Bronchiectasis Diagnosis

[Yogaman83]

Just been diagnosed with bronchiectasis yesterday. Would be good to get some advice on how people dealt with this when first diagnosed? Thanks

[CDPO16]

Hi and welcome to our friendly forum Yogaman. I haven't got bronchiectasis but many forum members have and I'm sure they will be along to give you some advice soon.

[Alberta56]

Welcome to the forum. There are some very knowledgeable people here who can advise you if you have any queries. And people like me (diagnosed 2years ago) who can tell you about our experiences. I was very relieved to get a proper diagnosis after the useless surgery had been palming me off for ages with 'It's just a chest infection- have 5 days of amoxicillin.' It was good to be put in touch with the Pulmonary Rehabilitation nurses, whose attitude was very upbeat and who had lots of good advice on how to deal with the condition. I hope there is a similar team in your area. Bronchiectasis management involves a lot of self help- healthy eating and as much exercise as you can manage. Has anyone suggested you should learn breathing techniques? Self help means asking for help quickly when you start to feel ill- don't, repeat don't, bravely soldier on. Bronchi bugs need knocking on the head quickly or they can be very hard to shift. I'm afraid many people here have found that their GPs don't know as much about bronchi as they should and they ,the patients, have to be very persistent to get the treatment they need. One has to make adjustments to one's life style and one's expectations, but it's by no means the end of the world. Some people here arevery active. Best wishes and good luck. I hope you have a decent medical team.

[Yogaman83 in reply to Alberta56]

Hi. Firstly, thank you for the response. With regards to the breathing techniques, this has not been mentioned to me by my GP. I have a telephone consultation in May, so I'm hoping there will be more information provided then

[Alberta56 in reply to Yogaman83]

I should get in touch sooner. You need to learn breathing techniques and you need a rescue pack in case you get ill. GPs don't know as much about bronch as they should. There are instructions for the Active Cycle of Breathing on the BLF web site, if you can't get them else where. Also BLF nurses to consult.

[Milandra17 in reply to Alberta56]

On YouTube search "active breathing technique". Also you can get various devices to help clear your lungs on the NHS

[Patk1 in reply to Alberta56]

Great advideAlberta 56.If reiterate the controlled breathing - look up online+ id suggest practise it so u can use whn walking,going upstairs,whn struggling etc.also read/ask about lung clearance technique- its vital to get all mucous up at least x 2 a day.if u start with flare up/ infection treat it asap to avoid further lung damage x

[Kpacific]

I was diagnosed 5 years ago. Since I had never heard of bronchiectasis, I spent a lot of time on the internet after diagnosis. I wrote down questions for my next doctor's appointment. I learned from kind people on this site to ask about pulmonary rehab and 3x per week Azithromycin treatment. What I didn’t understand early on was the need for a twice daily lung clearance routine. I thought that if I felt okay and wasn’t coughing that I could pass on lung clearance. That mentality led to multiple exacerbations during my first year after diagnosis. You’ve got a learning curve ahead of you, but you’ve come to a wonderful site with many people, who are anxious to help. Best wishes to you.

[Lfcpremier]

Hi.I suppose it depends on the severity of it. I was told it would not impact on my life much 11years agobut that proved wrong. However, you can get into a regular regime & keep it in check .Initially a referral to a respiratory specialist will help. Was it diagnosed with a CT scan, needed to confirm you have it?

For me the daily clearance involve 2x2 carbocisteine to help loose mucous, ventolin inhaler to open airways ,followed by use of a nebuliser with 7% saline.I lie down for 20 mins ( 10 each side) to try to shift the mucous.I take 3 azithromycin weekly to keep infections to a minimum.

As already said regular exercise ,good food , & plenty of sleep too. Good luck!

[Yogaman83 in reply to Lfcpremier]

Hi. Thanks for your response. It was picked up on a CT scan I had last Sunday.

