Just Been told I have bronchiectsis. - Lung Conditions C...

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Just Been told I have bronchiectsis.

Exocist profile image
27 Replies

Hi I'm Exocist.

I have bronchiectasis. Was told this by doctor at hospital in Dec 2019,

this Stunned me as no previously lung issues. Keep getting chest infections

Every four weeks. Prescribed drugs. Goes away. Then reappears. been told

Will have this health issue for life. Any advice please.!!!!

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Exocist profile image
Exocist
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27 Replies
Alice70 profile image
Alice70

Taking the antibiotics Azithromycin three times a week has helped to keep infection away ,I was like you getting infections every four weeks ,my chest consultant put me on Azithromycin

Exocist profile image
Exocist in reply toAlice70

Thankyou.!!!!

hypercat54 profile image
hypercat54

We have several very knowledgeable members here including Hidden and O2Trees who hopefully will come in to help.

Exocist profile image
Exocist in reply tohypercat54

Ok.!!!!

O2Trees profile image
O2Trees in reply tohypercat54

Nice of you to say so, Bev, but I dont know that much about bronch. I was diagnosed with it secondary to copd whereasf LittlePom has lived with it all her life.

Like many have said, Im also on azithromycin three times a week following two severe hospitalisations within a few months. I try to take an azithromycin 'holiday' for a couple of months in the summer as my GP says that will help me not become so dependent on it, so that it stops working.

The other thing which is important is that people with bronch should take antibiotics for minimum of two weeks when they have a flare-up. Many GPs dont know that.

The aim of treatment is to keep the bacteria in your lungs as suppressed as possible so you can live a functioning life. Every so often they get out of control and have a party in your lungs (LittlePom's phraseology!) and then you need stronger treatment. Do hope she comes as she is much better at explaining it than I am.

And welcome Exocist! :) :)

hypercat54 profile image
hypercat54 in reply toO2Trees

Thanks O2. I will just add what Hidden always says. If you have a consultant make sure it's one who specialises in bronch as general respiratory ones don't have a clue.

Milandra17 profile image
Milandra17 in reply tohypercat54

Hello,

Only just seen your post. I was diagnosed 2 years ago and at the moment I'm doing ok after 2 yearsvof constant chest infections. Jyst wondering how you can find a consultant who specialises in bronchiectasis. Mine has told me thst i only need to go back to see him if i become ill again so i no longer have regular check up appointments with him.

Exocist profile image
Exocist in reply toMilandra17

Thankyou for your replie.

Exocist profile image
Exocist in reply toO2Trees

😀😀😀

HungryHufflepuff profile image
HungryHufflepuff

I dont really have any advice but just wanted to say hello and welcome . there will be lors ofbpeople with good advuce :)

Exocist profile image
Exocist in reply toHungryHufflepuff

Thank you for your nice Comment. And your warm welcome. .

Sops profile image
Sops

hi,welcome,

i have Bronch and take Azithromycin 3 times a week which helps to keep infection levels down,

i also have a rescue pack of antibiotics for if and when infections develop.

i was referred to a respiratory physio at the onset to learn how to help clear mucus

My GP referred me to a pulmonary rehabilitation course held locallyfor a few weeks.

I believe success in getting on one of these courses is a bit hit and miss but they are very helpful and informative,

This website is a fount of knowledge, ask away and you will get friendly, helpful, and constructive answers.

Stay safe Sopsx

Exocist profile image
Exocist in reply toSops

Cheers. Good advice sops.

Sops profile image
Sops in reply toExocist

You are bery welcome

Sopsx

Oshgosh profile image
Oshgosh

I as diagnosed with. Interstitial lng Disease 19months ago.

Up till then had been having infections monthly.

I’m now on Azithromycin Monday Wednesday and Friday.

I’m on Co trixamole Tuesday,Thursday Saturday.

They don’t cure me,but they keep things under control.

It was prescribed whilst I was in hospital.

I don’t know if GP Could prescribe these.

Perhaps a phone call to hospital might help.

Stay safe.

Exocist profile image
Exocist in reply toOshgosh

Yes. I need these drugs now permanently. Rather than frequently calling

doctors every 3_4 weeks. Thanks for your replie.!!!!

