Severity

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I think my illness is becoming quite severe. If I even take a 10-15 minute walk to try and get exercise, as I did yesterday, I fell asleep for many hours afterwards and I have very limited energy, it just gets worse every day. Even though I my FVC is 77 and FEV1 90, I suspect things are much worse than they appear. Isn't it common that the spirometry does not always correlate with symptoms?

I will get referred to PM in a few weeks (can't get appt till then). Not sure that will help. ? Because I have almost no capacity for exercise (fall asleep or feel totally exhausted immediately afterwards) I think my lungs are just failing altogether. I sit or stay in bed most of the time. I know that is bad but I can't do much of anything. Am I at severe, likely?

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  • Posted

    I'm sure others will correct me if I'm wrong, but my understanding is that it's possible to have reasonably good figures from spirometry for lung function but to have low oxygen saturation (I think that's the right term).

    I assume you and/or your gp have ruled out other possible causes for your extreme tiredness:  eg statins;  beta blockers;  anaemia?

    Take it easy until you see the specialist and good on you for still trying to get some exercise when you're so exhausted.    I hope you get some clarity when you get to the appointment

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    • Posted

      Jude I do not take statins nor am I anemic. I keep thinking there must be some other thing going on! It is possible that my oxy sats are bad, although I get about 95-97, it occasionally goes to 93. Doc said 95 is fine.

      My primary dr (GP) is not helpful. I could ask for bloodwork. Otherwise waiting for pulmo. Thank you!

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    • Posted

      I didn't know what you meant by PR so assumed (wrongly) that you were referring to a specialist doctor:  I now see you meant Pulmonary Rehab and that's the perfect place to get answers to your questions.

       

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  • Posted

    No you cannot be at the severe stage so quickly and certainly now with levels like yours.    I think maybe something else may be going on though.  It is possible that maybe you have more than just copd healthwise or that the diagnosis is not correct.  Mind you staying in bed all day won't help at all but you know that anyway.

    Do you mean PR?  That should help you quite a bit coz they teach you exercises especially designed for those with lung problems.   There should be a respiratory trained nurse there as well who can give talks on lungs and answer any questions you and others will have.

    I think you should make an appointment with your doctor and tell him/her your symptoms and see what they suggest.  You need to be proactive and push for answers so don't be fobbed off.  

    Let us know what they say.   Bev x

     

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    • Posted

      Bev,

      I don't think it is a misdiagnosis. Yes I meant PR! I guess I say it hesitantly because just getting dressed or making a sandwich is somewhat difficult. All those ADLs to worry about. Perhaps the resp nurse can help. Thank you.

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    • Posted

      I don't mean to sound sarcastic. I really do worry about the ADL's because things are bad.
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    • Posted

      Activities of daily living.

      Dress, shower, eat, etc etc

      I can do all these but with difficulty. This is my biggest concern.

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    • Posted

      Well there must be a reason why you are getting so tired and out of breath with mild copd.  I am just in the moderate range from the mild and my symptoms are nowhere near as bad as yours.   I do get sob but can do everything as long as I do it slowly.  

      It isn't unknown to be diagnosed with copd because that is a common one especially if you are or have been a smoker,  but if your symptoms are much worse than one would expect then it might be a misdiagnosis.   If your symptoms don't improve then I still say you should ask for further investigation.  That's up to you of course.   I can only give advice based on my knowledge.   Bev x

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    • Posted

      Bev I am sure that it is COPD. I think mine is now moderate with FVC 77, perhaps it is just worsening quickly. However I do want to do PR as Jude mentions. I am hoping that may save me from these limitations. Or at least stay at same levels.

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    • Posted

      Thanks for explanation!  Until I went to rehab I thought there was something wrong with me bc I was always exhausted after a shower but found out that's very common with COPD.   It was suggested we buy terry towelling dressing gowns, wrap ourselves in them after a shower and then sit down and rest for a short while.   That sort of simple suggestion can make a huge difference.    I don't always need to do that now because my breathing technique is a lot better than back then.

      It's hard for me to separate out how much of that exhaustion back then was due to COPD and the fact that I was taking statins (that's another story which is on another forum), because fully incorporating what I learnt at rehab into daily life and going off the statins were around the same time.

      Just putting on my shoes & socks, hanging out/bringing in the washing, carrying in shopping used to be exhausting too:  now if I feel tired after I get one shoe and sock on I sit down before I do the second one - that sort of thing sounds minor but it can make a huge difference and the adjustments don't happen overnight.    With shopping, I bring in what has to go in the fridge & freezer and if I'm tired have a short rest and then bring in some more.     

      I live alone so have had to work out different ways of doing lots of things:  at first it depressed and angered me but I had to decide to focus on what I can do and not agonise about what I can't do.

      Eating has never been hard for me either!  Cooking sometimes though, in which case I make a healthy sandwich rather than a cooked meal and don't beat myself up about it.   There again, living alone means I can be totally flexible about meals.    I do have my floors vacuumed & mopped every 2 weeks through a local health service, which is a help, as dust is no good with COPD:  in fact, at one stage the house was infested with dust mites and they are REALLY bad for the lungs.

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    • Posted

      Jude, I think you have it worked out fairly well and obviously pulm rehab helped a lot., I will now have to see if I will be approved. I know that when you have trouble with ADL's you are considered more disabled. Yikes. But the rehab seems to counter the didability somewhat. This is what I will be hoping for if they approve. Harder to get in the States and expensive. Won't know for over a month.

      I like your system and being alone sure can be hard.

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    • Posted

      Oh dear, I've come across this situation far too frequently on this forum and others and am so glad I live in Australia.  Our health system is far from perfect but things like cardiac & pulmonary rehab, at least in my state of Victoria, are very low cost or even free if in financial hardship.

      At the very least, check out the internet for pursed lip breathing and other exercises for your lungs - I think from previous posts from your part of the world there's stuff on youtube which could help you if you can't get to an actual rehab group.

      Good luck and keep in mind that while COPD isn't curable it IS manageable

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