I seem to still be struggling to know when I'm infected as am tired a lot of time and lethargic anyway.
My particular questions, I'd so love to hear your opinions on are:
1. Does a stronger taste in phlegm suggest infection ( I feel it seems to with me but I don't necessarily have more phlegm or green)?
2. Can you be infected without having more phlegm ( again I feel I have been)
3. Am still confused re the sputum tests results as even it says the bacterial level is high and needs antibiotics, the GP will always ask how you feel. Have been told that is important. I'd have thought that if the sputum test is "positive" and you feel ok, you'd still need antibiotics to protect lungs ( having said that I usually don't feel well when a negative result..but some times worse than others).
4. Have had different advice from medical profession re taking antibiotics. Some say ...hit hard straight away if infection suspected....others say ..be sure of infection before taking antibiotics!
There's a lot of questions here but I'd be so grateful for any replies to any of the points. I keep aiming to reach a point where I feel more in control at managing bronchiectasis but can't seem to achieve that. Was diagnosed 3 years ago and the 1st year was ok but last 2, have a stream of infections. Aren't nebulising as was told , due to a lot of throat problems, it would aggravate it and flutter pipe hurts my ear ( have a dysfunctional eustacian tube).... but think I'm reasonably ok at physio.
Thanks for reading this and love to you all xx
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winter2013
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You have a lot of questions and I'm afraid there are no easy answers. It is rare to find a GP with any knowledge of bronchiectasis, and most of the time it seems we need to tell them how we are feeling and what we need. A lot of the sputum tests are only for routine bugs, and most of us will have taken antibiotics before we get the results, if indeed we ever do.
Could a change of taste in sputum possibly be affected by certain foods we eat, i.e. garlic? It's just a thought. Sometimes when I have an infection, I cough up less than normal.
Not taking abs unnecessarily, but taking them before things get bad is a really difficult and personal choice. In the past hour my left lung has started to ache and I'm feeling not quite right (not that I ever feel properly right!) I hate taking antibiotics as they really mess up my stomach so I will play the waiting game and hope things settle down on their own. You mention nebulising causes throats problems. Is that thrush? If so, it is easily treated with over the counter medication.
Do you see a consultant regularly? If not, ask for this to happen. If you do, perhaps he could arrange for more in depth sputum tests if you keep having infections. This happened to me, and it seems a new bug, one that is not tested for routinely, has taken up residence in my tired old lungs. Just a thought.
Thank you so much for taking time to reply at length!
Yes I agree re GPS..took 2-3 years to get diagnosed and my GP told me of for being obsessed with my lungs and said tonconcentrate on ME! Have since had an ME appointment with a physician consultant who said it was the uncintroll d bronchiectasis causing fatigue. As GP kept on getting exasperat switch me going so much, have now, for 1st time ever, changed GPS!
Re nebulsiing and threat. No it's not thrush, I get a lot of general throat irritation...maybe acid reflux which am taking medication for or a general sensitivity, but both physio and consultant said to leave nbulising for now.
Re consultant..a long story. Basically, was in cycle where was having amoxicillin 1000, prednisilone as on day 10 got this strange upper chest asthma type reaction, then due to being on prednisone for some time, infection came back with a vengeance. In desperation on holiday in Spain, phoned asthma society as breathing so bad ( usually asthma controlled). Poured out everything to nurse who said it was complicated, I wasn't being treated properly and to get referral to Royal Brompton. Have been seen at Royal Brompton, which has been very helpful eg consultant doesn't like amoxicillin, told me to use sterimar nasal spary etc...but it's such a long way from me in North Devon. So still have questions, h nice post!
Maybe the taste is peculiar to me...who knows?!
As you say, it does seem down to us to work it all out but so helpful to have hep a long way from fellow sufferers! Xx
Ps forgot to add......very interesting to hear you say that when you're infected, you cough up less phlegm! So I think you're saying you know you're infected by how you feel as oppose to more phlegm or colour of phlegm? X
Happy 2017 to you winter. Hope things improve for you. Xxxxx
Dear Winter, you have just beautifully described the 'bronchiectasis balancing act puzzle'.
