Bronchiectasis

[Hashbrown9]

Hi , I am new to this - I have bronchiectasis all I have been given is inhalers , any tip you can give me how to control this , shortness of breath going up stairs and going out for a walk and having to keep stoping thank you

[Hidden]

The best advice I can give is to visit

chss.org.uk/chest-informati...

and download the booklet available on the website. And the fact sheet of common question. It's a real eye opener.

[Kristicats in reply to Hidden]

Good info there

[Hidden]

Take inhalers as prescribed, regular exercise, eating well, drinking plenty of water and perhaps if this has not been prescribed ask for carbocisteine to help keep the mucus thin and easier to cough up.

Also check out BLF's pages: blf.org.uk/support-for-you/...

[Kristicats in reply to Hidden]

👍

[Hashbrown9 in reply to Hidden]

Thank you x

[cofdrop-UK]

Hi Hashbrown and a very warm welcome to you, although I am sorry to hear you have bronchiectasis.

I assume you have had a scan to be diagnosed with bronchiectasis and I am wondering if this was arranged by your GP or a respiratory consultant.

Having a respiratory consultant who has a special interest in cf/bronchiectasis/PCD makes a huge difference believe me. You can check out easily online the consultant you already have, or a consultant you would prefer to be under the care of.

You don’t say what inhalers you have been prescribed but it doesn’t sound as if your condition is not being well controlled. You also don’t say if you produce much mucus and if you have been taught lung clearance.

I appreciate if you have just been diagnosed it will have been during this difficult time when clinics have not been running as normal. I hope you will soon have a face to face meeting with a respiratory consultant as it sounds as though you would benefit from a ‘starting from scratch review.’

Saying this I, along with many others on here, have had bronchiectasis from babyhood and am now 72, so please take heart there is life with bronch.

Here is an up to date, in fact it is updated all the time from the European Respiratory Society. It starts with basic information on how normal lungs work and then explains bronchiectasis lungs. There is information and videos on lung clearance and how you can help yourself and medications explained. There are interviews with clinicians which we were asked if we thought they should be included. We did, as the bronchiectasis cohort is diverse but perhaps it would be best to leave those ‘till later. Just dip in and out and I hope you find it helpful.

europeanlunginfo.org/bronch...

Good luck. Any specific questions please ask as there are lots of bronchies on here who would only be too pleased to help.

Love cx

[Kristicats in reply to cofdrop-UK]

Good info there

[Hashbrown9 in reply to cofdrop-UK]

Hi thank you for getting back to me , I did have chest x rays and a scan with a respiratory doctor at the hospital , my cough was so bad especially early morning with loads of phlegm , I am now waiting for result of my test on that to come back , it’s walking I need to get back into but don’t get very far and I need to sit down , I am on a steroid inhaler just for morning and evening then a easy breath for the day if needed.

Thank you .

[cofdrop-UK in reply to Hashbrown9]

Do you know when you will have an appointment for a face to face or a telephone consultation with your consultant. You might want to take a look at your resp con online. They usually have a special interest in something i.e. asthma, industrial disease, etc. You really need one with an interest in bronchiectasis.

Does it say how frequently you can use your bronchodilator inhaler (blue ‘easy breath’. If it doesn’t say I would be inclined to check with your GP until you can have contact with your consultant.

Love cx

[Hidden in reply to Hashbrown9]

If you take your ventolin/ salbutamol, reliever inhaler 15 - 20 minutes before you go for a walk this may help, always remember how far you walk away from home you have to do the same distance back. Stop and pause when you need to recover then continue. What I used to do was, 4 steps normal speed for you then 3 steps more quickly, alternating and pausing when you need to, this way you can build up endurance.

Take things steady. Hope you hear about your results soon.

Best wishes.

[Hashbrown9 in reply to Hidden]

Thank you so much , this has helped me so much joining this group , is there any medication that I could be taking to help me .

[Hidden in reply to Hashbrown9]

the inhalers you have been prescribed. the reliever inhaler as described. You perhaps need to check your technique, read the information leaflet that comes with the medicine.

[Patk1 in reply to Hashbrown9]

If yr just getting back into walking,dont expect miracles,move yr goalposts,start with a distance you can manage NOW.however short that i,doesnt matter,you can build on it,gradually.and Slow down to a speed that doesnt make u cough - this will enable u to go further.concentrate on yr breathing,deep & slow,but relaxed - it helps enormously- practise breathing at home too. This is the best advice i was given too

[Hashbrown9 in reply to Patk1]

Thank you for this advice really helpful , makes me feel so much better just reading all this advice , I am waiting for a appointment to see the Respiratory physio therapy so hopefully not a long wait .

