Do I have COPD?

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Hi everyone.  I am new to this site and am hoping you can help me understand a few things.  I am a 43 year old non smoker and I developed a cough in August.  The cough subsided but never fully went away.  Each morning since then I have coughed for 2 hours or so.  My Dr did a simple peak flow test and my numbers came out at 300 out of the predicted 444.  She then sent me for spirometry tests.  These are the results -

FEV1-77.3

FVC - 99.3

VC Max - 91

PEF - 83

MEF 75 - 63.5

MEF50 - 47.4

MEF25 - 40.2

I was then given a reversibility test which only went up 6.5 percent.  From all I have read these numbers clearly state COPD as it needed to go up 12 percent to be classified as asthma.  Despite this, my Dr has not yet classified it as COPD. I should add that I have gone privately to a respiratory doctor who specialises in COPD.  He somehow thinks we can still get the numbers to go up with long term inhalers.  I would love to believe this but all I have read says the reversibility test defines asthma from COPD.   I am so confused and scared about all of this.  He says we can try long term inhalers for a month or do a cat scan.  He tried the long term inhalers initially but they caused major heart palipatations - so bad I went to A and E as I thought I was dying.  Never had them before!! I am reluctant to go try another steroid inhaler and reluctant to have a CT as I am very high risk for breast cancer.  He has sent for an alpha 1 deficiancy test which I get back next week.  Anyway, if you can shed any light on this for me - please do!  Thanks in advance for your help!  Lauren

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  • Posted

    You can get COPD without smoking.

    A spiromoty test will give the answer.

    It does sound like you have it.

    I have it too its not a death sentence honest xxx

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    • Posted

      Thanks for your feedback.  I think my Dr is hoping for the best but I have read enough myself to know what the numbers are saying.  Positive reassurrance is essential  Thanks.
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  • Posted

    I have had an xray showing mild changes copd I have no cough may be a little out of breath walking up the stairs. two doctor's have listened to my lung both said they are not clear . waiting for spirometry test.i gave up smokibg five years ago. It's very worrying for me...
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    • Posted

      If your lungs are not clear, it is possible that it is a chest infection.  My chest is totally clear but I do look to have COPD.  Fingers crossed for you.  Waiting is the hardest thing really. Good luck Mandy.
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    • Posted

      had to lots of antibiotics and it's still the same.waiting for a spirometry test.its driving me crazy thinking ahead of myself. thank you for replying. smile
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  • Posted

    Lauren,

    I was born with severe asthma and 30 years later COPD was added to the mix.  I never smoked. I am 56 now with a lung function of 30% by age 32,  permanent damage.  My peak flow on a good day is 250 or below.

    Go with the doc who believes your numbers can go higher and I can testify that the long term inhalers work fabulously.  Do not hesitate!

    Dawn

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    • Posted

      Hi Dawn.  I should have mentioned that I have never had asthma. My doctor has also noted that because my numbers remain pretty constant on the peak flow that asthma damage is an unlikely cause to this
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    • Posted

      I am sorry to hear that your lung funciton is so low.  As a non-smoker I imagine you feel terribly unlucky or maybe you are a more positive person than I amwink My doctor is going to try another type of long term inhaler as the symbicort gave me heart iregularities.  The trouble is I am going to see my in-laws who live in New Zealand and traveling Australia for 3 1/2 weeks.  I am reluctant to start a new inhaler before I go (Friday) as the last one gave me so much trouble  He said I would be fine to wait a month.  Can damage be done in a months time by not starting them? 

      I probably should have mentioned that I have never had asthma.  My peak flow stays between 300-350 - never strays.  Unlikley that it would be damage from asthma for me.  

      I am curious to know what your FEV1 was when you were first diagnosed at age 32.  56 seems so so young to have a lung function of 30 percent.  Are everyday things hard at this stage or can you still lead a normal life?  

      My thoughts are with you Dawn and hope that your numbers can stay where they are and not drop further.  Thank you for sharing and for your input.  I am still in disbelief as I write as I had never even heard of COPD 2 months ago.  Now I feel like it is consuming my every minute 

      Hugs to you, LAuren

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    • Posted

      Lauren, 

      Yes I was born with severe asthma, but my parents still heavily smoked in my house and kept a dog knowing that their environment would hurt me.  At age 7, they told me I was not allowed to have asthma anymore because they were sick of being inconvenienced and my health was too costly.  They never took me to a doctor from then on and made me wait as long as five days in an asthma attack before taking me to the emergency room.  

      This medical neglect and then pregnancy at age 22, and my lack of knowledge of how to take care of myself once I left home, all contributed to my personal demise.  I share this so you know why I lost 70% of my lung capacity so early and why you will not end up as severe as me.

      What the hope for you in my message is that with proper management, that I sought out for myself as an adult, I remain alive and active and my lung numbers have not dropped any lower for 24 years.

