Help I need a night out !

[carolg1]

Hi everyone hope you are all as well as you can be, I'm needing advice , as a lot of you may know I suffer with copious amounts of mucus but during the day so long as I'm near a toilet or sink I cope reasonably well my breathing isn't too bad but by 4 o'clock things start to go downhill I can barely walk about totally drained and breathing not good at all because of this I just don't go out, but my family are having a special gathering and I would really like to go, I'm getting really anxious just thinking about it ! (I suffer really bad with anxiety at present ) to add to my misery any help please xxx

[sassy59]

Carolg that sounds horrible. Petes mucus goes into overdrive sometimes in the evening. Can you take anything to help get you through an evening? Rest up during the day too. I just hope you get to go out and enjoy yourself. Xxxx

[mrsmummy]

Does it help to do active breathing exercises and get rid of as much mucus as possible during the earlier part of the day?

[carolg1 in reply to mrsmummy]

Hi mrsmummy thought I had replied to you but it disappeared?. I think that's is my problem I'm expelling mucus from the minute I get out of bed it literally pours out, I don't cough very much at all it's more like wretching buckets of the horrid stuff it's totally exhausting and gross I'm lucky if I get 2 or 3 hours during day from having my head down the toilet , by 4 I'm totally drained of energy and my breathing becomes harder so scary, thanks for replying really appreciate it.

[mrsmummy in reply to carolg1]

Perhaps the GP or a respiratory nurse will have suggestion for you. I hope you go and enjoy it.

[Sunflower13]

You poor thing, that does sound awful. Do you drink lots of water throughout the day to keep it thin & easier to cough up? I think as the others say if you can clear as much as you can during the day, that will help. I would also speak to your GP or nurse, whoever looks after you & tell them how important it is for you to be able to go to your special family get together - they may be able to come up with something else, I think if you could get control of the mucous a bit more that will help with your anxiety about going. Good luck & keep us posted 😁🌻X

[carolg1 in reply to Sunflower13]

Hi sunflower, as you'll see from my reply to mrsmummy I'm at it most of the au I darent go far at all, I'm with gp on Friday but I don't hold much hope from her she's at a loss as to what's going on at present they are thinking non acid reflux ?? But tried loads of meds I'm on baclofen at present but it's not changed much but it's not making me feel too well either , one more pill to try apparently has a touch of morphine in !! Which I'm not too happy about but if it works il be happy xxx

[Sunflower13]

You never know - good luck with the new medicine. I really hope you get out & enjoy your family 'do' Best wishes 🌻x

[Roessner541]

Get some anxiety meds from your dr. Take musinex twice a day or similar product.

[jessyjay]

Hello may I suggest that you do some postral drainage twice a day to clear your lungs.

Lie on the bed and take deep breaths to cough up as much as you can make sure you

use your ventolin inhaler before or better still a salt pipe it works wonders for me .

[Hidden]

Hi Carolg. I have been watching this stream, trying not to get involved. However I now feel that I have to. So let's go through it.

I don't know what your diagnosis is or even if you have received that diagnosis from a chest consultant or simply from your GP?

The production of a lot of mucus on a long term basis is more associated with bronchiectasis than COPD. Many of us with bronchiectasis have a daily routine where we spend upwards of half an hour in up to three sessions, just doing physio and emptying our lungs - every day. I have always had plenty to cough up but this is under my control and does not stop me going out unless I have an exacerbation, when I feel too poorly anyway.

An exacerbation occurs when the bugs which colonise my lungs get out of control and keep producing and producing mucus. This has to be treated by whatever antibiotic and means of delivery is appropriate until it settles down. In bronch this means higher dose and longer periods of abs than usually given to COPD or normally well patients.

There are also a group of bacteria called anaerobes which can get into the lungs and the stuff they produce is like a green volcano going off all day. Other bacteria grow in areas of the lung where there is oxygen. These little blighters grow where there is no oxygen, in the nooks and crannies. They do not respond to the normal antibiotics and need a drug like metronidazole ( vile but effective).

It does sound to me that whatever the basic cause, you have an untreated and uncontrolled chest infection. If your GP has not already done so they should give you a high dose complex antibiotic for at least 14 days to try to get it under control. They should also be sending sputum to the lab to find out which bug is in there so that you can have the correct antibiotic. Be warned, labs do not always find the bacteria and anaerobes take at least nine weeks to grow so many labs just don't bother to look for them. There is no doubt from your symptoms that something is having a party in there.

