Progression or What?

Hello Everybody,

I really don't know where else to turn, so I'm hoping someone here can help.

I have severe COPD (bronchitis with asthma overlay). I have managed to reach the ripe old age of 71 - hoping to make 72!

For the past 2 months I have noticed that I'm becoming steadily weaker and more breathless and the crux came yesterday when I attempted to shower and gave up on the third attempt - too weak to stand and nearly fell.

I know I don't have to elaborate about the frustration and upset - people on this site are all too familiar with that!!!

I have recently finished a PR course at the Brompton. 2 sputum samples showed no infection, O2 levels in mid nineties, bp and pulse rate fine, temperature normal.

Have had every heart test going - nothing wrong there. No anaemia, take D3, nebulised ipratropium and salbutamol 4 times daily and other meds. Not much appetite but try to eat as well as poss and continue exercises (getting a bit difficult).

I'm at a loss and so I think are the doctors at the practice.

I have managed to get an 'urgent' appointment at the Brompton for mid-October, but that seems a long way away.

If anyone has had the same experience or has any tips, I would be so grateful. I understand that this is a progressive illness, but I seem to have gone down the tubes really quickly.

With love to you all and thank you for taking the time to read this.

Annie X

18 Replies

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  • Hi Annie,

    Im so glad your Doctor seems to have checked everything out,& I am sure you will see 72!

    That is worrying that you nearly fell in the shower,could you get a shower chair,& maybe have a rail fitted in your shower?

    Do you take ventolin or such,before doing things,as that may help you,Also what about controlled breathing,pursed lips etc,as that can be very helpful,remembering to keep those shoulders down!

    It can be very scary,especially if you're on your own,when feeling so breathless,i wonder if your lung function has worsened? Or it could just be panic,making you feel like that,but still scary of course!

    Sorry,Im not much help,but do hope things improve for you.

    Gentle hugs,Wen xx

  • Thank you Wendells.

    I do have a rail in the shower- that saved me and also a May and I will definitely get a seat.

    I do the other things, but am bad with my shoulders - they nearly hit my ears! Must remember that.

    Thanks again for your good wishes and your kindness.

    Annie x

  • Annie do you think its possible they may be looking in the wrong place. When we have lung conditions they always blame it on everything....its just a thought x

  • Thank you for replying Mandy.

    I've thought of that, but it's so difficult to get anyone to think outside of the box.

    When I get to the Brompton, I'll try again.

    Medicine is so specialised now, that it's difficult to find anyone who thinks of the whole rather than their particular 'bit'. A mixed blessing because we need specialists.

    Thanks again- it was helpful as I was thinking along those lines.

    Annie x

  • Well you cant get any better than Brompton so if they dont find anything at least your doc can start looking elsewhere......i do hope you get an answer soon its awful being in limbo x

  • That's exactly it. When you know what a problem is you can deal with it and act accordingly.

    In the meantime, just have to keep on truckin' albeit on reduced power.

    x

  • Hi Worzell, get onto Social Services they can get you a shower chair very quickly.

    Hope you are feeling better soon.

    take care

    polly xx

  • Thanks Polly and for your kind good wishes.

    Annie x

  • Wishing you well Annie and hope you can soon find a solution to your problems. You have had some good advice so far and I just wanted to send you a hug. xxx

  • Thanks Sassy

    I knew that I'd get really good advice here - I am asking the experts and hugs are worth their weight in gold!

    Annie x

  • I had a similar situation recently. Everything read normal until I checked my temperature again and it was slightly over 37.5. 37 is ok but anything over 37.5 is considered a fever. It may not be your problem but it was mine. I hope that helps.

  • Thanks Puff. I checked my temperature now and it's 36.97 - within the normal range. Also checked my sats and BP - all ok.

    I'm at a total loss as to this breathlessness at the slightest exertion and the accompanying weakness that I'm experiencing.

    I can only hope that things will improve and just keep on trucking right now.

    Thanks for taking the trouble to reply and do keep well yourself.

    Annie

  • When i had my recent bad bout in hospital the blood tests showed no infection. The first doctor said I " may " have an infection. The second said I " didn't " have an infection. The third one, a lady doctor, used her stethoscope but after she done the general area she done the peripherals. She said you do have an infection and I'll tell you where. It's bottom left at the rear right on the edge.

    She planned a course of action and within 12 hours I'd improved considerably.

    It goes to show that things are not always as they seem.

    I've never been so pleased to be diagnosed with an infection ! :)

  • That's happened to me too Puff. Except that the 3rd diagnosis was from a 2nd year Medical Student.

  • Hello Gerald,

    I was rather hoping that you would read my post.

    Would you be kind enough to have a look at my reply just now to Puff and if you feel able to comment, it would be really good to hear from you.

    Keep well in that Tasmanian winter. I can imagine it's pretty fierce.

    Annie

  • Thanks Puff. I wonder if you've put your finger on it.

    I had to postpone my discharge from PR a couple of weeks ago as I wasn't up to getting there. The respitory physio (who really knows his stuff) said sounds like an infection. I had some clarithromycin from a doctor at my practice (who didn't think I had an infection, but gave them to me as a rescue drug, should I need them).

    The physio said to take them, which I did the week before last - still no improvement.

    Rang the practice again on Thursday and they sent a rapid response doctor round. I actually knew her because she got me admitted last year when it turned out that I had avian flu, (if she hadn't, I wouldn't be here now).

    She listened to my chest but heard nothing untoward, but did persuade the GP to issue an X-ray form.

    My son picked it up on Friday and I'll get that done next week. Something may show up on that. Failing that, my own doctor who has known me for the last 20 years will be back from holiday.

    If I'm still under the weather, I'll definitely ask him to listen to the peripherals.

    Sorry to be so long winded and thanks again for troubling to respond.

    Annie

  • Hi Worzel. There are so many things that could be causing your distress. Get the x-ray in to your GP asap. Even if you have to take it in and wait to be seen. I don't know why but I keep thinking Lower Left Lobe Infection or a negative reaction to the medications you are taking. I aint a GP. BUT I know the extent of your suffering. Gerald.

  • Hi Gerald,

    I think you may well be spot on about the lower left lobe.

    It feels like that it's there where mucus accumulates and it's so hard to cough up and bl**dy exhausting.

    Here in the UK, the hospital send results directly to the GP and in my practice you then have to phone them for the outcome.

    I will do exactly as you say and hopefully get myself sorted.

    I am really, really grateful for your expertise and to Puff

    too and to everybody else for being so supportive.

    Annie

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