My Mum is a very healthy and active & positive 89 year old - acts 60 ! She’s been diagnosed with left lung damage & bronchiestasis - she gets so much mucas & has a constant cough - keeps her awake all night for years - doctors seem hopeless - can anyone please recommend a specialist? Eg. Should I ask to go to St Thomas in London or another top hospital for more tests ? She’s had various mucas thinking pills - it’s giving her a phobia now of eating out - she coughs which makes her bring up mucas - horrid disease ( non smoker ) eats healthy - also has diverculitis - sorry about my spelling I can’t spell check whilst in here
Bronchiestasis / COPD My Mum now vomi... - Lung Conditions C...
Bronchiestasis / COPD My Mum now vomits with mucas every time she eats
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Avidreader
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Well, I found your post very interesting and I have a similar problem. I suffer with bronchiectasis and find after eating I feel mucus rising in my throat, I cough and find it easy to bring up the loosened mucus. As it happened quite regularly I mentioned it to my consultant. He said, yes, I does happen quite a lot but we don't really know why this is. I believe it may be the result of the action going on in our body relating to eating, chewing and swallowing. The movement is loosening the mucus which in turn becomes easier to evacuate from our throats.
I appreciate your mother's dilemma about eating out. All I can suggest is she learns how to huff, to expell the mucus before leaving for the restaurant. Ask her doctor about giving her an acapella to clear the mucus. Best wishes, Chrys
Thanks for your answer - she does all the huffing - ! She also walks daily - & beloved that she coughs all night because she’s not moving - The Salt Cave in Bexley Heath is the only thing that’s ever helped but it’s a 1/2 a day out & I work so she can only go once a week - she really needs it daily - the salt pipes don’t seem to work - I’m looking at a salt cave in her garden but expensive! It really is making her depressed now - a very odd illness - interesting as she goes to breathe Easy club & also choir to help - but no one seems to have like you & her this mucas on eating - wish there was an answer ! Anyway today I’m going with her to GP to ask to see a specialist - as she’s not seen one for over ten years since diagnosis - maybe there’s a new bit of research !!! Miracle needed !
Well your answer says it all. You are right, she needs specialist support. I'm amazed her doctor hasn't suggested it before. Your mother is, like me, trying to do all the right things to help herself. As a ady of her age she is doing remarkably iwell so far. However, if she becomes depressed because of her very debilitating situation she will be adding to her problems and the N.H.S. She should be enjoying her twilight years. Get her the help she needs.
Just a quick note. You sound as if you are doing everything to support your mum despite your own difficulties. You have reached out to us on the forum. Keep in touch and let us know how things progress. Dont forget to look after yourself too and if at any time you feel its all getting to you just remember, a problem shared is a problem halved.Give my best wishes to your Mum. Chrys
I’m going to ask for the Royal Brompton Hospital- after phoning helpline suggested on here ! Wish me luck !
You are in my thoughts! Go for it!
I’ve made notes from all comments here too ! Kick ass !
• in reply toAvidreader
I have a Salitair salt pipe. I can sit puffing for half an hour at a time. in the comfort of my own home, no extra cost.
amazon.co.uk/Salitair-Addit...
Avidreader• in reply to
Mum has a salt pipe ( doesn’t seem to get deep enough ) and ACAPELLA , and a salt electric thing that filters salt air into her bedroom - goes to salt cave , avoids dairy eats home cooked healthy - but now she coughs constantly- needs the salt cave which seems to be the only thing that helps but long drive etc - I’m looking at getting one in her garden but £1,000’s ! Why don’t local hospitals have them I wonder ?
And apologies once more in the spelling of those words !
Hi, you’re poor mother. She really needs a bronch specialist as nobody else will do. I’m hoping you get more replies soon. Xxxx
Yes she only gets approx 2 hours sleep at a time now - I’m wondering London hospital ? We live in Kent
HI Avidreader, So sorry to hear your dear Mum is struggling with these health issues.
