Bronchiectasis!

[Lee2k182]

So, i had a HRCT scan today and was given my report pretty quick (benefits of working in the NHS), and I finally have a diagnosis. Early bronchiectasis. I dunno how I feel to be honest, relieved I now know what I'm working with, but not so much as I don't know much about it.

So if anyone has any experience with this condition, I would love to hear from you. Hints, tips, advice etc.

I don't really have typical symptoms, cough or mucus etc. (yet), just sometimes a little breathless (nothing major) and I little wheeze when breathing forcefully.

I haven't spoken to my respiratory consultant yet cos I've beaten her to my report, perks of the job again lol.

Thanks

Lee

[Hidden]

You could join the BLF group, healthunlocked.com/blf several very knowledgeable Bronchs on there. We'll look after you. Also, visit chss.org.uk/chest-informati...

It has the most amazing booklet to download, that you would find so helpful.

Another website you might want to look at is:

bronchiectasis.info/default...

Don't worry, you will get through this.

I hope your consultant is a Bronch expert, and not just general lung consultant.

[Hidden]

Good advice from Hidden Lee. Yes there are quite a few of us on the BLF forum, some who’ve had it since infancy & others like you who started with asthma & went on to develop it. Mine apparently has its roots in measles & pneumonia as a young child, tho I wasn’t dx’d until age 42.

Have a read of that CHSS booklet poems mentions, then ask away!

My top recommendations would be:

referral to a Bronchiectasis specialist;

stamp on any chest infections immediately;

as much exercise as possible, good diet, & plenty of sleep (improves immunity.)

Your aim is to stay mild as long as possible, stop the lung damage becoming widespread, & that’s hard work. So as soon as you do get any mucus you’ll need to learn airway clearance techniques from a specialist chest physio. Utterly boring but essential

[Hidden in reply to Hidden]

Hanne62, I had measles at 5, accompanied by Pneumonia. Diagnosed with late onset Asthma in my 50s, Bronchiectasis 3 years later. We could be twins, except I'm older than you.

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[Hidden in reply to Hidden]

Good heavens, so we could, yes! I was a sickly kid, lots of bronchitis, rarely went to school. Of course Bronchiectasis is diagnosed much more easily now, by CT scan, so they can treat it nice & early.

[Lee2k182 in reply to Hidden]

Thank you both for your replies. I was diagnosed with asthma for a whole 3 month before I made my consultant arrange a CT for me, cos I knew my symptoms weren't typical of asthma and low and behold....

So I don't know if I will keep the asthma tag or not, the steroids didn't do anything for me. I benefit only from a bit of ventolin now and then.

So before I go digging up as much knowledge online about this, I may as well start here with some basics.

Obviously I have 2 main concerns

1. Progression- is this a progressive thing? As in will I get worse no matter what, or is it only if I get an infection that will make it worse?

2. I'm only 34, non smoker- am I expected to have my life cut in half? Or can I live a normal life expectancy.

Of course this is something I need to discuss with my consultant but I won't be seeing her for another 3 month yet 😕

Thanks again

[Hidden in reply to Lee2k182]

It doesn't sound as if you have asthma, which is a big advantage. Asthma causes airway inflammation, which leads to mucus production, causing more inflammation - & chest bugs thrive in inflamed, moist airways. So, asthma is a catch22 for bronchs. I think this is why mine has progressed over the 26 years since diagnosis, but you're starting from a much better base.

1. Yes, it can be progressive, but you can slow progression right down or indeed prevent it by working hard to stay well. Unfortunately I've also got an immune deficiency, therefore very prone to infection, but if you lead a really healthy lifestyle (especially exercise) you can keep infections at bay. No infections* = no potential for lung damage = no progression.

2. I've never smoked either but have had lung problems since early childhood. Also my bronchiectasis is quite widespread, I have a co-morbidity in the shape of pseudomonas infection which is permanent, a fungal problem, and the low immunity. BUT despite all this I'm now 67 and not going anywhere just yet. So I'd say you're realistically looking forward to a long life of good, stable health

*Actually you almost certainly will get the occasional infection, but the key is to stamp them out with antibiotics before they can cause lung damage. I'm sure your consultant will tell you what to do. An ordinary lung infection lasting a week or two won't cause damage (just to reassure you on this point.)

