help little pom I have been diagnosed with bronc via a ct, I now spend a week every two months
in hospital its usually a week of iv antibiotics i now have a flutter device, i eat for England despite formally having a poor appetite, i was told i must eat better im in a job I love for the first time but keep ending up in hospital im 52 with a family 1 boy and my wife and my do my best to do everything the good consultant says he said in Feb stop smoking (5 a day habit) I stopped that day, I wear a mask to cover my mouth on my way to work even though I live in the countryside my bloods show a allergy marker increase but they can not nail it I have had PET scans CT scans bloods galore I have a great consultant I know this as he is vice dean of the university hospital trust and recognised bronchiectasis before the CT which confirmed it latest news is I may have an allergy to fungus aspergillus but now ruled out something is causing constant flare ups any pointers would help all i want to do is stay out of hospital (well thats a misleading one as I work in one) but not be a patient have you any recommendations that Icould use, very much appreciate your advice, I am at my wits end as I o not get paid when I end up i hospital and can not claim anything turned down for pip so rent and all the other stuff ends up on credit cards but thars not the point do you have any and i mean anty tips for avoiding flare ups I am scared to go to bed sometimes as they always happen at night and the routine is a&e then ward
Dave
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davehydeuk
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Thank you I'm a little tech unsavvy with all this so your help is appreciated this is a good forum for us and I read it everyday and have learnt so much every little bit of info adds up to a lot of info
Hello davehydeuk
I’m so sorry that you are having such a terrible time.
I have read your post very carefully and several things come to mind.
There is a chance that it an allergy to some fungus in the countryside (yes they love damp leaves) could be triggering the exacerbations but having ruled out the main culprit aspergillus, I doubt it.
You seem to be doing your mucus clearance quite efficiently so you are probably not contributing to it.
Now the difficult one. IV treatment for bronchiectasis is usually two weeks, not one. Many trusts are now rolling out a system whereby you can do the IV yourself at home.
You could be having the wrong antibiotic for the bacteria involved.
After IV has cleared out the infection it is usual to go on to long term nebulised antibiotic or azithromycin, depending on the bacteria involved.
I don’t like to criticise your consultant but there are a lot of general respiratory consultants who can distinguish between copd and bronch before the ct scan but very very few who are experts in its treatment. Being Vice Dean of a hosital trust is an administrative position but not necessarily proof of a person’s expertise in a very complex condition like ours.
It does seem to me that your antibiotic treatment is not sufficient each time and you are not having any ongoing treatment to keep the offending bacteria down in the case of pseudomonas or absent in the case of other bugs. Therefore the bug just keeps having a party.
It is possible to break this cycle but it requires the proper treatment.
I suggest that you google British Thoracic Society guidelines for the treatment of bronchiectasis.
It is your choice how you go from here. It is difficult to challenge these people but your health and your quality of life is so very important. So you have to way up your fear of offending his sensibilities with the harm of continuing with ineffective treatment.
The treatment that he is giving you is obviously not effective and needs changing to that recommended in the guidelines.
You could print off the guidelines and go and discuss it with him. He may be very amenable if you put it under his nose.
You could google the trust, find out exactly who the bronchiectasis specialist is and insist on being transferred to them.
Either way you cannot leave things as they are because you need to be able to work, enjoy your family and live a full life. It is possible with bronch. Look at me 64 years since diagnosis, I have a volunteer job and I was up in the Rockies this summer!
Littlepom everytime now I go in I hope they find something anything and I mean anything would be a start your experience with this condition is extensive and I can tell you know more than our docs(as much as I respect them ), but I do feel sometimes im an animal in a zoo who fascinates the medics who talk amongst themselves fascinated by the problem however talk about me like I could have no understanding of the discussion even though I am living this nightmare I had cancer 10 years ago and that was easier radiotherapy to my throat i was very poorly but got cured and knew what was wrong this is different im like a mushroom i live in the dark scared of my next onslaught
I absolutely recognise the guinea pig aspect to your feelings. The fact that they treat you like this indicates that they do not know bronchiectasis. An expert would not take this attitude because they would know and be giving you treatment which is keeping you well. I can only advise you to get off the roundabout there and look for a bronchiectasis specialist who knows what they are doing.
If you make it clear to them that you have educated yourself about bronch and show them the difference between the treatment that you are getting they nay take you seriously but sadly I doubt it.
Hello Dave, Littlepom has given you some excellent advice and I hope you feel that you can start getting in control of your bronchiectasis.
Worrying about having no money coming in to pay the rent when you are so poorly that you are hospitalised, can't be helping your health. Please call the BLF Helpline (03000 030 555) on Monday and ask to speak to Biddy who is our benefits advisor. I'm sure she will be able to advise you on what benefits you are entitled to in your situation.
I will call monday as it seems I pay loads of tax and ni then when i don't get paid for two weeks it seems i can get no help we have savings but to watch that disappear so quick is astonishing less than £6000
I just mentioned this post to my wife going up the amazon now to order new pillows and duvet currently all feather thank you for the advice somethings should be obvious by now but sometimes things look in your face and you miss them this is no doubt great oversight thank you all advice is welcome and this is very valuable
You need to allow for the fact that your bed won’t feel as luxurious with synthetics,but hopefully it will help your health.
Cani suggest that when the duvet/ pillows have been moved out of the bedroom that the room / mattress etc is vacuumed several times.windows wide open etc.
Years ago,every time my eldest son stayed at my parents,his asthma flared.eventually we worked it out.they had a feather eiderdown,made by granny.
He used to love it,wrapped it around himself,it taught me a valuable lesson.
Don’t get rid of your feather stuff,just in case that’s not the answer.but tie the bags tight to contain feathers.
I so hop this helps you.
So who will be the lucky recipient of the feather duvet and pillows.?
Great advice from both Littlepom and Oshgosh top marks to both. I can't add anything other than to send my best wishes that things go better for you, both health wise and financially. 🙂
thank you Gladwyn you have added just by reading my post I can not express how important every single bit of info is to me right now I beat throat cancer 10 years ago but this is a little bit more challenging but hey with help from people who live with this I will learn to adapt so you all help thank you
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