Bronchiactasis coughing up fibrous tissue daily

[Cheriebobo]

Cheriebobo here, havnt slept for 4 nights last week small bit blood ,no phlegm, st night 3am coughing blood, last night coughing a lot of what looks like stringy fibrous tissue, on my 3 week amoxy, waiting on 2cd ct scan results, this happened in may as well, can anyone help with info or what to do drs just saying amoxy, havnt had face to face since jan or an appt with consultant, very frightened, existing on 3 hrs sleep then awake and have to sit up,

[Hidden]

This doesn’t sound right for bronchiectasis. Anyway amoxyll is virtually useless for the bugs which we get. It’s the fibrous tissue which is coming up which concerns me because this is not usual. I think that you need looking at by a bronch consultant as soon as possible as your GP is not coping. If your scan was done under the orders of a bronch consultant, ring their secretary and explain. If you keep coughing up blood and the tissue, I suggest that you get yourself looked at via A & E.

[corriena in reply to Hidden]

I agree with littlepom. Please dont let your gp just brush you off

[Cheriebobo in reply to Hidden]

Hi littlepom ive been following ur replies for a few weeks now so am glad uve posted, i have had asthma all my life, also have 3.5 benign thyroid nodules for past 10 years which mysteriously have reduced to half size since last xmas, ent consultant said I was lucky,!!!this sometimes happens, my 1st bleed was 2 yrs ago and the dr said at time my blood vessels were weak, !! But this jan I had the worst bout of illnes in years I could hardly walk or breath they gave me co amox which eventually helped, i started to get back to my usual self , and felt good but 3 wks later felt like id been hit by a bus, I said to dr later, just before 1st lock down i think ive had Covid, I was just laughed at and told it wasnt in the country when i 1st took ill, I had gave sputum samples but never heard any more thats when they gave me 2cd lot of co amox , the bleeding would stop for a few mths then start out of the blue again , i have taken photos of hankies full of blood and sent sputum pots with the blood and tissue in it, when i ask im told it was clear, its obvious from the replys that i need to push this hard , but demoralizing when u sit for 40 mins or more trying to get through to surgery on phone, when i dropped off my sample last week the receptionist put a basket on floor told me to put my sticker on tub put in plastic bag, then kick the basket over the entrance to the surgery door, sure made me feel like i had the plague, , am trying to google to see if there is a consultant in north ayrshire who specialises in Bronchiactasis, I'll need luck for that,

[Hidden in reply to Cheriebobo]

Your GP is proving hopeless at dealing with this. So, as always with bronchs, it is up to you to be very proactive in your own interests. ( just when you feel so worn out and rotten) Finding a good bronch specialist quickly is the major thing as only they have experience in this condition.

It is possible and not unusual to cough up blood with bronch when you have an exacerbation of infection. The infection causes a small blood vessel to burst.Getting on top of the bacteria with the right antibiotic for at least two weeks can help sort this out. One week of an antibiotic meant for a specific bacteria (pseudomonas) sent out willy nilly may work if that bug is present but it is not a long enough course for bronch and a very ad hoc way of doing things. Co amoxyclav, which you say that you had before, did seem to tackle the bacteria present. For a while. With bronch we live with a cycle of infection, medication and trying to prevent the bugs breeding out of control again. I do hope that you scrupulously empty your lungs every day of the mucus that lies in the lungs and airways and in which these bugs breed.

Also I had bleeds when I was taking an anticoagulant for atrial fibrillation so I had to stop it.

A specialist would decide on your way forward, which antibiotics and in what delivery system to attempt to stop exacerbations flaring up again. They instruct the GP what to give you.

What concerns me is your description of tissue coming up, which is definitely not usual and does need investigating. Your GP should be acting on this now. Get on their case again.

Please continue to look for a bronch specialist, take the name to your GP and don’t leave until you get a referral. You can also ring the specialist’s secretary and flag up that you are wishing to be referred to them. Edinburgh may be your best bet. I don’t know much about the Scottish health system but maybe if you find one over the border in England and don’t mind travelling you may be able to do that.

Good luck.

[Cheriebobo in reply to Hidden]

Sorry, i hope u got my long post, my phone needing replaced, does what it wants and misses letters your advice is fantastic, i do hope u got that last one, coud t do it again, im also going to try Glasgow for consultant, just an hour away, thanks so much for your help keep well,

[Hidden in reply to Cheriebobo]

I think that I did get it and replied above. We are all with you and know just how hard it is to get medics to take you seriously. I hope that you find the right person. Glasgow is a big centre also . I'm thinking about you.

