Bronchiectasis flare ups

[Blue58]

Anyone else out there who cannot tolerate oral antibiotics or inhaled antibiotics. If so, how do you manage your condition when sputum turns green which I was told indicates infection. I have IV antibiotics but also told too dangerous for me to have at home due to other conditions. Feel like I'm deteriorating and feel ill most of the time but not able to have rescue pack at home. Of course with covid I'm struggling to get hospital treatment. Anyone else in this situation.

[BreatheasyBe]

So sorry to hear of your struggles. Every now and then pre covid I was taken in for iv antibiotics I’ve been doing well so only needed 1 course of oral antibiotics. Can your gp surgery arrange for a community nurse to administer the iv’s?

[Blue58 in reply to BreatheasyBe]

Sadly not. Been told by consultant that not suitable for home treatment due to vulnerability and seriousness of other respiratory conditions which has left me wondering if there are others who find themselves in a similar situation. Surely I can't be the only one. Never had a problem with receiving treatment in hospital which has been practiced for many years but now find that it's a battle to get treatment due to lack of hospital beds (covid) and the fact that everyone is being pushed into receiving care at home.

[Patk1 in reply to Blue58]

Ru able to contact yr usual ward or respiratory team?

[Blue58 in reply to Patk1]

Unfortunately don't have respiratory team. Consultants rotate all the time so you have to deal with whoever is on duty at any given time. It's not like it used to be when you had one dedicated Consultant and his team who got to know you and knew what worked for you and what didn't.

[Hidden in reply to Blue58]

If your consultant is refusing to explore means for you to do IV at home, which I find very strange, they should be arranging for you to have it in hospital, not just throwing you under the bus. They are neglecting their duty of care towards you. If you need IV you need it and covid is not an excuse for denying to you. You need to get hold of their secretary and explain that you are deteriorating rapidly and request (insist) that they ask the consultant what they intend to do about it. If you can tolerate IV in hospital you can tolerate it at home. I'm sure that you are just as capable as others of us of administering it yourself once you are taught. I'm afraid that too many consultants cannot be bothered to find out how this is available in their area.

[Blue58 in reply to Hidden]

Thanks Littlepom. Always good advice as usual but I think I am a little unique. I can deteriorate rapidly when IV's are started and have hit serious breathing problems hence why I have been told by many over the years that I wouldn't be considered for I V treatment at home. I was always taught though that if you are bringing up green sputum then it should be treated as infection and therefore just wondered if others started a rescue pack of antibiotics when this happens or do you wait until sputum produces positive results. I've learnt over the years to recognise the signs of an infection brewing but unless I have a positive blood/sputum result I'm told that is not true. What are your thoughts as I'm confused with it all and don't know when to seek help anymore. Just sick of living poorly all the time.

[Hidden in reply to Blue58]

We with bronch know when we have an exacerbation and most certainly, a change in colour, texture, taste and smell can indicate this. Alongside feeling rotten.Lab tests can be notoriously unreliable, often showing nothing and blood tests will only tell that inflammation markers are up.You are rather confusing because you say that you cannot tolerate oral antibiotics or nebulised antibiotics. So this rules out taking any rescue antibiotics and leaves your only option as IV. Really your consultant should be doing something about it.

[Blue58 in reply to Hidden]

Spent many years under the care of a London specialist hospital. Had numerous tests in which they decided oral antibiotics were not helping with other conditions and therefore stated my only option was IV. Tried the inhaled ones under their care and immediately hit problems with my asthma do they aborted that too. Wish I hadn't have left their care as they warned me about many general consultants relying too heavily on blood/sputum results and missing other symptoms.

[Patk1 in reply to Blue58]

If sputums looking infected,i start rescue pack .u will know,if its eft it escalates and causes more problems,for longer.i often put specimen in but v often clear,like many others.the path labs these days dont give it long enough to cultivate bugs imo .id ring 111 to see a dr or go a+e

[Babyboy12 in reply to Blue58]

And blue my Dr always give me antibiotics before I sent In a sputum and if comes back different than they treat it for that as I was told not to wait as our infections can get worse. If you getting green or blood like I do than that's when I phone our doctors and they give me two weeks of antibiotics as one week will not get rid of it. And I phone your doctors back. All the best

[Hidden]

You need a good specialist bronch consultant and it certainly doesn't sound as though you have one. Look on the internet, find one at a big hospital near to you and insist on a referral. Whoever is telling you that you need positive bloid/sputum tests when you are obviously having an exacerbation doesn't know what they are talking about. I'm afraid that we have to be pro active in ourcown interests and vociferous in sourcing the right treatment.

