Having recently joined your club Im forever grateful for the ongoing information, advice and support Ive had from lots of you - you know who you are
Quick query: after a recent brilliant consultant appointment where he explained loads and showed me on my CT scan where the bronchiectasis was and what it looked like, he has sent a letter to my GP saying I have bi-basal bronchiectasis. Am I right in thinking that means its in the two lower lobes, which is what i was already told after the CT scan, or does it mean something else.
Also, which probably concerns everyone here to some extent - i just read an article about whether to spit or swallow coughed up mucus. Someone posted today about having to get off the bus to spit it out, sorry i can't remember your name just now. Anyway the article which referenced medical researchers said it really doesn't matter which you do as the mucus has already been in your lungs which is just as close to your blood stream as if it goes into your stomach where anyway it is unlikely to survive the acid there.
Since bronchs are often colonised with bugs, do you think this applies to us too?
Good breathing to all.
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O2Trees
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Spit or swallow was something we discussed in pr and we were told the same thing that it makes no difference and as he knows i have bronchiectasis too and Pseudomonas i did ask him if im included in that which i was.
Personally i would like to not have any to spit or swallow it makes me heave its disgusting and tastes like the bottom of a parrots cage not that ive ever licked the bottom of a parrots cage x
Hiyas when i was on my pr course i ask that question and was told it dont matter if you swallow after coughing it up has it just goes to your belly
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What intelligent in depth questions you ask. Good, you are aiming to learn all you can and so stay as healthy as you can. Well, as regards spitting. I was strongly told as A child that I never spit in public and I have lived by this. It isn't polite and gives other people the excuse to look down on you. However, it isn't always easy. The aim is to do as much drainage as possible before you go out, so that you can last until you get home. However, exacerbations, viruses and just general bad days mean that this isn't always possible. So my life is a balancing act. Wherever I go I always make sure that I know where the toilet is and I just go if I need to. I have learned not to care if I get funny looks when I come out after coughing. It's my health that is important and they will probably never see me again. I try to time my outings around my body. It sounds impossible but once you get used to coughing up as much as possible at your chosen times of the day it is easier to control your outings. I do some quite long car journeys by myself. If I am not going to be able to stop at a services I keep kitchen roll and a plastic bag in the car just in case. As far as swallowing it. Well, the ideal is to cough it out but I guess that many of us will admit that we have had to swallow it from time to time. We are colonised anyway and they are 'our' bugs. Strangely, I have hardly ever had a 'tummy bug' unlike many 'well' people I know. Perhaps 'our' bugs give us protection from strange ones. I don't know. I hope that helped a bit.
Well i didn't mean spit onto the street Stillstanding Into a hanky I meant, but its often just easier and less obvious to swallow. And I've almost never got tummy bugs either.
I dont tend to get the coughing fits that you and many others describe, except when i have an exacerbation, then i couldn't consider going outside as i have pretty bad choking episodes and bronchospasm from the asthma.
But my "fluttering" isn't going well, i don't manage to get much up. May think about getting the aerosure devise instead.
Thanks for your reply and hope its a good day for you
Ha no I certainly didn't mean spitting into the street. I meant spitting into anything in front of people. But that is just me. It's a shame that all of your efforts are not moving the gunk goblin. Perhaps an aerosure medic will help you. Sometimes it needs a different type of antibiotic which can thin the secretions. I hope that you find something that helps because it is so tiring.
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Hello Stillstanding. May I just ask - did you use the acapella before you bought the aerosure medic? If so & it's possible to think back that far, how would you compare the two? I am using the acapella but find I can't breathe out long enough for the vibrations to get going (maybe 2-3seconds). I'm thinking of an aerosure but wondered if you had any thoughts on whether breathing out is easier with it? Thanks. Robin
• in reply to
Hi Robin. Yes I had the same problem as you with the acapella. You describe it very well. I was out of breath before I created a vibration. The areosure sets up the vibration and resistance by itself and so you just breathe against it and can immediately feel the vibration. I find that the slow speed is good for that but some people find that the fast speed helps with breathlessness.
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That's just what I wanted to know! I've been reading reviews etc but no-one covers that point. Thanks so much. I think I'll go for it, it's worth a try anyway. Rob
That's amazing James, thank you. Ive never had much luck with the huff cough. But tried just now using the sound "who" rather than "huh" which i always assumed it should be, and it worked instantly. Very helpful, thank you
You should cough it up and out where possible, but swallowing won't do any harm. It is though important that you keep an eye on your sputum. You need to know what is normal for you, so that you will notice any changes in consistency or colour which may be the first indication that you have an exacerbation coming on. If you do this you may be able to nip a bad infection in the bud.
I was told by the physiotherapist that swallowing the mucous is fine as it will not survive stomach acid. I do swallow but do wonder with taking the prazole meds (anti-acid} if you have less acid would the bugs get through? Kaye.
