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British Lung Foundation
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Bronchiectasis

Hi everyone, I've just been reading through posts and replies about bronchiectasis. I was diagnosed with mild bronchiectasis amongst other things earlier this year. My specialists report on my scan results only mention my copd, lung nodules and my spirometry result. I asked about it during the consultation, but was just shown it on my scan without comment. I further questioned my GP who said I didn't need a sputum test or a rescue pack and just gave me a print out on it. My question is, how would I ever know if it was the bronchiectasis or the copd causing symptoms. I am still under the weather after my flue and pneumonia jabs from a week last Friday and have developed a relatively unproductive cough I.e. sputum clear. I'm not sure if I still feel rough because of the jabs, I am very drug sensitive, or have i picked up something. Also, and i'm sorry if I sound dumb, but does a cold or infection always cause an exacerbation of copd and bronchiectasis. If it wasn't for this site I would know nothing. I have tried to ask questions of the medical professionals I have seen since being diagnosed, but have generally been fobbed off with an inhaler, Internet printouts and told to get on with my life. The only useful and helpful advice I received about bronchiectasis was from a blf nurse. I relayed the information she had given me about bronchiectasis to my gp and he said "has this nurse actually seen your scan". I don't know now whether i'm being a nuisance or if I should be concerned. I certainly felt like one when I went to my GP, and I have only seen him twice since being diagnosed. No one has actually told me that it's not a concern because it's only mild. They have actually said nothing. Any advice would be appreciated. Carolx

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It sounds as though your GP doesn't much like being challenged. Is there another GP you could see who might be easier to talk to? The other thing is, have you actually seen an expert in bronchiectasis, as it is not the same as COPD. If not it might be a good idea to research for one at your nearest teaching hospital and ask for a referral there. The last thing you need is a knowall GP. Good luck x

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Thanks Carnival.

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Hi Carol, I find your post quite confusing so please forgive me for asking a few questions so that I can try to help you. You say that you were diagnosed with bronchiectasis this year but that the specialist report on the scan only mentions COPD and nodules. Who gave you the diagnosis of bronchiectasis? I am asking this because bronch can only be diagnosed by ct scan and it seems strange that the consultant who read the scan does not mention it.

Also, what were the 'other things' that you were diagnosed with?

It seems to me that your GP does not believe that you have bronchiectasis because he is treating you as if you only have COPD only. This is typical of GPs who are woefully ignorant of bronchiectasis and its management so would rather pretend that it is not there.

This is why you need to see the bronchiectasis diagnosis in writing. Also, bronchiectasis needs specialist care from a bronchiectasis expert. You will need to find one in your area ( look at big teaching hospitals) and insist on a referral. These experts tell your GP how to treat you and yes, if you do have bronch you will need an emergency pack of 14 days high dose antibiotics to start as soon as an exacerbation begins. You need this to prevent further lung damage.

Telling you to ' get on with your life' is a very old fashioned and frankly disgusting attitude. I had it said to me when I was in my twenties by a GP who did not know me and denied that I had had bronch since I was 3. I am now 67 and still fighting their ignorance and dismissiveness. Keep at him until you get your answers and suitable treatment.

Getting a cold or chest virus does not always mean that an exacerbation will start up but it can. Bronchiectasis is a naughty little boggart and will flare up at the slightest excuse. The fires around you will not have helped. I don't go out around Bonfire Night in England because every year the smoke would result in an exacerbation.

I hope that begins to help you sort out this puzzle.

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Hi littepom, my radiologist report after my ct with contrast scan says that I have mild bronchiectasis as well as copd and multiple lung nodules. My GP has these results so is aware of the diagnosis. However, when I saw my respiratory specialist she seemed only concerned with the lung nodules and at the moment I am being re scanned, next one Feb 2018. The copd is very mild, so she dicharged me from clinic. The bronchiectasis was not discussed at all. The bronchiectasis has been diagnosed by the radiologist and the respiratory specialist from my ct scan. My GP has all the reports. Carolx

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It sounds as though the respiratory specialist is not an expert in bronchiectasis, otherwise she would not be ignoring it. Your COPD, the nodules and your bronchiectasis will all need very different treatment. GPs are only trained to treat COPD. This is why you need to be under the care of a bronch specialist. This is especially important as your bronch is mild and the danger is that it will be ignored by the medics and untreated exacerbations will lead to it progressing. You are complicated and I do hope that you get the right care.