[Cheriebobo in reply to Hidden]

My friends tell me if i talked less i could breathe more ,lol same with my long txs, but its great to get the info that im not getting from docs,,,as u know you get so tired fighting , thanks

[Hidden in reply to Cheriebobo]

💖

[Cheriebobo in reply to Hidden]

Morning littlepom , just had a phone call from receptionist at my surgery to say that they are sending out new antibiotics, ha ha got them yesterday !! that i did have an infection, cant believe it ,it was the smallest sample ive sent in years, i asked to speak to my dr,, guess what hes on annual leave !! . I asked for clearance on why ive only been given 1 wks supply, the answer was ,,everyone just gets 1 wk !! I see what u meant about keeping on at them , its not my nature to be challenging, but im changing , then she said she didnt k ow shes only reception, usual dr back next tues ,so will be on phone right away or sooner if needed, blood was reduced quite a bit this morning and that was with only 1 day of Cipro, but i was,awake with bad palpitations at 4am, I k ow u said you had atriel , had tjat yrs ago but coudnt get beta blockers at time for some medical reason , but its another question for my growing list,

Have a good day all and thanks again ,

[Hidden in reply to Cheriebobo]

Isn’t it wonderful how ‘I’m just a receptionist’ quotes the treatment for copd at you because the GP who has prescribed the drug doesn’t know the difference between copd and bronch and expects you to accept that! 🤦‍♀️

When you speak to a GP refer them to the British Thoracic Society’s guidelines on bronchiectasis which clearly say two weeks course of any antibiotics. Also it needs to be a high enough dose. I have 750mg cipro twice per day but so many GPs prescribe only 500mg.

If you are not coughing up much even though you have an infection it is probably because it is stuck down there. It is very important that you get this mucus out otherwise the bacteria in there will just continue breeding even when you have finished the abs.

I know that it is scary when blood is coming up so I think that the best thing is to try to ease it out gently. Not to have hard bouts of coughing.

You don’t seem to have a nebuliser to use saline or an acapella or flutter device to loosen it so you will need for now to work on it yourself. There are breathing exercises which can be found on the internet to help with this but over the years I have discovered that also, if I lie on my back with my knees and my hands on either side of my chest, bend my knees then lift my lower back off the floor and just do slow deep breathing, squeezing gently on the breath out, the mucus starts to work its way up. Then I can go and cough it into the toilet. I do this repeatedly and several times in the day. It doesn’t make you dizzy or squash your chest as lying over the bed or bending down does and it is very gentle. It may work for you.

Good for you for asserting yourself. Hopefully you will be able to educate your GPs into giving you the right treatment. I hope that you do find a good bronch specialist because this is what makes all of the difference.

[Cheriebobo in reply to Hidden]

Ive only been diagnosed 4 ths ago so am only starting to find out, even although asthma, all my life, im building up notes to quote to them when i eventually get to speak to them, i am down on floor doi g what uve described, my chest is rattling with the phlegm but doesnt when i stand up, as im tx now i have coughed up plehgm now and am continuing to do so at this moment, not a lot but it is moving, when im in bed in morning lying with knees up thats when i usually cough up the blood and phlegm, , still more coming up with a little blood in it, so I'll try it a bit more later and especially before bed, i dodnt k ow cipro was for copd ,i feel such an idiot for not k owing all this, past 5 yrs concentrating on hubbys dementia has taken its toll, I'll phone surgery on Fri to see if i can speak to another dr until my own one comes back next week, thanks littlepom,

[Cheriebobo in reply to Cheriebobo]

Sorry , forgot to ask you is doi g the exercise before bed ok , or when and how many times should i do it please, have tried the huffing ,,doesnt seem to work for me, I'll see if i can ask dr about flutter when i get to speak to him, ,

[Hidden in reply to Cheriebobo]

Well you are really learning very quickly! I developed that method of loosing the mucus from doing the breathing exercises that taught me how to breathe properly as a child. I had four years of monthly physio to teach me that and had to do it twice each day at home. I found that I would start to cough up after a few minutes. It is very relaxing and less effort than standing up and doing the cycle of breathing and huffing. It seems to be helping you. Practicing the cycle breathing and huffing is a good thing because one method can get very boring.