[Lee2k182 in reply to Hidden]

Ha, thank you for such a positive response. I've never suffered from any chest issues, nor has any of my family so this is new to us all. I had 1 bad chest infection Xmas 2018 that lasted 3 month and since then, I've been having mild symptoms.

My CT reports that I have early bronchiectasis at the bases of my lungs with no evidence of anything else. So I'm guessing my chest infection caused this?

You've had 26 years of this? Wow, how are you with it now, if you don't mind me asking?

[Hidden in reply to Lee2k182]

Ooh Lee the gods are on your side Yes that chest infection will have caused it. Do you happen to know what the bacterium was? There are two sorts, gram-positives which are the bog standard ones everyone gets, and gram-negatives which are harder to get rid of. Sounds like the latter. They can cause biofilms around the lungs, difficult for antibiotics to penetrate so the bugs hang around causing trouble.

As for me - well despite my lung history & the complications I mentioned, with care from a great consultant I was able to work until age 60, had a family etc. Occasional hospital admission for intravenous antibiotics but other than that a full & normal life. Very unluckily, 2.5yrs ago I contracted another persistent gram negative bug which left more damage. I had a really bad winter and have been trying to claw my way back ever since. I won't recover my previous lung function, but I'm making slow progress. I no longer exercise outside if it's cold, but have bought a treadmill instead. I have to do a lot of nebulising of bronchodilators & antibiotics, and daily physiotherapy which I've done for years (so tedious!) So my life is more restricted now, but I've adjusted and found pleasure in different things. Life's still good & I'm in it for the long haul

ps no don't google, especially US sites, which seem to include bronchiectasis under the COPD umbrella, so it's confusing. Stick to reputable UK or EU ones - patient.info, nhs, BLF, CHSS. and European Lung Foundation to name a few. EMBARC too.

[Lee2k182 in reply to Hidden]

I love your positive outlook, hats off.

I didn't really think anything of my chest infection at the time, I had it for 4 weeks, until I coughed up a tiny bit of blood that prompted me to take a little trip to my GP. Had an xray- all clear and was given some amoxicillin for 7 days. One week later, still had my infection. So I took a trip to my A&E (only cos I work in a hospital and knew the staff, so just wanted then to have a listen to my chest), who then prescribed me a different abx (can't remember but it was a common one a bit stronger than amoxicillin) for 2 weeks. Still didn't work. Infection disappeared a month later on its own, but left me with an unwanted wheeze, 12 month later here I am.

My only symptoms are a bit of a wheeze and a congestion sensation on my chest. I don't even have a cough and the odd once or twice that I do cough, it's dry as a bone. Odd?

I've already joined a gym- now I have an excuse to keep me motivated. I used to exercise a lot in my late teens to mid 20s, then had 2 children at 28/31 and just never found the time to do anything so quit all exercise. Regrettably now.

[Itswonderful in reply to Hidden]

What’s the treatment?

[Hidden]

No, it's not progressive. Hanne mentioned 2 members on BLF, one diagnosed when only months old, the other has had it since she was 5. Both in their 70s now. Obviously the more you learn about the disease and the better you look after yourself, the better (and longer) your life will be. Good that you don't smoke. You MIGHT need inhalers or nebuliser, and you will probably have chest infections, but they can be cleared up with the correct anti biotics. Which is why you NEED to have a Bronch expert as your consultant.

[Lee2k182 in reply to Hidden]

Oh thank goodness. Yes I've just switched over to the BLF page, thanks for suggesting that. I kinda just did a copy and paste there haha.

I definitely need to spend a bit of time researching this but at the moment I'm just clearing a path by getting some quick answers on the big, important things.

Google is so vast and contradicts itself over this condition, but that's understandable considering there's different variants and causes of it. Google is a scary, scary place that I kinda want to stay away from 😅

[Hidden in reply to Lee2k182]

Don't waste your time with Google for health problems. Just use those suggested, especially BLF and you will KNOW you are getting true facts.

[Lee2k182 in reply to Hidden]

Oh don't I now know that!! I've learned my lesson. I convinced myself I had COPD and went on a 2 week bender thinking I had only a few years left to live 😅

I suffered a level of anxiety that I've never experienced. Never googling anything health related again. Hence why I've come to these forums.

