does not think I have ALpha1 but is sending a blood sample to a clinic in the US to be sure.  They test for every genetic  type of Alpha1 (over 120!). Here they test for the 4 main types.  My blood levels came up at the low end of normal.  I could potentally have normal levels which are non-functioning which is why he is sending things off to a genetics lab.  He also said my emphysema did not look "normal" as in he has not seen it present like this before.  Nontheless it is some form of emphysema.  It is all very confusing to me as my case is just not staighfroward.

      He also thinks that I may have asthma on top of my emhysema which is causing my DLCO numbers to vary so much.  He is going to do nitrite oxide test for this.  

      Hopefully I will have some answers soon.  Thanks.

      Oh - have had my flu jab but will ask about the pneumonia vaccine as well. THx!

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    • Posted

      Hi tell your doctor he is talking rubbish!   I was only very mild when diagnosed and was sent on a PR course very quickly.   Maybe you should ask your copd nurse instead?   x
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    • Posted

      I agree 100% from all I have read. I have an appointment to follow up with up with a few things so will be sure to get that sorted. Thx!
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    • Posted

      You're right and your gp is ignorant:  the sooner you start rehab the better.    I started within a few months of diagnosis and although I sometimes have bad days, my COPD has been stable for over 3 years.

      If you don't need a referral where you are, just go direct to rehab:  it really is worth it

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