I'm sure you've seen our information leaflets and booklets, they're available to download, print or order from our website. This information needs to be kept up to date and relevant so occasionally we have to review it.
Here's a link to the current bronchiectasis information, what do you like about it? What could be improved? shop.blf.org.uk/collections/lung-health-information/products/bronchietasis
What we're interested in knowing is how you manage your bronchiectasis. Have a think about self management and issues such as:
How and what you do to self manage? Were you taught how to self manage or did you work it out for yourself/with help from booklets or other people with bronchiectasis? What do you wish you'd known sooner? What has had the biggest impact on your bronchiectasis? Do you have any tips for other people with bronchiectasis?
This is not an exhaustive list of issues to think about, just something to get the ball rolling.
I'd really appreciate your input with this, thanks so much.
Best wishes
Biddy.
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Biddy_ALUK
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Hi Biddy,
I will have a good look at your link later today and come back to you. I am busy doing my volunteering at Shakespeare's Schoolroom for most of the day. I guess that gives you an idea that with very extensive bronchiectasis, my life includes a lot of self management.
I would be interested. I take all my medication, but because I am getting older, I feel that the bronchiectasis will worsen despite my efforts. Certainly my mobility is not as good as it was.
Being of a certain age, I find it hard to do the short of exercise that i need to get me back to my youthful mobility. I had PR around 2010 which was a success, then again this summer. The venue was different, quite cramped and also there was a heatwave going on for most of it. It wasn't a pleasant experience. Shame.
it is a shame, you're right. Have you had a chat with one of the respiratory nurses on the helpline? They can discuss exercise that would be suitable for your need and ability. Give them a call on 03000 030 555 and they can arrange for a nurse to have a chat with you.
Biddy.
Biddy_ALUKPartnerBritish Lung Foundation• in reply to
Thanks for that, I look forward to hearing more from you later. Enjoy your day,
Hi Biddy, I think the leaflet is very concise and easy to understand. It covers the symptoms and possible causes adequately but in terms of living with Bronchiectasis, especially when it becomes severe and extensive, that's a whole other ball game.
Maybe the leaflet would benefit from more detailed information about treatment when infections are recurring frequently, as this is when Bronch starts getting difficult to cope with. This could look at the different types of antibiotic treatments, such as : long term prophylactic antibiotic treatment with Azithromycin, which is very commonly prescribed for Bronch ; rotating antibiotics, which alternates the type of antibiotic prescribed for exacerbations, to avoid the bugs you have, becoming resistant to certain types of abx ; IV antibiotics which can be administered in hospital or at home, for severe infections and lastly, nebulised antibiotics. There are so many questions on this forum, from people who've been prescribed nebulised antibiotics such as Colomycin and they have no clue about what it is or even what it's for. Leading on from this, a little information about the common and less common bugs found in sputum samples and how vitally important it is to have your sputum tested and get the appropriate antibiotic.
There are some other things which could be included but I think the factors I've mentioned above, are the most important. I hope this helps.
And of course, Like most bronchs, apart from prescriptions and hospital stays, I am 100% in charge of managing my illness.
Hi SS, I think Biddy also wants to know how people self-manage their Bronch and I can't think of anybody better qualified to do that then you. Especially on your managing your own IVs and how you brought that about. Hope you had a good day with Shakespeare
Self-managing Bronc is for me something that can quickly get out of hand and most of how I manage it I have taught myself through the posts on this site and bits and pieces I have picked up. So how other people work their medication into their daily life would be of interest, it might help those of us who are still trying to organise ourselves. I do realise the brochure you produce cannot cover all the twists and turns Bronc takes I.e. other lung disease and associated side effects from the medication. But perhaps as a side option. I don't know if this is the sort of thing you were interested in.
Thank you Sue, any comments or suggestions are greatly received. Especially ones about self management and where you got your support and information from.
Thank you so much for asking for the opinions of people with ncfbe - much appreciated.
I absolutely echo Billiejean's excellent post.
You may or may not know I have a small role within the ERS on the Education Platform and we have been working on this sort of thing. One of the questions I raised on BLF and BRUS was what information people with ncfbe found most helpful, the question being asked by Dr. James Chalmers. The majority of the votes were for the Scottish CHSS Living With Bronchiectasis, which is very comprehensive, without being too scientific or scary.
I think it is difficult as people with bronchiectasis cover a whole range of the community from folks wanting just enough information right through to those wanting to see every scienfific paper there is.
I agree with Billiejean the BLF 'booklet' covers the basics and, refreshingly these days, is in plain English.
I think clarification should be made when you refer to Doctor. It should perhaps be clear that doctor refers to a Respiratory Consultant with a special interest in cf/bronchiectasis, or at the very least a Respiratory Consultant. Although people may have an idea of the aeteology, it is the job of the consultant to delve deeper and request further tests. Doctor should not be confused with GP. The lack of knowledge re ncfbe within primary care is glaringly obvious to many of us. It might be an idea too to put on a link to the present BTS guidelines. Sadly quite a lot of GPs are not up to speed with regard to the present guidelines.
