Still in shock

After 2 weeks of testing for breathlessness my GP carried out a spirometry copd test and informed me my lung capacity or reading is under 20%. This was yesterday

I am 49 years old and was a heavy smoker until 2 yrs ago I have always been breathless this is why I stopped smoking but I just never felt better for quitting. Since the start of this year the breathlessness is constant, when sitting, talking, eating.... My oxygen must be good as it was not picked up by 3 recent nurse practitioner examinations , I have swelling in my clavicle , intense pain in my right shoulder and have just had a lung X-ray.

My GP wants further spirometry tests and mentioned a referral to pulmonary rehab, I have always been active, I don't drive but walk a lot, I work full time, I don't really understand what this all means, my GP just seemed very concerned.

My ribs chest are so painful also.

Any advice, guidance or experience would be appreciated I would like to try and carry on as usual which I have been doing.

22 Replies

  • Hello Heidibutcher, I am sorry that you are suffering with so much breathlessness and discomfort.Thank goodness you are getting some professional medical attention and hopefully a full diagnosis.

    Your lung capacity is very low and you must have been struggling for a while.I was dx at age 49 with severe emphysema and my lung capacity was in the 30's but after years of taking the meds and not smoking I have improved quite a lot and hopefully you will too.

    I was tested and found to have Alpha1 Antitrypsin Deficiency and it explained why I had got severe dx relatively young, have you had the test?.

    I am wondering if you cough a lot and it has bruised your ribs. I hope your situation improves greatly, keep us updated, wishing you wellness, huff xxx

  • Thanks huff, not had any tests yet, my family history my father had emphysema in his early 50s and died of lung cancer at 60 I am not sure if this could be the cause but I was a very heavy smoker for so long and used an ecig to stop which I was using until very recently when I just couldn't through coughing, I will keep you updated though because right now I don't know what's going on in my body xx

  • Hello Huffer..was interested in your reply !Was interested in your reply. Like you I have emphysema and lung capacity seems to have stabilized at 25.Was interested in you talking about Antitrypsin Deficiency Test which I had not heard about. What does it involve and what do they give you? Really appreciate some info. Was it this test that helped improve your lung function?

    Cheers. .Piping

  • Good Morning Piping, A1AD , as it is known as , is a rare genetic condition and it is a simple blood test which you could ask your doctor to arrange.

    Because our bodies don't make much , if any Antitrypsin , we have very little protection against any infections. A proton called ' elastase' is free to 'attack' the site of infection.It is made in the liver ( the Antitrypsin) and can get stuck there because it is not made correctly and then this in turn can cause liver problems.

    Sorry it's quite a lot to take in and there is more to it...different levels etc. and I believe it goes back to the Vikings! genetics!😁 huff xxx

  • Look up the test through queen Elizabeth hospital birmingham they send out a test kit. Which your doctor simply signs form for and sends of a blood prick blood sample. You do all the work for gp.

  • Piping, it's usually a simple finger prick for blood to test.

    Please ask for one HeidiB, I believe it should be a standard test for any one who's on the young side for lung problems.

    Good that your GP is concerned, it means he/she is on your side. Take every test they offer until you get a diagnosis.

    PR (pulmonary rehab) would be great for you. It's made up of two sessions. Relevant exercises for lung health & stamina plus an educational session where you will learn loads. Do get on a course if you can.

    Good luck with it all, keep in touch

  • I go along withyou Peege. I'm glad HeidiB that you walk, because exercise is your future to improve. YOu will see taht PR will help you. will you be able to get time off work, because this is really good for you.

    I was dx with bronchiectasis when I was 40. I detriorated quickly due to a poor immune system.But the consultant and teh gym did wonders for me. Trust you very active GP. Keep off teh smoke for ever and keep your walking and perhaps some exercises for the lungs at home like these:

    all this should give you more confidence and diminish your shortness of breath. Speak to your nurse when you see her for Pulmonary Rerhabilitation; ask her anything you want to know, she is an inestimable source of knowledge on all that is lung disease and relief. Take good care of yourself and give us your progress, and any questions you have. Mic

  • I just had a look at that lady doing the lung exercises. she has also a set for the legs. Only do what you can and GENTLY. It takes time to get fit, but you will, trust yourself!


  • I'm adding some more from teh same place. those are freal fun to do , but you know you are breathing with her!


  • Thanks for this I can do some of these 😀

  • OK! As I am getting better from this chest infection , I am graeful for this woman who shows so many useful exercises. Hope you gain confidence and suffer less. Mic

  • Thank you :) I did exercise gentle before but feel I can't now I told the GP this and she said PR is really important too

  • Hi Heidi

    It's not all doom and gloom ya know.

    I had a very low lung capacity 2 years ago but with a healthy diet and as much exercise as you can manage I have built it up. I am 50 and was dx 2 years ago. I am now in a much better position (in figures) but in my ability to do more 'normal' things.

    Keep calm and breathe on.

    If you can manage any exercise I would recommend it. Please don't panic for the things you can't control or don't know about (yes easier said than done).

    If your GP is on the ball, which it seems like, he will look after your medication but we are a support group that will help you with every level of your condition.