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I thought this might be the case, but up to now two different gp's have been totally unconcerned with the bronchiectasis and i'm afraid if you're nhs you cannot refer yourself to a specialist. I know it's pointless going back to the gp with this because after he gave me the computer print out on bronchiectasis his attitude seemed pretty much that he would discuss it no further.

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Do find the name. Do go back and do not leave until you get the referral. Taking such a dismissive attitude to your bronchiectasis is a dereliction of duty. Ask him point blank if he has a diagnosis of bronchiectasis in front of him. Then tell him that you know that any old consultant won't do and this is who you want to see in order to know that you have ongoing specialised care and they can teach you how to manage it.

It is obvious that he hasn't read the computer print out because if it is any good it would emphasise daily physio and immediate treatment of exacerbations, neither of which he has discussed with you.

You are lucky, because you only have bronch mildly you may be able to carry on for years without it getting worse. But to do this you need to be managing it every day by getting rid of the mucus and by hitting any exacerbations on the head as soon as they happen.

I have had all of my treatment on the NHS and my main relationship is with my bronch specialist and her secretary. I only use my GP to get any oral abs and inhalers which I need.Believe me, I have had some tremendous fights with various GPs over the years and if I had given in to them I would not be here.

I act as a 'patient' for the examination of doctors from first year students to those wishing to become GPs and consultants. On every level 9 out of 10 cannot recognise the bronch and have no idea of its treatment. Scary!

I'm afraid that due to wilful government neglect of bronchiectasis we have to educate ourselves, be our own advocates and be vociferous in getting the right treatment. Even when it may mean changing GPs.

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Thank you so much for your advice little pom. I will try and find one in my area over the weekend. I have already thought about changing gp's, but again I don't want to' jump out of the frying pan and into the fire'. It's all so very exhausting. Firstly the shock of the diagnosis and the amount of things going on in my lungs, then the indifference of the med professional. Sometimes it feels that there is no challenging the system. I don't feel people are treated as individuals anymore. In my case I have experienced that one treatment suits all.

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I so agree with you. Just when we need support we find ourselves confused and forced to stand up and fight to get what we need. I have my lung treatment sorted ( for now) but I am having big problems with docs over my heart conditions. Good luck. We are here for you. big hug.

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Thanks littlepom, without this site I would have gone made with fear. I've read time and again of this happening to people. Thank goodness we are all here for each other on here. Hugs Carolx

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Well, I'm learning all the time! My bronch has been put down as COPD at my GP's? Is that not right? They know its bronch. but call it COPD. I no longer see any specialist as mine was said to be mild. Although I do self treat with preds and ABs. Thanks littlepom Confused.com!

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If you have a written diagnosis of bronchiectasis done by a ct scan then it is not COPD. Chronic bronchitis and emphysema come under the umbrella of COPD. They are 2 different conditions. It is possible for some people to have an element of both as with asthma and bronch but its not very usual.Your surgery needs educating. Both need very different treatment and even if you have mild bronch you need to be in the care of a bronch specialist. If it is ignored and exacerbations are wrongly treated it won't be mild for long as the infections cause more lung damage.People with bronch don't usually have oral steroids unless they have asthma as well. I have never had them in 64 yeats.This is what a bronch expert should decide. I do hope that you get the surgery and your care sorted out.

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Thanks littlepom, yes I do have mild asthma as well although it doesn't seem to bother me too much. All very confusing really!

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That happened to me too Hetty. Until I ended up in hospital with Pseudomonas. I put in a complaint to my GP and made sure my consultant sent them a letter telling them I DIDN'T have COPD, but Bronchiectasis.

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Like you. In U.K. And deal mostly with hospital consultants and specialist respiratory nurse. Bronciectasis always put first. Lucky with NHS. I was always lucky with GP who never had any problems with referring to hospital.

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You can't refer yourself, but you are legally entitled to a second opinion so it is worth asking. You are the most important person in this triangle. Because I have unusual and complex conditions I have had to spend most of my life fighting for the right care. Mostly it has been worth it. Good luck.

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Thanks for the advice Carnival. How would you go about getting a second opinion please? I would be wary of annoying my gp or consultant at the moment because some help is better than no help at all. I already feel like I have been cast adrift. When I saw my gp just over a week ago he actually said that he had already spent 30 minutes discussing the situation with even though it was a different appointment and the bronchiectasis had not been discussed at the time he was referring to. Carolx

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When you have Bronch, you have to ANNOY, Annoy, Annoy.