There are many of us on here who have had lifelong bronch and still could not give you a definitive answer to those questions.
Of course, there are guidelines. A change in taste, colour, viscocity and the amount of daily sputum.A fever/ no fever, a general feeling of total exhaustion or queeziness.
And then- we are all different. Some of us produce copious amounts daily and are colonised with pseudomonas but stay well as long as we get it out of our lungs every day. With the occasional resort to our emergency oral antibiotics or a couple of weeks of IV if it starts having a party.
Others rarely cough up but feel rotten most of the time.
Our doctors cannot agree and most GPs pretend to have an idea but they don't
I have just spent an hour with a lovely consultant at my local hospital discussing whether to follow the advice of a colleague of my consultant at the big teaching hospital in Bham. He thinks that it would be a good idea if we followed the plan for cf s and I have I V 3 times a year to prevent pseudomonas getting out of hand. My Bham con asked the local con to set this up as the local hospital, hoping that they could possibly support me to do it at home.
I don't like the idea of antibiotics without the need but would really like local access to IV when I need it because getting it in Bham is virtually impossible for me. The local con agrees with my reticence but is going to put me in touch with the doc there who is setting up a home IV service, so that I can get IV from them when I know that it is getting out of hand.
So you see, three consultants basically disagreeing with each other and me being left to make the decision and push for what I want based on my own knowledge of my condition. Meanwhile the GP looks on and hopes they come up with something.
So, I suggest that you continue with your excellent lung clearance. An aerosure medic may be a better device than a flutter. I have a gammy ear too and I find the motor in the aerosure makes it easier to use. Make sure that you have a rescue pack of antibiotics in the right dosage and enough for two weeks. Take note of your body. Keep a little diary of all of the aspects you described. When things change you will see, especially if you feel poorly. Take your emergency meds when you think that you need them then make sure that you get your GP to replace them.
Obtain the telephone number of your consultants secretary and if you do not feel well or the abs don't work don't be afraid to call them. Use your GP to give you the treatment that your con prescribes and get them to test a sputum sample if the abs you are taking don't seem to work.
Finally, try to do some exercise every day. I know that sometimes it makes you bone weary and it is all that can be done to get from one room to another. A little walk along the road, however slow on the bad days, helps to loosen the gunk and does cheer one up a bit.
Thank you so! much for your long reply and yes it certainly has helped! Especially hearing the differences in how bronchiectasis manifests itself. I think I fall into category of not having a lot of phlegm but feeling not normal most of the time. That's why when the medical profession go on about ...are you producing more phlegm, is it green...that I don't think that necessarily all applies to me as infection sign. I do think taste is perhaps relevevant to me but again professionals say not.
Am interested to hear you mention a different device. I've got a accapello choice, is an aerosure medic different to this?
Thank you again as I'm sure many of us, like me, need people who've had the condition for years like you ( and maybe my previous reply) to guide people like me....very kind as sounds like you don't need any help back! X
Oh quite often there are things that I need to ask the others. Sometimes your face can be so closely pressed to the glass that you can't see but somebody else will have a clear view.
As taste is one of the things which you notice, it is probably relevant to you. So stick to your guns. The experts aren't actually the experts because hard as they try they are dealing with a slippery customer which changes its colours all the time.
COPD has its funny ways but from what I have learned from the folks on here it seems to follow a more regular path with predictable outcomes than bronchiectasis.
An aerosure medic is different to an acapella device in that it has a motor. This means that it is the machine which creates the resistance for you to blow against, not a magnet or a piece of plastic which flutters when you blow. It has two speeds. I like the faster one. It is quite expensive but I wouldn't be without it as the mechanical devices just wear me out without producing much. Flutter and acapella devices can be supplied by the NHS I believe. There are quite a few people on here who do very well with the flutter/acapella devices. Unfortunately you aren't going to know if the aerosure suits you until you try it I used to balk at buying such things and nebulisers myself but then I thought that I buy makeup and pay for theatre seats, I should really spend my money on buying the best thing for my health and which the NHS to date, cannot afford to give us.
