I took seretide 500 for 8 years now, only to be told I should come off it, as this particular inhaler is predominantly for ASTHMA which I do not suffer from. Also, my spirometry was normal - so I do not have COPD which was the original diagnosis 8 years ago!!!!!!!
It is now thought I have bronchiectasis - as sticky mucous in throat ongoing, other than when I am asleep. I understand there is no cure for bronchiectasis, which I personally think I do have, as this "productive cough" has persisted and got worse ever since I first noticed coughing a lot of mucous over many years, esp in 2010 when we had the first sub-zero winter.... I did have a CT scan 5 years ago, and the consultant told me I had VERY MINOR BRONCHIECTASIS - and told me not to worry?!
As the amount of mucous I coughed each day has increased over the last few years and the consultant departed for another job, I have "begged" the new consultant to re-scan me - and that was 4 years ago. I am in my early 70s so these years are precious, but the new consultant dithered, until I went into the hospital with a letter and gave it to her in between patients, telling her (in the letter) that the phlegm has increased to 100ml daily, that I rarely go out because of the adverse comments my coughing attract and I need to have another CT scan or some sort of investigation, as I cannot continue like this with no quality of life. She eventually referred me for a scan, since which the CT staff have twice cancelled and deferred for a future date because "their CT scanner was broken"! (This is a London Teaching Hospital!)
In the meantime I have tried cutting out dairy produce but no help with this. I have had 2 endoscopies - one yielded the opinion that the excessive mucous comes from LPR (silent reflux), and the other endoscopy that it comes from the secretions in my lungs. I am not taking any meds now for reflux or "chronic cough" which is what they are now calling it - and am awaiting a fresh aptmt with the CT scan pple.
Has anybody any tips to reduce this degree of productive cough?
Hello Marguerite.
The symptoms that you describe are very indicative of an untreated exacerbation ( infection) of bronchiectasis.
You need a bronchiectasis specialist as a matter of urgency because the treatment that you are getting at the moment and have been having since the ct scan showed bronch is completely unsatisfactory.
As a ct scan showed bronchiectasis it is far more important that you get under the care of a bronch expert than that you have another ct scan. Although a bronch specialist may order one anyway.
I don’t know what your GP has been doing whilst all of this mismanagement of your health has been going on but it is time to get them involved in your interests. Whether or not they are inclined to do so.
You need the current exacerbation treated with antibiotics, which your GP could begin until you get a specialist. He/she can send of a sputum sample and depending on which bacteria is causing the problem, give you the right antibiotic in a high enough dose for at least two weeks.
Look for a bronchiectasis specialist in your area ( usually at big teaching hospitals- look on the internet) and take the name to your GP and get them to refer you. Don’t take no for an answer. Most general respiratory consultants know very little about bronchiectasis and tend to brush it away, which seems to be the case with you now.
You will need to be taught what bronchiectasis is and why you have the symptoms that you do. Most importantly you will have to learn how to clear the mucus from your lungs every day and your GP will need to be advised on which antibiotic to give you as an emergency pack to keep at home for future exacerbations. A good bronchiectasis specialist will write to you and to your GP with this advice and will have a physiotherapist in their clinic to help you with clearance tecniques.
I cannot stress enough the importance of you taking control of this condition. Emptying the lungs thoroughly every day prevents the bacteria from multiplying and the ensuing exacerbation from causing even more damage to the lungs, as does recognising when an exacerbation is starting up and so beginning the antibiotics.
I know I sound like a cracked record but there is no getting away from the fact that we have to be our own advocates and vociferous in obtaining the care we need.
Now that I have lectured you I will tell you the cheery side. Once you have the right consultant, programme of treatment and self management you can lead a very full life with bronchiectasis.
Left to itself it will only result in a downwards spural of infection and increased mucus production.
Good luck. I hope that has helped a bit.
Hi littlepom,
Crumbs - your advice has helped ENORMOUSLY!!! Thanks a stack! It is good to know that with breathing exercises etc. one can control this horrible condition - and obviously with a consultant who specialises in bronchiectasis. It was my intention to check out somebody at UCHL who does specialise in bronch, and I was just about to ring his sec to find out what his charges are!
Thnx so much for taking the time and trouble to write - you are much appreciated, and what you say has helped enormously! I do feel a lot more positive about all this now, and will continue with the research for a top man, even if I need to pay for the first couple of aptmts..
All best,
Margueritex
Just a bit more advice. Most good bronch specialists work in the NHS. Don’t waste your money going private unless it’s a preliminary appointment with one who also works in the NHS and as a way of getting into their NHS clinic. In the case of bronch the NHS has access to all of the tests, physiotherapy and the medications that would cost so much privately. The downside is the waiting. I also cultivated a good relationship with my NHS consultant’s secretary and when I go to clinic I see the boss, not the registrar. They are very good about that. In fact, I had a letter from my hospital on fri cancelling my sept appt and moving it to November! I called my con’s secretary who re-instated the original appointment! I love her!
Wow! Good thinking there! Med-secs can be wonderful!!
During my research, it seems the private respiratory docs add on bronchiectasis to draw in private patients - have just spoken to one of the secs, who did not know what I meant by bronchiectasis (?) enquiring "do you mean bronchitis"??? \ The Resp Med cons who referred me for the CT, said that if it is positive for bronch, she would transfer me to somebody in the Clinic who does in fact specialise in bronch. That was the first time (this year) that I knew that some RespMed Physicians specialise in bronch. But as you say, the NHS takes forever.. I hope he will not take too long, as I have already been diagnosed with "mild bronch" 5 years ago - and not again, despite my asking, and then recently insisting on this. (I have seen a gynae 10 years ago, and after a couple of apts asked him to switch me to his nhs clinic, which he duly did!)..\ Trust you are enjoying the sunshine in your part of the world... Have a lovely day!
You are right about the private guys luring bronchs in and usually they are only general resp cons pretending to know about bronch. I hope that you get to the right person soon and then find your way to a good bronch clinic with the facilities I mentioned earlier. I think that you are more positive than you were this morning and can see a way forward. I feel sure that as you get to grips with it you will be ace at managing bronch - and its medics.
Many thanks littlepom - you have been a star!
I have bronchiectasis and Abpa and see a bronchiectasis specialist at the Brompton in London. Have a look at the respiratory consultants on their website. They list their specialisms. Good luck!
Thanks very much Jacmidlands. Are you permitted to give any names on this site? You could PM me at willowmore@aol.com if you agree. M x
I’ve sent you a message on ‘chat’ on this forum.