Agree absolutely with RoadRunners comments. It is unacceptable that your Mum does not have a respiratory consutant (with a special interest in cf/non cf bronchiectasis. It is best to look online to find a consultant at a hospital, usually within a large city. You mention London and there are quite a few consultants there with a special interest in cf/ncfbe. There are other excellent centres throughout the UK and someone might be able to assist/recommend if you mention an area acceptable to you. You can contact them and ask if they would accept your Mum as a patient as you note they specialise in the condition she has, if yes, then let your GP know and ask them to refer you.
Just one thing to note. Whilst people get excellent treatment if they travel to a good centre, one problem which people have come across is that if tey have to go into hospital, which was unplanned, it would be to their local hospital.
Hope you get something sorted for your Mum which will help with these unpleasant symptoms.
Good luck
Love cx
Can you see recommendations of consultants online ?
Yes - take a look at a large hospital you could access. If you have problems please pm me and if I can I will help.
Cx
Hi, I'm wondering if your mum has reflux too. It seems lung disease and reflux often go hand in hand. Excessive digestive phlegm will make her cough & choke too, a vicious circle with both to contend with.
The lung mucus thinning drug is usually carbocysteine and needs to be taken regularly. Does she use huffing technique before meals?.....many people with bronchiectasis have to use physio morning and evening to shift the lung mucus, does your mum?
I wish I could help more. You could try calling the BLF help line 03000 030555 office hours. They're great. P
They did say she reflux - and COPD & Bronchiestasis- she does everything possible ! Huffing , physio , acupuncture , salt cave , salt pipe , had the mucas thinning tablets - she gets streams of it ( left lung ) what an awful disease - calling this helpline ! Thanks sooo much
Good luck xxx
ps some people find a flutter device helpful to expel lung mucus.
What’s a Flutter device ?🤗🤔
It's the same sort of object as an acapella. They both help to expell the mucus.
Out of interest I am starting on a six week course specifically for bronchiectasis. There are others for other lung problems around the UK. I had a referral from my clinic.
I went for a full assessment yesterday (2 hours) before starting. From what I understand the sessions are split in two. The first half is appropriate exercises and the second part is learning how to live and deal with individual lung problems to get a better quality of life. . I know you said she attends a Breathe Easy Group but this is different. Why not make enquiries with your doctor or consultant when you see him/her.
Hi. If you put flutter device in the search bar older info should come up. You may be able to get them via Amazon. I've not used one myself so unsure if that's the correct name. P x
Thanks all for your replies ! I’m taking Mum to GP this pm. To insist on a referral! She’s a good GP but then they left me on Levothyroxine for 25 years ( which never worked !) if anyone can suggest a consultant who specialises and more importantly LISTENS ! I can travel to London - we live in Kent
Wishing you lots of luck this afternoon. 💐 I echo what cofdrop said about being aware if your specialist is not local to you. My hospital isn’t that far away, maybe 15 miles, and when I was admitted to my local in September with pneumonia, it was a mess. They discharged me, claiming they had spoken to the Royal Brompton who were happy with the plan. When I saw my respiratory consultant later, there was nothing on their system to say there’d even been any contact! The Brompton suggested I have shared care as my case is quite complex. This means I remain under their care but also have a respiratory doctor at my local hospital who can oversee my care if/when I’m admitted there. Just my story, hope this helps.
It shouldn’t have to be like this should it ! Just back from the GP - I’m exhausted TBH - as Mum is hugely independent & gets aggressive when I try to go to doctors with her - GP wouldn’t refer to Brompton London , but is referring to local hospital specialist in Margate - she says if they can’t help - they will refer to Brompton - Mum last went to the specialist in Margate about 10 years ago ! Mum however was much brighter when we came out of GP ‘s so it did perk her up mentally ! I went in on my own first ( said my thoughts ) then came out & Mum went in ! It’s not easy dealing with a very independent but very ill MUM
I feel for you. Sending virtual hugs! It’s the other way around in my situation. I’m 31 and my mum wants to help but I’m independent (and stubborn). To be honest, it’s a bit disappointing they won’t refer to the Brompton. I’m certain you have the right to choose where you get treatment. If you’re not happy with the referral, you are always entitled to a second opinion on the NHS and if I were you, I’d insist on the Brompton’s input. This link on patients’ rights should be helpful hopefully: citizensadvice.org.uk/healt...