[Hidden]

Agree with everyone above. I, too, spent much fruitless frustrated time being given 5 days of amoxicillin by my GP , and feeling rough most of the time.But you have got past that if you now have a diagnosis, so hopefully that means that you have also been referred to a specialist bronchiectasis department. This is so important , so if it hasn't happened yet....make sure it does. Once you are on their books you will have access to so much help and advice. Your GP needs to understand that you require a supply of back-up antibiotics at all times so that you can start yourself on them when appropriate. They need to be high dose and taken for at least 2 weeks. GPs often don't understand this.

[Hidden]

Welcome to this very friendly forum, Yogaman. Firstly, remember you’re the same person you were before your diagnosis. It’s just that now you have a name for it, you can start managing it in order to stay well.

I was dx’d at roughly the same age as you, but others here have had bronch since infancy. All bronchs are different & I don’t want to bombard you with too much information, but here are my thoughts.

1. Make sure your consultant specialises in bronchiectasis. A general respiratory consultant doesn’t know enough. If you let us know your rough location, we might know somewhere with a good reputation.

2. Airway clearance. You must get referred to a chest physiotherapist to learn how to do this properly. Most people spend 20-30mins twice daily but we all tweak this to suit our lungs eg I do 10mins max in the morning & a longer evening session. One size does not fit all, whatever the lovely physios tell you!

3. Exercise! I do endurance on my treadmill (can’t walk outside in winter) and then strengthening exercises too. It’s very important for your lungs that your leg muscles in particular are strong, as they use the most O2.

4. Jump on any infections with antibiotics. You should’ve been provided with a course. Remember to replace it.

5. Eat, drink and sleep well! You know what to do, but with bronch you esp need to drink as much as you can, to thin and loosen the lung secretions

6. Avoid bugs - easier now masks don’t look weird, but also take care not to touch shop doorknobs etc without covering your hand. Try to avoid touching your face (harder than you think)

7. Get on with LIVING! Bronch is a pain in the arse, but once you get into a regular regime, stick to it & then forget about it and squeeze as much fun as you can out of every day. You can have a normal, long life.

I’ll post some useful links shortly, and of course we’re here to help & guide you (no questions are silly questions btw!) but remember it takes time to absorb all this.

[Yogaman83 in reply to Hidden]

Hi. Thank you very much for this information. As you said, there's a lot to digest. Got the diagnosis Thursday evening, so still very raw atm. With regards to location, I'm based in the East Midlands. Out of curiosity what strengthening exercises do you do?

[Hidden in reply to Yogaman83]

I remember when I was first diagnosed, I thought I was finished! But I’m 69 now & still here.

Glenfield Hospital, Leicester and the QE at Birmingham have an excellent reputation for the treatment of bronchiectasis.

As for my exercises, nothing special or very demanding I’m afraid! I use resistance bands for my upper body, and simple leg exercises like leg raises, hamstring curls, sit-to-stands etc. Not all at once tho, & only 3-4 times weekly.

[Hidden in reply to Hidden]

What a fantastic reply Hanne62

[Hidden]

My favourite website is this one, which is stuffed with useful information and, importantly, links to other resources:

europeanlung.org/en/informa...

Make sure you look at “Managing Adult Bronchiectasis” (under Useful Resources) which summarises the sort of care you should be getting.

Another good one is chss.org.uk/chest-informati...

Happy reading! I fear I’ve done what I said I wouldn’t and bombarded you. Take your time, there’s a lot to assimilate, but there’s no rush.

I’m sure others will be along with their own suggestions x

[Lutontown]

Well, I was angry actually, as I blamed my surgery for not sending me to my consultant until I had been fighting a chest infection for 8 months (Staphylococcus Aureus). Not until then did I get a CT scan which showed i had Bi-basal Bronchiectasis, and given a course of IV antibiotics, which sorted the SA. I would suggest 8 months of that bug caused it. I wrote a letter and told them so. I am now on a few medications which for me, seems to be keeping it in check, and not giving me too much problem, although I did have a 10 day stint in hospital with Pneumonia and Pleurisy, which may have been because I have Bronchiectasis.