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sorry, got you mixed up with the Canadian lady who has had awful fires around her all summer ( this old brain takes time to wake up). But do stay in on Bonfire Night. It's not worth it!

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I never even gave staying in on Bon fire night a second thought, I've always taken my grand children to watch displays etc. I thought as long as you wrapped up with a scarf round your face all would be well, I'm obviously going to have to take things more seriously. X

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We are all different and it depends how it affects you. Don't stop yourself enjoying going to one if you find that wearing a scarf protects you. . I used to go to bonfires until about ten years ago. Now I stay away from any smoke and I don't like the cold and crowds! I used to take it for granted that in the days following bonfire night I would get an exacerbation - it used to be in the air generally a lot more I think. I wonder if there are less bonfires now.

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Yes Littlepom I think your right at least where is live there used to be all the organised bonfires where you knew it would be safe to take children, then there used to be bonfires that people had arranged themselves all over in different places, I've noticed that there the ones that are disappearing, the council come along and take them away for whatever reason I'm not quite sure, could be to close to people's houses or whatever, I never did go to those anyway. I also don't like the smoke now and haven't for sometime. I'm hoping that my grandchildren's mams and dads will take them this year instead of me as I really don't like going out on a night anymore. I take them all over through the day when I'm well I really love to, but night time well at least after seven I really am a drab. I was reading your profile littlepom and I'm so sorry you have so many health issues too. I hope you manage to have some YOU time. Take care. With love. Xx

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thanks Maureen. I pace myself very well - so well that other people on't notice it and don't think that there is anything wrong with me! You can't win. xx

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You must let them notice or no one will ever offer to help you. Sorry I took so long to reply, I took my grand children back home this morning to try to go to church as I've never made it for a few weeks now, well I made it but thought I was going to pass out, I never heard a word that the minister said, couldn't wait for the service to finish, but at least I didn't fall asleep either lol. Hope your having a relaxing day. Sundays is usually anything but relaxing for me as my whole family usually calls but when I got back after church got straight on my nebuliser came downstairs to start making dinner the phone went first to say my eldest daughter didn't want to come cos she had cold and didn't want me catching it. Then another daughter phoned to say not to expect her today as her back was really bad and couldn't drive, she has Sherman's disease bless her and she is only 32 diagnosed at 7. So we all sort of help her. Then I got a text message from my son to say he's doing a job for his in laws so he wouldn't be bringing the children as his wife cant drive. That only one left another daughter and her partner and children who always come on a Sunday not always for dinner. It usually tea time, unless she gets company herself and guess what (Horray) She got company so I have a totally free day. Even my husband wasn't in when I got back and still isn't, see so some preyers do get answered lol. Hope your ok, take care. Xx

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I live in East Sussex. I have a diagnosis of asthma, mild COPD and borderline Bronchiectasis. I asked to be referred to a consultant following regular monthly infections and it was he who made the diagnosis of bronchiectasis, although, to be fair, my COPD nurse had said she wondered if I may have it. In his letters to the doctor he has said to treat me as a bronch patient so I have antibiotics and steroids at home. He has considered a prophylactic antibiotic but rejected it due to my atrial fibrillation which could be made worse by it, so I'm still getting the infections but do regular postural drainage which helps, and also have the meds to hand to use immediately I need them.

I think your GP seems ignorant of the right treatment, I'd ask for that second opinion.

xxMoy

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Thanks MoyB, for the advice and information. Its much appreciated. Carolx

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Carol it sounds like you and I are both in the same boat. I also have bronchiectasis and I wrote something that I thought was pretty dumb today too LOL. I thought I was getting a lung infection and I thought because of my doctor giving me prednisone a few weeks ago and me not taking it that maybe I should pick up the bottle and start taking it. But like you I wouldn't know what to do if it wasn't for this site.

Do you have bronchiectasis as well as COPD? Because my doctor seems to think COPD and bronchiectasis are one and the same and they're not!

It seems to be the cold weather that really gets to my lungs I'm sure it doesn't do as well. I can't imagine getting diagnosed with something as serious as this and have someone give you out a handout, sometimes I think they don't earn their money at all!

Keep on checking back on this site everybody is so knowledgeable. This is how I get all of my knowledge about bronchiectasis LOL. Hope things work out for you God bless

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