British Lung Foundation
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Question on bronchiectasis..

Hi .. 2years ago I recently found out from my Gp that I had a mild focal bronchiectasis, at the time of diagnoses the dr from the hospital never explained what was wrong, all I got told at that time was i had a enlarge bronical tube that was possibly a birth defect, nothing else mentioned i was discharged from that dr from that hospital, over the last 2 years I have had 5 chest infections, struggled to get medication for the infections from my Gp, until a new Gp took my case & asked me to come to see her, I was unwell at the time with yet another chest infection, she arranged for me to go back to the chest doctor as she was concerned about my breathing, she also confirmed to me that I had been diagnosed with bronchiectasis which was all news to me, yes it had been diagnosed 2 years earlier but i was never told my gp at that time had a letter from the hospital i had attended but no one had told me, so i asked my new Gp for a print out of the letter which said I had 2 dilated airways in the middle lobe of my right lung, so for over 2 years I have had no medical help for this condition or medication, have had chest infections so bad I have coughed up blood, no flu injections to protect me against illness, im scared to death as today I had an appointment at the same hospital that saw me the first time, a different doctor saw me and said my condition is serious, and has requested a ct scan to see how badly damaged my lungs have become in 2 years... don't know how long the wait will be for the ct scan,but I hope it is not ages as im now terrified,im 49 years young with asthma, and a sever lung condition that I was not aware I had until very recently a week ago to be fair, gp new so did hospital 2 years ago as ct scan was done then to confirm.... any one have any good helpful advice to offer...

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22 Replies
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Please do not be scared. I was diagnosed with it too 6 years ago along with other health problems. It is easy to manage and control, Ithink you should give the BLF a ring and chat to one of their nurses also they have a leaflet about it too.You have come to the right place for help and support so have made the first step in the right direction Honestly you will be fine so please do not worry Best wishes Julie x

Hi siss, I am so sorry, your story is typical of they way bronchiectasis is overlooked, very few GP's seem to know much about the condition I have found in the past. You defo need a flu vaccine each year but don't be scared, there is plenty you can do to gain control and feel well again.

I have bronchiectasis and asthma from birth (64) and half my left lung removed age 23. The most important thing is to keep your lungs as clear of mucus build up as possible, so bugs can not get a hold. there are a few gadgets to help with this.

Ask to see a lung consultant, they will arrange for you to see physio to show you how to "drain" your lungs at home each day, like people with CF do, it's ok when you know how. Also they send your mucus sample to the lab to identify which bug is causing the infection, some antibiotics will not work on all the bugs we get.

your ct scan will give the info they need and get a copy, nhs only keep them 8yrs, there is no record of mine now as I did not know this. thankfully, I am much better now than when younger, I look well. there is a lot of help now but it takes time to understand how to get it and use it.

Hope you get the help you deserve siss.

su

Hi .. thank you for your kind words of support I do feel alone and scared to death, I thought I was dying... I do not have much faith in the gp or hospital here, I will ring the blf for help. thanks again.x

Hi again, yeh, agreed, been alone and scared many times, didn't have faith in gp's and hospital, they were/are in the dark too but what alternative is there ?... have faith, I have found ways to manage my condition, feel and look better than "fit people". Ask the right questions and you will find the answers.

su

should read... what alternative is there?... Plenty !

I have bronchiectasis and asthma, which I have had for years. I have had chest infections.

I have a rescue pack. If you smoke, good idea to stop. You might like to consider pulmonary rehab - see your dr. Loads of info. on the internet.

Many thanks hun for your reply, as more people come forwards the less I feel a lone which is a good feeling. thank you so much for your reply.x

I also have asthma and bronchiectasis. I have had asthma for years but was only diagnosed last year with bronch. I can still lead a normal life. It's a shame the Drs have not been more helpful. After I came to terms with the diagnoses I wrote a list of questions for my GP and consultant. I have also benefited from info and advice on this site. X

many thanks for your reply.. I have sat today and wrote a list of questions I want answers to from my Gp and the hospital, I read on a website just a moment ago our lifes are 7 to 9 years long after diagnoses.. is this a true fact???

I would not take too much notice of some of the websites especially the american ones, they are scaremongering. Please do not worry you will be fine and will get a lot of genuine info here to help you. It can not be cured but can be controlled. It is impossible to give a prognosis as every one is different. Have a chat with the BLF nurses and request one of their leafleat. Best wishes Julie x

Me too - have asthma (20 plus years) and bronchiectasis (diagnosed two years ago). But I have been much luckier with my GPs and Consultant than you. You have already had some good advice and please take up the suggestion to talk to a BLF nurse to go through the questions you have already and to ask for suggestions of what else you might need to know. The nurses are really helpful in making sure that you get the best out of an appointment. Over time I have got better at managing exacerbations and generally feel fine and lead an active life and I am in my 70s. Keep in touch and let us know how you get on.