      You will be just fine!  I am a walking talking breathing miracle who does not even appear to be as sick as I am.  You will be fine!  

      It is perfectly normal to allow this shocking news to shift your view of your life and your children.  It makes every moment mean more and living life more deeply and purposefully.  All positive even with my suffering.  And I have been honored to be raising my three granddaughters!  So grab your life and fear not your COPD!  NO FEAR!  Fight the good fight with proper meds and believe that everything has a silver lining!

      Hugs!

      Dawn

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    • Posted

      And another good thing is that I would never medically neglect my granddaughters.  One of them developed asthma at age 10 and I am the one who noticed a difference in her breathing and set her up with a specialist immediately.  So my personal suffering has been worth it.

      Everything I do is difficult to do at 30% lung function.  I am a survivor and so will you be!

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    • Posted

      Thank you for sharing such personal information with me to quell my fears.  It sounds like you did not have the easiest start to life.  Children are the worlds most precious beings.  It breaks my heart to hear of such neglect.  I am sure you are an amazing and inspiring grandmother.  Bless you for raising your grandchildrem - quite an undertaking I am sure but the rewards and benefits are immense!  

      You have such a positive attitude and outlook.  I really admire that.  I have been blessed in many ways in my life but for some reason I always seem to think the worst.  I ned to somehow work on that.  

      I went for a second opinion yesterday and the doctor did not put me in the COPD category.  She believes, like the original doctor, that my small airways have been affected by the bad chest infection I had in August and that there is a chance they can recover.  She did a few additional test - one for vitamin D deficiancy which is common in patients with COPD and another to check for specific bugs that may be lingering.  I am hopeful but need to be realisitic.  They both want to wait until I come back from my trip down under to see if the warm, dry air might help the airways to open.  If not they will do a CT.  She also wants me to see a respiratory therapist who can help me to breathe better and clear the passageways.  I am more confused than ever.  If I had the tests done at my GP through NHS I would be done and dusted with a label of COPD.  I am thankful that they are looking into other things but it does not line up with what I have read.  The second opinion doctor informed me that my original doctor (confusing) is one of the worlds top in COPD.  He is at the Royal Brompton in London so I know I am in good hands.  

      I get the results of the alpha1 back tomorrow,  Fingers crossed.  

      So time for spell check - packing for a trip half way around the world with 3 kids is a full time job!  We leave Friday night. 

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  • Posted

    Hi from the figures your lung function is 77.3% which indicates very mild copd.   How the figures are worked out is by taking your age (lung function declines with age),  weight and sex and working out the average FEV1 which is normal for people without copd.   Anything under 80% of this average indicates copd.  You are just under it.   

    Your fev1 can vary by a few points every time you do a test and meds should be able to increase it.   Inhalers are a very valuable tool in treating the symptoms.  I am 66% and use ventolin inhaler (the blue one),  symbicort and spiriva.   Spiriva is more a longer acting bronchilitor which helps reduce your lung function loss over time so it is important you take it as prescribed.  There are different ones so maybe another would suit you better.   

    Please don't worry so much though I know that is easier said than done.   With the right meds,  eating  healthily and exercising, though copd is irreversible you can halt the decline for a long time and slow down the progress.   It is not a death sentence at your age and level if you look after yourself.   You can still lead a long and healthy life.  

    It is good you have been sent for a alpha 1 deficiency test.  This is because you have never smoked and are relatively young to be diagnosed with copd.   Alpha 1 is  a genetic disease but very rare so please don't worry too much - your doctor is just erring on the side of caution.   

    If your doctor wants you to have a CT scan please do.  This would show any damage in your lungs so you would know exactly where you stand.  

    Above all please try not to let it dominate your life - if it is just copd then you will probably be in trouble in around 50 years time when you are 93!   

    I hope this has helped a bit.  Please let us know the results of the test.  Keep coming in here and we will do our best to help and support you.  

    Bev x

     

     

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    • Posted

      Hi Bev,  

      Thank you so much for your message. You hade me feel mre optimistic about the outcome of COPD.   It is so strange to me that I am here wriitng about this as I had not even heard of COPD until recently.  I am trying desperatley to get my head around the fact that I actually have this when I am a non-smoker.  I really am thinking worse case scenario which is not healthy - I know.  I have tried to be positive but each corner I turn this outlook seems to get shot down.  Initiallly I was thinking, asthma??  I do not want to have asthma.  Then is was COPD - I cannot have that!  Now a straighforward case of COPD without the alpha deficiancy is the best case scenario. I have three very young children between the ages of 2 and 7 and look at them in a whole different light now.  I just hope this can be slowed enough for me to live a full life for their sake.  I know COPD is not a cookie cutter disease.  Every case will be different.  It is hard not having answers right now as to how quickly this will progress.  I have lots of learning to do.  It is amazing that there is an aoutomatic support system of people I do not even know.  A reminder that the world is filled with wonderful people.

