Sputum Samples

Chest and lungs
1

Hi all, I used to have regular sputum samples years ago and the Dr then would prescribe the correct antibiotic.  Which was fine.  I absolutely thought after years I could tell whether there was infection there or not. How wrong.  I now have pseudomonas.  Been on neb colomycin for 3 weeks and my sputum looks fine, but still harbours pseudomonas. Please please, if you have bronchiectisis have the sputum checked regularly.  It is actually stated in NHS guidelines that patients like us should have this routinely and GPs dont do it.  You wouldn't know if pseudomonas is present and it appears that the earlier you find it and start treating it then the better the outcome.  Also GPs  should give you 750mg for 14 days initially before waiting to see a specialist

 

2

Yes I have Pseudomonas for years.. My dr never asks for sputum samples when I have a flare up... I take Ciprofloxian 750mg. Last year I could not get rid of the infection.. and saw another dr and he said I should have been taking 2 antiboitics Cipro and Erthyrmycin...

I am interested to know what other people in this situation are taking in medication...

3

Hi!  Sorry you have got the dreaded pseudomonas present.  I have had it for years and years.  Ciprofloxacin used to help but it stopped working for me for a while.  I did have a go at nebulized colomycin but it made me feel so awful (I couldn't breathe and was terribly wheezy) that I no longer use it.  What seems to have happened for me is that my bronchiectasis has been masking an asthma problem and now I use Monteleukast daily it helps the asthma so I breathe better and am generaly in better health.  I get my sputum checked at the Brompton when I go and the GP will do it now and again but I manage my own chest infections and have done for years and years.  I hope you keep well and get the support you need from your GP in future. 

4

Thank you for your reply. I am on a drug trial at the moment for Pulmaquin.. which is used through a nebuliser.the drug is made up of a combination of immediate and delayed released Cipro.. and used once daily..not sure if I am on the placebo or the real thing.. but with getting this chest flare.. I wonder...

I too wonder if I get asthma..

I often feel there is not enough knowledge re this... I have had bronchiectasis nearly all my life... so I am used to it.. but sometimes it gets me down.. when I can't get onto top of it...

I take seritide 2 puffs morning and night and spiriva in the morning.. Also Ethrymycin 400mg twice a day...

Thank you once again..

5

Hi there,

I see a wonderful respiratory physician & I used to getchecked regular however I don't now simply because I can tell when I have pseudomonas

It has an awful taste about it & the sputum is thick & dark green in colar

But this works for me & my physician knows me well however it may be different for others

I do sputum tests perhaps every 5 years but not every year or whenever I am sick, the constant tests always confirm the same thing

If you aren't comfortable with your doctor, get a new one & take care of yourself

6

I usually see my specialist every year..but go into hospital if I have difficulty breathing.. and it comes back as Pseudomonas..

I do have the same symptoms as you re sputum.

How long have you had bronchiectasis...

Thank you for your reply.

7

Hello

I have had bronchiectasis since I was an infant, obtained it through an accident (long story)

I was never maintained properly until I meet my current physician 19 years ago & he's a saint

what about you? also I am in Sydney Australia

its a terrible disease & I feel for those who feel bad - it's important to stay positive as there's always someone else worse off

but it's easy to get depressed about this?

8

I developed it due to Whooping Cough as a toddler..I too am in Australia...

I often feel if I am busy and not thinking about it ... I feel a lot more positive.... yes there is always someone a lot worse off...and very easy to have negative thoughts...

I recently spent a week away in cold damp weather and wonder if that would have been bad for my lungs!

9

I don't do well in cold, damp weather & tend to avoid it if at all possible. Iive in Sydney, hibernate during the winter months & get out in the sun & air  during summer

Is the damage to your lungs at the base of them? My damage is at the top, in the area where the lungs are attached to the bronchial tubes so I cannot have an operation

Otherwise I walk 30-45 minutes per day & I visit the gym 3 times per week - have to attempt to stay as healthy as possible

10

Most of the damage is in the base..and maybe a little at the top.. They tell my my xrays haven't changed for years...and my lung function is still the same..thank goodness..

I visit the gym 4 to 5 times a week if I can...and do aqua aerobics 4 days a week during summer...I am going to start walking as well...

Really need to get onto of things.

Do you find if you overdo things your lungs get worse?