    Take care


  • all i can do is sympathize with u i had open lung biopsy in january and havent been the same since i was diagnosed with desquamative interterstial pnuemonitis which is basically inflammmatin of lung tissue i alsi hav emphysema im on long term sreiods at moment and im just finished my 4th antibiotic. To me the op wasn't necessary as i feel worse and am breathless and sore all the time horrible life but i find some of the lung doctors are unsympathetic because u were are a smoker no one told us when we were younger of the dangers if smoking cos u coyld in the hospitals at that time

  • Hi Heidi i was suffering from depression over 8 years ago and my doctor noticed my breathing so sent me for a test, result copd stupidly i still carried on smoking until 2 years ago. My copd worsened after giving up so my pulmonary nurse put me on Fostair. I am much better but find certain things affect my breathing. I would just try to relax as stressing is not helpful avoid going out in the cold or if so cover your mouth, breathing exercises help, ask your surgery or google. You will know what triggers your breathing loss so will avoid. It is scary but you learn to adapt, i just go with the flow now on a bad day i know to slow down not do the hoovering, spring clean the house or decorate! A lady on this site said to watch when hoovering cause of the dust. On a good day i go out locally as walking helps. Just pace myself really. I hope this has helped a little and always available for a chat. Take care

  • Welcome to the site Heidi

    Hope we can put your mind at ease some. You got some very good replies, from some of the younger members.

    Your lung function is very low. You seem to carry on really well. Thats actually one of the best tips for copd. The less you do, the less you'll be able to do. Move it, or lose it! You are already doing that. Did the GP give you inhalers? What type of work do you do? Just wondering if you could have strained your chest muscles. We will gladly answer any questions you have. Glad to have you as a member of our family!

    Rubyxx 😊 😊

  • I work for local Healthwatch mostly engaging with people , talking has become very difficult this propelled me to the GP I hope the breathing exercises will help this as I love my job and talking to people.

    The GP has given me an inhaler which I have to use with a spacer I tried it for the first time yesterday and it felt a bit clearer,

    I am really glad I found this site 😀

  • Bless you, it's all a bit much to take in isn't it? I was only diagnosed a couple of weeks ago and looking back it makes sense now. Chest infections that took an age to clear, wheezing and breathlessness but it was still a shock. I'm no expert at this but the guys on here who have been living, yes living with this will help you.

    Have you been given inhalers to help with your breathing? I would recommend reading through the posts, I found a lot of advice there and don't be afraid to ask questions, they are very patient with me :)

    The key to slowing progress down appears to be exercise and healthy eating and I've seen vitamins recommended too (too help avoid chest infections etc.)

    I know you're going through a lot of emotions at the moment, I have done and still am, but that is normal. Allow yourself time to work through it, ask lots of questions and come here to have a moan everyone does.

    Everyone here recommends pulmonary rehab and finds it a big help, so grab it with both hands and above all carry on enjoying your life.

    My nurse asked how I felt the day before I was diagnosed, I said "not amazing but ok" then she asked how I felt that day, I said "about the same". Exactly, she said, all that has changed is that you now know why all this stuff is happening.

    Sorry, it's a bit of a ramble but I too am still working through this, you will be confused and sad and angry and everything else but just understand that's normal and allow yourself time.

    The guys on here will be in with better information than I have but you have come to the right place. Take care of yourself and hopefully we'll speak soon xx

  • Really good advice thank you, I started taking up the vitamin regime that I have always followed but stopped end of last year, I started some of the Callanetics exercises yesterday again something I have done daily ever since I can remember but stopped at the end of last year as was getting too hard.

    I had a good day today first day back at work and did an evening event too I don't feel as breathless talking this eve, maybe I am being too positive , I used the inhaler x2 today , but maybe these things helped me before without realising xx

  • I was diagnosed at 42 it is very young and seems to be the norm these days makes you wonder what's going on

  • Hello Heidibutcher,,,,, a shortness of breath is a serious condition,,and 20% lung capacity is very serious and needs immediate treatment,,,,,your body is not taking in enough oxygen and therefore your heart cannot pump the oxygenated blood around the body,,,, your pain and aching joints and muscles are under great strain,,,,,and the pain in your clavicle is related to this problem,,,

    Your GP is correct in wanting to do more tests and get you the right treatment,,,,,you have a serious condition and if not your heart will soon start to fail,,,your body is just doing enough to get by,,,,,,the nurse practitioners may not have been looking for the oxygen shortage,,,as they do not have the same training as your doctor,,,,the knowledge isin the job title,,,,nurse,,,,

    Your GP has diagnosed a serious condition,,,and is going to send you to the right people for vital treatment,,,,,and if the gp says you have to be off work for your health,,you will need to do what he says.

    Keep in touch and we are all here for you,,,,ttfn from Karen.

  • Hello Heidibutcher, I am 47 and have just been diagnosed with very severe emphysema.. My fev1 was 22%. I have more test my pulmonologist is giving me next month. I have no cough just breathless. So far I'm only on anoro, brea, spiriva and an emergency inhaler. I just took the Alpha1 test. Theres a specialist in florida that test for this. It take approximately 4-6wks for results. I am not scared so much as I do not want to lose my job or go on oxygen. I wish you the best.


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