I’m 34 and was diagnosed with Bronchiectasis in April 2014. I managed to get things under control using saline nebuliser with an acapella duet attached and didn’t have an infection for almost two years. However I had my son (second child) in January and my chest continued to be ok. Since starting to cut down on breastfeeding however in July and since stopping completely I have been producing much more mucus which is really thick. I have had amoxicillin and doxycycline but it hasn’t improved. I have had 3 sputum samples tested at various times and all are clear. Does anyone have any ideas, tips or advice please? Thanks
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Laura152
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Hi Laura152, I also have bronchiectasis and asthma, had a lot of flare ups, antibiotics, steroids etc. I have been given a flutter valve, which helps bring the mucus up, helping chest clearance and I take carbocistine tabs 4 times a day which helps thin the mucus, making it easier to cough up sand clear the chest, this makes it easier to breathe and helps with infections. Give it a try, and good luck
Same hear I have all the asthma meds but getting steroids from doctors is almost impossible I wos discharged from hospital 3 years ago at hospital I wos always toled I had bronctiactasis since a child with secondary s asthma my GP says it’s not on my records after going to a vest specialist since a child a new one took over seen me twice and said I wos Looking after my self well so he discharged me I wos 70 then iv had a virus each winter this one I thurt wos going to see me of so I’m going back to a different hospital in dec make shur you get looked after its important x
Hi Laura and welcome. First of all well done in getting in control of your bronch. I am 69 and have had extensive bronch since I was diagnosed at three. I have had and brought up two children and am now enjoying my 5 grandchildren.
Bronch presents its challenges along with changes in our lives. We just think that we are nicely in a routine to keep it stable when boom, something knocks the whole thing off and we have to adjust and go into battle.
From my own experience I think that two things may be going on here. You certainly have your hands full with a baby and an older child. Could it be that you are not having enough time to yourself to empty your lungs of the gunk that the bugs love to breed in?
Secondly, you may have a bug that amoxyl, which is generally as useless as taking smarties for us and the doxy are not tackling. Also, you don’t say if your GP is trying to handle this exacerbation or if you have a bronch specialist to contact. GPs know very little ( nothing) about bronch. They are scared to prescribe antibiotics in the high doses and for the length of time that we need them. They rely on lab tests which are notorious for coming back clear when it is obvious that there us something causing trouble. They need the advice of a bronch specialist as to which abs to give you.
You are at a critical time in your life and need all of the expert help that you can get to keep you well so that you can manage your daily challenges with two children to look after.
If you have a bronch specialist (not a general respiratory consultant, they are not trained or experienced enough in bronch although they like to pretend that they are) call their secretary and explain your situation and that you are struggling. They should come back to you and your GP .
If you do not have a bronch specialist now is the time to get yourself a good one. Look on the internet for one in your area. They are usually at big teaching hospitals. Take the name to your GP and insist on a referral. Do not take no for an answer. I’m afraid that we have to be pro active in sourcing the right help and vociferous in demanding proper treatment.
It will be the best thing that you ever do for yourself. I have had a bronch expert and then the lady he trained for 35 years. They have kept me going when I realise that there are many who have not had this expertise and have deteriorated, due mostly to GP ignorance, neglect, and lack of crucial management.
Good luck
You are a bronch hero!
I hope that things improve for you and don’t forget to enjoy your little ones. xx
I also had several mucus samples come back as clear but then found out that my GP’s were only sending them for a normal 3 day culture but should have been sending them for the same 5 day culture as they would for a cystic fibrosis patient. This shows up the harder to treat bugs such as pseudomonas and then they can get you on the correct antibiotics which you can then be prescribed as your rescue pack.
I have the same bronch specialist as Littlepom and she is brilliant- it’s worth doing some research in your area and asking for a referral to a specialist. Mine came through within a couple of months due to the amount of infections I was having.
Pat I asked about the 5 day culture. Do you mean they grow it for 5 days or you take in a sample on 5 consecutive days? I thought you meant the former. Apparently my gp said they do the 3 days and send a result and if anything further grows after then they send a supplemental result
I'm sorry - I meant that they grow it for 5 days but I don't believe that they normally continue for more that 3 days unless they have been asked to do so by your GP or a consultant - it's the same test that they would order if you had cystic fibrosis.
Thank you all so much for your replies!!! I didn’t expect to get any 😀 it’s so nice to ‘talk’ to others with Bronchiectasis. I don’t know anyone else with the condition. Littlepom thank you so much for understanding the implications of having children and the time pressures. You’re so right - my nebuliser is done at break neck speed so we can do the school run so probably not the best. However this hasn’t changed so I’m not sure why it would be so different over the last few months. That’s v interesting about the 5 day cultures. I will certainly mention that to the GP! I do have a respiratory specialist at Stoke. Unfortunately he’s on long term sick leave so haven’t been able to see him but have an appt next month with another one. Just fine it so strange it’s suddenly flared up!
That’s what bronch does Laura, it suddenly flares up! Sometimes there is a reason that you can identify such as in the wake of a virus and I believe that stress and tiredness encourage the bug boggarts to grow. Sometimes there is no apparant reason so this is why we have to be ready with our emergency packs of the antibiotic most suited to us in a high enough does to knock the bugs on the head. This is where we go round the circle back to the expertise of the bronch specialist. Do check that the consultant whom you are seeing is a genuine bronch expert and not a general resp consultant with an ‘interest’ in bronch.
Hi all. I have been to the GP today and been given carbocisteine tablets 4 times a day. Like you said patchpoppy2 thank you. I’ve got to try them for a week and see if it helps. They also said I need to be drinking 3 litres a day! That sounds an awful lot. Have you all been told similar? Thanks so much your replies have really helped. I’m finding I’m so tired dealing with this plus having two children and it’s so nice to know it’s not just me
Carbocisteine isn’t going to do anything about the bacteria but it will help you get the mucus out that they breed in. You should be on a course of the right antibiotic, in a high enough dose for at least 14 days or you will slowly slide down the hill. Please call the secretary of the consultant whom you are supposed to be seeing and tell them that you need seeing now. Your GP is failing dismally to treat you properly ( they all do) and you need the support of the expert.
Same with me I was rearly bad mucus and coughing weasing day a night but samples came back no infection I to like your self don’t understand it I was left very week
Thanks all. I saw consultant last week. They think samples having been showing anything up as they’ve been poor samples or bugs have died before reaching the lab as last one showed haeomphilus influenzae. So going to have two wks amoxicillin to try to shift it. Think I’m colonised with it as I had it in jan too. Stopped the carbosysteine as it didn’t do much and also gave me awful stomach ache
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