[Alberta56 in reply to Lutontown]

OMG that is a shocking story, though not so different from my own. (Being with a surgery devoted to the welfare of Virgin, not patients.) I'm afraid you will have to make a fuss every time you need something. And make it louder if they don't respond. See what LittlePom has to say on the matter.. Best wishes

[Lutontown in reply to Alberta56]

At the time my surgery was in a bit of turmoil. My doctor was away for some of that time having a new hip. Another doctor I saw had just got married and her new husband wanted her to stop work, and another doctor didn't prescribe antibiotics only as a last resort. It was when my doctor came back to work I was referred to the consultant in the hospital. All of these doctors have now retired, and as far as the pandemic allows, the surgery looks after my quite well, I think. I now have mild to moderate heart failure, and I'm being looked after very well by a heart nurse, who gets me on medications, which keep my ticker under control.Also, make sure there is no black mold residing in your home. We had, and since eradication, no more chest infections; loads before then. I tell this tale at every opportunity.

[Alberta56 in reply to Lutontown]

Glad things are now going better. Thanks for the mould info.

[Hidden in reply to Lutontown]

I don’t want to butt in on yogaman’s thread, so could you send me a pm to tell me how you got rid of black mould? Think I’ve got a small patch of it. Thanks, lutontown

[Lutontown in reply to Hidden]

Our bathroom floor was covered with black mold due to a leak in the bath drain. This was got rid of by replacing the floor with new boarding. For a small patch, cure the source of the damp, and you can get mould killer spray from any supermarket.

[Hidden in reply to Lutontown]

Thanks for that 😊

[Milandra17]

Diagnosed in mid 2018 following 18 months of continuous chest infections plus pneumonia and pleurisy. In January 2019 I replaced my gas hob with an electric hob and I've not had a chest infection since. Stay away from open fires, log burners etc. This doesn't seem to be widely publicised.

[pickingflowers4u in reply to Milandra17]

Hi Milandra17I get frustrated and annoyed as to the lack of information being published regarding the harmful impact of fires on peoples health.

In particular the heath of babies, the elderly and those with respiratory problems.

I recently read an article, then undertook some research, on the impact of log fires in particular. The dangerous particulates / carbon they give off into the atmosphere is responsible for more pollutants in the air we breath than modern lorries apparently. Unfortunately log fires are not generally considered bad for us and are nowadays a desirable commodity, much sought after. Indeed they are purchased, (according to what I read,) for aesthetic, and mistakingly, eco friendly reasons.

Every time a tree is cut down it's ability to absorb carbon and give off much needed cleaner air is then reversed. It releases the carbon back into the air. The Clean Air Act needs to be revisited. Governments should wake up to the dangers of log burners.

I share your concern and urge all to have a good read and spread the word.

Thank you for your post.

[Mooka]

Excellent advice from all here to especially Hanne62. I can’t add much more except to say come back here and ask questions when you need to. Good luck.

[GintyFerguson]

Agreed, excellent suggestions and advice above . Don't panic! I was diagnosed many years ago and keeping as fit as you can with best diet plus I take supplement vitamins D and C and zinc. Stay away from under 5s if possible (carry lots of bugs) and ensure you have rescue antibiotics at home. Always a two week course. Focus on the positives. If there are things you cant do now then grieve and move on. Your mind is going to be your strongest ally. Bronchiectasis r us is a good forum too. Good luck .

[Karenanne61]

Welcome to this friendly, funny and informative forum. I can only agree with what's already been said. I have asthma and very severe copd, was diagnosed with bronchiectasis but latest notes state no bronchiectasis! (I will discuss at app at rhe end of the month) I will add that following pulmonary rehab yoga and pilates have made a huge difference to my health.

[Scat319]

if you have an iPad or iPhone, there is a great app, autogenic Drainage, which has custom settings as well as default setting. There you learn the proper breathing techniques for ridding the gunk in your lungs! I found it to be the best one because they walk you through the entire session. Good luck, I was recently diagnosed with mild BX, even though, at times, it doesn't feel so mild, especially with just picking up the new Omicron variant.

[Hidden]

First of all, visit chss.org.uk and go to the secion on Bronchiectasis and download rheir brilliant booklet (pdf)mit is in my opinion the best information about the condition, Then visit bronchiectasis.com.au/physi... for lung clearance exercises. Drink plenty of plain tap water to keep your mucus thin, and finally all the best for a healthy life.