long wait until i see a respiratory specialist

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Hi, I'm wondering if anyone has any advice. Ive had a CT scan showing bronchiectasis & MAC infection. However I have to wait 7 months until I can get an appointment with a respiratory specialist (I live in Australia)....I cough a lot and am getting slowly healthier after having bronchitis. I'm 64, ex smoker.....how to stay 'healthy' meanwhile ? Thanks!

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  • Posted

    Hi there

    7 months seems a very long time to wait. Can you pay privately? Anyway my advice is try an do a bit of exercise everyday. Swimming/walking/cycling are all good. (I'm not sure what MAC infection is though?)

    Living in a sunny climate helps to. I live in the UK an winter time is a nightmare for me.

    Hope this helps

    Rachel

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    • Posted

      Hi Rachel

      yes, it's a LONG time. And I was also told I have to pay anyway / no bulk billing or pension discount, which was another surprise.

      Yes, the climate here is a plus ( sub tropical) and I've seen a physiotherapist who's got me walking, etc, and it helps a lot. I first saw him because my lower back was so painful after a month curling up on the couch with bronchitus.

      MAC infection is Mycobacterium Avium complex, apparently an infection that often affects those with compromised immune systems who have other lung issues

      (I used to avoid googling health issues - now I have no real option smile

      Thanks so much for your help

      Judy

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  • Posted

    I live in the states and also have bronchiectasis, and 7 months is too long to wait.  But if you can't get in any sooner:

    Stay away from people who are sick (may even want to wear a mask when going out). Stay away from poluted areas.

    Eat healthy, exercise if you can, even if it's a walk around your house.

    Do you have a nebulizer? Or inhaler?

    Go on the web and find out ways to clear your lungs, by posturing (laying in certain postions to help clear the lungs by way of using gravity).

    Try to keep active, it helps exercise the lungs and keeps the mucus moving in order to cough up.

    Hope this helps. This website is a great resource.

    Beth

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    • Posted

      Thanks so much for your help Beth . .  at last I'm 'on the move' and it's really helping. Also eating healthier, which was hard at first with no appetite.

      I have no inhaler or nebuliser - I'll research them... thankfully my breathing is ok at present.

      I'm drinking a lot of water and walking as much as possible. Often exersize induces coughing but I guess that's a good thing

      What did people do before the internet  .....

      cheers

      Judy

       

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  • Posted

    I have an acapella which is great for clearing your lungs of mucus. You can give yrself a bit of physio in the comfort of yr own home.

    My main problem is pseudomonus once that enters your lungs it rarely clears so be careful near stagnant water (flowers that have been in the same water for a few days) jacuzzi's, soil plus swimming pools poorly treated can contain the pseudomonus bug. Read up on it and avoid at all costs. My health has deterioted since I got it and now I can't get rid of it. Please take care of yourself. Xx

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    • Posted

      I'll read up on pseudomonus - thanks for your info....no shortage of stagnant water hereabouts.

      Yes, I realised that these lung infections are basically incurable. I just don't want to deteriorate too quickly - or get bronchitus, pneumonia etc again.

      I'll also look into the acapella you mentioned.

      Thankyou  biggrin

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    • Posted

      Judy

       

      I have had bronchiectasis since i was a little girl so its been years

      of infections, Im sure you will be fine for a long time as long as you 

      take care of yourself. I have never smoked but im sure years of being 

      in the company of passive smokers haven't helped (no one new back in the day how harmful smoking was)!! 

      This is the first time I have joined a forum just to see if anyone from other parts of the world have any ideas/advice and it makes you feel like your not alone!!

      Keep me posted

      Rachel xx

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    • Posted

      Rachel, thankyou for your reassuring message.... most of my life I have been very fortunate with my health, so much so that I  (obviously) took it for granted.

      These days it is quite hard to believe how smoking was once allowed everywhere, from on all public transport to enclosed workplaces and movie theatres. I hated it  - during the times I didn't smoke!

      Entering the internet world of not - so - good  health has been quite an insight. So many people coping with so much pain.

      I've never joined a forum before, either.

      best wishes

      Judy

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  • Posted

    Hy judy

    Where abouts i n Australia do you live

    I live in Australia in Victoria and i got in to see a respiratory specialist within weeks

    What is a mac infection

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    • Posted

      Hi Debbie, thanks for your reply...I live in Northern NSW and will have to go to the Gold coast to see a specialist.