11

Ha ha yes my lungs get worse if I overdo things. So I tend to keep within my liimits but that's not always possible

My lung function now seems to remain constant although I was in hospital 18 months ago for 5 days

Otherwise I try my best to remain in consistent good health

I can't swim or do aqua aerobics so I stick to the walking & light weights - the shortness of breath restricts me a bit & I get claustrophobic if I'm in the water or a place where I cannot catch my breath

We all have our cross to bear

What part of Aust are you from?

12

I am from Qld...

Interesting that you get claustrophobic...even if I am not short of breath... to go into a lift full of people... I panic and have to get out...and catch the next one if its nearly empty..

Have you ever been on any drug trial for bronchiectasis?

13

There is no doubt that indisciminate prescribing is the main cause of pseudomonas infection/colonistation in bronchiectasis. In the 50 odd years I have suffered from this disease I have had countless courses of blindly prescribed antibiotics. Too many GPs were only to happy to throw Amoxicillin, Penicillin, Co-amoxiclav and all the rest at us without determining whether the infection was sensitive to whatever bug you had. I am shocked to read that they are still at it depsite all the copious evidence and instructions to the contrary. 

If you have bronchiectasis and you develop an acute infection, do NOT accept a prescription until a sputum culture is done and a suitable drug found. If like me, you have developed a colonisation of pseudomonas, it is probable that the infect will never be eradicated. At most it can be kept at bay and you out of hospital or at least out of long stay treatment. But bear in mind, pseudomonas is not the only infection out there waiting to infect the warm, moist soup that are the lungs of a bronch sufferer.

A lot of people don't realise that once they get to drugs such as Colomycin and Tobramycin, they are at the last chance motel, there aren't many more antibiotics out there.

I have always or almost always had to demand that a sputum culture is done because most GPs are simply not up to the job. However, when yo0u get pseudomonas, it's not going away and it is more or less pointless testing for it. That doesn't mean that testing shouldn't be done for other organisms of course.

I have read on here lately that there are still some clinicians out there who think it's acceptable to give patients a supply of antibiotics 'for emergencies'. This is blind prescribing and it will without doubt lead to serious consequences and I advise anyone who has been so prescribed to speak plainly to their GP OR specialist about it. NO ONE should take antibiotics with evidence that the organism is susceptible to the drug. The only way to find this out is by sputum culture. If you are seriously ill, you should be in hospital, not in the bathroom swallowing unspecified, powerful drugs.

There are also issues with side effects when using the 'last resort' drugs. Many if not all of them can cause ruptured tendons, thrush, bone disorders and many other serious and even life threatening conditions. Before taking any of these things, make sure you are told what side-effects are possible. Many of them have incidence rates of as high as 1 in 50! If they refuse to tell you or try to baffle you, you are NOT ins safe hands. I was prescribed a long term course of a drug called 'colobreathe' which is colomycin in a dry powder for inhalation. It was previously only licenced for treating young CF sufferers. Sad to say, I now have permanently inflammed tendons, asthma and an intractible, dry and painful cough and I am still infected with pseudomonas.

The internet is a truly wonderful thing, if you are given a drug and you have not be told ALL the facts about it, look it up and see for yourself. If you are concerned, tell your specialist and if he fobs you off, drop him and go looking for another one.

I am also quite shocked at the amount of people who are being prescribed ciprofloxacin blindly, this drug is another last resort one and must NEVER simply be handed out. It needs to be precribed at maximum dose under close supervision and ONLY if sputum cultures suggest that it is active against whateven infectio you have. NEVER, EVER accept cipro without a sputum culture or at a low dose, this will almost certainly expose you to pseudomonas. 

None of us are receiving or have been receiving proper care, brochiectasis can be treated if found at an early stage but in later life it is permanent and degenerative. Be pro-active in your dealing with doctors, don't just blindly accept what you are told. Sorry if this sounds a bit negative but I get so angry when I read some of the upsetting cases on here, so much suffering could have been and could be avoided if only doctors would see our disease for what it is and not some off-shoot of bronchitis.

 

14

To be fair supercough the facilities simply weren't available for doctors to get sputum cultures done for a long time - not in the UK anyway.  If I get a persistent infection I always get one done now of course.  However, most of my infections clear up with 10 days of either cipro or azithromycin usually sees it off.  Azithro first and if not cipro.   If they don't sort it that can be a real pain and I have had one infection that took 18 months to see off.  I am happy to keep my "current" antibiotics in the house because I can take them immediately and not have to wait to see the doctor.  Luckily these days my infections are far less frequent and I need to take them only about 3 or 4 times a year at most.   I have allergic reactions to a lot of antibiotics too which means the list I can take isn't long.  The Brompton are pretty good about sorting out exactly what I need and don't need and I can always phone them if I am in big trouble.

