Advanced copd

[Davyroy]

I s anyone else in my position? I have been told that I have advanced copd. I have a lung function of only 26%.

[mrsmummy]

Hello Davyroy and welcome to the forum. We have members ranging from mild to very severe and I know there are others around 26%.

[Davyroy in reply to mrsmummy]

Thanks

[Stumpy55]

Hello Davyroy, yes I have very severe Emphaseama and discovered recently that my lung function test read 13% it's the worst for me but the nurse was concerned and wants me back every three months which is a nuisance, I would rather be in my arm chair doing my sketching which I love to do. The thing to do is except what your told because worrying won't change anything Davyroy. ✋️😊

[Davyroy in reply to Stumpy55]

Thanks for your reply stumpy what do you sketch?

I paint a lot and try a bit of sculpture The sculpture is out now because of the dust. I have to be in the mood to want to paint but only on a good breathing day. I am going to make enquiries about salt therapy, I do try to do a little bit of exercise a day.

[skischool]

Davyroy lots of folk on here have very low lung functions and cope exceedingly well with everyday life,with the correct knowledge and guidance which you will gather in abundance from folk on here ,but more importantly and hopefully from your Nhs respiratory care team/consultant you should be able to fulfil a satisfying and hopefully long life,all be it within the limitations of your own ability.i presently have severe emphysema with a last recorded fev1 of 22% and live life normally and i am only dependant on ambulatory o2 for exertion and walking about.i do not use it at any other times.i hope i have managed to allay some of your fears and concerns............regards Skis and Scruffy cat x

[Davyroy in reply to skischool]

Thank you for kind response, you have made me feel so much better.When I asked my GP what my reading of 26% meant he said that soon I would have water retention in my ankles and I have only 2-3 years of life left.

[skischool in reply to Davyroy]

Davyroy,it is better that you speak to your consultant or local respiratory nurse concerning your diagnosis as they deal with lung conditions on a daily basis,,i couldn't comment on your g.p's statement as i am not aware nor wish to enquire of your full medical history.sometimes ankle swelling can be related to co-morbid heart conditions such as pulmonary hypertension but this is something you need to discuss with professional medical people............skis

[Davyroy in reply to skischool]

Thanks, take care.

[mrsmummy in reply to Davyroy]

You need a GP with more up to date knowledge! My lung function has been lower than yours for a decade.

[BSA-3 in reply to mrsmummy]

I was going to say something about his G.P.'s manner but thought better of it due to my propensity for getting into bother on the BLF, for writing before I think it through,lol. 😁

[Smilinghearts in reply to Davyroy]

You just encouraged me, your question was on Google search I did, so I joined. 2 and half years ago became disabled fev 1 18 then, exceeded how long I was thought to live. I believe what has helped me is, even winded (this helps me) I force myself to do activities of somekind. I watched my mom dad and only sibling pass from this. Thing all had in common, so many meds and zero activity. I weaned down the meds that caused long term side effects, figured will truly help when really need if don't use for maintenance. It helped was rough a few days. My skin was ripping. To much to explain. As I said, my opinion. I know what my family did (did not work) since doctoring is a science, an art so to speak. I believe doctors are awesome but they have technology that for sure explains what is wrong with us, the rest is an art, and very well educated guess. Which I am grateful for, just don't loose hope, go to appointments, if I could tell my family anything.. It would be, follow what you know about your body. That is my biggest friend. Is my self awareness. And check out credentials. A doctor is human, graduate with an A OR A D-. Just have faith in your own self. I am emotional right now so if I over do anything please forgive me. Have a blessed day

[Lmax]

I also have very low fev reading of 26% and have done for the last 10 years or so and nowadays have to use oxygen 24/7 which has helped enormously. Having such a low reading hasn't stopped me from doing most things (albeit a bit slower than I would like). I used to suffer with swollen ankles but since taking a diuretic tablet and putting my feet up when sitting down to watch telly, these are under control. I used to worry myself silly when the doctors told me about the low reading but not any more. Just keep going...

[casper99]

Hi and welcome to the forum.

Given the first hand, evidence from previous poster's, I hope you realise that your GP is an idiot.

He should try harder to keep up with the times, medically. Or else, he should keep his surmising to himself.

I would change GP. He has no empathy. xx

[Davyroy in reply to casper99]

Thank you all for the very helpful feedback and hope you are all looking forward to a fantastic spring.

[casper99 in reply to Davyroy]

I certainly am longing for spring. I don't think I have ever felt so cold as I have these last few months. xx