specialist not listening again

Seen a specialist today, i have 20% lung capacity, she stated she cant understand how i walk with only 20%, she said she is not sure it is copd, i would like to know what else it could be, for 6 yrs i have been told i have severe emphasimia and asthma, i told her i use wheel chair when out as i have coughing black outs, she was fine with that, does anyone else have 20% and walk around, it is hard to do but cant sit in corner all day.

will not be seeing her again.

14 Replies


I am 22% still walk around local shops, use scooter to go supermarket no point in being silly.

Attend oxygen assessment for six minute walk test annually.

If I can see a safe place to sit and rest I don't mind walking, slowly but always get there.

As long as you keep control of you breathing and rest when ever required, walk as much as you can.

I have stage four emphysema.

Hi Stone, I hope you don't mind me asking but are you on supplementary oxygen therapy?

Regards Ed


Yes Ambulitory oxygen therapy 4lpm, for exercising and walking around.

I was still working full time on 22%! Are you sure she is a specialist? I have only had to slow down since I hit 14%. Keep moving for as long as you can - it will help you live longer. :)


Yes I had 19% last count, I can walk not great lengths admittedly and I have a scooter, but I get about. When I'm out shopping I get off the scooter and have a walk around. I still do what I can in the house and I always try to cook the dinner.

When I'm ill its a different story, but I try and stay active.

Kim xx

Hi bobbyfloyd,

I am 72 yrs young I have stage IV emphysema. My FEV 1 last year 19% I can walk at a rate of +/_ 5 KPH. I do not use oxygen yet. I try to stay active most of the day doing anything that keeps me mobile. My rest SpO2 is 93 / 95 % during activity does not normally go below 90%.

Yes there are times when I have to stop but I do not dwell on it.

My motto is "Yes I have COPD but COPD does not have me".

Cheers. Dave from the LoS.

Some specialist, BobbyFloyd! You've heard from other members with your lung function. They get around plenty.. You keep right on , what you're doing. Top of the line, find a new specialist! Rubyxx 😊


I have just 15% lung capacity. I am also on 1/2-2 litres oxygen virtually 24/7/ I do manage to walk but not very far. I make myself walk around for a couple of a minutes at a time, several times a day and lift a few weights, even basic yoga ,and use a cycle base when I watch TV. Even occasionally, put the oxygen in the car and go to the library or shopping. I now have a trolley for the oxygen-much better than a normal shopping trolley. I do have a wheelchair in the car boot for hospital visits. My sisters kindly push me. I have also used a mobility scooter courtesy of the Shopmobility Scheme in town.

I guess, we just have to keep pushing ourselves and sometimes ignore the pessimism of the so called 'Specialist meds.'

Take care


Brilliant replies there bobbyfloyd so maybe find a better specialist. Good luck to you. Xxx

26% for me. I still work full time and swim around 3km a week. I walk regularly too. I think it definitely varies from person to person, some people can manage better on a low lung function than others. But I am only 45.

Although I struggle to get dressed when I have an infection.

My FEV is 21 and walking is no problem, though I do stop at short distances though I'm sure that's more because during these heated days of summer, I hibernate much the same as I do on the coldest month of winter.

In the next few days however, I hope to be able to start some pulmonary rehab classes that will help me counteract my slothfulness ...

I'm supposed to be on 3 with portable oxygen but I rarely use it..; only when I really feel the need and not just as a matter of course.

Also, just read Malinka's post above and she's spot on about following your own lead and not bothering too much with the "specialists"....

Something sounds fishy with her....there are people at pulmonary wellness with lower than that and they walk on treadmills#!

Is the 20% your FEV1 or DLCO?

thank you all for your replies, will never give in to it, i think the specialist was smoking something,

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