Severe Emphysema query

[Happerstad]

I have Emphysema, diagnosed as Stage 1 COPD on docs but the Brompton Consultants notes state SEVERE Emphysema with poor gas transfer. FEV etc is ok, so according to the video published by the BLF I'm not in the dangerous area where I get a text/letter to isolate. I am confused though as to how my emphysema is severe but only stage 1? (was originally diagnosed as stage 2).

I am 64, also have Coeliac Disease (autoimmune condition) and ischaemic heart disease and have had 2 minor heart attacks, first of which required stents.

I'd have thought I was in the risk category.

Will attempt to contact GP recshielding any answers re my first query would be welcome

[O2Trees]

I cant answer your question as to whether you would be considered high risk Happerstad. But I would definitely also be very confused by the contradictory information you have been given about your emphysema. Could you call your consultant's secretary at the Brompton? Probably easier to get through to than your GP. I hope you get this resolved asap. Good wishes and stay safe

[Happerstad in reply to O2Trees]

Good call. TBH, I never fully read the letter until last week to check where I was on the FEV score.

[hairynosedwombat]

assuming that severe emphysema is equal to severe copd (on the basis that copd is the umbrella term) then you are at least vulnerable, by government definition. i think also extremely vulnerable. i think this is another confusion the government have allowed (if not encouraged) ~ using the two terms without explaining the difference or even introducing them with an explanation. i think many of us have (like me) read the two terms and not realised that they were intended to be different.

meanwhile o2trees has your answer, try for your consultant's secretary, or a colleague. their answer will be more useful than your gp's.

[Happerstad in reply to hairynosedwombat]

Yeah, I will definitely do that. Thank you

[hairynosedwombat in reply to Happerstad]

good luck. i hope you get the right answer.

[Seams13]

To my knowledge, emphysema has 4 stages -

Level 1 - Mild

Level 2 - Moderate

Level 3 - Severe

Level 4 - End of Life

I myself, after having suffered with breathing problems for years and just being given inhalers, finally asked the doctor for a breathing test after speaking to a BLF nurse. It was then I learnt that I was level 3 and so I have severe emphysema.

You really need to speak with either your doctor/consultant and ask for clarity of your health. Please don't hesitate. I found out the hard way.

[Happerstad in reply to Seams13]

Thanks and sorry for the late response.

[skischool in reply to Happerstad]

Please ignore the level 4 end of life statement mentioned,there is no such thing as and end of life diagnosis for Emphysema and stage 4 under the gold standard of classification is very severe,which i have and i intend going nowhere near my coffin for the foreseable future.

[Happerstad in reply to skischool]

Thank you for that. Still confused with it. I did get a letter via the Consultant stating I should take all steps to avoid catching Covid-19 but didn't get put on the Government list. I'll take it up with the GP again, but fortunately I've been furloughed throughout this saga so no issues with work as of yet.