If you can travel to London it’s probably worth trying to get a referral straight to there though Royal Brompton is a tertiary centre so you might have to go via your local hospital
I would be surprised if kent has a cpd specialist given the proximity to london which has many
I am under one at UCLH for monitoring my Bronchiectasis which is thankfully mild at moment.
ekhuft.nhs.uk/gps/our-consu...
This doc has an interest in cf and would therefore have expertise in bronchiectasis.
If you want to travel to London The Royal Brompton is a centre of excellence
rbht.nhs.uk/specialists?sea...
Cx
This is amazing thanks so much ! I tried for this - but GP has insisted MUM goes 1st to local specialist in Margate - ( mum seen by him once about ten years ago ) see my comment further up in replies
I hope your Mum is seeing the consultant in the first link. I notice you feel the salt cave has heped. Some folks with bronchiectasis nebulise what they call isotonic saline, which just means the strength is 0.9% (the same strength as other bolily fluids. Many, including me nebulise hypertonic saline, which comes in higher strengths - 3%, 6% and 7%. When you see the consultant you might want to ask if they think it might be beneficial for your Mum. She would have to have an assessment dose as an outpatient.
I still can’t believe your Mum has not seen a consultant for 10 years.
Good luck
Cx
And despite my demanding Mum sees a consultant- GP has said 1st she just goes to local respiratory
Clinic - then if they can’t do anything they will refer ! So frustrating-
That is not good at all. Check out online the consultants at the place gp is referring. Did you manage to get through to the other consultants to ask if they would accept your dear Mum as a patient?
I am so frustrated for you and your Mum.
Cx
Please advise the consultant you mean ( in 1st link ) as I’ve got a bit confused with the various links - sorry ! Just making copious notes
ekhuft.nhs.uk/gps/our-consu...
Not sure how close he is to you but one of his special interests is cf and so he should have expertise in bronchiectasis.
Try contacting his secretary direct and ask if they would accept your Mum for consultation. If they say yes, then go back to your GP and explain they have accepted your Mum but need a referral.
Is Estuary View specifically respiratory. The only thing I can find looks like a surgery!
What reasoning does GP give for not referring your Mum to the Brompton.
Good luck.
Cx
Actually now just been referred to Estuary View Respiratory Clinic - GP said not allowed to go to Brompton - 😐despite my asking firmly twice !
Hi and I'm so sorry to hear about your Mums troubles. I was diagnosed a couple of years ago and found the the NHS quite good but rather dismissive. I was 54yrs, a single parent, had children later in life who were under 16yrs and still relied on me greatly. We live in the country with horses and dogs and I was the one who did all the work, until I fell ill and them my 14yr old had to do it, and cook etc. I decided to find the best specialist in world, one who was at the forefront of all the latest research etc. It turned out that a Mr Adam Hill based in Edinburgh was the guy, and as I lived in Ayrshire a happy coincidence! I paid to see him privately and it was the best £250 ever spent. Amoungst other things it turned out that I was on 1/2 the dosage of antibiotics that I should have been,. Now when I get a flare up I take them twice a day for two weeks, not once a day. The difference has been amazing, I have my life back. Obviously I still get unwell but maybe 2-3 times a year as opposed to going only a few weeks between antibiotic courses. I also use a lot of hand sanitiser and saline nasal spray to kill bugs before it causes a flare up. Your Mums situation may be more advanced than mine, but I would recommend traveling to see him if you can. People travel regularly from all over to see him. Strangely I too have extensive diverticulitis and have often wondered if there could be a connection! Best of luck X
Thanks for this - sorry for delay in reply - I can organise a trip - I see a nice hotel in approaching !
Ps . She never seems to get antibiotics- and if so just a few days !
Has she seen a physio? The active cycle of breathing might help . Personally I'd stay off dairy products and keep hydrated. Good luck to your poor mum.
