I am relatively new to bronchiectasis having only been diagnosed within the last five years.My Consultant to whom I owe a great debt: "dug" me out of the COPD community that most GP'S are inclined to put their non specific lung conditions! I have gradually acquired bits and pieces of information on the disease but I am short of undrrstanding what happens when one is colonised.Does the bug spread if it isn't controlled by antibiotics?
If an exacerbation has developed how do you know? Since sputum colour seems to represent the early warning it appears that if a long is colonised then sputum is always colored, or at least in my case is never clear.I have had to take the position that if I feel well I am and the slight cough and thickened and slightly discoloured sputum is something that cannot be cleared is this true? Or is the Holy Grail clear sputum even if continuous antibiotics either orally or IV delivered is required to produce a completely clear result?
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locheil
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Hello and welcome to the forum. I don't have bronchiectasis but we have some members who are experts due to long term diagnosis. Hopefully they will be along shortly.
mine started at the age of 3 after an attack of measles and following bronchopnuemonia (1 great thing about having a family doctor whose father brought you into this world and 3 generations looked after you you can nearly always pinpoint cataclismate events in your health) a bronchiectase is a dilation of the airwaves in the lung, it produces copius ammount of sputum a;nd yes clear is the holy grail we aim for but often fail mine when infected is dirty greenish/yellow often a sign for anti biotics but not always if you are feeling well you can often ride out flare ups but only on the doctors say so, mine gave me a load of sample pots and lab forms if I feel unwell I send a sample of and keep an eye on the surgery web site for results and what to do. The dr's giving us the right to be able to view our records online was the next best thing since sliced bread. This is my life with a bronchectasis there will be others on this great site who have theirs to share stay well breathe easy.
ye gods thank fully those two are museum exhibits now I remember well the bowl of hot water friars and towel over the head routine at least I never missed anything on tv those days we never had one but I was a begger for scaring my siblings.
Hello there locheil, here is one of the lifelong, done it all bronchs. Like Anthony I was diagnosed at 3 and I am now 67 and still giving everybody grief.
Well done your consultant for recognising that you are part of this very exclusive club. Your question should be easy to answer but it isn't. This is because bronch is very complex and all of us are different.
When the lungs are colonised with a bug it means that there is always going to be that bug there, even when the lab plates may not show it. This usually occurs in us with pseudomonas. The aim is to keep the numbers as low as possible. No, it does not spread to other parts of the body and you cannot infect anybody else. I have been colonised with pseudomonas since 1986. At present I nebulise ceftazidime daily to keep the numbers down. I have also had oral ciproxin and IV meropenem in the past.
Colonisation tends to happen the longer we have bronch. Some other bugs can be treated with the right antibiotic in a high enough dose for a long enough period by the correct delivery method and this seems to eliminate them.
I have never in my life had clear sputum and I have always produced a lot. I clear this daily, usually in the afternoons and when I am well it does not interfere with my daily life, socialising, going to the theatre etc. because it has always been part of the rhythm of my life. I don't chase the holy grail of clear sputum because for me it would mean bombarding my body with constant antibiotics.
The colour can also be due to flora and neutraphils in the mucus which are present as part of the body's immune response to the low grade infection in the lungs. Not necessarily a sign of an out of control infection.
If I am brewing an exacerbation the colour does change quite dramatically, gets thicker and much more in quantity. I feel horrible, lose my appetite and I can also have a temperature. After five years I guess that you are beginning to recognise what is normal and what is not for you.
My consultant and I have a system whereby I then start 2 weeks oral cipro which I keep at home. Apart from a pneumonia and empyema in Feb 2015 this has usually put me back to normal, even though lab tests on the sputum show that it should not. Since the pneumonia a new arrangement was made whereby If , after a week I am not getting better I can phone my consultant at the big teaching hospital in Bham and go in for IV or we now have an arrangement with my local hospital who will start the IV and let me do it at home, in cooperation with my Bham consultant.
At this point I have my fingers crossed ( as does my consultant) because I have not had an exacerbation since last December! Some people, seeing the colour and amount of mucus I produce would suggest more antibiotics but I judge it by how I feel and changes to my normal condition. I like to keep the big boys for when the bugs are really having a party.
There are other bronchs on here who have far more antibiotic therapy than me as a matter of course and obviously need it.
I hope that I have helped a bit and not just succeeded in confusing you more.
Hi. I have bronciectasis and at the moment in hos with IV antibios as I did sputum which showed pseudamonis and resistant to oral. Luckily not too ill with it, but really poorly at the beginning of the year when had IV then. Took me ages to get back to normal and now since beginning of year have oxygen too. I am 58. How do you manage to do your IV at home? have you got an IV community team in Birmingham or do you do yourself? Just interested as really want to go home. Have had a week still another week to go?
It' so true that we are all different. My oxygen levels are always 97-100 even when I have an exacerbation. The IV team attached to the QE in Bham come to the home to continue IV treatment after hospitalisation but there is no process for teaching to give home IV oneself. At Warwick they put a long line in and after they are sure that you can manage they send you home to do it yourself. Fortunately I haven't had to use either since this was set up for me. In 2015 the QE team came to my home for four weeks after I had the pneumonia and empyema and was in hospital for three weeks, twice.