      Apparently there are a shortage of respiratory docs (!?) 

      MAC infection is Mycobacterium Avium complex, sometimes caused by not coughing up all the gunk efficiently....there are other causes.

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  • Posted

    Hi Judy

    The basic rule of thumb with bronchiectasis ...

    1. Clear out the gunk - it acts as a breeding ground for more infections. Like said above, exercise it's good, but also read up on other methods: physio, various devices, active cycle of breathing etc.

    2./You will get another infection ... c'est la vie. Golden rule, be proactive.

    Get yourself tested to find out what bug you have, start emergency antibiotic treatment fast (what antibiotic depends upon your frequent flyers), change antibiotic depending upon results of test. The rule of thumb for getting a test: 10-20% drop in peak flow; increased production: worsening colour of sputum; bad taste in mouth from sputum; malaise; temperature; significantly more tired. Get 3 of those and off to quack. Your own experience will allow you to know when there's something there and which of those symptoms are important.

    MAC - me too. This is a funny one, it's totally endemic so everyone is exposed to it all the time but yes, sometimes if you've a ropey immune system or something else wrong with your lungs, it can stick around.

    So the question is whether it's just roosting in your lungs not doing very much, or whether it's active. I assume it isn't active because otherwise you would be on the TB treatment schedule? In me it's just roosting at the moment and the advice is *shrug* we'll keep an eye on it and let's hope it doesn't go active. 

    Cheers

    Sam

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    • Posted

      Thanks Sam for such a succinct answer. You've clarified things for me.

      Interesting what you said about the MAC infection. I've yet to have this confirmed by a specialist - it came up on the scan. I'm seeing another general practitioner tomorrow for feedback on the ridiculously long wait to see a specialist etc.

      Yes - I'm realising the need to be proactive! Motivating myself to exercise as I cough is....interesting.

      Much appreciated

      Judy

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    • Posted

      Hi Judy

      The one drug I take is mucodyne this helps shift the stuff off my lungs.

      This may also help you

      Rach ☺

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    • Posted

      Well yes, I hear you about the exercise when coughing!

      What I would say though is it can be a very positive experience. So for instance, I did the charity London to Brighton bike ride earlier this year. The first few hills had me coughing and sputtering my way up them, but that meant that when I came to the big and very steep hill at  the end (Ditchling Beacon) I went up it no trouble at all- the previous hills had cleared out all the gunk. 

      Whether by physio, flutter  device, active cycle of breathing or exercise, you really will feel the difference if you clear your lungs out!

      Good luck and clear lungs!

      S

      PS meant to say in previous post, if you think you've got an infection you should wait a few days before testing. A viral infection will usually burn out within say 3-5 days. So be ready to pull the trigger on the test and the anti biotics but give it a few days first.

      I don't know about everyone else, but a viral infection and a bacterial infection usually "feel" different to  me.

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    • Posted

      You sound like a very positive person Sam ! It's very encouraging...i must break through the coughing barrier!

      I'm fortunate enough to live on a rural property ( in Australia) not far from endless beaches so I have no excuse not to exercise.

      ( hurt my back with bronchitis coughing fits, curled up on the couch sick for a month, cough wouldn't stop, hence xrays, scans, physio and this new world of 'health issues' smile

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    • Posted

      Thanks for the info Rachel. If only I could just go to a shop and buy the drugs I need and bypass doctors altogether !
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    • Posted

      I hear you Judy, really I do. Just bear in  mind, clear the gunk => feeling better and not giving the little buggers a place to grow.

      And if I was being very honest, I don't feel particularly positive most of the time especially when I've a new infection, but with 4 small children and a new house (think large mortgage) frankly I can't afford not to have what my father would call a PMA (positive mental attitude)- an  expression he got from the navy.

      Good luck m'dear - and I would also say that bar interpreting results and things very medical like and so forth, the collective wisdom here goes a very long way.

      Chin up! biggrin

      S

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    • Posted

      Hello, I can't recall if I replied to your nice reply, as I haven't checked in here for a while. It's much appreciated and to think that you have all those little people depending on you, and a mortgage....!! I love the PMA. Don't know that my dear old dad knew much about that concept ! wink but I will be using that term from now on with my grandkids. Best Wishes
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