I made MUM stop dairy - and wheat but she said it made no difference- tbh she seems to cough , gag with mucas nowadays even with a cup of green tea ! She saw a physio & walks daily - buffs etc
Huffs - should read
I think we live in your general area. My husband has been under the care of QEQM Margate hospital for about 25 years. After reading lots on this forum we recently requested our GP refer us to a bronchiectasis specialist and saw Dr Syed Hussein (we saw him at Benenden as we are members) but he practices in Medway and Maidstone I think. A new eye was incredibly helpful, and he has changed all his medication and done new tests and although my husband is severe there has been a small improvement.
Also does your mum take omeprazole? I had similar problems myself although I have asthma not bronchiectasis, but I coughed all the time (years) always a very productive cough, and sometimes until I gagged, and often when eating. Omeprazole stopped that almost immediately!
Good luck. Let us know how you get on at QEQM.
Thanks so much - sorry for delay - busy life - and my own health thyroid is an ongoing journey as I have to self Medicate etc This is very useful - Mum was diagnosed with reflux years ago - but said it didn’t do any good - but TBH it’s such a mess & she’s so independent- I sometimes get 1/2 the story - I try my best to help her manage it - but she’s stubborn & it can cause arguments - I will pass this in to her - making notes from all the helpful
Comments -
Seeing him tomorrow at 7pm £250 -
Medway The Spire
Hope you find it useful and get some help. Let us know how you get on.
Have you tried Salt Cave therapy? It helps COPD
Stan England
Avidreader• in reply to
Yes I try to take her as much as possible - but it’s an hour & half journey away - and I work - I want to get one for her installed at home - but she resisted ! Have you got one near you ? I wish all hospitals would install one locally !! NHS are very closed about these remedies but it’s the only thing that’s worked !
Salt cave therapy
Good idea to try omeprazole
Gastric reflux is v common post 60 I am told - I am on oral chemotherapy and had terrible problems until my consultant gave me this to take no an as needed basis
One per day
Hi, I have been following this thread with interest. I am a lifelong bronch (66 years since diagnosis). I won’t talk about consultants or methods of loosening mucus as you have had such good advice from others, especially cofdrop. I am going back to your original question about your Mum having mucus come up when she eats.
The crucial thing about living with bronch is managing it. The patient has to be in charge, not the condition. To live a normal life the emptying of the lungs has to be organised around the patient’s routine so that it is possible to go out ( shopping, cinema, work) or eat without retained secretions in the lungs working their way out whilst taking part in these activities. This can happen when a bit of food sets off a coughing mechanism, which can happen to anybody or even laughing and moving around which loosens what is sitting there. This means a lengthy and concentrated period emptying the lungs before carrying on with eating or activities or at different times during the day. It is tiring. It is tedious and it is tempting to get rid of some of it and then finish without making sure that it is all out.
It is also a good idea to know where the loo is anywhere that she goes ( that is going to be the title of my book) because even the most organised of us can be caught out, especially if there’s an exacerbation going on.
We are all different. Some only have a lot of sputum when they have an exacerbation and some, like me, produce copious amounts all the time which is worse in colour texture and amount when I have an exacerbation. If I didn’t organise my mucus emptying I would have had no life. I volunteer at a heritage centre and spend a lot of time emptying before I go to allow me to do everything that I need to without frightening the visitors.
You do not mention whether your Mum has had any antibiotic treatment lately. If not, she may be producing more than she should because there is an exacerbation going on and a good dose of abs could reduce it. Of course, this is where a good bronch specialist comes in. Don’t let the GP bully you. Your Mum is entitled to go to any consultant she wishes. A general respiratory consultant is useless. They are not trained in it and don’t have enough experience. How any GP can allow your Mum to go ten years without seeing a consultant defies belief. It’s a new GP she needs!
She has done amazingly well so far and it can be better for her. Personal organisation and a decent bronch specialist. Oh and by the way, we long term bronchs are all bolshy, independant types because we have spent a lifetime fighting the gunk boggart within ☺️ good luck.
