Newly diagnosed

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Hi everyone , I was diagnosed with this condition in April . I contracted Pneumonia in January , took a long while to shift , throughout , had a cold sensation running down my left side of my back ( which I still have ! )  I had another Chest infection in April , but in between I had just not felt well .i had been to hospital for X-rays and numerous blood tests . In April , after the last chest infection , I demanded further testing , was sent to my local hospital , where basically I was tested for everything . They decided to do a CT scan , which confirmed Bronchiectasis . I had never heard of it before , was told by he consultant ' it's very mild ' & sent home . I went back to GP & asked for a referral to see a specialist , which I got . He didn't re-do a CT scan , just looked at the one I had done before but said in his opinion I had Moderate Bronchiectasis . I was referred to a physiol & am going back to see him next month . 

Reading this forum , people with supposedly Mild Brinchiectasis seem to have far worse symptoms than I ? I do know you take this disease on a day to day basis & having felt so unwell for the 1st 4 months of this year am very grateful to feel 1/2 way human again .

Do you think I should go for a 2nd opinion ,or is anyone else with the Moderate level , largely symptom free ? I do chest clearance 2/3 times s day if I feel the need ( Ihave always suffered with catarrh  , which Consultant things us the cause of this for me , have had 2 procedures on my nose to help , neither did ! Am now on a nasal spray & carboceistine tabs , made a huge difference to my catarrh ! )

I'm having a pneumonia & flu jab this year too , when should I get this ? 

Am pretty concerned by thus diagnosis , so any tips welcome !

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  • Posted

    Hi Bricklayer,

    I was diagnosed May 2015 with mild to moderate bronchiectasis.  Like you, I had been unwell for sometime, had many chest x-rays  which were always clear.  It wasn't until I saw a new GP that he sent me to consultant and ct scan which showed bronchiectasis in right middle and lower lobe.  I have had two sinus ops - didn't help.  I have come to the conclusion that we are all very different in the way bronchiectasis effects us.  I cough mostly a.m. little sputum, tiredness an issue and get breathless, but I count myself lucky as others on this site have more symptoms.  My GP told me not to dwell on whether my bronchiectasis was mild/moderate concentrate on living my life, keeping well, clear mucus daily, exercise when possible and drink loads of water.

    I will have pneumonia and flu jab in the autumn.

    I too was scared and concerned by my diagnosis but am trying hard to keep positive and I wish you well

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    • Posted

      Thank you Trish, its good advice from your GP , I have to admit I was a little shocked when the respiratory consultant said mine was Moderate, when the Casulaty consultant came up with 'Very mild'....

      I have reconvened my exercise programme too ! 

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  • Posted

    You will definitely feel so much better after joining this forum,  if nothing else there is always someone worse of than yourelf.  All the advice Trish gave you is good,lots and lots of water and excercise will help to shift the mucas which is  such a releif.

    I have had broncheactesis for the past ten yesrs and have just been prescribed carboceistine for the first time, which I find very helpful in making the mucas easier to clear.  I was prescibed this just because I saw a differient doctor.  You are well on your way to managing this horrible disease  good luck

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  • Posted

    Hi Bricklayer and a very warm welcome to you, though sorry you have been dx with bronch.

    Good for you for changing a consultant you weren't happy with.  Not sure why you want to get a third opinion though.

    It must be quite hard to get a dx from being fit and well.  I didn't have that as I have had bronchiectasis all my life.  I donj't think one is worse than the other, just different.

    I note you say you do mucus clearance confused but then you added 'if I feel the need to'.  You should do it every day.  Mild, moderate or severe our aim is the same i.e. to keep as infection free as possible.

    I would check with your GP re the pneumonia jab - I would think you could have it whenever.  The annual flu jab however, is usually given around October.

    Any questions please ask away - there will always be someone around.


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    • Posted

      Hi, my only reasoning for wanting another opinion is, this was first diagnosed by the Ambulatory Care Unit at my local hospital, this is basically a unit they send you to, if they have no idea what the situ is, and basically test you for everything, its manned by Casualty Doctors, the Doctor here assurred me that my condition was 'very , very mild', that was his opinion having seen the CT scans. When I was referred to see the respiratory Consultant, when he viewed the same scans, he described it to be Moderate. As a lady mentioned in another post, her GP advised her not to concentrate on levels, which, is probably good advice !

      Am I right in thinking, that if you keep your chest as clear as possible, you are less prone to chest infections , which in turn reduces the damage to our lungs?

      I do appreciate your reply and advice 

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  • Posted

    Agree with Trish not to be worrying whether it's mild or moderate. 

    The A and E or ER department are not really geared up for chronic conditions and I would defo go by your respiratory consultant.