Lesley

Once again many thanks for all your help & advice, I have an phone appointment tomoz with the bhf nurse, so here's hoping fingers & toes crossed I get some of my questions answered, I don't smoke or drink to date I have lead a healthy life style, I still weight the same weight & wear the same dress size I did when I was 18. this illness has come as a great shock to my family and myself, I became a gran for the first time in January it has been the proudest moment since my daughter graduated uni.. I guess what im trying to say is I think I will need a lot of support from you guys over the next few months, its as if my whole world fell apart, I had no control left feeling a lone, I think slightly depressed to, worried because I got it into my head I wont live long enough to see my gran daughter grow, im sad because ive asked myself why me. I feel like im grieving for a life ive lost but ive not lost it yet.. its a strange feeling and hard to explain, sorry you guys this is depressing, im off to bed, I will keep in touch, xx

Night night sissy pants. X

HI guys & girls... a new question for today. spoke to blf nurse, she says I need to get a honey that's £20.00 a pot but I may be allergic to it as it has pollen in it and I have allergies to pollen... any advice, on if it is known to work to boost immune system, also could I put it in tea instead of sugar as I really don't like honey that much... as well as taken exercise, hmm. im self employed seamstress I wok all day and most of the night, not much time for me let alone exercise, im not fat or a sofa potatoe, just not sure when I would get a chance to fit in anything I have dead lines to meet all day every day I work 7 days a week... healthy eating im ok with I have to start eating break fast, as have never done so.. any advice on what exercise I could start with.???

hi again, sounds like manuka honey which kills some bacteria, mrsa ect. I can't afford manuka and find local raw unheated honey is very good.

Also, I only have any raw juice and unsweetened live yoghurt for breaky, I go with nature, if I am not hungry then I will not eat !.. even if so called experts are telling me to.

su

Hi sissypants - I also understand how scared you feel, its natural. I have had lung probs all my life and it was finally identified as bronchiec 4 years ago. Since then I have been (very) up and down, with long periods of being ok and generally shorter ones of not being so good. Ask all the questions you can think of from your consultant/respiratory nurse, they are the only ones who know any answers. You will, strangely, get used to it all and live life virtually as before once you understand it, I promise. ( There was a useful short video on the BLF about a week ago with a consult and nurse and many questions, Can anyone who saw it please help by letting her know where to fund it?) Yes its a nuisance but you will be fine. I unfortunately suffer periodically with pseudomonas, that's a real xxxxxx! as it got a hold before it was identified due to me not going to see dr/consult quickly enough as I was going round the world at the time (abs brill)!! If feel rotten ALWAYS ask for sputem test to avoid this happening to you. Has anyone else experienced pseudomonas as a matter of interest? Take care. xx

Better late than never - sorry but have been searching the archives for you and have finally found what I was looking for (thanks to suggestions by others) You should watch the video on bronchiectasis that was posted by Athar from the BLF - see page 21 of BLF blogs dated 30 may 2012. Itis Bronchiectasis On Line Surgery by Royal Brompton Hospital and you will I hope find it very informative - I certainly did. All the best.

Hy Sissy,

I'm really sorry to hear that! Here is my tip: My Grandfather has bronchiectasis as well. We went to try the salt cave in Tunbridge Wells. They doing salt therapy for people who has different respiratory and breathing problems. Obviously, It's more serious than a cold or sinusitis, so he needed quite a few session, but he is really pleased with the result! He can walk longer distances now, and his lung capacity been improved a little bit. It's a drug free therapy, I think you should have a go the first session is free! Take care!

Hi Dusandra, do you think you could post some thing like this info on a new post?

This original post is 9 months old but people have often expressed interest in Salt Caves. I myself had a £10 voucher to try the same in my area but it' expired (& now I need it, sods law)..... so your reply was very intersting for me. All the best ...... P

I apparently have right middle lobe bronchiectasis. Don't worry I am 64 and am well 90 percent of the time. Get a flu and pneumonia jab. Get sone

Physio, advice and you will be fine! It seems I may have had this since childhood.

Hi Sissypants, a few months ago I found out I have mild emphysema, copd and mild cylindrical bronchiectasis. My doctor did not seem very concerned and told me I would have another ct scan in a few years. I am looking for a new doctor. Anyway I wish you the best of luck and please keep me posted as I will with you. Maybe together we can help each other.

I was diagnosed at 45. 11 years ago with very limited information. I am afraid it's trial and error of how to manage your condition. Don't be afraid to send in sputum samples to your chest pain clinic and keep the relevant antibiotics in and ask to see the physiotherapist so she can show you how to do breathing exercises which I couldn't live without. My chest become very heavy if I don't clear my chest daily. Sounds daft but hoovering is a great way of loosening things and laughing too !! It's so so hard to try and stop coughing when you have a huff as I call it. If you have any questions don't hesitate to ask. I'm happy to help or pass on my experience of this horrible desiese. Take care and rest if you need to. Energy is precious when you have broncesatisis😃

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