Have bronchiectasis - seeking help with coughing!

[optimist60]

My partner has recently been in hospital with pneumonia, pleurisy, and then bronchiectasis. He already has been living with COPD, without a cough, for 10 years. He was supposed to see a chest physio in hospital but this never happened. He's now trying a flutter device, and trying coughing exercises from internet info - but often awake all night coughing, and not always able to get mucus up. Is it necessary to see a physio? Have others found the flutter works for them? any hints you can give much appreciated - we would both like to get some sleep!

[Mocarey]

Is he on Mucodyne capsules they are good for thinning the mucus and making it easier to get rid of. I don't see a physio for my bronchiectasis but each individual is different. Some of us, like me, cough a lot, others hardly ever. Good luck, I know what it is like to be sleep deprived. My hubby wears ear plugs each night!

[optimist60]

Hi, and thanks for the rapid response. Yes, he's on Mucodyne and they have helped a bit - but not enough.

[Hidden]

A physiotherapist could show how to do breathing exercises (eg huffing) which help bring up gunk with much less effort. Try pressing your GP for a referral.

[Claire317]

I cough a lot, especially at night. I had my first physio session yesterday and found her advice very helpful. She showed me huffing and some breathing exercises but also told me drinking lots of water or juice helps with the mucus too. Hope your hubby feels better soon xx

[cofdrop-UK]

Hi optimist

So sorry your dh has been so poorly.

I assume he has had a ct scan in order to diagnose bronchiectasis. With bronchiectasis he should most definitely be under the care of a respiratory consultant, especially one with a special interest in cystic fibrosis/bronchiectasis and not just your gp. You need to be your own advocate and look at your local hospital site's list of consultants or Dr. Foster and ask your gp for a referal. There is a site some of us belong to also called Bronchiectasis R Us, like here they are a wonderful family. One of the topics is recommended doctors, mind it is international, but you may find one in your area. There is also a topic on physio,

As Mocarey has said even though bronchiectatics have the same condition, we are all different in the amount of mucus we bring up, the techniques we prefer to use to get up the mucus and the gadgets which we feel work for us. This is why it is important that you see a good resp cons. One of the things he/she should do, which is essential is to refer you to a respiratory physiotherapist who will teach your dh all the different physio techniques for getting up the gunk and will show you gadgets which will help with this, and hopefully find the one which suits your dh best. I note you already have a flutter. Some bronchs like it - personally I much prefer the acapella as you can use this in any position, useful if you do postural draining with percussion. Please note once you have been taught physio you will be expected to do it yourself as it needs to be done every day.

Does your dh have a nebuliser already for his copd. Nebulised saline is brilliant in my opinion at loosening up the gunk and making it easier to get up. You might want to ask cons about this.

Many of us have been 'loaned' nebulisers and given acapellas from the hospital, but I know some unfortunately are not so lucky. Hope you get one, but if not here is a link where you can obtain an acapella, but I would hold out first as their not cheap. If you purchase one ask for a medical vat exemption form which has to be signed by a medic. I was given the 2nd one by the hospital the green Acapella Choice.

henleysmed.com/page/acapell...

I am astounded your dh did not have access to a physiotherapist in hospital. It seems to me they got you dh over the crisis he was in, but as far as the bronchiectasis is concerned it seems you have been short changed.

This constant cough needs looking into I would suggest.

So to summarise what you need to do for the condition of bronchiectasis.

1. Do your homework and find a resp cons with special interest in cf/bronchiectasis.

2. Ask your gp for referal.

3. Ask cons for referal to a physiotherapist, which he/she should do anyway.

4. Ask if cons thinks nebulising saline would be beneficial for your dh.

5. Obviously follow any new medication regime and do the physio (it is the most

important thing we can do for ourselves, to help keep infection at bay).

A lot to take in I'm afraid. If you want to chat please don't hesitate to pm me. I'm not an expert, just someone who has had bronchiectasis for 64 years now. One thing I have learned is you never stop learning and I learn something new every day from my bronchi pals and from peeps with other lung conditions.

Good luck

With love

XXX

[optimist60 in reply to cofdrop-UK]

Hi Cofdrop

thank you so much for your detailed and helpful answer - very much appreciated and good tdo know we are not alone in our struggles. This web community is a wonderful thing, and makes up for the gaps in the poor old NHS...

[dinnyrayner]

Hi Optimist,

great adice from Coldrop xx , I have had Bronchiectasis for 54 years and i only get a really bad cough when i have a chest infection , but it does get really bad at this time . I have been trying for years to find out why it gets so bad and what to do when it happens . How does your partner feel with the coughing ?? does it get desperate ?? does it hurt ?? is he able to breath ok ?? , i will try to offer some suggestions if you can tell me the severety of the coughing . I used to cough all the time too but then i had very little help or treatment untill 1996 , i am glad to say that has changed now , coldrop is right , different things help different people but i have tried a few things , hope i can help . xxxx Dinny xxxx

[optimist60 in reply to dinnyrayner]

Hi dinnyrayner

my partner doesn't usually have pain with the coughing, and it doesn't happen every night. Hard to generalise as he's only developed bronchiectasis in the last few weeks.He's had one night of coughing almost all night, then a couple of good nights, then last night coughing for an hour or two. He then tried the flutter device, managed to cough some stuff up, and finally was able to sleep. He does get breathless from the exertion of coughing but is able to breathe. We have oxygen available as a back up but he didn't need it. We'd be interested to hear any thoughts you may have from your experience - it's encouraging just to know that it's possible to live with this disease. Right now he is understandable very fed up at the thought of this.