[Blue58 in reply to Hidden]

Can you be under a bronch specialist and still treated at a local hospital. Trust me I am certainly vociferous as I try to constantly fight my corner but I am then labelled as argumentative and aggressive when in actual fact it is sheer frustration at the lack if knowledge a general respiratory consultant has if the condition. I'm constantly finding that I know more about my condition and what works for me than the Doctors treating me and its infuriating when they total ignore what you are saying or the symptoms you are presenting with and it's all down to what blood tests or sputum tests tell them. The stethoscope seems to have gone out of fashion.

[cofdrop-UK]

Hi Blue, i really feel your pain. It is incredibly difficult when you cannot tolerate oral or inhaled abs. I can only tolerate Doxy and Co-amox but that is not of use for pseudo, which I am colonised with. I cannot tolerate either Azith or indeed any other of the macrolides, either oral or nebbed. So i truly empathise with you and know the feeling of options being very limited.

I am lucky though in that all four consultants within our team are all very proactive and go out of their way to work out the best treatment plan and best practice for us. I am lucky enough to be able to do my own IVs. I have a friend, not with my team, who is also not allowed to do IVs at home due to epilepsy.

I wonder what your con’s reasoning is for not allowing you to have the community come in to do your IVs. It is good to be able to do this stuff at home but the problem still remains how to stay well between IVs.

I don’t understand if you are deteriorating why your con cannot admit you. I was admitted last May and because of the wonderful success for many cf patients of Trikafta, there was room for me on the cf ward. Everyone is covid tested frequently ,staff and patients.

I feel they should know how unwell you feel and what plan they have in mind for you.

Good look and please let us know how you get on.

Love cx

[Blue58 in reply to cofdrop-UK]

I am constantly being sent in hospital by my GP but without positive blood/sputum test I am told they cannot give antibiotics although I know when I've got an infection because of all the other symptoms. I can't go to a hospital with a bronch specialist as I am admitted by emergency ambulance more often than not and they are reluctant to take me to a specialist hospital when there is another hospital closer albeit with only general respiratory consultants who I feel do not understand bronchiectasis.

[cofdrop-UK in reply to Blue58]

Being taken to a local hospital with an unplanned admission by ambulance is the norm. You are being short changed and it makes me cross on your behalf.

Please take note of LPs comments about finding a respiratory con with a special interest in cf/PCD /bronchiectasis. Contact them but don’t slag off your present con. Best just to say you note they specialise in your condition and would they consider accepting you under their care. If yes then as you’ve already been accepted your GP should refer. If you have a problem finding a con the just let us know of a city you have access to and I am sure someone here may be able to help.

Samples are helpful but quite often they are just a guide. How you feel, look and all the other stuff you mentioned - you just know.

With regard to sputum colour If a person normally coughs up white, then green would be a guide. However I think it is more realistic to say if the colour has changed from your normal is what matters, as for many of us yellow/green is our normal but there is still a change, sometimes it’s glaringly obvious and sometimes subtle but we know.

Please get yourself a plan with a good specialist and your QOL should improve. Less stress alone should make you feel better.

Good luck

C❣️

[Hidden in reply to cofdrop-UK]

Oh so well said!

[Blue58 in reply to cofdrop-UK]

I have been shouting from the rooftops for the last 5 years that blood tests and sputum samples are useful tools but should never be used as a diagnostic. This was taught to me by the experts at the Royal Brompton and Birmingham Heartlands. My usual sputum is white so when it starts to turn green that has always been an indicator for me that I have a chest infection brewing. This is always accompanied with much more severe and dangerous asthma attacks which I manage to keep under control when I am well and therefore an increased need for nebulisation is also a sign for me that an infection is on its way but I am finding more and more that these other symptoms are irrelevant if the bloods/sputum do not show a result. I think it is important to be able to get a sample of sputum from the base of the lungs in order to get a positive result. This was always achieved when I used to have proper chest physio under the care of Heartlands but sadly it is not a service my current hospital provides.

[BionicLady]

I really feel for you. It is frustrating and upsetting enough when one is unwell with Bronch flare up!

Using Covid as an excuse is a cop out! They are neglecting you and could lead you to being hospitalised anyway!

I am also allergic to so many antibiotics, including several that eradicate pseudo which I have at moment and in past, the two I can tolerate is Doxy and Co_Amoxiclav, the latter being my rescue pack.

I do send off lab sample when unwell but do not hesitate starting rescue pack as usually by that time, I am quite unwell and bringing up green sputum as well as many other symptoms such as the horrid taste, chest pain, fever, completely off my food, the list goes on and on!

I think your GP needs to refer you to local hospital that has respiratory team as matter of urgency.

I do hope you get the help you need ASAP, I really do feel for you. Keep in touch and let us know how you are. Tc 💐

[Blue58 in reply to BionicLady]

Thank you. I am so glad you mentioned all the other symptoms as well as these are all the symptoms I Identify with in respect of an infection but unless you get a positive result by bloods/sputum I am constantly told they cannot justify giving antibiotics but I think each and everyone of us know when we have an infection. What happened to Doctors being Doctors and diagnosing based on physical examination and listening to the patient rather than relying on unreliable tests as diagnostics.

