Newly Diagnosed

I have recently been diagnosed with emphysema. I was diagnosed with rheumatoid arthritis and to start taking the drug for this I had to have spirometry tests. My FEV1 was 95% but transfer rate was 56% but had a cigarette walking to the hospital (I have since given up the ciggies) I was sent for a scan and the consultant wrote to my doctor saying I had extensive emphysema! I went in to panic mode because my mum died of this last year and since the diagnosis I have done nothing but think and worry about it from morning until night. I walk up a big hill and then 50 steps 4 nights a week and walk a mile in to town and back once a week and have never needed to rest although sometimes to get quite breathless. Since my diagnosis I find that I can feel my thumping heart beat even when resting and I puff when going up the stairs and also have almost a continuous headache - none of these things I was aware of 10 weeks ago. Could my emphysema be declining that quickly or is it likely that I've got myself in to such a pickle that I'm suffering with anxiety.

No ones suggested medication and I'm still active so how come I have extensive COPD? Your help in getting me to put things into some kind of perspective would be so much appreciated. I know there are so many people out there who are much worse off than me

11 Replies

  • Hello sensible woman

    Welcome to the site.

    I am sure someone will be along soon with some medical advice, but l know when l am anxious my heart pounds and l get headaches.

    You are not alone being worried when first diagnosed, you will soon learn there is lots you can do to help your condition....and don't believe everything you read on Google !!!

    Velvet xx

  • Thank you Velvet. I so tried not to Google but have been so confused and upset that I was desperate to find something positive - alas the opposite happened and hence the muddle I've got myself into. The people here seem to be so grounded and supportive and I hope in time I will be able to reciprocate with some words of wisdom and encouragement

  • I recommend you call the BLF nurses on 03000 030 555 during office hours for a chat. They will be able to explain.

  • Hi & welcome. I think your best course of action would be to see your GP & ask for advice.

    I'm wondering why you're not on meds. Do you have any inhalers?

    Sorry you're feeling under the weather so get well soon 🌻

  • My RA consultant just mentioned I had COPD in a letter to my GP with regard to my RA medication. It was one 'throwaway' sentence that has seemed to turn my usually calm persona into complete panic. No one has suggested I go to a clinic or go on any medication. If I'm that bad why do I function ok and not on medication. I'm just so confused.

    Thank you for you lovely message, it's so appreciated

  • Please try not to worry so much. Even if you do have COPD there's a chance it's so mild you don't need meds.

    I would still advise you to see your doctor who can explain what the letter actually meant.

    There's absolutely no point in worrying unnecessarily till you get answers.

    I'm hoping you get an appointment to set your mind at rest.

    Take care 🌸

  • Defo agree with jessy11 but what i will ad is most docs if the see stuff on xrays will not say out if its not causing a problem

  • Well said, I remember back in 2010 when I had a CT scan for other reasons, my bullous emphysema was picked, my doctor said he wasn't going to tell me cause its stage 1 very mild fev1 of 79% with no very little symptoms. I think he only told me cause I was smoking and this was identified by chance, second spriomitry test in 2013 was fev1 of 81% and recent chest xray showed very little change since 2010. The hint is don't smoke, exercise, eat healthy and say 3 hail Mary's 😇 I'm still not on any medication and try my very best to look after myself, being diagnosed early wasmamreal wakemup call.

  • Hi sensible women I was also told this year I have copd gave up thefags straight away and then goggled it then went into panic mode I have since spoken properly to my docs and I'm mild to moderate exercise healthy eating are what's needed I 2are not on a y meds as yet I think our brains go into over drive try not to worry to much and look after yourself :-)

  • Hi S.W, and welcome, if you are managing those hills and all that walking I would say your mild COPD, just look after yourself and you should be fine for many years yet. xx

  • HI,& welcome! You have been given good advice,so I won't add to it.😀

    Just look after yourself,& keep doing what you're doing,it all sounds pretty healthy to me!

    Don't worry to much either! xx

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