[dinnyrayner in reply to optimist60]

Hi Optimist60

My meds are , spiriva , salamol nebs , seretide , uniphyllin and exputex . The exputex is a liquid carbosisteine which liquifies the sputum to make it easier to cough up , therefore you reduce the coughing . I also do postural drainage , huffing and breathing exercises . I did find that if i did the huffing when i didn't need to it made me cough uncontrolably so i only do it instead of coughing now and not on a regular basis . I also find steam can be good sometimes but other times not good so it is a very hit and miss thing . I think i have found out what makes me cough so much i can't breath , i thought it might be the asthma side of my condition but i now think it might be inflamation . Ask away if there is anything you want to know or are not sure about , someone will point you in the right direction xxxx Dinny xxxx

[Hidden]

Sorry you are having such a bad time of it, I really do feel for you, my husband is the same, COPD, bronchoectasis etc.but luckily a physio came to see my husband in hospital the second time he was in with pneumonia and told him what to do and showed me how to manipulate his back to get the gunk up. When he was in the third time a physio came to see him every day for three weeks and showed him exercises and now we have one coming to the house as he cannot get to pulmonary rehabilitation. We were going to buy a flutter device as the physio told us they are not free, but someone on this website told us about filling a tall cup with water and using a straw to blow bubbles for as long as you can, this works for my husband it gets the mucus up into his throat and he can spit it out. I bought a child's tall plastic drinking cup with lid and pushed the straw through that so he can blow as hard as he wants without the water spilling over.

Ring your local rehabilitation service and tell them he never saw a physio in hospital, which is really disgusting, and you cannot get to their classes, they should send someone to your house. The hospital should have referred him to a physio, if he had not been in hospital then your GP could have done it.

We got no help at all from our GP's, they told us nothing, I found everything out from this website and online. We had to ask to pay to see a specialist as the GP kept forgetting to refer him even though he had told us he had done it. When we told him we were going private, he said, there is no need I will send a referral, we told him we wanted to see proof he had done it.

Everything is a battle to get what you want, so stick with it and do not give in, ring, ring and ring until you get what you are entitled to.

For any further information just ask a question on this site, you will definitely get an answer.

Good luck.

[optimist60 in reply to Hidden]

Sorry to hear you have had such struggles to get help. We are lucky in that our GP practice has a specialist COPD nurse and she prescribed a flutter device - but only after I'd found out about it on the internet and suggested it!

[Hidden in reply to optimist60]

We also have a COPD nurse at the GP's but she also never told us anything. Just said, sorry I can't do his checks today as he can't breathe very well. So I said, I know, that is why we are here for some suggestions and help. What a waste of space they all are at the GP surgery. A chemist who delivers our medication told me that they have so much trouble with the GP's receptionists that they call them all doctor as they think they are better than the doctors that work there.

Thank god we have help coming to the house now, my husband now as antibiotics on standby at home in case he needs them, saves us ringing the doctor and having to wait for a prescription to be done, then another day for it to be filled because by that time he is in hospital with pneumonia.

[Hidden]

I also have COPD, bronchoectasis etc. I am on oxygen 16 hours a day and take my nebuliser 4 times a day. The one I take first thing in the Morning and last thing at night is called Nebusal 7% and that is a fantastic help to get the gunge of the lungs. Unfortunately through the night although I am on oxygen I still cough and I have a very annoying rattle in my chest all night. Good luck to you both and if you manage to get some sleep please tell me.

[Hidden in reply to Hidden]

My husband is on Nebusol 7% twice daily and also 5% of another kind of thing for the nebuliser which he uses 4 times per day.

Like I have said, getting enough sleep is a problem due to his coughing, but I can't go in a different room in case he needs me as when he starts coughing the gunk gets in his throat and he can't breath so I have to manipulate his back to get the gunk moving. I am shattered because I have to carry on doing jobs during the day, but my husband can get a few hours sleep so he is okay

[cofdrop-UK]

Hi Optimist

You should defo have a referal to a consultant as well as access to your copd nurse. Nebusol 7% is hypertonic saline and your dh would have to have a assessement dose at outpatients to check if he can tolerate it. I use it some of the time, but often I just use saline 0.9% and it's pretty effective. You can ask your gp to prescribe the vials and would not need a trial as it is a much lower strength.

How is your dh doing?

Love C xxx

[lyndene]

I fine the best way is to take a deep breath in and the blow out as quick as you can do this about three times more if you can do it, this will loosen the phlegm/mucus and you can bring it up, then you should feel a lot more comfortable.