Bronchiectasis

Hi All

Just found this site this morning. Very helpful. Hoping for some advice from those who have experience of this. I'm a non smoker but brought up in a smoking household. I was hospitalised at 9 months ago with what they thought was exacerbated asthma. I haven't has asthma for over 13 years and even then, it was occasionally in hayfever season. Took a while to recover then in May started coughing again. Chemist over the counter stuff including antihistamines daily, Seretide inhaler, Montelukast at night and two courses of steroids later - no improvement. Eventually, they found a bacteria in my lung - haemaephillius influenzae. More aggressive treatment and antibiotics, one chest X-ray later - they have hinted that I might have bronchiectasis. I don't like the look of what I read online about it! X-ray showed my bronchial tubes are inflamed. My chest is sore on left side and hurts when I cough.

Waiting for spirometry and CT Scan. Anyone any experience of this? Had loads of blood tests... Some are back and show a grass pollen allergy but immune levels fine.

Thanks 😀

(Can't believe I log on to this group and there is a troll??! Have they nothing better to do?)

12 Replies

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  • hi lynn I don't know about what you have, but someone else here will, what I will say is don't take in anything that you read online it will just scare life out of you, ive done that. better wait and someone will get back to you, and be able ease your mind.

    tam

  • Hello Lynn, Sorry you need to be here, but very glad you've found us.

    I've had Bronchiectasis for about 10 years now, can't remember the exact date of diagnosis, but I was treated for Asthma for 3 years before that. Still don't know if I have asthma too, but do have a small element of Bronchitis but no COPD (consultant's words, not mine).

    A CT scan is the only reliable way to get a diagnosis of bronchy, it's not too bad. I just lay on a bed with a large polo mint at one end. This moves along, with a disembodied voice telling you when to breathe in and hold, then when to breathe out again. Over in about 20 minutes to half an hour. Spirometry is just taking a deep breath then blowing into a tube for as long as you can, until you feel your lungs are empty. A technician will be with you all the time to explain what you need to do. the spirometry 'machine' makes a graph of your breathing tests for the consultant to see. I've had these at the hospital, and at my GPs.

    A good site to visit, apart from BLF is

    bronchiectasis.info/default...

    Which is packed full of information, tips and advice, plus a forum, all free, and is run by patients who have been there and done it all.

    Earlier this year I had a jab for HIb, and a second one for Pneumonia. My particular lung pet is Pseudomonas, who occasionally brings Pneumonia along to the party.

    Sending you my best wishes. xx

  • Hi Lyn

    There is some scary stuff about Bronchiectasis online but a lot of it is not accurate so be careful what you read. This is a really good booklet chss.org.uk/documents/2013/...

    You will find lots of support on here as well especially if you have questions about treatment and managing your lungs.

    Hope your lungs settle down soon x

  • Hi Lynn, I caught a viral inf 2008 wrong diagnosed with late onset asthma. Coughed 24/7. No meds helped After making a fuss had a CT scan and lung function tests which showed I had bronchiectasis. (altho GP says also borderline asthmatic). The best possible thing that happened to me was shown how to use "huffing and puffing" phsio to bring up the mucous daily. The coughing went to a bearable level. I use a flutter/shaker pipe to help with the physio. My GP says you feel unwell with Bronchiectasis and very tired but I find that varies. Exercise certainly helps. I do not go to Breathe Easy classes as I get a lot of regular exercise anyway. If I do too much one day I have to rest the next. Pacing oneself. People vary wildly with how ill they are. I have started to read up on the old Bronchiectasis posts. Phoning a BLF nurse who knows about Bronch can also help. I suddenly developed loads of allergies and acid relux with this condition. Biggest problem at night was stuff going down back of throat and mucous up from lungs. However a steroid nasal inhaler helps with that. Red skinned apples and meds help with acid reflux. People on this site have had Bronch since childhood and have reached old age. I think just regard your own situation and not gvet too scared about what you read as it might not happen to you Also anti biotics I take AZrithromycin (exc spelling) after taking an anti-bio that was of no use. Cannot remember name but I know others have been prescribed and alos found it useless. Anyway, good luck with CT scan and lung function tests. I had a CT scan Friday and have lung function tests Tues but have gone five years under my own steam. I think most are under a specialist but my GP wants me to manage it for as long as I can without the hospital. Suits me as the specialist I saw knew nothing about Bronch and not very nice into the bargain. Hope your hospital experiences are better. This site helpful and "Bronchiectasis R Us. Love Kaye.