[Hellodolly]

Hi thereSo sorry about what you are going through.

Do you have a letter from any respiratory consultant stating that you must be started on treatment 48 hours after symptoms start? I have a few of those and you can then wave it at any hospital you land in.

Please do ask for something in writing which you can keep on you. So few medics understand bronch/scarred lungs etc , not to mention immune issues. Could you email the respiratory team and ask for a letter? My respiratory consultant is obsessed with starting a rescue pack as soon as possible to avoid further scarring.

Good luck !

[Blue58 in reply to Hellodolly]

What would you class as symptoms. I am constantly presenting myself with all the usual symptoms such as horrible taste, chest pains, loss of appetite, increased asthma attacks, green sputum, the list goes on but still no treatment unless a positive blood test/sputum test. I've been told it's the government's fault as they can no longer prescribe antibiotics without a positive test result despite all the other symptoms that we are all well aware of.

[Bkin in reply to Blue58]

I would go along with what Hellodolly is suggesting, in order to act on the situation of concern. Also check with nurses on BLF helpline for their advice concerning your situation.

Hope you get some positive help very soon and things will be better managed to result in you feeling so much better.

Very best wishes

[Hellodolly]

Hi thereWell the respiratory consultant I see says that ‘48 hrs of yellow /green phlegm is enough to warrant antibiotic use’. As I said, if you have that written in a letter from a chest hospital, all others like GPs or other hospitals should comply.

[Patk1]

Take a look and see if theres a home respiratory service in yr area.if u r unwell at present,dont wait till tuesday .it is frustrating.you r going to have to get consultant to agree a plan for when yr unwell - incl for weekends+bank hols,giving u im + out of hours vontact details.bronchiectasis is hard enough to manage whn we have rescue packs.u having to sit at home,waiting,will further damage yr lungs

[Hidden]

You need to get away from the local hospital who are obviously useless.In answer to your last question. Once you come under the care of a good specialist bronch consultant you will not need them. The bronch consultant will organise your treatment from the hospital where they are based. They will assess properly if you are suitable for home IVs and arrange for the nearest OPAT team to you to supervise it. If they think that is not safe they will arrange to admit you to their hospital. They will also instruct your GP in whatever treatment they think that you should have, given your other problems. All of this nonsense about blood and sputum tests and what symptoms we should have before starting treatment is a waste of time and quite frankly dangerous.

I live ten minutes from my local hospital and 22 miles from the QE in Bham where I have been treated by two bronch specialists ( the first taught the second) since 1982. I would crawl on my knees to Birmingham rather than trust myself to the respiratory team at my local hospital. I have had two experiences of them in the last year. In nov I had a haemorrhage due to a heart drug. I was blue lighted there and they had no idea what to do. Luckily the bleeding self limited and I insisted that they speak to my bham con for advice. She told them to get their opat team to give me IV to protect me and I went home.

In June the surgeon placing a pacemaker at my local hospital gave me a pneumothorax and nearly killed me because he did not act on it quickly enough and my other very damaged lung couldn’t cope.

The cardiologist was sensible enough to contact my bham con for advice and she told them what treatment to give me. Meanwhile the head of the local respiratory department tried to tell me whilst I was gravely ill ‘bronchiectasis is a disease of the airways, what makes you think you have lung damage? ‘ Good grief! This man is head of the department and patients without our knowledge trust him!

After speaking to me a lovely resp registrar told me that he had learned more about bronch from me in a week than in the two days at med school. TWO DAYS and his boss denies that there is lung tissue damage in bronch!!

Bronchiectasis is not a matter for amateur local hospitals, neither is it a matter for time wasting discussion which gets you nowhere.

Find your specialist and start being treated properly.

[Babyboy12]

Hello I myself as this is the fourth week now I am on antibiotics as I keep getting chest infections for over 20 years my doctor throught I had. Asthma and as I was getting chest infections and coughs all the time she said could be copd I said I never smoked in my life but still was getting them and she sent me to hospital and the nice Dr I saw at heartlands hospital said you might had Asthma but I think it's bronchiectasis they way I can hear your lungs cracking and I had two ct scan and showed up it was bronchiectasis but since finding out last her I had over 20 chest infections and its getting me down in am on 3 inhalers and I do not thing they work good still get out of breath walking up and down the stairs and even if I was for 5 minutes have to keep stopping. They do not know how I got bronchiectasis but it could be from having all the chest infections and coughs. I do know how you feel I Hope you get it sorted as not nice feeling being ill all the time. I never smoked but could be by passing smoking

[Hidden in reply to Babyboy12]

The bronchiectasis consultants at Heartlands have a very good name. They also collaborate with the consultants at the QE. Heartlands hospital coordinates all of the opat teams in the west mids for home IVs. You should not be suffering these repeated infections. Get your GP to refer you asap to one of the bronch consultants at Heartlands or the QE. Once you are under them your treatment and management should get you on to an even keel.