Ps may I ask how long you've had it? Imagine you're female? from make up comment? No need to answer if you don't want to...just curious as it seems to be mainly women, especially slightly older who are affected! Xx
I started getting pneumonias at about one year old. Yes I am female. I was diagnosed by bronchogram at the age of three in 1953 which left me with a lifelong hatred of hospitals. I never had whooping cough, I'm not A1A antitrypsin deficient. So I am one of the 30% for whom there is no known cause. However I read something about the first diptheria injection being floated in a substance ( alluminium I think) which caused pneumonias and lung damage. By the time my sister had the jab they had changed the substance. This is interesting because there are quite a few lifelong bronchs about my age but medics have blithely put it down to whooping cough damage. I told my consultant my diptheria jab idea, expecting her to laugh. 'I'm not laughing' she said. 'successive governments have known that this happened but haven't wanted anybody to know. They were working on the premise that all of the affected children would eventually die'. So there's a good one for you.
There is a member on here who has conspiracy theories about several things and I am thinking that there could be sense in them!
Oh poor you that's horrid having had it all your life....yet at the same time very encouraging for someone like me (female age 62, diagnosed 3 years ago but had it for at least 2-3 years before that), to know that you still sound so upbeat after all this time!
For a good 20 or more years before I was diagnosed, I used to get what I called a recurring virus with unexplained symptons other than I had th same really ill feeling for ...say about 3 weeks, like a toxin had been injected into me. Never got to the bottom of it......until....possibly afew weeks ago. The GP who was most unsympathetic to bronchiectasis, told me to ignore my lungs, I was obsessed with them and instead should concentrate on my ME ( she diagnosed this due to the fatigue)..referred me to the ME service. I finally got the appointment months later, by which time a new consultant had said fatigue wasn't ME but due to uncontrolled bronchiectasis. Anyway I decided to go to appointment, just to totally rule out ME.
Glad I did as saw a consultant physician who seemed very knowledgeable generally. He said the recurring virus was probably a bacterial infection low down in lungs which wasn't manifesting itself for me to know.
If that's the case, it was almost "music to my ears" when I think about how many times over the years I had this mysterious illness which gave impression to everyone, I was either anxious or exaggerating how it made me feel! Of course, will never know and haven't since seen a respiratory consultant to ask.....although imagine the respons would be a shrug!
So following on from our previous chat, maybe I feel ill quite easily if there's any bacterial infection in my lungs?
What an unsolved mystery it all is.
Again thanks so much for replying...,it's so so helpful to,chat to someone who has it and with the knowledge.
sorry to say that you have probably been struggling along with low level bronch for years and that as you thought, those 'viral' infections were really the bacterial exacerbations of bronchiectasis. It is possible to live with untreated exacerbations because they ebb and flow. Until the bad one comes along and it's oh what hapoened there!
So many people have the same experience as you. down to the ignorance of the front line medics. GPs! They are beginning to look for it now though.What a dork to put your fatigue down to ME!
I hope that you had your bronch diagnosis from a consultant who will tell your GP how to treat you.
I suppose that in some ways I was lucky. My lung damage was so extensive that I got an early diagnosis and keeping on top of the boggart within is all that I have ever known. I have lived a very full life. Lived in various places around the world, brought up two children etc etc. Sometimes I get a bit peeved because my very grown up kids leave me to do things for myself when they fuss over their parents in law at the slightest thing. I should be pleased because They grew up not considering that they have an invalid or sick Mother. Just a bad tempered one!
Now you know your enemy you can get on top of it and hopefully life will become a little brighter. Use the medics to get the treatment and antibiotics that you need and use us for support, ideas and a lot of laughs.
