Just got a diagnosis of COPD - New to BLF -

Hi All

Having googled COAD I now know it is the same as COPD.

to give a little history, I gave up smoking 17 years ago and took up running about 4-5 months ago (have run/walked 4 x 5k park runs to date) However on one of my training runs after my first 5k I found I was struggling to take deep breaths. This has stayed with me ever since (even when not exercising) My doctors initial thought was running induced asthma, however the chest x-ray shows early COPD. As I have a chest infection at the moment I haven't had the breathing test (not sure of the medical name of that) and can't book it for 6 weeks after I finish my antibiotics. Currently in shock a little, as am only 47, and am otherwise normally healthy. I breath normally currently but have to force the last bit of a deep breath.

Not sure what to expect but not sure of life expectancy etc, prognosis?

Alison

20 Replies

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  • Hello Alison, and welcome. You've come to the right place for support and advice. They're a lovely bunch of people on here.

    Are you in the UK? COPD can't be diagnosed from a chest x-ray, you will need the spirometry test before you will know what's going on, so try not to worry too much.

    Wishing you well.

    Pam XXX

  • Thanks Pam. yes am on outskirts of Luton. One of the nurses just rang me from BLF and said much the same thing. 6 weeks seems forever to wait to book the spirometry test but she also said it needs to be that long after an infection too. I have my fingers firmly crossed that it is not as bad as I thought :-)

    Alison

  • Hi Alison. They should let you book your spirometry test 6 weeks from when you finish your antibiotics, so if you've have now finished them they should be able to give you a date.

    Please don't worry, it could be something really simple.

    XXX

  • fingers crossed :-)

    x

  • only started them today so will be 7 weeks. am hoping for the simple option :-)

  • Welcome Alison, it is a shock when first diagnosed and a lot to take in. You can live well with COPD. Moderate exercise, good diet and generally looking after yourself is the way forward.

    This is a wonderful site with lovely people and lots of advice and humour too.

    Take care and hear from you again. Xxxxx

  • What did the x-ray show? I didn't think it was good for diagnosing COPD. It may show enlarged lungs?

    Spirometry is better. You are still youngish to have COPD, and it does seem to have come on quickly. I have a bit of a thing about hasty dx of COPD. push for more details. Let us know how things develop.

    K x

  • will do K.

    thanks all for your support. :-) he didn't go into full details but did say early signs of COPD which paniced me, think he wants the Spirometry first before discussing in more detail. just unfortunate I have a chest infection and have to wait 7 weeks now :-(

    Alison

  • hi ALI ive had copd for long time (14yrs)

    its just called, breath test, takes while, big shortage specialist respirtory nurses, 6 wks after infection is normal wait,

    you dont mention inhalers, ive had loads chest infections and visits to hosp to go on nebuliser, eventualy bought my own machine as i found i was struggling when had infection, inhalers wernt enough, i learned to self medicate over time,

    exersisers for chest is good for lungs, hope u well soon

  • he gave me a ventolin inhaler which made little, if no difference to be honest. me too :-)

  • hi ALI

    ive had that for yrs, also a steroid inhaler, trouble is when get chest infection, they dont work as well, thats why i got nebuliser while ill, ask your doctor, good luck

  • i take ventolin, spiriva, and flutacone/salmeteral

  • Hi Alison,

    Good advice all through as ever with this site. I was diagnosed six years ago. Gave up smoking 20 years ago. Infections are the problem but they can be beaten. Getting your medication right for YOU is vital and not all GPs are best at this disease. Specialist consultants are better. I was actually diagnosed from a lung biopsy when i had recurrent pneumonia (following a bone marrow transplant for leukemia - another story!). BUT!!! I am no expert so check what I say here but I am sure it will help - knowledge is a weapon in this disease!

    There are forms of COPD and it varies more than some people think. Emphysema is the one I have but I also have another form, bronchiolitis. Emphysemia affects the alevolis which become damaged by smoking etc. You have millions of these tiny sacs which transmit oxygen into the blood and extra carbon dioxide out. Which is why breathing out is as important as breathing in. Brochiolitis affects the broncheoli which are the tiny tubes that carry air down into the lungs and to the alveoli and then the CO back out. They have tiny fronds inside (cillia) which are damaged by pollution like smoking. There are other members of the COPD family caused by specific pollutants - like asbestosis and pneumonooconisis (coal miners lung). There is another variation called pulmonary fibrosis (I think) which is similar to those. You need CT scans to diagnose most of this; X-rays are not fine enough.

    My medication (among a lot!) provides drugs for the broncheolitis (steroidal) and another for reduction of mucous, another for the 'asthmatic type' effects of the alveoli damage, a reliever for breathless attacks (the 'blue' puffer). But I am also now on long term anti-biotics because the deep-seated broncheioli are regularly becoming infected. My latest prescriptions seem the best yet.

    If you are offered a Pulmonary Rehabilitation Course bite their arms off! it is a brilliant eight-week half-day course in which you will learn loads about the disease from front-line specialist nurses and phyios, how to take you medicines properly, how to handle breathing episodes, why you should have emergency anti-biotics and steroids available and lots more. Plus an exercise programme and plan to build up muscle strength - muscles use oxygen to work - us COPD-ites need them efficient!

    Blimey that's a lot. But do check out what I say with you medics - time spent learning about you condition will pay back big time.

  • Welcome Alison

  • Can't add anything to the excellent info and advice already given so I'll just say 'welcome Alison, hope your infection goes soon and that your breathing tests go well' :) x

  • Hi Alison, hopefully you will not have COPD when you finally get tested however if it is, its not the end of the world. You will still be able to do most things but just at a slower rate and have many many years ahead of you. Being a youngster you will probably be the recipient of a cure one day.

  • u will feel a lot better when they get u on right meds for u and chest infection is cleared up wishing u well.

  • Hello Alison, Your story sounds like mine. I was told by a locum after he looked at my xray that I had COPD. I was offered a chest xray after having 3 chest infections this year. I was totally shocked as I never once thought that I had anything wrong with my lungs as I swim every day and generally I'm really healthy. The locum refused me antibiotics but I have put my spirometer test off until before Christmas. I am quite anxious about having this test to be honest. On a brighter note - It is so good that you have joined this group - they are a lovely bunch of people, everyone has been so supportive and positive for me. Keep me posted as to how you get on with the test. Best wishes to you.

  • will do. 6 weeks seems such a long time to have my test so possibly could be new year at this rate as don't finish my antibiotics for another 4 days.

  • I would humbly suggest you check out Buteyko breathing,(good books on it now).you'll be amazed how much you'll learn about how to breath correctly.

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