It is also down to the Respiratory Consultant to refer to respiratory physiotherapy and a plan of care which is understood by the patient and the GP. It is clear by bayleyrays excellent contribution that this is not always the case and we hear from many people with ncfbe who are being 'short changed'.
I personally don't know what it's like to be newly diagnosed with ncfbe as I was a baby when first dx following double pneumonia and whooping cough and had a double whammy on catching measles at 19. So I don't really know any different to life with constant phsyio but I was always taught how to do it.
ncfbe has for decades been an orphan disease and we have ridden on the backs of our cf brothers and sisters. At last it is now emerging as an exciting challenge with new interest in research in it's own right, largely down to the ERS. Our self managements is a heavy burden, which because we do it ourselves is largely not recognised by, certainly primary and many in secondary care. I once forgot a needle and syringe to nebulise Tobramycin whilst away and had to end up going to A & E. The 'baby' doc was shocked I had to do it and asked if I had to do it every day. I had to inform him I did it twice a day and before I had come I had nebulised a bronchodilator, followed by hypertonic saline, followed by physio. He was genuinely surprised. Even though we do this ourselves, I still consider the consutants in the bronchiectasis services and I work as a team.
I wish you good luck with your booklet, as I am sure the BLF will be the first port of call for many folks newly diagnosed with ncfbe.
Not sure if this is helpful but hope so.
Please give my regards to Ruth - we met briefly at the Congress.
Have just read the leaflet, which is informative without to much information to bog you down. Agree with most of the comments made. I have been relatively well for the last couple of years and now my symptoms are coming back again. Have seen doctor so will do sputum test when it flares up again to get right antibiotics. I am on a permanent antibiotic which I feel is not working so well now. My doctor has agreed to change my emergency antibiotics, these definitely need to be rotated to stop immunity.
My problem is, when I feel really ill and clogged up, I do all the chest clearance, everything I can do, I might not have a temperature and my oxygen levels are good, but I feel terrible. I feel like a bit of a fraud going to doctors. I am lucky to have a good doctor, but I feel she doesn't understand how awful you can feel.
Oh Shirley I'm sorry to hear you're not on top form. It's good to hear you have a good doctor but as echoed in much of the feedback we have received, the knowledge of our GP's doesn't always stretch to conditions like bronchiectasis.
I mentioned in an earlier post that our nurses are happy to talk, about management and chest clearance, please bear that in mind and don't hesitate to call them (03000 030 555).
Thank you for the leaflet, succinct and clearly written.
What I have understood especially from people on this site is that we are all different and theway we manage our condition varies enormously.
When I was diagnosed about 20 years ago I wish it had been drilled into me more forcefully how important it is to perform your daily lung clearing exercises. Working full time I often felt too tired to do my exercises at the end of the day and even found anarticle on the internet wuestionning the usefulness of doing them, which suited me fine.
What I have realised in my own case is that sputum tests don't offer up any clues to what's happening in my lungs. It was only when I had a bronchial wash that multiple, a word used by my consultant, infections were discovered. At the moment I am being treated for mycobacterium avium, and am on antibiotics for at least a year.
Something else that worried me was that my gp on listening to my lungs with a stethoscope said they were clear but referred me to a consultant because I was coughing up blood regularly. After a ct scan showing cavities mucus plugs and partial collapsed lung and the bronchial wash, it was only then that the real state of my lungs was discovered. The stethoscope was useless as a diagnostic tool.
I was really upset when the consultantdescribed my condition as severe. So upset that I didn't ask what that actually means!
Unlike some fellow brx sufferers I do not take inhalers etc as I have never found them useful. Again we are all different. This year I have been treated for SA, pseudomonas and have a fungal infection which I think they will treat after I have finished the present antibiotics. It sounds as if I'm in a bad way but actually my lung function tests show I have a better gas exchange than most women of my height and age!
Also I actually feel pretty well most of the time and look well so I don't think you can always tell by looking at someone how poorly they are. If you break a leg everyone can see it. If you have lung problems nobody, not even yourself can actually see what's going on.
I do have my morbid moments and read things on the internet about mortality rates etc. I know I shouldn't do it but if you're interested in your condition and want to learn about how to help yourself you sometimes read things you'd rather not.
Finally, the only reason the state of my lungs was discovered is because I listened to my body and knew something wasn't right. Fortunately my gp listened to me and fast tracked referred me to a consultant. It was even mooted at the hospital that as a brx sufferer coughing up blood was normal. Only my gps tenacity and eventually the ct scan got things moving.
You're absolutely right, it's been said before that everyone is different. And that's why asking you all the same question can throw back so many different responses and views.
