I have a new diagnosis of bronchiectasis and am struggling coming to terms with it. The cough is embarrassing in public. It’s hard to control my bladder resulting in stress incontinence .
im doing plenty of exercise and drinking water.
I wondered if anyone else had any advice or support.
Hi and welcome Mama-bear. We have many members with bronchiectasis and I'm sure some will be along at some stage to help.
Welcome Mama-bear. I have bronchiectasis and manage to live a reasonable life in spite of it. I was diagnosed in 2019 and so far it has been pretty well controlled and remained relatively mild. I was offered pulmonary rehabilitation not long after diagnosis, which I found extremely helpful. They get you doing lots of exercise to help you get fitter (it doesn't sound as if you'll need that) and show you that you can do more than you think you can. They also give you information about how to live healthily and how to do Active Controlled Breathing amongst other things. There is great emphasis on self- help. I've had one bad infection since then and one of the nurses came out to see me. She got me an AeroBika do help me cough up the gunk and had my GP prescribe Azithromycin, which a lot of us are on. If you are on inhalers, you may find the present one is not ideal- a lot of people need to try several before finding the right one. GPs tend not to know a great deal about bronch. If you don't feel that your concerns have been treated properly you have to persist. As for the bladder problem, have you tried pelvic floor exercises? There are some on line, but your surgery nurse may be able to help. In some places there are occasionally courses or day schools.
My main advice is Get on a Pulmonary Rehab course as soon as possible. Best wishes and good luck in managing your bronc.
Thank you for that information, it’s all very new so learning as I go. I do a lot of what you have suggested but I will have to push the doctors for pulmonary rehabilitation I think.
Lots of pelvic floor exercise as I do reformer Pilates and am very focussed on core strength. I will discuss with GP practice and see if there is more I can be doing.
Thanks again.
It's worth asking your GP if the surgery has a pelvic floor physio - I have an abdominal prolapse with previously stress incontinence. Ive seen the physio twice over the years and they always sort it out.
Great answer! Xx Moy
Hi I too have bronchiectasis and emphysema was diagnosed 8 years ago have made a lot of changes I no longer eat dairy drink green tea and plenty of water I am on mucodyne carbocisteine capsules 375mg take two capsules 3 times per day I do my breathing exercises which the hospital showed me and I do very much believe in them as they do bring the mucus up.
hi and a very warm welcome. There are quite a few members who have bronch, some like myself from babyhood and childhood. We have had a good life whilst doing all our meds and physio. You are in shock right now but you will learn to live a good life. Make sure you get referred to a respiratory consultant with a special interest in cf/pcd/Bronchiectasis. You will find one online at a large hospital you have access to.
I willput up a very reputable link , which I had the good fo4tune to be invilved in for a couple of years. It is updatd constantly. You can dip in and ouT of, although I would leave the discussions between the consultants until you build confidence in managing your condition. It’ a bit advanced and wouldn’t be easy to understand at this stage, but we wanted it in.
europeanlunginfo.org/bronch...
You have had some great replies from your new fri3nds and there will be more from our friendly bunch.
💕💕💕
Hi there.do read up on lung clearance techniques- active cycle of breathing.if u practise + do 2 sessions ea day, u will get gunk up+ hopefully ease cough.do see Dr or nurse re incontinence x
Hi Mama-bear60, I have bronciactsis for the last 5 years, it's not fun to start with but you will get used to it. I have given up caffeine because of mtx for ra, I find that if a am giving a bad day coughing and feel gunk is stuck, I have an ordinary cup of tea and this starts to shift the gunk.
I am on Fostair twice a day, i start with ventolin and then take saline through my nebuliser and after that I take my Fostair in the morning. To help bring up the gunk I use an AerobiKA not sat up as they say, lying down on the bed, first on side the middle and then the other side.
Works to loosen the gunk. You will get used to the starring and Learn to taje no notice. They are just ignorant people that don't understand. Take cars and stay safe. Good luck.
Lots of people more experienced to discuss the bronch side.As others have mentioned, doing pelvic floor exercises makes a HUGE difference. Just try tightening up all the muscles between your legs and relaxing them six times in a block, a couple of times a day, every day. All the best.
Good morning!It probably came as a shock to get the diagnosis but believe me, you will learn to manage your condition and life will go on!
Lots of people feel embarrassed by their cough when in public, but when it happens, it happens. Please don't let it stop you going out and about. Just make sure you have a tissue handy to cover your mouth with.
The ACB has been mentioned by others. Until you can get onto a Pulmonary Rehab course, there are some good videos on YouTube that will show you how to do the breathing exercises to help clear your chest. If you can get used to doing them regularly, you may find that you cough a lot less.
Now stress incontinence is a b***er! But there are plenty of pads out there to choose from that are really absorbent and they come in many shapes and sizes so you should manage to find something that's comfortable. If you are losing more than a few drips, I would suggest you ask your GP to refer you to the incontinence service in your area. Please don't be embarrassed about this. Lots of people have to manage this but often the pelvic floor exercises mentioned in another reply can really help.
When you have Bronchiectasis, it's important to get on top of any chest infection ASAP and so, if your GP or consultant have not already mentioned a rescue pack, it would be wise to ask them about it. This would be a supply of antibiotics and steroids to keep at home so that you can start them straight away when necessary. You may need to remind GPs that for bronch patients, the minimum requirement is to have a course of medication for two weeks, NOT one. You must call your GP or Respiratory team and let them know if you start taking them and they will most likely request you send them a sputum sample for testing to make sure you're on the right meds for the bug you've got. With this in mind, ask for a sputum sample pot to keep at home. My consultant usually gives me three at a time when I see him!