I find I know more about my own complaint than many GPs but that isn't surprising is it?  You don't come up against bronchiectasis every day and luckily fewer young people get it because of modern vaccination programmes.  I have dealt with this for well over 60 years and I think I am the expert on my own lungs!

I guess I just take it for granted after all this time and as long as I am not feeling really rough I just get on with life.  I am used to feeling a tad under the weather and so it is not too bad really.

15

Thanks your post is interesting.  Are you saying the pseudomonas clears up in 10 days with the cipro and azithromycin.  Is it colonozied in your lungs?  I haven't heard of anyone that has been cleared of the pseudomonas.  Do you live in London so are able to visit the Brompton Chest Hospital?? They sound very good.  You are right of course, if you go to GP they don't seem to understand the problems and same actually in A&E.  Trying to see the specialist though is a nightmare, trying to get through the waiting time scenario.  I also have had two failed hiatus hernia operations, so coughing and using the flutter isn't easy.  They are talking about removing the lower part of my left lung, but won't commit to this ridding me of the pseudomonas.  Its a scarey outlook. 

16

Thanks, I am pro active with the GPs and the Specialist, but sometimes you wonder if they think "here they come again".  I have read that Colomycin should be given with high dose Cipro, I have been given Azythromicin 3 times a week with the Colomycin.  Been on it 3 weeks now.  Been to hospital this morning, as I have aburning sensation in my chest that is so uncomfortable. Saw the sister who looked in my mouth and said it wasn't thrush and said she couldnt help.  Sitting here wondering if I should see the GP but know won't get much help there either.  I have had 2 failed hiatus hernia ops and so coughing doesn't help that, I also take meds for it and so I dont think the burning is acid.  I asked if it could be the Colomycin nebs but the sister said I should have reacted at the beginning!!!!! At the minute I am hurting.  Where on earth do you turn.  Its a dilemma.  I see the specialist on 5th Aug and finish the colomycin on the 3rd Aug, so will be 2 days without anything.  They also talked about IVs and I know in your previous post you said to ask what the common side effects are, can you give my your take on it as I don't know which IV he is suggesting.  What do you think the side effects are for IVs. 

17

OOh no it doesn't get rid of it!  It just keeps it at bay, so to speak.  I take my 10 to 14 day course (depending on whether the sputum changes back to yellowish white) and if it hasn't changed colour or, more importantly, I still feel ill, I go to the doctors, who are used to me now and we decide whether to take any more or to change. It's at this point we do the sputum culture usually. But as I said I have had this since 1952 and there weren't the antibiotics nor the sputum cultures available when I was a child.

However, touch wood, I am going through a really good patch at the moment and although the dear old pseudomonas is still there, it isn't giving me any grief - well not all the time anyway.

I go to the Brompton because I used to live in the south east and was referred there by my GP. I live in the Midlands now but I take the long train journey south twice a year because they are so good and I don't want to lose touch with them if I can help it.  When it all becomes too much I guess I will have to do that but not before.  I am lucky too in that we have a fabulous nurse practitioner at our practice who is up to date with anything to do with lungs and has helped me enormously in practical ways.

18

You know, it's bad enough have to endure the stupidity and ignorance of a GP but to have some  nurse tell you things that are patently untrue just takes the biscuit. Of course you can have sudden side-effects throughout a course of colomycin, indeed you can side effects up to a year AFTER the course has ben taken. My own tendinitis and tinitus developed 6 weeks after I stopped taking it.

The usual I/V drugs offered to us are colomycin and tobramycin (Tobi) with in some cases, gentamycin. These really ARE last resort drugs and not be taken lightly. The side effects can range from thrush right up to permanent deafness and ruptured tendons. But please just do a search for any of these drugs plus side effects.

The fact that you have had two ops for hiatus hernia points to a problem there but it could also be a thing called, tracheobronchomalacia which is a damaged windpipe cause by years of coughing and infections. I have a really bad case of it because over the years I have had at least 6 rigid bronchoscopies and countless flexible ones. Many more bronch sufferers are being seen with this condition but GPs as usual are not recognising it. Of course your 'super' nurse will never have heard of it. There is a surgical procedure for it but in your case I doubt if it would be offered because of your previous surgery in that area and in any case, it only has a 55% success rate.