I have only had to do IV once at home in 1998. I did this through a venflon, directly from a syringe. I have only had IV three times in my life. As I have very extensive bronchiectasis I am a mystery to all of my doctors.
It is very patchy throughout the country which is one of the reasons behind the BLF's current Battle to breathe campaign. The best thing is to pin your consultant down on what the procedure would be. I have no respiratory nurse or services through my GP and so my main relationship is with the consultant through her secretary.
Like you I have a fine hospital at my back but the NHS is suffering dreadfully from staffing problems and the best I can do is to respond to annual/biannual appointments with a registrar.Certainly I have a very hands off approach by my surgery who,I may say are operating out of a brick shed that has been on the upgrade list for 14 years with 5 doctors looking after north of 10,000 patients many of whom are elderly.
This is why the BLF site is so vital, one is very hard pushed to find basic answers.This is why I am so thrilled to be able to have open conversations with folk like you who have have seen the film bought the book and wear the sweat shirt as far as bronchiectasis is concerned.
When I joined the site yesterday in my wildest dreams i could not have expected the level of support I have received.i do agree that we are all different in our respon is se to thebsame complaint and apparently our variuos consultants have different ideas regarding our medication.My standby numero 1 antibiotic is Doxy cyclin and sometimes Amoxicillin depending on which bug is detected by the lab.I am not always in agreement with the lab results or put more precisely Doxy does not always work on the pnuemonia version that colonises my left lung.
There is a small group of us who are trying to build our immune system with exercise,typically treadmilling on a regular basis and attending rehab courses.The benefits have not complete removed exacerbations but the have substantially reduced in frequency.
Your reply was very much appreciated.
Locheil
I too am on a daily antibiotic this one acts (or should) act as a phrofolactic (used to try and keep the bugs down) and am also attached to an IV in the comunity team like littlepom is which is set into motion by my gp. And by the I am 66 which does mean longevity is quite often the rule with us bronch's
in reply to
yes Anthony, we longstanding bronchs seem to have at least one thing in common. We are tough so and sos
Your experience with prophylactic treatment to deal colonisation is very interesting,my Consultant ha not got around to recommending that approach yet.I think a combination of different consultants and different antiobiotics tens to underline the differences both of our response to bronch and the preferences of individual consultants.My chap has just received his professorship in respiratory medicine-he has never shown any tendency to walk on water but I am inclined not to offer comments about my treatment!!
I was started on Azithromycin 4 years ago as my one a day but many flare ups later it was change to doxycycline 100 mg now 200mg it does not reduce the flare ups I have but often or not the severity and as I mention in another post it also means dependant on how ill I am with the doctors OK I ride minor flare ups out with no further treatment.
Your experience with different antibiotics is very interesting.
Taking account of the brilliant responses I have had over the last 24 hours I have reached 3 conclusions.
A0 It was a stroke of genuis by someone in BLF to set the site up in the first place.
B) The standard of response to my request for information from members was outstanding and a source of great comfort to me.
C) While we are all different and respond differently to various clinical and medical procedures there is nevertheless a lot of common ground that leaves me wondering whether our consultants ever have a chance to talk to each other!
it is a great site I even pass on to my gp some of the things on here, as you say a pity the surgeons cannot have a pow wow now and then after all such things are big in America
That appears to be true it is evident that my Gran was a bronch though it was never diagnosed (this was after WW2,She died at 94,I am 86 and I am intending to at least draw level1
Hi locheil and welcome. Good news you have a very proactive consultant.
Littlepom has covered many of the points in her excellent post.
I am another long termer. Bronch from a baby and now 69 and still learning!
Colonisation does mean the bugs are always at home in the lovely environment of your lungs but that is not to say they always cause you problems. They will sit quietly for a while and suddenly decide to have a party. Lung clearance is the best thing you can do as it is really the most efficient way of getting rid of them from your lungs where they can no longer make mischief.
As littlepom says all bronchs are different and our signs and symptoms are sometimes similar and sometimes they will vary. Clear sputum is not the 'holy grail'. The 'holy grail' is what's normal for you. Sometimes it is glaringly obvious you have an infection. Much worse colour and puralence and amount of sputum to your norm. High temp. More breathless. Feeling generally very unwell. One of my main symptoms is foul taste. I used to be able to tell buy the taste and pattern if it was strep p, HI or moraxella, but that no longer applies - that's bronch for you.
Sometimes it is not so obvious - there may not be a change of sputum colour from your norm but you feel unwell and/or have the foul taste also. It may not sound helpful but you do learn to just know, even when the docs don't pick it up straight away, you know. It helps to get a sample in, not only to find out if the rescue ab you are using is the one the bug is sensitive to but it also gives a record to you and your medics and indeed microbiology what your usual pattern is and how frequent your infections are.
Putting this link up as it's not been up for a while and we have quite a few new lovely bronchs who may find it helpful. It is a few years old now and the European Respiratory Society are in the process of updating it, but hope you find it helpful.
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