[Patk1 in reply to Hashbrown9]

Great.sooner the better.theyll teach u airway clearance and breathing techniques.yes,this site is a great help

[Topcon20 in reply to Hashbrown9]

Hi hope things work out for you. When I was diagnosed with Bronchesctais by a consultant. My GP referred me to a consultant after repeated bouts of chest infections and hospital admissions. I believe the biggest impact was my appointment with physio. I now have to clear my lungs twice a day with breathing techniques and thankfully have a near to normal life. I hope you find away forward and can enjoy a quality of life you're happy with. Best wishes and good luck

[Hidden in reply to cofdrop-UK]

Great advice, cof 👍

[Enniskillen in reply to cofdrop-UK]

Hi c,I recently have been diagnosed with Bronchiectasis. I don’t know what to expect. I have a dry cough worse in mornings. I produce no sputum. I can cough on and off most of the day. I’m terrified as I don’t know what to expect. I have a habit of throat clearing is this part of it too?

Violet x

[cofdrop-UK in reply to Enniskillen]

Hi Violet,

So sorry you feel so ‘terrified’ and if newly diagnosed it is the unknown which is frightening I would imagine. I was diagnosed as a baby following double pneumonia and whooping cough, so didn’t have the impact of a new diagnosis as you have, and you have been diagnosed at a difficult time with covid limiting consultations.

I know some people with bronchiectasis which is dry but never experienced it as my cough has always been productive.

You would be best to put your post up again in a new thread, as you will get more personal replies but in the meantime if you check out the link I put up for Hashbrown, you might find it helpful.

Stay safe

Love cx

[Hashbrown9 in reply to cofdrop-UK]

I found the link very helpful cofdrop , thank you so much .

[cofdrop-UK in reply to Hashbrown9]

You’re welcome.

Cx

[November65 in reply to cofdrop-UK]

Hi I have copd and bronchiectasis now on inhaler trimbow .and blue inhaler its been alot better for my breathing and les phlegm tc stay safe x

[Catsncrochet in reply to cofdrop-UK]

Great info on the European site, thanks for that.

[Sabie2 in reply to cofdrop-UK]

Hi cofdrop, I have tried to find the Europeanlung site but am told it no longer exists, do you have any other address please

[cofdrop-UK in reply to Sabie2]

Not sure what particular european lung site you are looking for Sabie. I have only been involved with the Patient Priorities - Bronchiectasis as one of the patient advisors. You can google European Respiratory Society but they are not a forum and it is in the main a Society where clinicians are involved in research and projects eg. EMBARC, although they are very transparent and encourage patient involvement.

Cx

[skipwork]

What inhalers have you been given? I have long standing brochiectasis and have only been given a brown inhaler which is not suitable. I do postural drainage 3 times a day for 45 minutes.

[Pjmf]

If it gives you any hope my bronch was really bad, lots of infections, shortness of breath. However, with assiduous lung clearing, lots and lots of really pushing it with exercise and weight control, salt breathing in different ways, I almost feel I don’t have it now.

[sandravale]

I suggest that you ask for respiratory physiotherapy. You can also look online. This helps clear your chest

[Ladyindistress79]

I have had bronchiectasis for more years than I care to acknowledge and the advice you have been given so far just about covers it. Accept it and get on with your life.

[Wba_25]

Hi hashbrown9

I’ve suffered with bronchiectasis for about 10years (I’m only 26) I never smoked.

Mine was a lot like that, having inhalers (which you should always take) just take slow walks even if they are short to build it up slowly.

You honestly have to take your time, I was given a device you blow in to and it vibrates all your tubes in the lungs to help move the mucus.

Unfortunately my bronchiectasis was quite bad and I ended up having 1/2 my left lung removed.

[Hashbrown9 in reply to Wba_25]

Thank you , very helpful, sorry about your lung hope you are ok , my problem is that I panic so I don’t push myself to far with walking but I know I must , you have all given me lots of hope that I can do this .❤️

[Wba_25 in reply to Hashbrown9]

No worries, to be honest I don’t realise I’ve got it now I got discharged finally from the hospital with no infections in a year!

I use to have to go swimming, take slow walks and I found that for me trampolining helped loads!

[cofdrop-UK in reply to Hashbrown9]

There are various devices Wba mentions - They are called PEPs. In the link above there are videos on how to use the Flutter and the Acapella Choice.

