Advice for recent diagnosis

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I have been here before. My COPD is still mild but has worsened since last I was on here. My GP and pulmonologist are pretty laid back about the whole thing. Take your inhalers and see you in 6 months. My FEV2 is 89, FvC is 94. I don't know the 25-75 number but it brought it down to 77 fev1/FvC. So I guess it is mild but the 25-75 is significant?

I feel worse since the spirometry results 2 mo. ago. More sob but also my oxygen is 95-97 when it was 98 a few months ago so I think that affects energy level?

I generally feel ok but am wondering what else I should be doing? Exercise is something I really want and need to do but I have arthritis in my feet!! So I do it when I can. I would like to work on my upper body strength. I have had no other advice. What advice could I get to keep my condition from taking over quickly? If any?

I don't have much support due to the stigma. I have only told one close friend. I am scared and feel isolated, although I go about my life pretty well, so far.

Any thoughts much appreciated!

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  • Posted

    I should add that the pulmo said I don't really have copd but my GP says I do. I think the numbers show mild.
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    • Posted

      Who said you were a smoker? I see jude mentioned it but I didn't see where you said you smoked...did I miss something and are you a smoker?
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  • Posted

    A pulmonary rehab group would give you lots of support and also teach your breathing techniques and exercises which will slow down the advance of COPD.  The rehab group I went catered for people with all degrees fo fitness, ranging from people who couldn't walk more than a few metres without oxygen to others like me who were in the early stages.    The physio's worked out individual exercise programs for everyone.  I strongly recommend it.

    There's not much the GP and pulmonoligist can do other than check your lung function and keep your inhaler scripts up to date, but if neither of them have suggested lung rehab then they are being slack.

    By stigma, doi you mean people blaming you because you were a smoker?  If you still are, please stop, because is exacerbates the COPD and will shorten your life even further.

     

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    • Posted

      They will not do rehab until it is severe. I am going to talk to them again. By stigma, I mean that I was a smoker so that I brought it on myself. That is the way it is perceived.
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    • Posted

      I thought that was what you meant, just checking, me too:  I haven't encountered any stigma but I have had to put a lot of effort into not beating myself up about something n the past I can't change now.

      I'm surprised about the rehab, as I would've thought the earlier we go the better with copd to slow down its progression:  I'm guessing you're i the UK or the US?

       

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    • Posted

      yes that is correct the earlier the better but there new things comming out all the time and its just about excersing its about are you getting the right care and support are you on the right medication they help you with all that and they also help you to understand COPD better and how to cope
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  • Posted

    What stigma?   I have never come across this and I have told a number of people.   You are lucky to have a pulmonogist as all I see is the nurse and not even a doctor now since having a rescue pack.  My fev1 is the same as yours.  

    People live for many years with copd especially at your stage and it is very unlikely you will go from mild to severe quickly.  It generally takes many years but there are exceptions.   I don't know your age but I was diagnosed at 55 and the doctor told me not to worry about it as I would die of old age before it got seriously bad.   He actually said something else would get me first.  So unless you are planning to live to 110 don't fret too much about it!   

    I hope this reassures you a bit. x

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    • Posted

      Depends on your condition.  I have mild/moderate copd and in case of chest infections I am given a spare pack of steroids (predisilone) and antibiotics in case I can't get to see a doctor straightaway.   When I use one I re-order another on prescription.   It's common practise to do this in the UK. 

       

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    • Posted

      Thanks for the info:  here in Australia, as far as I know, this is only done for people with quite advanced COPD
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    • Posted

      Thank you. I am 58. May I ask your FVC or Fev1/FVC? Isn't 89 a pretty good number since it is not below 80? Were you smoking when you were diagnosed?

      I am in the States and there is a lot of stigma, at least where I am from. You are right, I am lucky I have a

      Pulmonologist. I hope your dr is right because I want to go from something else before it gets severe.

      May I ask a question about your oxygen level? Mine is about 96. It was 98 a few months ago. Does exercise help you? Thanks.

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    • Posted

      Hi My oxygen level drops about 6 percent usually when walking and i am only between 91 and 93 sat down walking its anything from 83 which isn't good. I am from the uk and haven't had much help or support really but since i have started this Pulmonary Rehabilitation i have felt better ok a little tired more than usual at the moment but if your not use to it then it will make you a bit tired at first b ut it will be more beneficial the more you do it. don't let this horrible disease drag you down. 

      all the best x

       

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    • Posted

      Hi does your doctor/nurse know your sats fall this low when walking?   If not then you need to tell them asap as it is possible you might need oxygen.  x

       

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