long wait until i see a respiratory specialist
Posted , 6 users are following.
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!
0 likes, 26 replies
pinksnugsy judy888
Posted
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
judy888 pinksnugsy
Posted
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
Thanks so much for your help
Judy
elizabeth49611 judy888
Posted
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
judy888 elizabeth49611
Posted
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
pinksnugsy judy888
Posted
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
judy888 pinksnugsy
Posted
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
pinksnugsy judy888
Posted
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
judy888 pinksnugsy
Posted
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
debbie15945 judy888
Posted
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
judy888 debbie15945
Posted
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.
sam90709 judy888
Posted
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
judy888 sam90709
Posted
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
pinksnugsy judy888
Posted
The one drug I take is mucodyne this helps shift the stuff off my lungs.
This may also help you
Rach ☺
sam90709 judy888
Posted
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.
judy888 sam90709
Posted
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'
judy888 pinksnugsy
Posted
sam90709 judy888
Posted
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!
S
judy888 sam90709
Posted
sam90709 judy888
Posted
S