Bronchiectasis!: Hello all, I'm a 3... - British Lung Foun...

British Lung Foundation
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Bronchiectasis!

Lee2k182
Lee2k182

Hello all,

I'm a 34 year old non smoker that's just been diagnosed with early bronchiectasis. I was informed in an unconventional way by a friend who works in radiology, after I had my CT scan (read my report) so I haven't spoken to my respiratory consultant just yet about it.

So here I am just looking for some advice and to learn more about it. Obviously I'm gonna start with the 2 most asked questions...

1. Is this a progressive thing- as in will it get worst no matter what or only if I get an infection?

2. Life expectancy- am I being dramatic by asking this, am I expected to have my life cut in half or can I live a normal life expectancy?

Obviously I need to discuss a lot with my consultant, but that's not until another 3 month unless she wants to see me earlier, I'm currently waiting on her call.

Thanks

Lee

19 Replies
oldestnewest

Welcome Lee

Be aware radiologists are not suppose to diagnose patients, even if they know the patient personally, the lung specialising consultant can though.

You will probably get a good idea about things by reading some of BLF's pages on their main site (although you may want to delay reading up on it until you have an official diagnosis from your consultant.

blf.org.uk/search/site/Bron...

Also you can ring the BLF helpline during working hours and they can advise you further on the sort of questions you may want to ask. ( I think there is a page on "What to ask your consultant" on the BLF home page too - just use the search box)

You do need to avoid infections wherever possible.

Hope some of this information is of help

Best wishes

Hanne62
Hanne62
in reply to Bkin

The consultant's diagnosis will be based on the radiologist's report though. These are highly qualified people, they know bronchiectasis when they see it.

Lee2k182
Lee2k182
in reply to Bkin

Hi bkin, thank you for your reply. I understand that my diagnosis isn't official until it comes from my consultants mouth. However the radiologists report is quite clear cut on what is seen. And my report clearly states "conclusion: early bronchiectasis with no evidence of emphysema, idl, OB or boop." As a healthcare professional myself, that's pretty conclusive especially when the gold standard for diagnosing bronchiectasis is CT (I did a little bit of reading on that earlier). I understand I need to talk with my consultant about it all, but I don't know when that will be, so for the (pretty much certain) chance that it is bronchiectasis, I'm just trying to take in as much info as I possibly can until I get to see her.

Thanks for pointing me in the right direction 😁 I'm just trying to stay away from that scarry place they call Google.

Welcome home Lee, yes this is your new home now, not the Asthma forum (although excellent for Asthmatics). You will meet the kindest, funniest and most helpful folk on here, although not all Bronchs. Some are a bit bonkers 🤔 but there is a lot of warmth, love and downright brilliant knowledge. Best wishes. XXX

Ah home sweet home 😁 I'm looking forward to speaking to everyone. Thanks for the warm welcome.

Just echoing the welcome, Lee. There are some very experienced bronchiectatics (?) here, who've been there, got the T-shirt etc. eg Littlepom and cofdrop-UK I hope they won’t mind me tagging them into this post from a new bronch wanting advice & a positive attitude!

The BLF telephone helpline is great too. I've only ever phoned it twice but the respiratory nurse phoned me back both times & had answers & information at her fingertips. 03000 030 555 Mon-Fri 9-5. I expect they're uber-busy atm tho.

To answer your two questions

It will only get worse if you continue to have a lot of exacerbations due to mismanagement. It is the management which is crucial in this. I have had it for 67 years since I was three and my lung function, given the original damage, has only declined in line with my age, as would that of a healthy person.

I have just told you that I am still here at 69. I have had a very active and full life and was continuing to do so until I had to stop my activities to separate myself because of the virus. I am not an invalid and neither will you be.

When you get your proper diagnosis, your consultant and their physio should teach you how to control and manage it on a daily basis. The consultant should also tell your GP which antibiotics, their dose and at least 14 day course, to give you to keep at home to begin as soon as you feel an exacerbation coming on.

There are quite a few bronchs on this forum who will be happy to support you and share their experience.

Lee2k182
Lee2k182
in reply to Littlepom

Hello littlepom, I really appreciate your reply and advice, thank you. 67 years is amazing, I hope I get that kinda time to see my kiddies grow and do things with them, that's my number 1 goal right now.

Right now I'm unsure about the people that will be managing my symptoms, my GP surgery have been useless, they kept telling me there was nothing wrong and it took me practically begging to get a referral to respiratory. Now my respiratory consultant seems nice but I've only met her 3 times, I don't even know if she specialises in bronchiectasis 🤷🏻‍♂️ but I know that's a question I need to ask her. In 3 month 😒.