    It is true that the more gunk you can clear from your lungs the more likely you are to keep some infections at bay.  When you think about it some of our bronchial tubes are dilated and the sputum is not moved along easily and if it congregates in the pockets then it will become infected.  The best thing we can do for ourselves.

    Some folks use mucus thinners to help.  I nebulise hypertonic saline 7% and it is very helpful, although as I have asthma, if I am particularly wheezy I will use saline 0.9%.  You might want to ask your con if he/she considers nebulising a bronchodilator and/or saline would help.

    You can live a good life B with bronch - it will be different, but good nonetheless.  Again ask away if something is concerning you.


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  • Posted

    Dear Bricklayer,

    Suggest you make contact your GP and ensure you are down on the practice list to be informed/invited, as to when they embark on their annual immunisation injections for flu/pneumonia...they send out reminders and suggest dates availabe, very straightforward - usually set on a Saturday to accomadte people who have work in the week, simple and quickly sorted...x Helen 

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  • Posted

    Bricklayer, I was diagnosed with mild bronch last fall.  I also had asthma as a child, so I guess I "have asthma" as well.  When I was diagnosed, it was by a cardiologist and he referred me to a pulmonologist.  In the meantime, I got online reading about this and started self treating with mucinex, which is a mucous thinner.  Once I got the gunk out of there, I could breathe better and had no more chest pain.  Funny thing is, I was really fatigued almost from January to the Fall.  I usually exercise much more in the summer, but was just feeling too tired most days.  Fast forward to now--I am on an inhaler and I make sure to try and keep the mucous out every day, also drink lots of water.  I walk and do aqua classes.  The aqua classes and/or swimming really gets the musous moving out of there.  I no longer feel the fatigue I felt last summer, thank goodness!  I went on a trip to Europe with my daughter and walked between 3 and 10 miles daily for two weeks and was able to keep up and only had one day where I felt out of breath and it was raining that day.  When I was a kid, I always had asthma worse on rainy days.  

    Bottom line is, I think water exercise is the key for me to keep the chest clear.  I also think anything you can do that gets your heart rate up (cardio) will also get you to use all of your lungs and help get the gunk to move out.  Having said this, I know some have it too bad to handle much cardio, but if you can, you should make the effort.  I also drink lots of lemon water daily.  

    I am in my early 50's and have always been pretty active.  Just adding that because I know everyone has their health issues and if you were never active, I'm sure it's doubly hard to start that now. Good luck to you!

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  • Posted

    Hi bricklayer and welcome to the wonderful and wacky world of Bx. 

    I can only really think of a few things to suggest. Firstly, don't worry about "only" having had one CT session. HRCT - the gold standard for diagnosis of Bx - are effectively very very heavy duty x-rays. No doctor likes giving them more than necessary. If the consultant wad happy to make the diagnosis from it then you wouldn't need another one for quite a few years yet hopefully. 

    As for moderate and mild's still Bx and the fundamentals apply...

    - Keep clearing the mucus. Bx is the classic vicious circle. Infection leads to inflammation leads to injury leads to inflammation leads to infection ... Etc Etc. As several of the other guys have said, clearing the mucus is good to stop bacterial breeding  grounds as well as frankly making you feel better.

    - Always get annual flu jab in the autumn and make sure you're up to date with pneumococcal jab, which can be taken whenever. Both will be free as a Bx sufferer.

    - If you get an infection, fight immediately. You should look for three things ... Mucus production increases, mucus color changes through clear to creamy to green, peak flow drops / breathing harder / wheezing increases for - say- 3 days. If this happens then go to doctor, give them a sputum sample (cough up into a sterile bottle) and immediately start emergency antibiotics.

    I have found that most doctors are cool with giving you "emergency" antibiotics to keep at home - if they are unclear about Bx then point or it's basically like cystic fibrosis from a king point of view. They will then "get it".

    Ithe antibiotics should be tailored to whatever you tend to catch - hence importance of always getting tested. So when you give sample, start emergency antibis immediately.

    They will then test sample and tell you what if any different antibiotics you need (different bugs are sensitive to different things). 

    All of this is standard care guidelines from British lung foundation, NICE etc so should be no problem.

    Don't worry about the diagnosis. As my consultant said, "it's not like you've got the Bx my grandmother would have had". Early, aggressive use of antibis had massively improved the outcome for people with bronchiectasis.

    You'll end up taking an awful lot of antibiotics and other stuff .... But it's all for the best.

    Good luck, stay well


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  • Posted

    Apologies, spelling autocorrect got the better of me. When I refer to cystic fibrosis, I do not mean from a " king" point of view, but "lung" point of view.

    Obvs ...

    Sorry about that


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