In the meantime, look after yourself. Eat as well as you can and take gentle exercise if you're able. Do things you enjoy!
Mostly, try and relax and not worry too much. You'll meet lots of people on here who are living full and active lives despite having bronchiectasis.
Xx Moy
I have also found the cough very embarrassing especially when coughing up lots of gunk, but it's necessary to keep your lungs clear, I have been using Manuka honey for the passed year and my cough has stopped so I can't praise it enough, it's expensive but I get it when the sales are on at Holland and Barrett, it's definitely helped me
I've just been diagnosed with Bronchiectasis and my cough is driving me nuts and it's embarrassing. Which Manika honey did you buy that helped, what strength ? and how do you take it ? Many thanks
Hi I was originally advised to go for a high number ie. Over 100 but I started off on 55 or 75 which seemed good for me , I take a tablespoon every day, I've tried the higher one 340 , but to be honest the 55 is great for me so I stick to that, get it when the offers are on and Holland and Barrett , hope it helps you, it's done wonders for me, I'm cough free for over a year now
Hi Mama-bear 🙋♀️. I have bronchiectasis too. I still find it very scary at times but this site is a lifeline for me. It's a lovely mixture of help, friendship and fun. I can't think of any further advice than what has already been given, but just wanted to say hello and welcome to the forum. I think the general thing people would agree on is it's all about self help and a good bronch specialist. Take care 🙂xxx
I was diagnosed with Bronch by CT scan results in 2014 after a long bought of chest infection by Staphylloccus Aureus. I believe this damaged my lungs. The infection was knocked out with an intravenous AB. In 2016 and 2017 I had numerous chest infections. In 2018 in the throws of changing our bath for a walk-in shower, black mould was found covering a large part of our bathroom floor. The chipboard flooring was replaced, and since then, other than a bought of pneumonia and pleurisy, I've had no chest infections. I hope you have a hospital consultant looking after you. GP's are jacks of all trades mainly. A consultant will get you on the right medication to help you, and you can live your life more comfortably. I sleep with my trunk fairly upright in an adjustable bed. I find that if I lay flat, I tend to fill up with muck.
Hi Mama-bear and welcome to the site. It's always a shock when first diagnosed with any illness and takes some time to get your head round it. The more knowledge you have the better you will deal with it. On the search bar above type in bronchiectasis this will show previous posts and has a wealth of information. I learned more from this site than any doctor or hospital. The cough usually comes from mucus on your chest, ask your doctor for Carbocisteine tablets which help to thin the mucus and Ventolin inhaler helps to losen things helping you to cough it up. As for the cough, no matter how much i do pelvic floor exercises it doesn't stop the leak when i have a cough, although i do them everyday and resort to a panty liner. Have you been referred to the hospital ? If not find a specialist in a hospital near to you and ask to be referred. Respiratory consultants just dont have the knowledge on this condition. Any questions feel free to ask, this is a marvellous site with people who have a good knowledge of health problems, good humour and compassion x
As a 10 year sufferer with bronchiectasis, I very much agree with a lot of the advice that you have received so far. Particularly, engaging with the European Lung Foundation! They seem to give bronchiectasis much more detailed attention than the British version and are very optimistic about possible remedies for it that are being developed currently.
My only addition to the above advice is: take a mucolytic (like Carbocistine) regularly. As you already know, you generate a lot of extra lung mucus with bronchiectasis which, if not cleared/expelled regularly, allows bugs to settle in that go on to cause chest infections. Taking a mucolytic enables you to keep all bodily mucus easier to clear/expel.
Hi and welcome to this friendly, funny and informative forum. I have severe copd with evidence of bronchiectasis but very little mucous production. I do take codeine linctus for the cough, oxynorm to aid my breathing, prophylactic azithromicin, two inhalers etc etc. Originally my cough was unremitting and I suffered embarrassing incontinence too. I listen to the wise members here, try to follow their suggestions re healthy living and excercise and only cough when I move, talk or breathe deeply! 😂 There was a lot of coughing at the theatre yesterday but not me as I had had my meds, was well hydrated (decaf tea, water, juice etc) and was sitting still and quiet.😂
Hi Mama- bear and a warm welcome to the forum.
Our members have given some great advice and if you would like to chat with one of our Clinical Team about managing your bronchiectasis, give us a call. Details are on the link below.
Take Care
Debs
thank you to everyone for your responses and interaction.
I have been on the online support zoom today, I found the details of BeHappy bronchiectasis support group through A & Luk website.
I feel a call to the GP regarding referral to physio and an assessment of the medication pack os what I need to do next.
I do Pilates which has been beneficial in helping me with breathing techniques to help clear my lungs.
Thank you all once again it much appreciated.
Hi, I have mild Bronchiectasis. I really only got diagnosed because during lockdown, standing in a queue coughing away, I could feel all the eyes on me, and it was embarrassing. I had a CT scan and was diagnosed. Due to the strange times I’ve only ever had a rather bizarre phone consult so I was in shock as well.
I take Carbocisteine tablets and Fostair spray, which seem to help as I seem to only get really bad when I have a cold. Drinking plenty of water helps and so does exercise. I too have stress incontinence, which is really embarrassing. I discovered Primark period knickers, which have been a blessing. They just give me a bit more confidence.
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