My contact for treatment is always with my consultant, her secretary or the bronch nurse at the QE. My GP just gives me my emergency antibiotic packs and inhalers. GPs are way out of their depth with bronch and once advised by a good specialist really do appreciate it.

Asthma can lead to bronch and bronch is often misdiagnosed as asthma for years before being properly recognised. I have had bronch since I was diagnosed at 3 in 1953. I never had whooping cough or measles but did have lots of pneumonias with no apparant cause. So I am one of the one third of bronchs who have no known cause.

You are lucky. You are near to two centres of excellence for bronch so insist that your GP refers you to the right specialist now.

[Babyboy12 in reply to Hidden]

Thank you for lovely message I will phone my drs in the week. Yes it does get you down haveing bronchiectasis no one understands what you going through they thing just a infection. I thing I had my for years and only found out last year. I just went to shops and even wearing the mask I car't breath. I had my two jabs but after I had my 1st one in January I got covid after two weeks and I thing by haveing that as damaged my lungs more.

[Blue58 in reply to Hidden]

Following the Royal Brompton I was under Heartlands until 7 years ago and they were fantastic with me. It was the experts at Heartlands who wrote to my then hospital to inform them that I should not be considered for IV treatment at home. I had a brilliant care plan devised by Heartlands which my then local hospital followed and which allowed me to have a full life. Sadly I then moved 200 miles away. At first it was great as I was under a bronch specialist who agreed to continue with the care plan as set out by Heartlands. Unfortunately after a couple of years he left and now find myself under the care of general respiratory consultants who will only treat on positive blood/sputum test results. Hence why I have deteriorated so much. So fed up of battling with them as I know that I understand my condition better than any of the Consultants I am now under at my local hospital as my knowledge has come from some of the best experts in the country but over the last 5 years I've been left constantly questioning myself as I've suffered years of constantly being told there was nothing wrong with me because my tests were clear and have been made to feel like I am a nuisance and someone who is dreadful to even consider questioning their methods. I wonder if it would be worth discussing with GP about referring me back to Heartlands as I got on really well with the team I was under there and I am sure they would be shocked if they saw the state of me now to when they last saw me.

[Hidden in reply to Blue58]

You definitely need referring to a specialist at a hospital who know what they are talking about when it comes to bronch. The lot you are with have no idea and are wasting your time and putting your health at risk. There may be a centre closer to you than Heartlands but if you are prepared to travel go for it.

[Blue58 in reply to Hidden]

Thanks Littlepom. I've come to realise that some Doctors really do not appreciate it when the patient seems to know more about their condition than what they do and I've certainly met a few who have let me know of their displeasure when I have tried to fight my corner.

[Hidden in reply to Blue58]

You are not alone. I had it only 6 wks ago and there is now a major hospital enquiry going on because a surgeon nearly killed me because he did not listen to me. We have to find our way round to the people who do know ehat they are talking about and get away from those who are useless.

[Blue58 in reply to Hidden]

I feel for you. I've been made to feel like I am a horrible and aggressive person for simply trying to fight my corner as I know my health has been deteriorating through lack of knowledge and care. Hope your enquiry goes well and you get a better outcome to your complaint than I've had from complaints that senior staff members have strongly advised me to submit as they themselves have witnessed and documented some appalling behaviour from their colleagues that I have been subjected to for simply fighting my corner. I've had a year from hell.

[Babyboy12]

I am going to try and sleep for ahour as not sleeping to good and do you get so tried with having bronchiectasis as I am always tried speak soon and I wish there was a group we could all meet up and talk. But once again thank you for your message x

[Hidden in reply to Babyboy12]

This where we meet up and talk. There are some lovely experienced people on this forum who have been managing their bronchiectasis for years and living a full life.It all comes down to the correct form of antibiotic treatment to stop and keep down exacerbations ( bacteria) this is where the expertise of the bronch specialist is so important.

Daily scrupulous emptying of mucus from the lungs so that the bacteria have no warm wet medium to breed in.

Exercise, good diet and sheer b....y mindedness!

We are here for you so do let us know how you get on.

[Babyboy12 in reply to Hidden]

Aww thank you I will do and yes your right this is a lovely group on here. I know I still got a long way to go knowing more about bronchiectasis it does take time to get your body use to it.

[Hidden in reply to Babyboy12]

Well your body has probably been struggling with it for years as it doesn't come on overnight. Now that you know what has been laying you low,you can get to grips with it, give it a jolly good shake and get control of it. You can feel much better than you do now.

[Alberta56]

Good wishes for seeing some improvement soon + better medics to look after self.