Avidreader• in reply to
Amazing and helpful - thanks so much - yes GP has just referred mum to the Estuary View respiratory “ team “ despite me going in and forcefully asking to go to Royal Brompton - but I think GP s are under pressure not to refer - financially ??? 🤔I’m really exhausted by it - so lord knows how Mum feels - I think I ll take her privately to see specialist
• in reply toAvidreader
The problem with private specialialists is that they are mostly general respiratory consultants and don't know much about bronch. Your GP cannot refuse to refer her to the Brompton although it is worth you looking to see if there is a bronch soecialist close to you. Also look at the Estuary View team to find out if they have a consultant with knowledge of bronch and insist that she sees them. All this is ridiculous and as you so rightly say, exhausting for you and your Mum.
Avidreader• in reply to
And as she’s having to wait until March - to see the “ respiratory team “ at the age of nearly 90 ! I feel it’s wasting her precious time - there have been a couple of suggestions on here of good specialists - so I will pay privately as otherwise we will have to wait for months again - I reckon - she really isn’t sleeping and it’s been going on for years now -
• in reply toAvidreader
I hope that you get some resolution so that your poor Mum can be more comfortable than she is. Do let us know.
The"vagus",not sure on spelling, nerve can be cut to stop the mucas have a talk with your doctor and get the right spelling and all about that nerve and how they do it. I hope you get it sorted regards Tom
• in reply totomhatha
Don't know where you got that from but NO just NO!
I read just last week on work on the vagus - in the daily Mail I think - pioneering trials - some sort of electro therapy on it I seem to remember
Hi Avidreader, what a problem for your Mum. I have bronchiectasis too and find that sometimes the overload of mucus is dreadful and because I suffer with my sinus's it stays in my nose and then feeds my chest. When things get too much I take antihistamine and use a nasal spray as that dries up the mucus and gives me some relief, ask her gp is she would be ok to try this out, its worth a try if only to give her some temporary relief. I would also ask the gp to sent her to ent to have her sinus's checked, they could be infected and keeping the problem going x
I keep saying maybe she should see ear nose throat specialist - it’s hard as Mum is very independent & gets pretty ratty with me if I interfere ! There’s only me to be there for her too
My mum was the same, so independant, but try to make her understand that this could give her some relief and would help her in the end. I have three sisters but it was left to me to look after mum as I was the one that lived near to her. Try to keep your chin up, its not only hard work looking after an elderly parent but a worry too. Lets hope you can get a referral quickly x
We will never I Believe see another generation so stoic & tough ! I’ve made lots of notes from all these supportive people in this forum - new plans !
The ENT recently diagnosed my near constant gagging cough as reflux, put me on omeprezole, and greatly reduced the problem. My Copd and fibrosis are still there, of course, but the extra mucus like cough up has almost gone.
That’s interesting as Mum was 1st told it was reflux - but she says it’s not made a difference- it’s so frustrating- she literally drags herself around some nights not sleeping until 5am or such like - understandably I think she’s a bit depressed - not with others - but pretty aggressive with me - 😐
Hi it's me again from Scotland. The specialist I mentioned is also in charge of trials for new treatments, nebulising hypertonic saline being just one. I am going to go on one of these trials. If you get a chance google his name and you could always call his secretary and ask who he works with on the trials down south if you don't want to travel. Just a thought, but I think you could waste time going to the wrong people. I certainly did and wish I had gone to the top guy when first diagnosed. I spent two years grumpy and exhausted!
I would be so tired I would trip over make bad judgements due to brain fog, and be very snappy with my children 9yrs and 13yrs
With a decent sleep things might improve. I rake co codamol 30/500 before bed every night and it really helps. I'm back on antibiotics again, two weeks of Doxycycline 100mg twice a day for two weeks. My rescue dosage of two carbocistine 3x a day and I use the strongest version of Avamys nasal spray every night. This is the minimum your Mum should be on and what is now recommended throughout Europe. I hope this helps X
Ps how does co-codomal help ? 🤔
So helpful - thank you - had a bad day with MUM today - as she is understandably depressed & is ratty with me 😢
The cocodamol helps with aches and pains and makes me sleep better.
Your Mum is probably very tired which is very frustrating for her and no doubt upsetting for you. I also forgot to mention my inhaler which I can't do without...its Fostair 200/6 😊X
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