Oh again thank you so so so much for your wonderfully supportive, informative and helpful reply....again. Can't tell you what it means to chat to you! Xxx
Should've also said what an inspiration you are having done so much with the condition. I have 2 grown up daughters and grandchildren and whilst they are sympathetic, no one really knows all the physio etc as they don't see it, plus I'm very good at acting when we get together...so they don't realise how I really feel. If I say ..it seems like you're moaning. Suppose biggest sadness is that just don't have energy for grandchildren and as they live away, it always involves seeing them for longer periods. Anyway no need to reply back as you've given me lots of time. Have a great 2017! Xxx
Oh the joys and madness of bronchiectasis! It is called bronch for short as it is rather like a 'bucking bronco'. What works for you once sometimes never repeats that success, the signs of an exacerbation coming on vary so it is really difficult to know you should take action or to wait. People who have the condition vary greatly in its impact on them and in what works for them. Being tired is almost a given. My consultant explained that just breathing takes more energy so your supply is less than other people. Doing the breathing exercises, trying to keep active take time and energy too. So it is no wonder that we can feel lethargic. However, the usual advice is worth taking - eat well, keep the lungs clear, try to keep moving, keep away from known triggers. As time goes by you will become more aware of the subtle changes that indicate the you do need the meds. My GP surgery are great and will see me at short notice to listen to my chest and then suggest the best course of action if I am uncertain.
Hi Winter, you've had such brilliant replies, there's nothing left for me to add. But I'll just mention that for me ( long-term Bronch as well), taste is definitely an issue and when the taste is bad, it's always a nasty infection.
Thank you billie jean, that's so helpful to know that taste is an issue as I mentioned......it never says as a main sign of infection and medical profession don't seem too bothered about it.
Yes I've had brilliant replies....feel so lucky that you've all taken the time to reply. Hopefully I'll get " better at it all" and some point so can offer advice to others...that would be great! All the best for 2017! Xx
You are right winter taste can be a sure sign of infection and I cannot recall it being mentioned in any info for bronchiectasis. Hopefully it will be mentioned in the ERS patient information which is presently being put together. I mentiined in my feedback that it should perhaps be listed as I know many folks with BE for whom taste is a sign of infection, including myself.
For a long time I could tell from the different tastes, along with the way an infection presented whether I had HI or strep p but as bronch is sometimes very unpredictable and changes it's pattern, I can no longer do this, although a nasty taste is still a guaranteed sign of infection for me.
You know your own body hun. Trust your instricts and be your own advocate.
Wow that's "music to my ears" to read that!!! So good to know someone else...and sounds like you've had it for sometime and are an expert....for who taste is an indicator... phew! Thank you for taking time to reply and hope 2017 is a good year for you . Love winter xxxx
Whist it is true I have had BE for some time, luckily since the start of the NHS i.e. 1948, I am by no means an expert winter. I learn stuff all the time about BE, much of it from my bronchie friends both here and on Bronchiectasis R Us. I am also learning from my small involvement with ELF and understanding how researchers work towards the same core set outcomes. I can honestly say we are very lucky now to have the internet (reputable sites only) as so many of us 'old time bronchs' have learned so much from muddling through for many years.
We all need advise and support from time to time no matter the length of time we have had BE. I know I do and can always rely on advice and support from my bronchi brothers and sisters.
Thank you for your good wishes and I hope 2017 is a good year for you too.
Just reread your post and don't know if this applies to you... but normally I have a specific infected taste abit like old meat ( yuk as am vegetarian), anyway this time it started out as a mushroom taste for afew days ( then got a croaky voice virus and temperature) now has gone to "old meat " taste. Am waiting for sputum result. Please don't feel obliged to reply as it's abit vague what have said and am thrilled with your previous comment xx
I can't describe what the taste is like as well as you do. I can only say it's foul and it's going nowhere until I start treatment. I would add I don't always get foul taste when I have an infection but when I do, I know it means trouble.
I always find if I have a virus affecting my lungs, I will invariably get a secondary bacterial infection.
Hope you get some answers and treatment when your results come through.
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