My husband has had COPD for 8 years now and for the past few years we have been able to go abroad on our holidays.
For the past two years my husband felt his breathing was getting worse (not on oxygen) so we decided to have our holidays in England. Everything was fine until the first week in January 2012. We both got a cold and since then everything has gone down hill. We are both coughing up all this gunk non-stop, but my husband is finding it absolutely terrifying as with his breathing problems due to COPD he is being choked with the gunk in his throat and cannot get rid of it as he has not got a strong enough cough to be able to cough it up.
He has now had pneumonia three times this year and was diagnosed with Bronchiectosis which is a different illness to COPD but when you have them at the same time you just cannot breathe. He has now a nebuliser and oxygen at home and our life as come to a complete stop. The silly thing about this is I have also been diagnosed with Bronchiectosis but I am able to cough all the gunk up and feel as fit as a fiddle.
Is Bronchiectosis caused by a virus or bacteria and how on earth can you get rid of it or are you stuck with it once you have got it.
When my husband had COPD on it's own his breathing was poor but he was not choked up with gunk, even the oxygen does not help him now has it cannot get past the phlegm in his throat.
The physio is going to let us buy an instrument called the Acapello which vibrates in his chest to remove the gunk.
I would be interested if anyone knows how Bronchiectosis starts and can it be cured once you have it. My husband will not die of being breathless he will die of being choked with the phlegm in his throat.
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11 Replies
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Hi Sweetthing
Sorry that you and your husband are going through such a terrible time. I was diagnosed with Bronchectasis and Sarcoidosis last year. From what my consultant said it is likely that the brinchiectasis can be traced back to a couple of very bad bouts of bronchitis I had as a baby and whilst this didn't seem to affect me through my childhood and early adult life it has damaged my lungs and they have continued to deteriorate to the point that I had similar symptoms to that of your husband. All I can say is speak to your consultant. I nebulise and am on azithromycin (ahich is a low level antibiotic which keeps infection at bay). I hate tempting fate but I do feel things have improved massively since I started taking this but i do also know its not suitable for everyone.
You can't get rid of it, it is i believe bactierial and sits in the areas of the lungs which are damaged. I went to a respiratory physio and he changed the way I breathe. I now use more of my lungs which means the infection is less likely to 'pool' in the damaged areas. It may be that having COPD and bronchiectasis means things are more difficult and different with your husband. But it does sound like you need to seek more medical help for answers to some of your questions.
Sorry I can't be more helpful but it is, as you know yourself manageable.
Like Marie I suffered from sarcoidosis, then developed P fibrosis and about 7 years ago was diagnosed with Bronchiectasis. I am at the other end of the spectrum from your hubby, I spend most of my day clearing my chest, it's exhausting.
There is another site, Bronchiectasis R Us, they have lots of great tips for mucus clearance etc. Does you hubby get Carbocistein, it is good for thinning the mucus, thus making it easier to get rid of.
Many of us are like Marie and take Azithromycin and nebulise antibiotics. Hope you get some help
Thank you so much, he does take Carbocistein but it does not work. Are you saying that when he gets a chest infection the GP can prescribe a antibiotics to use in his nebuliser instead of taking them in tablet form.
There are many causes of bronchiectasis. Some are genetic eg. cystic fibrosis and pcd but it can also be the result of damage from other diseases. I had double pneumonia and whooping cough aged five months old and this left me with damaged lungs - bronchiectasis. Hope this link helps.
Thank you, my husband had whooping cough also when he was a baby. I will check this link out now.
in reply to
reading the previous responses, it seems to me [I have bronchiectasis and aspergillosis] your husband needs access to secondary care consultants and clinical nurse specialists. In my experience GPs are too generalist to be able to help patients effectively manage their long term conditions. A chest consultant is best placed to decide whether the use of antibiotics as prophylactics is appriopriat or not in the case of your husband.
and no it cannot be cured as the damage is done, but we can do all we can to prevent further damage.
XXX
Hi
For many people with bronchiectasis there is no obvious cause - as some of you have said sometimes it can be traced to a possible cause.
The big issue is the over produciton of mucous which we all know is an excellent environment for bacteria to grow - sorry to state the obvious. Some of the bacteria are easier to treat then others - the pseudomonas bacteria is particularly difficult. Regular sputum checks are usually advised to check which bacteria is there and therefore which is the appropriate antbiotic to use.
Check the info her out - blf.org.uk/Conditions/Detai... - and if you want to talk through any issues call the Helpline - 03000 030 555.
Mark
in reply to
Thank you for your comments, they are appreciated.
Hi Sweetthing, I have had bronchiectasis for 20 years, mine started with chest infections after a bout of flu, it has progressively got worse over 20 years, i was put on oxygen 24/7 6 years ago, Clearing the mucus is so important because thats what causes the infections. You should be under a hospital consultant who should give you access to physios who can show you easier ways to cough up the horrible stuff, i would reccommend you asked to be referred to the royal brompton in london if you are not satisfied with the treatment you are getting. Mucodyne syrup i find helps more than tablet form for help in coughing up. Also it is very important to get antibiotics at the first sign of an infection has the infections can cause more damage. Once you recognise the syptoms of an infection you should really have antibiotics at home so you can start treatment straight away. This illness need not leave you housebound, I have mine under control but i do get bad episodes still, inbetween time i still go on holiday abroad(yes it is possible being on oxygen). It is also vital that you do not stop exercising as this helps keep your lungs strong. It is hard when you are not well, but it is a must, if you are at a particular low point ask about pulmonary rehabilitation at your local hospital, this is exercise classes to help you become stronger and also give you good information. Good luck with everything, sorry its an essay but i wanted you to know it need not hamper your lives.
Thank you so much, we didn't know you could get the Mucodyne syrup, we will have a word with the doctor about it.
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