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

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  • Hi

    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

  • Hi

    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. :)

  • Evening.

    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 😊

  • Hi

    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

    Malinka

  • 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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