The more mucus that you can get out the better. As the abs work, the blood should lessen and stop and getting the mucus out should help to get rid of infection also. Do remember to empty your lungs every day,even when you feel better. Keep the gob boggart away!

All of the official methods are very useful and have been arrived at over the last 60 years of different and changing aporoaches. As a child I was placed over a wooden rack and pummelled twice a day. I ended up with sore ribs, a headache and very little brought up. From then we have progressed to lying over the bed, lying over wedges and now to the breathing tecniques. It is obvious that gravity works and so lying on my back with my knees and lower back raised up works for me.

For years ( and I think still) official advice is to work on shifting it all first thing in the morning. I always told them that this just involved a lot of furious effort on my part for little effect. However, if I get up, move about, exercise or walk etc, by mid day. It is all too happy to come up.

As to how often you do it, you will work out for yourself. It depends on whether I am going out or not. I try to get rid of plenty before I go out but if I am in all day, I do it to my convenience. I listen to a book or radio in the afternoon and do it at my own pace. I try to get to a point where it feels as though most of it is out before I go to bed.

Copd patients have most of the antibiotics that we do, depending on which bacteria is giving them trouble. They tend to have shorter courses than us. As an asthmatic you may also have an inhaler which is also for copd or courses of oral steroids which are not recommended for those who only have bronch.

Keep up the good work. You will soon be an expert.

[Cheriebobo in reply to Hidden]

I remember as a child being in hospital and bloody thumped all over my back ,,to bring it up,,also had to go to a place where 6 kids , naked !!! Had to walk round a blue light, must have been ultra violet in those days, and then into a steam room, i always ended,up coughing all day, now i prefer the sun !! . As u said in the morning it takes me a while to getyself together so i usually prop up the pillows ,knees up and read for a while, thats when i discovered it made me cough, ive been trying to surpress the cough which i now know is wrong, nut its funny the vibration of brushi g my teeth brings it up, What a lovely subject , lol, also thankfully if its to cold and damp for me to go out I can manage 1km on my treadmill in 20 min and usually feel good after i do that, pity my dogs wont join me, cold damp scottish weather is my killer and i live by the sea, Although i lived in Cyprus for 6 yrs and the humidity in summer killed me, just cant win, need the lottery to build a great big bubble,all kitted out with perfect climate, and good drs, !!

[Hidden in reply to Cheriebobo]

Sounds as though you had mild bronch with your asthma for years and it was never properly diagnosed. It is really really important that you get the stuff out of your lungs. Walking by the sea and any form of exercise gets it moving and a daily routine essential. It’s no wonder that you have been getting one infection after another if you have been suppressing the need to cough it out. I know that having asthma alongside can be very difficult because all sorts of things affect how the asthma behaves. I’m sure that you can work out how to get some fresh air and I’m totally impressed with your use of the treadmill. I lived in Beirut for four years in my twenties and I can remember just standing over the air conditioner gulping in cold air. Goodness knows what rubbish I was breathing in!

[Cheriebobo in reply to Hidden]

Well i thank u for giving me a kick up the proverbial and making me learn more, im just off the phone to surgery asking to speak to dr who gave me citro, she is phoning back this aft, also going to ask why a receptionist is giving out her advice, really angry at that one, PHEW ranti g this morning, but getting proactive ,its lovely day here at moment, so getting myself together and taking my 3 woofs a short walk down beach, you really are helping me on my way through this quite difficult disease, although i dont have internet ,ive googled the differance between bronch,and copd, imteresti g, ive never smoked in my life but have worked in many jobs where everyone arround me puffed all day, i cannot even stand the smell and also allergic to all fumes and cleaners, FOOD !! dont even start me, LOL, THANKS LITTLEPOM keep u updated and hope these posts help anyone whos reading or new to this like myself, Were in good hands with these experts on site xx

[Cheriebobo in reply to Hidden]

Me again lost my last post bloody pho e !! But results from 2cd chest scan for small shadow in right lung came back within 7 days, oh the anxiety of seeing that letter pop through the door, had to sit down with a cuppa befoe i could open it,Phew,, anyway letter stated no growth in size of the shadow but they wish to keep an eye on it and will have another scan in 9 mths time, so im taking that as a good sign at the moment I still takei g ur ad ice a d pushi g, my nurse practitio er is good so i have good com,unication with her, and hopefully the 2 wk course of Cipro keeps dreaded bugs down , seen a new post from tigerfeet a young lady, who ive told to keep an eye out for ur info its always spot on , keep well everyo e and hopefully I'll get a new pho e soon that can actually spell,!! Honestly its not me its the bloody phone LOL

[2greys]

Coughing up blood and tissue really needs investigating, as an urgency. There are several causes that may require urgent treatment and better to rule these out before they can develop into some thing serious. Hopefully nothing serious, good luck.