  • Hello Lyn and welcome to this friendly site. I have bronchiectasis and asthma. Had asthma for 25 years and diagnosed with bronch after a high resolution CT scan about six years ago but told it had probably been there for years.

    I am fortunate in having good support from my GPs and an excellent consultant who does know about bronch. The arrangement I have with her is that I can phone her secretary and make an appointment if I need to see her - have not done this for a couple of years now. I find I am very up and down and as someone else has mentiond have 'good days' when I can be quite active and not get tired and 'down' days when I can do very littel. Today is one of them, probably my own fault as I was on a stand for a Multiple Scelerosis organisation from 9,.40 to 4.00 helping to run the tombola and was on my feet for much of the time. As far as possible I try to go with the flow but it is frustrating. The advice to speak to a BLF nurse is good - they are so well informed and very supportive.

    Do ask if you can be referred to a pulmonary rehabilitation course - some areas don't consider bronch as being eligible but it is in others. I can't understand why because the benefits are so good for everyone with lung problems.

    Like you I have always been a non smoker but around people who smoked but that is not necessarily the cause of our problems.

    CT scan is a piece of cake, lie dow, relax and follow instructions; the staff are good at reassuring anyone who is nervous.

    All good wishes that you find what you need to relieve symptoms.

  • Hi Lynn and welcome to our (usually) friendly happy helpful forum. I am a bronch,to me it just means trying not to get to many infections, although they are inevitable. The H.I. bug is a nasty one, took me the best part of a year to get over that. My advice to you is do not Google, most of it is incorrect and scares us stiff at the same time! There are lots of guys on here who will be able to answer almost any question, so fire away! Take care xx

  • Hi Lynne WELCOME! Good to have you here!

    I was diagnosed with mild bronchiectasis in 2010 - in the bottom of my left lung, now it has also got int the bottom of my right lung but is still classed as mild - indeed the Dr Radiologist who read my first CT scan this year said he actually couldn't see it but the chest consultant could. I have had no extra treatment for this but occassionally use a flutter device to help bring up phlegm - as this must be moved. Though I always have a productive cough when I use this I don't get the yucky coloured stuff after I use it just when I cough the first few times. However also found out this year I have a nodule in my left lung and it looks to be an aspergilloma by the blood tests so told not to use the flutter as vibration in the lung van cause the aspergilloma to burst and spread! So a physio told me over the phone to take a big breath in as much as I could get in- then suck some more air in hold for 5 seconds and breathe sharply out - do this a few times three times a day you will find you will cough up phlegm - must be kept moving. It is best if you are shown all this by a physio so ask your Doc to refer you to one - you may find you have to wait a good few months - I waited from February to June.

    NOW HAEMOPHILUS INFLUENZA! My old, old friend. Think I am on my 6th or could be 8th course of antibiotics for this and second course of steroids. Hope you get rid of this quicker than either SheilaB or I look like being able to.

    Good Luck with everything.

    Sian

  • Hi,

    Forgot to say best to do all breathing exercises with a physio first rather than trying on your own. My physio also told me that her Mum has Bronchiectasis and finds 10 mins or so of steam everyday helpful. Worth a try but check with your Doc first and see a physio. Possibly best if you wait until after the results of the next CT scan come through and you know the full extent of what you are dealing with. Most importantly try not to worry I find yoga breathing helps when I get stressed so give that a try.

  • Does anyone know if you can get a flutter or acapella device on the NHS? I'm on second course of antibiotics now (Amoxicillin) because the H.Influenzae is still there but after 7 days out if a 10 day course, I'm having awful síde effects. This is my third night running, having to get up through feeling I am 'drowning' in mucus. I can't seem to bring any up though! Looking on line, I see these two devices recommended. Anyone use them? Thanks.

  • Thanks - I asked him this morning but he had never heard of it. He said he will order it for me if I can get exact name and model. Is there only the one type?

  • Thank you - very helpful. I've downloaded everything. Sorry I disturbed you on the beach 😀

  • Oh thank you so much for that! While I've been sat here gathering the info - my Consultant contacted me and just said 'Oh don't worry about that. I will get an urgent physio respiratory appt for you and they will give you an Acapella and train you in how to use it' - Thank God for efficient Doctors! 😀

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