Most importantly, insist on a referral to a consultant who also specialises in bronchiectasis. You need a proper diagnosis and your GP needs the advice from the consultant as to how to treat you and you need help and advice as to how to manage the daily mucus so that you can lead a normal life. With your condition not being treated properly you have no chance of getting it under control at the moment, whatever you do for yourself.

You certainly cannot go on as you are. My heart is with you because I have been there, especially when I had anaerobes and it took months before a clever lab tecnitian found them.

So my dear, get that GP under orders and insist on that referral ASAP. You need a life.

I hope that I haven't sent you to sleep with all of that and good luck.

[shadow4me in reply to Hidden]

I have the same symptoms has Carolg 1 I wonder if I have been wrongly diagnosed has most of my problems seem to be upper bronc airways x

[carolg1 in reply to Hidden]

Oh wow someone that's actually understands what I am going through , I am fighting for my life every morning and most afternoons , I make that much mucus it's unbelievably, I know for a fact if I were not on oxygen I think I would have died by now for sure, because that much expels at once I can barely breath it's like I've stored it up in a huge sack on my right lung, which is were I had radiotherapy for a cancer in my lung which at present is ok stable, I ask them about the mucus and all they say is they can't see any changes in my lung so all good, and I know it most certainly isn't, but because I have to put my fingers down my throat to wretch it out because I don't cough much at all my doc thinks it's more reflux, so why can't I breath till I've got shut of it, I am so confused and often in total distress, thanks for replying it does mean so much xx

[Hidden in reply to carolg1]

oh dear carol, you have so much to cope with. I believe you are right when you say that you have stored it up all day in your right lung and then it has to come out. That is exactly it. It needs to be systematically coughed up. I don't cough in the sense that people think. I only tend to cough when I am doing my physio to get rid of the sputum. But the sputum makes itself every day. You need some sensible help from a consultant who knows about post operative damage to lungs and what this means in terms of how you manage it. I still think that you need investigating as regards the need for a serious dose of abs. I'm sorry that I don't know anything about lung cancer.

[carolg1 in reply to Hidden]

Hi little Pom bless you and thanks for your advice, I think you are right but say today and this is a typical day, the minute I get out of bed I can feel it all in the back of my nose n throat giant globules start coming up and I darent move too much because I can barely breath once I start expelling the mucus it's like I've opened the floodgates I literally have to put fingers down my throat to wretching it out this can go on till noon from nine in a morning sometimes earlier it's getting later as I don't want to get up because I know what is coming even though there is still more down there I can stop for a couple of hours but could easily keep going consequently by four I am so tired and my breathing is quite poor , yet my tumour is said to be stable and my respitory consultant says he does not see the mucus on my X-ray so he thinks it's more reflux related, yet the reflux consultant says I only have mild reflux ! So I am so confused and in a desperate mess. I think I've tried just about everything thrown at me. Thank u so much xx

[shadow4me]

Hi Carolg 1 I know we have spoke before about reflux but the symptoms you are getting in the later part of day and evening I suffer with to I have to do anything that needs doing in the day has by 4pm I start to feel ukk . It has got to be something to do with reflux causing asthma like symptoms .If you are on Fostair try a extra dose before you go out it may help they told me that rather than take oral steroids that when I'm struggling to use my fostair xx

[shadow4me in reply to shadow4me]

Also I found Littlepoms reply very interesting for us both x

[Hidden in reply to shadow4me]

Hi shadow4me. In bronchiectasis the mucus can gradually build up during the day until, if a regular programme of coughing it up isn't being used, it will make itself known and demand to come out! Hence the 4pm signal I guess. Bronchiectasis is often misdiagnosed, especially as asthma. It can only be diagnosed by ct scan so requires a consultant who specialises in bronch. Most GPs and even many general respiratory consultants are woefully ignorant when it comes to bronch. I have acid reflux but this does not cause my mucus production, the bronchiectasis does. I have never taken oral steroids because they mask the symptoms but do not tackle the cause of bronch or an exacerbation. I have fostair inhalor which helps to keep down inflammation in the airways and tiotropium to help with a keeping the airways open. Maybe a referral to a consultant who specialises in bronchiectasis could help you sort things out. I hope that helps.