Calm7 profile image
Calm7

Hi, I am new to this forum too, and I have had a lot of help. My own personal experience is to learn how to get rid of excessive sputum daily using physio exercises, I use a flutter and a ventolin spray. With exercise I could manage without antibiotics. Mine seems to work, I either get up the sputum with the exercise or take the tablets. Blessings Lesley

Exocist profile image
Exocist in reply toCalm7

Thanks lesley. What kind of exercise do you participate in please.!!!!

Dedalus profile image
Dedalus

I don't have bronchiectasis, but would like to welcome you to the site.

Exocist profile image
Exocist in reply toDedalus

Many thanks for your nice comment.

watergazer profile image
watergazer

Welcome to the site I have mild bronchiectasis which is kept at bay by my fostairnexthaler and I take vitamin d3 daily. Sorry cant help with more severe symptoms Take care x Anita

Exocist profile image
Exocist in reply towatergazer

Thanks anita.

Mooka profile image
Mooka

Hi exocist

Sorry you have had to find yourself here. Who is managing your Bronchiectasis? You need a respiratory doc with knowledge of Bronchiectasis. I suspect you are getting repeated infections as you are not on the right antibiotic for the bug you have. Normally you should submit sputum samples for testing so that you do get the right antibiotic. If you need help clearing sputum google active cycle of breathing and you should find some YouTube videos that show you how to do this. Again in normal times you should see a physio to show you this. Most of us also take carbocistene to help thin the mucas and the regular antibiotics others have suggested. There’s others on this site who, I’m sure, will give you plenty of excellent advice. In answer to your question yes it will be with you for life but once it’s under control it will be a lot easier to live with. Your doctor needs to sort out your infections first though. Take care. Xx

Exocist profile image
Exocist in reply toMooka

Hi mooka. Fab advice. Had a least 6 or more different antibiotics, waiting

to see respiratory doc in august. Really Confused with it all. To add I have

Low blood pressure that causes fainting frequently. Anyway we wi!l get

there soon.

Thanks.

Hi Exocist. I'm sorry, I have only just seen your post. You have had lots of great replies and I hope that the lovely people on here have eased a bit of the shock and helped you to begin to come to terms.

Remember that you did not develop bronch overnight. You have been living with it for quite a while and you are the same person today that you were yesterday. The only difference is now you know what you are dealing with and can begin to learn how to manage it on a daily basis. This way things should become easier than it has been whilst you have been struggling without a diagnosis and you can live a very full life.

The secret to bronch is two fold.

The proper drug treatment to tackle exacerbations and the bacteria which love to breed in our lungs.

Personal management and control. Scrupulous emptying of mucus from the lungs every day, diet, exercise, learning to recognise when an exacerbation is starting up and avoiding other people's viruses. These for me, are the agent which allows the secondary bacterial infection to start up.

It is possible to go months without abs if you manage to get rid of the mucus in which they like to breed.

VERY important - and others have mentioned this.

You Need A Good Bronch Specialist.

GPs know nothing about it.

General respiratory consultants know little more. They don't have the extra training or experience and get it mixed up with copd.

A bronch specialist will have a physio to teach you breathing tecniques fir loosening and getting up the mucus.

The specialist will tell your GP which antibiotic to give you and the correct dose and length of course. At least 14 days. Bronch is different in everybody and changes in each person. There are lots of different abs and means of delivery. Only a bronch specialist can deal with its vissisitudes.

So, check whether the consultant you are to see is a bronch specialist. If not find one in your area. They are usually at big teaching hospitals. Take the name to the GP and insist on a referral. Do Not Take No For an Answer. This is your long term health and quality of life that we are talking about. GPs can be far too complacent about bronch and I'm afraid that we have to be very proactive in our own interests and vociferous in sourcing the best trestment.

Good luck, I have had extensive bronch since I was 3. I am 70 next week and am still leading a very full life.

Good luck. We are all here for you.

Exocist profile image
Exocist in reply to

Your replies really Cheered me up. Thankyou. For taking the time to respond.

Calm7 profile image
Calm7

Hi Exocist, sorry to be so long getting back to you, here are the exercises that I was given,

Bronchiectasis techniques AIR-TRAPPING TECHNIQUES

Bugs like to grow in the mucus, which is one reason why it's so easy for us to get infections and get colonized with various ones. And that's why it's so important to keep our airways as clear as possible.