[teddyd]

Hi

I would have thought a sputum test to clarify what antibiotics are required. Producing blood is concering. I would phone and leave a mesage for the consultant to call you along with your list of symptoms.

Not sure where you are ? but NHS out of hours might be more helful than your GP

[Cheriebobo in reply to teddyd]

Hi teddyd thanks for replying im in Ayrshire, gave a sputum test last week ,i was told to ask for a 5 day culture as seemingly Bronchiactasis hides a lot, just 5 min ago had a 7 day course of Ciprofloxacin250gr brought over by pharmacy, think ive had this before but remember allergic reactions with it, i havnt spoken to a consultant but going to take everyones advice and phone secretary to see if i can speak to him, i have no cough no phlegm or blood during the day its during the night lying down that it happens, I'm now thinking would it be oeasophagus or acid as ive had a lot of anxiety ,my hubby has dementia and havnt seen him in 8 mths and 2 wks ago my sister died within 5 days of diagnosis with metatastic bladder cancer, , so anxiety levels are through the roof as well as waiting on results of 2cd scan tha k u all out there because nobody else is listening, im pretty rubbish at social media so hope i press right button to reply, thanks

[jmsutt73 in reply to Cheriebobo]

Curious how the Cipro was for you... ?

[jmsutt73 in reply to Cheriebobo]

Just read your entire post with the Cipro comment about allergy. I'm so sorry for all that you have been through. Going through so much, it has to have been stressful, and ongoing. Prayers with you. J

[teddyd in reply to Cheriebobo]

What an awful time you are having. We are all here to listen and to give supportxx

[Cheriebobo in reply to teddyd]

Its all being recieved gratefully xx

[Hidden]

It sounds more than bronchiectasis going on. My standard anti biotic for chest infections is 2 weeks of Doxycycline.

If you have not already discussed these symptoms with your doctor (telephone appointment) I think you need to communicate what you have here.

I agree with 2greys this needs investigating, perhaps go through 111 service . click on the link below;-

111.nhs.uk/

Best not to delay.

Take good care

[Cheriebobo in reply to Hidden]

Hi bkin, my usual dr not on today, so i will phone him tomorrow, thats why i was surprised at pharmacy just putting meds through the door, no phone call from a dr , surgery must have recieved results from sputum sample last week, last week when i spoke to a nother dr at practice ,she said they were going to put me on amox 3 times a week continuous, there not listening to me saying its blood not phlegm , its soul destroying , my usual dr was the one who eventually sent me for emergency ct, had 2cd one last wed so due results soon , didnt have the contrast dye 2cd time, the waiting is horrific, ,thanks for ur reply,

[Hidden in reply to Cheriebobo]

Poor you, hope you make contact with your regular doctor who hopefully can put your mind at rest. Keeping everything crossed for you and hope you will soon be feeling better.

Take good care.

[Cheriebobo]

Thank you , keep u posted,

[jmsutt73]

I have both bronchiectasis and IPF, and I have not had this experience. I agree with Littlepom....need to be seen by a bronch consultant.... God bless, J

[Izb1]

Hi Cheriebobo and welcome to the site. I am so sorry to read of all the problems you have been having. I cant add anything to the fabulous advice given by Littlepom, but would say please dont leave it too long to start banging your drum, you need treatment now. Lets hope your doctor hears you, if not shout louder. Keep your chin up x

[Cheriebobo in reply to Izb1]

U are all being fantastic, i just didnt have a clue there was so much support from a group, livingon

[Cheriebobo in reply to Cheriebobo]

Im trying to get a new phone as this one doesnt like working, im getting so much support from u guys and gals its fantastic , living on ur own at this time is bad enough but when u cant get the drs its bloody tough, littelpom has so much info , but u should see this weeee woman on her back ,,puffing, my dog thought id collapsed,, need,a bit of black humour, she was trying to give me mouth to mouth, lol, I'll shut dogs in kitchen next time ,xx

[Timner4]

Phone ambulance service and get to aande emergency it sound like covid if it is the virus it could be attacking your lungs I have just got out of hospital with more or less the symptoms you have