So do, or did you (in early days) have many persistent symptoms? My only symptom was a tiny wheeze on forced expiration after my chest infection. Now for the past 5-6 weeks I feel a tiny bit breathless when walking but not all the time, just now and then and it's not intense, I'm just aware of it. Just like breathing in humid air. I don't feel like I have an infection or anything. I don't even have a cough.....

😊

Your symptoms don't correspond to my experience of bronch or the general description. The most usual symptom is mucus, in varying amounts, which has to be emptied from the lungs every day. Of course I am not a doctor and can't diagnose so if I was you I would hold patience until you see your consultant.

I can tell you that if you gave bronch you will see your children grow up and your grandchildren. There are members on this site who have had it even longer than I have and have brought up children and had careers. I have two children in their forties and five grandchildren. I'm afraid that most GPs are hopeless with bronch and from reading other posts, not much better with other lung conditions. One step at a time. See what the consultant says.

Lee2k182
Lee2k182
in reply to Littlepom

Yes, I know I need to speak with my consultant 1st, I'm just a little impatient at the moment 😬

However having seen my CT report, it does say "early bronchiectasis", I just beat my consultant to it 1st, hence why I'm here. I have seen somewhere that you can get 'dry bronchiectasis', so god only knows what that is 🤷🏻‍♂️ maybe I have that variant lol.

My only other tests were obstructive spirometry with some reversibility, hence the original asthma diagnosis. Maybe I have both, however the steroids (inhaled and oral) haven't done anything for me, so I'm confident I don't have asthma, nor do I have a trigger or typical asthma symptoms. My CT ruled out emphysema, Broncholitis Obliterans, BOOP and IDL and apart from bronchiectasis, my lungs were clear.

Hopefully she will call me tomorrow or early next week and I can find out a bit more.

I hope that you get your answers soon. Yes dry bronchiectasis is a mystery to me too. Steroids are not a treatment for bronch unless there is asthma present with it. I have a fostair inhaler which has a tiny bit of steroid which helps to keep inflammation down but I did not start that until 10 years ago.

The important thing about bronch is that we are all different. This is why we need a consultant who is a bronch specialist.

Do let us know how you go on.

Hi Lee, your experience sounds very similar to mine. I’m now 58 and was Diagnosed two years ago after a chest infection that knocked me off my feet for three weeks. Doctors kept saying nothing wrong until I went in one day and my oxygen was 84% and was sent to the hospital and after a scan was properly diagnosed.

Since then I have not really suffered any major problems except shortness of breath if I exert myself too much, (the most noticeable symptom for me is that I can’t laugh without erupting into a coughing fit). I find my chest starts dry and a little tight first thing in the morning and as the day goes on it loosens up and my cough becomes “wetter”.

Really don’t worry, I have spoken to many people with bronch and many don’t let it affect their lives.

Obviously with things how they are at the moment it doesn’t hurt to be careful and I have taken the decision to remove myself from work and stay indoors.

Take care

Lee2k182
Lee2k182
in reply to IanW1962

Hi Ian, thank you for your reply.

Yes I definitely wake up with a 'dry' sensation in the morning and a little bit more wheezy, then as the day progresses it eases up. I'm not sure if that's because of the symbicort I'm taking for my 'asthma' (that I don't think I have) as I haven't not taken it yet for over 3 month. I do find I clear my throat a lot more though, that's the only thing I get phlegmy with this.

I'm just relieved it's nothing more sinister, such as COPD so after spending months stressing over that, this is a bit of a relief in comparison. I just need to figure out how to manage it now, I'm expecting a call today from my consultant so she can tell me my CT report, that I already know about 😬 so I'll bombard her with a million questions.

Hi Lee, I'm 61 and was diagnosed with bronchiectasis almost 2 years ago after suffering continuous chest infections for 2 years. It took an absolute age to get referred to the Respiratory Team and at the time of my diagnosis I was still continuing to go down with regular chest infections. Knowing that each infection could cause more scarring that could make me prone to more infections was very depressing. I had been a very active person before I started to get ill and it felt like my life hereafter was going to be that of an invalid. Black days indeed.

Now the good news. I've not had a chest infection for over a year. I no longer have the excess of mucus. I'm not at fit as I was before I became ill but I'm so much better than I expected to be.

All I can say is that I joined a walking and exercise group but took it very slowly to begin with. I'm no long distance walker but I no longer have to stop and sit down after 10 minutes.

I feel very ill informed about bronchiectasis. My consultant told me that I no longer need attend his clinic because I've been so well. I read recently that there are 3 types of Bronchiectasis but I have no idea which one I have.

So, things can get better. Best wishes to you and hope you see your consultant soon.