But there's another aspect of airway clearance that never dawned on me til recently, and that is that getting all

that mucus out of there on a daily basis is also one of the best (if not THE best) ways of keeping the bacterial load in our lungs to a minimum.

Antibiotics kill the bugs, but it takes them a long time to work, and it often won't kill some of them---and then those stronger bugs are still in there, working against us and getting stronger than ever. But coughing the mucus out of there PHYSICALLY removes the bugs.

Each time we cough up a glob of sputum, we are physically removing thousands of the bacteria and fungi that

are robbing us of breath. And if the bugs are not there, they can't hurt us.

.

These techniques can be very helpful for clearing out the mucus that is in our smallest, deepest airways. I call them air- trapping techniques because that's what I originally used them for, but in the process of getting rid of trapped air, they also move a lot of mucus up higher in the airways, where it's a lot easier to cough out.

A Lot of people who don’t have much air-trapping, have noticed how helpful these techniques are for coughing out the mucus

The techniques are easy to learn, easy to do, require no equipment other than a chair to sit in, and they're free. I ask only that you pass them on to anyone you may meet who might also benefit from them; pay it forward, in other words.

AIR-TRAPPING TECHNIQUES

Pursed-lip breathing will help with air-trapping, but I am going to give you a few tips for stuff that I have found helps even more. If you don't know how to do pursed-lip breathing, here's a youtube video on it:

youtube.com/watch?v=RxPRng3...

These are the techniques to do in addition to that.

DO ALL THESE THINGS SITTING DOWN; sometimes they can make you dizzy, and you don't want to fall! Also, it's important that you exhale as far as you possibly can with each repetition; not hard and fast exhaling, but pushing all the air out that you can. But be sure to take time between repetitions/coughing to catch your breath! If you don't, these can be pretty exhausting.

HUG #1:

 

First, put your right hand on your left shoulder and your left hand on your right shoulder, arms crossed over chest as though hugging yourself.. Then, while you are doing the pursed-lip breathing, you

squeeze your chest between your arms a bit....I also find that leaning forward and then to the right and the left in turn helps to squeeze more air out of each lung. Catch your breath between times, but do these four or five times in a row.

HUG #2: 

Start with right arm over left in the same hug position as Hug #1, and lean slightly forward and to the left while doing pursed-lip exhale. Switch arms and lean forward and slightly right.

Repeat 4-5 times (both arms counting as "1".)

ELBOWS #1:

Then put your hands behind your head, fingers locked, elbows pointing out, and bend all the way over to one side---try to lift your higher elbow up towards the ceiling, rather than trying to get the lower elbow towards the floor; this helps to open up the ribcage, allowing more air to go in. Do one side, and then bend to

the other side to do the same thing there.

ELBOWS #2: 

With elbows in same position, tilt your head back as far as you can and try to move your elbows towards your back, too.

Note: If you can't do the elbows behind your neck, it also works fairly well to open up the ribcage by putting hands on your thighs while sitting down. One at a time, push down on your hand while lifting one shoulder as high as you can, and then do the same with the other hand. You may actually hear your ribs "creak"---I do, every time!

RIB PRESS: 

Place your palms on your lower ribs, and press inward firmly but gently while you do a pursed-exhale.

PALM WALK:

Start at the bottom of the ribcage with palms in the RIB PRESS position, and press firmly but gently in till you have emptied out as much air as you can. Then take a short breath in, move your hands up just a bit, and press the ribs in again. Repeat a few times, going as far up the ribcage as you can, and taking a short breath in each time. If you need to stop and rest, do so, but go back and finish after you've caught your breath.

CHEST SQUEEZE:

Hold both upper arms in close to your sides, and squeeze with them against your ribs; it may work better for you if you allow your hands and forearms to cross a bit in front of you.

Do all these things a few times, then try a cough and see if anything will come up. If you're like me, you will have been coughing mucus up all the way through these as more stuff gets cleared out of the way so that deeper mucus could move higher up the airways to be coughed out.

Try British Thoracic Society Guidelines

Try British Lung Foundation

Blessings, Lesley

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