With regard to lung surgery. Quite a few of us here have had a lobectomy in the old days, when it was considered to be beneficial to remove the most diseased parts when our bronchiectasis was diffuse. This is not generally done now unless the bronchiectasis is either localised or something more sinister is going on, so I don’t think you need to worry about that.

Love cx

[Cooking123]

Hi I’ve bronciesist and asthma for 16 years now and never smoked , when I first got diagnosed I then got panic attacks from it . But 6 months after getting diagnosed I was in hospital with only one lung working so was on extremely high antibiotics which cleared it and now I’ve learnt to live with it but was given symbicort inhaler which really helps and ventilin but every day I cough up mucus sometimes bad with the weather , don’t eat too much dairy products fat produce phlegm , keep dehydrated, excercise as much as you can not easy I know and I struggle every day and panic sometimes . Hope this helps a bit keep well xx

[locheil]

Blimey!,Hashbrowns9,

Have you been left out in the cold or what!

Your best bet for starters in to look up the C.H.S.S. web site and you will find a lot of information and recently produced pamphlets on Brochiectasis. This is no disrespect to BLF,

they do a superb job and both organisations are respectful of each other but right now CHSS have a bit more clout and due to relationships formed between CHSS and 2 internationally recognised authorities on bronchiectasis here in Scotland,have published a booklet on self management of the condition that you should have.

2 things you can do,

The first is get your Doc by the throat if necessary and get yourself onto a pulmonary rehab course,there will be one near you but it has to be prescribed by your Doctor.

If you can try and find a suitable exercise class,and by that I mean one that recognises you as an individual and caters for you in that way,that will help.

Finally managed properly you should not have too many issues,but if you do get exacerbations deal with them properly according to your Doctors advice,and watch your diet!!.

[MarilynSakkis]

Read and research....

I have acupuncture weekly

Walk daily

yoga...Im a yoga teacher

device called acapella

Supplements:

D 3

A

Dr.Murry ...lung, sinus, bronchial

Hardly ever am I out if breath unless a bad flare.....

[MarilynSakkis in reply to MarilynSakkis]

More...I eat very clean...

only fish

veggies

fruit

lots of water...warm throughout day...helps phlegm move

[Normc]

When I was diagnosed I was sent to see a respiratory nurse & a respitory physiotherapist who gave me an exercise program. There is more to it than going for a walk I am afraid, & as they said it’s time consuming. Carbosictine is also a must. Exercise makes you cough & you get rid of the mucus on your lungs & hence avoid infections you hope. Good luck & stick at it.

[Timberman]

Do you have a COPD specialist nurse in your GP practice? Is there a specialist COPD unit in your local health service provider?

I ask because GPs and their GP staff are just that - general practitioners. COPD in all forms is very specialist and a good clinical specialist (very senior nurse ) is likely to be better at assessing your needs.

You probably know all about bronchiectasis but the key to it is that the damage to your broncheole means you have trouble (as i do) in bringing up mucus from the depths of the lungs. This is a cause of frequent infections.

I take a once a day inhaler of tiotropium to improve my airways. Got to spiriva.com/

I also take three carbocisteins capsules every day which specifically loosen the mucus and make it easier to bring up. Go to medicines.org.uk/emc/produc...

Hope this helps.

[cofdrop-UK in reply to Timberman]

Hashbrown has bronchiectasis and would benefit from a specialist nurse in cf/bronchiectasis/pcd rather than a COPD specialist nurse. The conditions, whilst having some similarities are different as is the treatment.

Cx

[dimarx]

Hello, I've had bronchiectasis all my life. The only thing I would add to all the good comments here is to swim just as much as you can. It is so beneficial. Also take up yoga, great for your breathing and stress relief. Best wishes.

[Catsncrochet]

Absolutely insist on getting respiratory physiotherapy. Ive bronchiectasis and Asthma. Make sure your go surgery gives you sputum pots so you can produce a sample quickly if you get a flare up. I take fostair, qvar, Seebri, and carbosisteine.

Avoid prednisolone as much as you can, it brings its own problems. There are posts on here that discuss the problems.

You are right to exercise as much as you are able. I learned that late, and had 11 of the small airways blocked when they CT scanned me. You need something that makes you breathe hard every day. Your GP can also refer you, once they are open again, to a gym with a rehab specialist, for an assessment of what exercise you can do.

Take care!

[CYMROBOY]

I have lived with Bronchi for over 70 years. Diagnosed as a boy of 10 (before CT Scans were invented and Antibiotics were in their infancy). By all means take all the help from today's medical approach to the condition but above all else stay positive. Try to live life as normal as you possibly can. Do not let the condition dictate to you. Good luck and stay well.