      I am trying to avoid the cat scan as I am at very high risk for breast cancer due to hisotry and abnormal cells in biopsies.  That is another story though.  My doctor thinks we should wait as I am going away to the warm climate of Austalia and NZ to see my husbands family on Friday. (If I can bring myself to go in my nervous state)  He still thinks things could somehow change with time and a different climate but I think he is putting off the inevitable.   

      Where are you in the worls of COPD?  Are you diagnosed and if so what stage?

      Thank you again for your message.  I even showed it to my husband who showed some hope as well.  Lx

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    • Posted

      One more- I see you are 66% which is not too far off from me I suppose.  Do you find things harder to do and get SOB easily?  How long have you been diagnosed and what was your original lung function?  I guess I am trying to work out how quickly it declines.  Thanks!
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    • Posted

      Hi Cookie.   You are in stage 1 - very very mild copd.   This is between 70 and 80% (in the UK anyway.  In other countries this might differ).  So I have just gone into stage 2 at 66%.   This is moderate but I class it as mild/moderate.   I was diagnosed nearly 6 years ago now.   I first started off at 63% but the nurse reckoned that was mainly poorly controlled asthma. When I started taking the copd meds it went up to 73%.   

      At my last copd review I came up as 66.3%  but don't forget I am 17 years old than you and some of that could be age.  Also I am stupid and still smoke (trying to give it up),  don't take much exercise and don't eat very healthily so losing only a few points over nearly 6 years is better than I deserve.  The only thing I do properly is take my meds religiously and tackle infectons straightaway.   The last 2 are very important.  

      So I am losing just over 1% every year.   But if it is just copd and you do all the right things you could stay around 77% or so for a long time.   Everyones rate of decline is slightly different but I guarantee you are not going to go from 77% to 50% eg by the time you are 50!   It doesn't happen that quickly unless you have a more serious lung disease!  

      To answer your question yes I do find things harder to do and get sob quite easily but a lot of that is my age and general unfitness (and smoking) You are younger than me so should still have a lot more energy.

      I know many people in stage 3 and 4 (severe and very severe)  who have been there for many years and some still work.  They still have some quality of life.   

      My advice to you apart from what I have said is:

      Take your meds religiously

      Take your lungs seriously and tackle any infection asap as these can further damage your lungs

      Most of all - live your life and enjoy it as you have many years of living to do yet.   It is NOT a death sentence so don't worry yourself into an early grave please!

      Hope this has helped.    Bev x  

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    • Posted

      Thanks Bev.  I am sure you have heard this a million times but I can't help myself - please, please quit smoking.  I am not here to judge as I have never smoked (other than a few out on the town with friends in younger years)  They say it is as addictive as heroin.  My mom smoked and finally gave it up as she ended up with kidney cancer as a result of smoking.  One kidney gone and cancer gone as well.  I asked her how much she smoked around me and my sisters as kids but of course she says whe really didn't.

       When I see people on the street smoking I just want to stamp out their cigs and shake them until they see that they have a choice in their health.   Bev, you sound like a wonderful person and I am not in any way judging you.  Because I am not a smoker, it is just something I do not undersand.

      It is encouraging to know the rate of decline is slow.  My fear is that I may have the alpha 1 deficiany or have something worse than COPD as I really do not fit for it.  Please see the response I gave to Dawn abave for the update on my second opinion.  I am hopeful and must stop googling thing.  I felt so much better after I left the doctors then came home and googled small airways disease and got myself completely worked up again.  

      Everyone I have encountered on this site has been so positive.  I admire all of you.  I have been truly blessed in life and health is something I have taken for granted.  I am hopeful but very confused on all of this.  I will start meds once I return from my trip and will take them religiously.  hopefully they can find something that will not effect my heart this time.  Initially they gave me an iregular heartbeat so I will hold off until January when I return from our travels.  Hopefully no harm will be done during that time.   Laurenx

       

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    • Posted

      Hi thank you for your advice.   I know I have to give up smoking and I am working on it.  It would do no good to tell smokers they have a choice for their health.  All smokers know this.  We also all know we are killing ourselves.   It is not information smokers need (which is all the Govt thinks of) but proper help.   The sort of help and understanding other drug users get.  Would you tell hard drug users to just give up - its easy or alcoholics?  I am not saying you do that but I have had this said to me loads of times.  If smokers were not made to feel so guilty or stupid by the Govt and general public but it was recognised what a terrible addiction it can be for some we would feel better about ourselves and would have a much better chance of giving up.   

      Many smokers have stopped but one size doesn't fit all does it?  It is treated as though it does all the same.   There are more treatments available now thank goodness and I am going to put my faith in the e-cigs.  The Govt. could ban all smoking completely if it wanted to but won't because of the huge source of income it provides them.   

      On a seperate note you might have lung damage yourself because of second hand smoke if your mother smoked around you.   x

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