I have asked this question LOADS of times to many different medical people, (including a consultant) and was told it is totally OK to swallow...I always like to spit it out if possible though, and only swallow if un avoidable. I have a way of pretending to blow my nose but then spitting the gunk into the hankie ( I have watched myself doing this in a mirror and I cannot see what I am doing) this is ONLY if I have coughed up stuff into my mouth, like perhaps when doing my deep breathing and huffing in the car, and I would rather spit it out if I can.
My worry at first was that somehow the gunk would slide back into my lungs and not go down into my stomach...but I was assured this would not happen. I have been getting stuff up off my lungs now for decades, have swallowed about a quarter of it, and never had a stomach bug or problem. It is ALWAYS best I think to get it out though, and one does find ways to be able to do so.
I cannot use the flutter or acapello ( I don't have enough 'puff' to make the balls move) I have decided to try the Aerosure medic, sent for one this week, I will let you know how it goes .
Up to now breathing & huffing have been the most effective way for me to get the gunk up....(unless you can get someone to do postural draining 'cupping' for you...that's THE BEST way) but as I live alone I can never get this done....Physiotherapists used to do this on patients in chest wards in the old days before all the cuts
Now you know what you are dealing with O2 I think that will be good for you
Hi Sohara, lovely to hear from you. It made me laugh imagining you looking in the mirror to work out a surreptitious way to junk the gunk
Im using the flutter device with little success although i can make it flutter fine. But nothing seems to come up. So I'll be v interested to hear how you get on with the Aerosure.
Im seeing the physio fairly soon so I'll get her to show me the cupping thingy. Then i can train Rita to do it.
I do feel much clearer now Ive had lots of advice from you guys and some time has passed so I've got used to having it. The consultant was brilliant in discussing how bronch, copd, asthma and reflux all interact. I had to fight to get on his list, despite that he was the one i saw in hospital, as the outpatient list is separate. But Im glad I've got him now.
I'll always be so grateful to be able to speak to you after dx, Sohara.
Yes hun bi basal is the two lower lobes. I had a L lower basal section lobectomy when I was 15 and I notice quite a few on here around my age had lobectomys around the same age, even though our bronch is and was difuse. They wouldn't do it now.
I do exactly the same as Sohara. Discretely appear to be blowing my nose but quite often I just swallow it. As long as it's out of my lungs I don't give a monkeys. I do live alone however, and do my own postural draining with percussion - done it for years. Also incorporate the more modern methods and gadgets, but for me when the chips are down, old fashioned or not, pd with percussion does the best job, and I repeat for me.
Hi cofdrop, thank you, i thought as much. My consultant said that when you do lobectomies, the problem just comes back somewhere else in the lungs.
Can i ask when you do your postural draining with percussion, do you do it lying down? Id have thought that would be best but i can't do it due to having reflux and barretts. So vertical is the only way for me.
Hope you're ok cof, and that you have a good weekend.
I get reflux but not barretts, in fact I don't know what that is. I have a low bed settee and I go over that with a few pillows on the floor. It is sometimes difficult if the arth is kicking off. Sounds like it would be quite difficult for you though and you may well find other methods will suit you better. Have you seen a physio yet hun? One of our lovely previous members who has reflux and does either autogenic or active cycle of breathing, think it's autogenic was told by physio to try it laying down and it has worked much better for her than sitting up. We 're all different so we all have to wade through and find what suits us best.
Oh forgot I do it twice a day, more if really in trouble.
I think they will do lobectomies if the bronch is localised but not if it is diffuse anymore.
Thanks for asking - I will be glad when this cycle of nebbed Tobramycin finishes on Saturday. Maybe my temp will go down - at least until the next infection.
Will be with my little 4 yr old gd this weekend, which is always uplifting.
Barretts Oesophagus is a pre-cancerous condition caused by long term exposure to stomach acid which has leaked into the oesophagus. You get cellular changes (dysplasia) where cells in the oesophageal lining become like cells which line the stomach. I have an endoscopy every two years to check it hasn't progressed.
So, although i don't get heartburn or other reflux symptoms, i try to protect myself by staying upright. Will talk to the physio about it.
Do hope the tobramycin does its job. Horrid to feel so ill. I'll keep fingers crossed for you. Have fun with your gdaughter and feel better xxx
Hi Cof, thanks for that observation. After being critical about the balance of medical to "lifestyle" posts on the forum I thought i should be more active on the medical side. I do actually feel quite good at the moment. It took fully the six months they said it would take to get back to "normal" after the pneumonia - I poo-poohed it at the time but they were right.
But hey, its winter so who knows what will happen or when it will strike - same for us all. We may be moving house before christmas (contracts not yet exchanged) so although I'm excited, Im also hoping the stress won't slay me!
My sis-in-law has bronch like all you who've had it for most of your lives. And she is currently nebbing colamycin which I assume is similar to tobra? How hard for you to have to take such heavy drugs just to keep it under control.
You are so generous with your information and I really appreciate that.
I am so pleased you feel so much better and long may it last. Moving house exciting and stressful en equal measures. Lots to do I guess but make sure you don't overdo it. It will be lovely once you get settled.