[Hidden]

I was diagnosed with early bronchiectasis a couple of years ago. It's worth asking what might have caused it. I was told it was my asthma, so I do my best to keep it under control and avoid things that exasperate it. They should give you carbocisteine (like mucodyne) to take every day to stop mucus building up. No reason why you can't live a normal life. I too don't have much of the symptoms but I found when I have coughs, I find it so much easier to get rid of the mucus with the carbocisteine and breath easier. Take care and look after yourself.

[Debbie2005]

Hi LeeI’ve just seen your post from 9 months ago. I’ve just been diagnosed with Mild Bronchiectasis (Xmas eve) when I only thought I’d got an annoying gastro reflux cough (with sticky mucus). As this has come as a shock my world feel likes it has come crashing down as I’m reading everything about it on google and the long term progressiveness is frightening me. Is there any advice you could give or reassurance you can provide after your diagnosis was given

[Lee2k182 in reply to Debbie2005]

Hello Debbie, a lot has happened in 9 month and since this post, my CT scan has been reassessed by 2 different radiologists and both have agreed that the original report on bronchiectasis was wrong. I clinically don't present with someone with bronc as I don't have any mucus production (maybe a tiny bit if I forcefully huff and puff), no cough and I've only ever had 1 bacterial chest infection in 35 years and my HRCT scan is so mild it's divided opinion. I was told my lungs are larger than normal (not hyperinflated, just anatomically bigger) and for air to travel to the bottom it's expected that my broncus would be slightly bigger.

My symptoms are an audible wheeze on forced expiration and some very mild shortness of breath on mind exertion. I feel fine on high exertion such as running, which is baffling doctors (if anything I breath the best whilst jogging). If it wasn't for the wheeze and mild obstructive spirometry, a doctor would tell me it's all in my head 😅

Anyway, I've read a lot on bronc and spoken to so many people with it, as well as health care professionals who all tell me to avoid Google as that's a source for the most extreme cases of bronc. With the correct treatment you can live a normal life with it, my work colleges mother is 86 and had it since she was about 10 years old.

The best thing you can do from now on is listen to people on here who live with this condition, treat any infections promptly, do your daily physio, EXERCISE regularly (this promotes a good immune response and keeps heart and lungs healthy) and take any meds you've been advised to take.

As for me now, I still don't have a diagnosis. Everything is coming back normal, except my spirometry and obviously my symptoms.

Please don't worry about having this condition, it really is a manageable condition. You just have to learn to accept the new norm for you with your routine with meds and physio.

All the best

Lee

[Debbie2005 in reply to Lee2k182]

Hi LeeThank you so much for your reply. I have been crying since Christmas Eve (as I have anxiety at the best of times) and you really have made me feel much more positive and better. I can’t compare exactly to yourself

Except I’ve had an irritated cough for about 12 months with a small amount of sticky mucus and coughing in a morning only. I had an endoscopy recently as the doctors really thought it was my gastro reflux and so did I, so after my CT scan on Xmas eve this came to a massive blow to me and I’ve thought ahead of the mildness and I’m thinking I’m near end of life as my dad died from a lung condition which was dormant most of his life but then accelerated without much warning, so this has made me worst. It’s the fact it’s manageable rather than treatable that frightens me. I’m so pleased for you that they have found out you have t got it. They also asked had I had pneumonia etc as a child but apart from probably a bad chest infection once a year I really can’t think what would of caused me to have this. Anyway thank you so much for your reply, you have put your text in such a positive way I feel slightly better for it. Wishing you all the best for the future!!

[Debbie2005]

Hi LeeAlso with it being Christmas, I can’t go back to my doctors yet to get referred to any specialist etc that can shed a bit of light on it and apart from this forum I don’t even know anyone close to me who has this condition.

[Lee2k182 in reply to Debbie2005]

There is a website you can go to called 'bronchiectasis r us', if you Google it you will get the link. Once there, just request to join and there are people on there that are very welcoming and so full of knowledge with this condition. There are some with mild all the way through to severe. Even with severe bronc, it's still very manageable.

There is also a section on here for bronchiectasis. This post was posted under the Asthma section, an error on my part.

But really, don't get to strung up on it. Even if you go to a trusted website such as The British Lung Foundation, it states that most people with this condition lead a normal life expectancy.

[Debbie2005]

Thank you Lee for being so helpful and reassuring, it is much appreciated