I have been offered I/Vs many times but have declined so far but If I was to develop a major, life threatening infection I might think about then but the risks are rather high for a shot in the dark. My specialist told me that once your lungs are colonised with pseudomonas, it's there for keeps. It can lie dormant of it can cause major illness and it can migrate to your nose and cause dreadful bad smells. Only you can make the decision to have I/Vs and that decision has to be informed by your specialist and your own judgement.

They often call bronchiectasis an 'orphan' disease because it was thought to have died out or misdiagnosed but that is being shown to be quite wrong because the indiscriminate prescribing of powerful, broad-spectrum antibiotics has caused many, many people to develop bronch. I reckon it wil be the next health time-bomb amongst the middle-aged...we are NOT alone.

When I have had the old burning pain you describe I take a thing called, Gastrocote Liquid. It works within seconds and tastes like a nice butterscotch! Of course you may have tried this but if not, give it a whirl and it is prescribible.

19

It's good to hear that you are being pro-active about your condition because you can never rely on a GP to properly manage your illness. I am also very against this new reliance upon nurses as clinicians. It take at least 6 years to be a doctor, a nurse mere takes 3 and their courses have much less detail to them. I sometimes find the arrogance of practice nurses astonishing, they have this amazing sense of empowerment over one. I limit my interactions with them to first aid, diabetic checks and taking blood samples. Know this, every time someone like a practice nurse or pharmacist sees you, they practice gets points that go towards cash. We are being milked. GPs are paid huge sums for doing less and less, they are the ones who should be milked, not us.

Most people don't realise that many chest infections get better by themselves without antibiotics. My sputum is always green which is common with pseudomonas so it's difficult to know whether I have an exacerbation of that or new infection. I have been told that I should never take ANY antibiotic on 'spec' because it might help to make whatever bug is in there resistent to it. I remember 20 years ago when I was sent off with boxes of 3 gram !!!! sachets of Amoxil to be taken 3 times a day if I got an infection. It was an absolute certainty that pseudomonas was waiting for me. At the time, Amoxil and co-amoxiclav were very powerful drugs but nothing nearly as powerful OR as toxic as cipro. If you make a bug resistent to that, you are in deep trouble and that's the state I am in because of the stupidity of a GP. The dose wasn't high enough nor was it long enough and whilst initially the PA was sensitive to it, the poor prescribing knocked that on the head.

I have had bronch since 1957 following measles which in turn became pneumonia but it wasn't diagnosed until 1972. By that time of course my lungs were irreparable. Sputum culturing has been around since the 1900s and it was the first line diagnostic procedure for TB but few GPs saw its value in chest infections. After all, they had all these wonder-drug antibiotics that cure anything. It was rather like the fashion in the 60s and 70s for prescribing Librium and Valium to anyone who was feeling a bit 'down' or for women entering the menopause. Of course they all became addicted and it took a long time for it to make the GPs change their habits.

It is interesting that you mention that you have allergies or reactions to many antibiotics, I find myself having strange reactions to many drugs nowadays even drugs that I have been taking for ages can suddenly be intolerable. It might be an age thing but it is worrying.

If having 'emergency' antibiotics makes you feel safer, then that is up to you, I have tried to point out the pitfalls and the dangers of doing that. I have been there myself and know how much damage it can cause. Can I suggest that you have full and frank discussion with your consultant about this as he or she is best placed to know if it is appropriate for your care and treatment. We are all different but we all share this vile illness but sharing our experiences is important. I have found some of the comments here most enlightening and helpful. Please keep well.   

 

20

I am so sorry you have additional complications as well as bronchiectasis. It's a lot to put up with. 

Our nurse practitioner Sue is fantastic.  She understands the condition and has given me wise and practical advice about how to use my puffers and other information about day to day living.  I was diagnosed with bronchiectasis when I was 4 years old and I had a childhood full of hospital stays and primitive medication.  Thank heavens my parents were so diligant about physio - even on Christmas Day although I begged for a reprieve.  That's what saved me I am sure.

I've had the same consultant for 20 years. She and I understand each other.  

I get down and fed up like everyone else but not about the complaint. I don't know what its like not to have it as I started being ill aged 13 months after measles. I have never let it stop me doing what I really want although it's been a bit limiting sometimes.  Could have been worse!