Yeah lots of bronchs neb antibiotics quite successfully. Colomycin and Tobramycin are in a different group of antibiotics to one another but the idea is the same. I had a bad reaction to nebbed Colomycin which built up over a coupe of weeks and put me in hospital. Tobramycin is not as dramatic but the effects are not good for me. I won't go into it as this thread is about you sweet and not about me me or even mee!
Glad you are much improved.
As an aside have you seen Suffragettes. My friend has seen it and says it is good and refreshingly shows things from a working class perspective.
Another reply to you below Cof, forgot to press reply.
Re Suffragettes, Rita just said that they rewrote the script when they realised that it had been so much from a middle class perspective. I hadn't picked that up, not reading much at present. xx
Suffragettes was excellent Cof. So good I managed not to drop off once It referred to Sylvia P, but didn't feature her, perhaps because there was a big split about ways and means and she was more pacifist. The film stuck to the actions of the women which made a clear narrative. We owe them a lot. x jean
I think we are going to Suffragettes tonight. Looking forward to it, presume it must feature a fair bit about Sylvia Pankhurst since she worked in the East End and was a socialist. But there were so many working class suffragettes unacknowledged by history. It will also be great as our neighbour's teenager is having a birthday party and we have very thin walls ! xx
Hi O2, I remember my first respiratory physio telling me to always get rid of it, don't swallow. I don't really cough up huge dollops of mucus, except in winter when I seem to have exacerbations, although they have never been tested as infections. Strange. I do cough into a tissue when out and about if I have to. There always seems to be a connection between shifting more mucus in the early hours and eating anything buttery or fatty the previous day. I am sure there is a strong connection in my own case between acid reflux and bronchiectasis, although not one consultant will say yes or no to that. I have just had a CT scan to examine the spread of the bronchiectasis, and to get a formal term for it as you have. I know it is in both lungs though. I wish you the best. xxxx stillmovin1
Hi stillmovin - presumably you are thinking the buttery or fatty stuff could be creating more mucus? I spit into tissue at home and swallow when Im out - personal protocol
And Im like you i think, not so much mucus except when exacerbating. And i think there's a strong connection between reflux and bronch. My consultant said there is no way of knowing if the stuff that comes up from my upper airways is reflux or bronch but he presented all my conditions as very connected together.
I hope the CT scan shows as little spread as possible, and hope you're keeping well. I was wondering how you are xxx
Hi again O2. Yes, some things do create more mucus in me and it hits generally in the early hours, as does my acid reflux, which means I am up shifting mucus, then dozing off again, then up again, and this can be mostly every night. I get poor sleep now. However, I am quite desperate to get back the weight I used to be in 2010, which was a quite normal 57kgs. Since acid reflux and bronchiectasis problems, it has not moved upwards from 47kgs (7 stone) which is a BMI of 16 instead of a normal 20 for my height of 5ft 6ins. All that means I am now waiting to see a hospital dietician (did so before a couple of years ago and they admit to finding it hard to treat acid reflux and they use similar treatment as for IBS, which does not work for GERD at all). That is all a long story. I find that being a naturally anxious person makes the acid reflux and bronchiectasis symptoms worse and I have tried lots of typical treatment (meditation, relaxation, etc). but worries are all there in the early hours of the morning, like some sort of default action that steps in and takes over. It is surprising how my symptoms seem very light and sometimes barely there when I am not fearful and worried. That is rare, however, but I realise that it could be a major key in helping me get better!
As for yourself, O2, I know you will get to manage bronchiectasis well as you sound like a very focused person. All the best. xxx
I had awful anxiety and horrendous panic attacks (about mortality issues, rather than being not able to breathe) during my pneumonia recuperation and i was having bad trouble sleeping. My GP gave me Mirtazapine and i take the smallest dose possible but boy, has it made a difference. Im much less anxious and i sleep for England. I didn't want to take it at first but eventually did and so glad I did.
Maybe if you could worry less and sleep better, your weight might improve a bit. Mine has gone up from 120 lbs (no good with kilos) to 132 since taking the Mirtazapine.
But please ignore if you've already been down that route, just thought Id mention it.
Hope you get the referral to the dietician before too long.
I have Bronc, Copd and chronic asthma and make an awful lot of mucus, when I was first diagnosed with Bronc about 4 years ago my consultant told me not to swallow mucus that I cough up from my lungs, as most of the time I had at any on time at least one bacteria playing around in my lungs and even though I'm on maintenance abs they don't cover all bacteria that sneaks in. He called it a circle of infection if you swallow the stuff and it's infected you could pass the infection onto other parts of the body and in the end it could get back to your lungs.
So I carry lots of tissues, poly bags and hand sanitizer and don't give a hoot what people think when I start coughing. I look upon it as a form of medication to try and keep my lungs in some sort of order.
That's an interesting viewpoint Sue, thanks. Certainly interesting to me as I have reflux and take ppis, so there's less stomach acid to kill the bugs.
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