Hi Lee2k182 i have only just been diagnosed myself with mild bronchiectasis about 4 weeks ago among when all this madness started. It was discovered (shadow) through a private medical for migration yes hopefully my dreams wont be shattered of living in our paradise. Was referred to hospital had CT scan as originally thought it was something sinister, anyway my symptoms are similiar to yours. I dont smoke, i had a cold in January and a sinus problem which ive never had before this lasted about 3 weeks, since then had a cough got worse with breathlessness on exertion even going up stairs, but i wasn't coughing anything up, when i saw the consultant he diagnosed and gave me antibiotics and said he wanted the CT scan repeated in 3 months time, my cough went and i feel much better. I had to do a sputum test all for me hopefully eventually leaving UK this was so difficult as i dont have anything that i bring up, i did however notice little dots of blood but i know that was from over straining on the 3rd day. Ive never had chest infections but do feel a bit wheezy depending on air condition and what im doing but i just carry on. Due to the coronavirus not much was said to me and i left the hospital so im a little unsure of whats next. I have being worried about if im at risk with this coronavirus as im a key worker for autistic young adults. I have read alot on the net and on here about the condition and it seems i will be fine long term and to keep active.

Lee2k182
Lee2k182
in reply to Rose-bud68

Hey rose, yes your story does sound familliar to mine. I'm a key worker also as I work in a hospital as a radiographer. I technically haven't been officially diagnosed with bronch by my respiratory consultant, but working in radiology I have seen my own CT report. Since this post I've still not heard from my consultant (probs due to current events), but I have had 2 other radiologist assess my CT (perks of my job) that disagree with the report of 'early bronchiectasis'. So I'm back in limbo until I see my consultant, who I assume, will make the final decision. It is obviously so early (if it is bronc) that it divides opinion and because of this, I assume I shouldn't really be symptomatic. No one really knows what's wrong at the moment. The last thing my consultant said, was I'm atypical asthmatic as I don't have allergies and don't respond greatly to steroids. Luckily my symptoms are only very mild, although persistent, and don't trouble me, they are more of an inconvenience.

As for covid, my partner who is a nurse has tested positive for covid and is isolating as we speak, so I surely have it also as we live together with 2 children. I have felt a little more tired than normal for a couple days but that is it. So even with my chest condition I haven't really been symptomatic. I think it effects everyone differently, I wouldn't stress yourself with it as you'll only leave yourself more susceptible to it.

I've done a lot of research on bronch to the point I've freaked myself out. My advice is do not Google it, it's contradictory. You're best sticking with looking at information from BLF and your consultant. I've learned there are multiple types of bronch effecting everyone differently. And most research that says your life will be cut are based on those with cystic fibrosis and elderly patients and those with co morbitities. There's a site full of bronc sufferers of all kinds at 'bronchiectasis r us', try googling that and joining and speak to the members there who live with this condition.

Best wishes.

Hi Lee thanks for replying, firstly thank you to both you and your partner and the rest of the NHS, i hope she recovers well, im sure she is a fighter also that you and your children will be fine. I hope you eventually find out what your scan actually does truly diagnose you with when you get to see your consultant, but im sure your armed with lots of questions. I am confused as i dont have any phlegm at all and is a dry cough with breathlessness but like you say there are multiple types of different bronchiectasis, i have mainly looked on the BLF site as i agree other sites can freak you out but to be honest im not a worrier "it is what it is" i just like to know. I guess further down the line when all this is over i will understand this a little more but saying that i have a fantastic migration physician who is also explaining lots to me, im just waiting on copies of the letter and CT scan from my consultant. Thank you and stay safe

Thank you ☺️ she is fine, luckily it hit her no different than a common cold, I know there's many not as fortunate.

Well, I don't even have a cough, never mind phlegm. I'm just wheezy and sometimes a bit breathless on exertion, although it's only moderate exertion, I can run just fine, I completed a 10km with no issues only a few weeks ago before we got locked up in our own home 😬 weird, I know. As for chest infections, I've had about 4 in my entire life, the worst one being the start of these symptoms.

Hi Lee sorry for late reply my husband has been poorlu but not the corona im pleased ro say, glad to hear your partner is doing good. Yes I'm definately similar to you, they asked for a sputum test well what a performance that was i nearly coughed my lungs up, little humour hehe, i will be interested to hear how you get on when you finally hear your results as i know i have lots of questions for my consultant too when i see him again when all this is over and i too will go armoured with lots of questions, its just knowing the right ones to ask but reading more here im learning. I do have a cough still but hardly nothing and as i live on the Moor the air is different and air presdures is when i find it changes slightly. Please keep me informed on your outcome :) stay safe and your family

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