Your comments are very useful, particularly the point about using the stethoscope as a diagnostic tool.
Thanks again,
Regards,
Biddy
Hi Biddy
Cofdrop has said much of what I could have said. I have never known life without ncfb. I was diagnosed in 1953 following several bouts of pneumonia. At five years old, after brushes with very ineffectual so called physiotherapy I had another pneumonia during which my GP took the radical decision to inject me with penicillin because M&B and oral penicillin were doing nothing. He saved my life. My parents then received a letter from the local hospital saying that I should not be expected to survive another bout of pneumonia. Through a friend they found a Dr Mackenzie in Leicester. He had succeeded in ridding UK of tuberculosis ( how he would be turning in his grave now) and had turned his attention to bronchiectasis. I began attending Groby Rd hospital every month and so it began. He started me on chloramycetin, then tetracyclin taken orally by splitting open the capsules ( yuk). For six years my mother fetched a tank of oxygen each week from the chemist and I inhaled penicillin and alavair twice each day. VERY radical. My GP got into terrible trouble for the cost but stuck out the local committee and continued to prescribe everything. At the same time I was tortured by the Leicester physios who taught me to breathe properly, using three different parts of my lungs, how to cough up, put me in rocking beds and supplied my mother with an impliment left over from the Spanish inquisition- a wooden slatted pyramid over which I was forced to lie twice per day whilst my Mother beat me soundly on the back. I was thrown into swimming pools, marched up cliff paths and forced to learn the flute, which I played until I was 17 and had the courage to tell my Mum that I had had enough.
Well it worked and my lungs opened up from approx 30% use to much more and the pneumonias stopped until 2015. The lower r hand side has always been the useless area but as the rest is in patches all over, I have been able to work with it. Dr Mackenzie told my mother that her refusal to allow a lobectamy had left me with enough lungs to work with and lead a normal life.
Handling the bronch at school was difficult. Teachers did not understand it and from infant days mocked or punished me if i needed to leave the classroom to cough stuff up, often resulting in my sitting desperately trying to hold it in, followed by a mad dash to the loo and sometimes a nasty and embarrassing accident on the way. My lack of sustained energy, especially during sports sessions was treated as laziness.
Apart from my first GP I have encountered mind boggling ignorance from GPs. When I had an exacerbation following the birth of my second child ( having fled the civil war in Lebanon) the GP where I was living accused me of 'thinking too much ' of myself and refused to prescribe antibiotics. My Mother had to virtually carry me to my childhood GP who gave me the drugs.
I really could write the book but will try to truncate things now.
My current GP is very cooperative. His 'respiratory' nurse cannot even say bronchiectasis and simply says that she has no training in it.
I have been with the QE in Bham for 33 years, under two consultants, the second trained by the first. My relationship with physios has been difficult to non existant. Let's just say that the breathing tecniques for loosening secretions now advised are those which I virtually developed myself but when I described it they laughed at me, all through the eighties and most of the nineties. Pulmonary rehab is not availbke to me. I don't need the breathing etc advice but doing the exercise in the company of people who know what it is to struggle would be good.
It seems a constant struggle to obtain the drugs that will help us. As far as money and assistance are concerned, we have definitely been pushed aside by the concentration on COPD.
I keep my neb and inhalers by the bed, together with any drugs which I take morn or night. I now have A F and left ventricle dilated cardiomyopathy, apparantly caused by a virus. I take any other drugs at set times every day.
I live very much to a routine which supports my physical and mental well being. Get up at the same time every day, do my coughing up early afternoon ( and whenever needed) walk the dog, volunteering, book club, contact with friends. My life is a constant battle to keep the boggart within in its place!
My GP decided to attempt to get the QE to link up with my local hospital so that I could have IV athome if I need it. The local hospital were surprisingly very amenable to this. The logistics have yet to be tested because they were very keen to give me a prophylactic 14 days in Aug but I refused as I am in summer well mode.
Most of us with bronch look very well. We also tend to hide the worst of our condition because it is anti social and embarrassing. Therefore people do not realise how we often struggle to lead our daily lives. There is also a dichotomy between the fact that people with lung conditions need to exercise in order to keep their lungs going, expel gunk and prevent infections and the official demands that in order to receive help disabled people should only be able walk 20 mtrs and do precious little in the house. Anyone with these conditions will tell you that short bursts of this exercise completely wipes you out and during exacerbations it is almost impossible to get to the car or have the energy to prepare food.
There is now a belief that we are infectious to others which is creeping into the dialogue and attitudes of some of the public and health professionals, especially nursing staff in hospitals. This is based upon a minute study on Cf bronchs in America where it was suspected that pseudomonas could have passed from one patient to another in a small ward of cf patients. My consultant has told me that cf bronch operates in a different way to non cf. and that there have never been instances of patients passing infection to one another or their families. Let's face it, my children brought me plenty of viruses home but I have never infected them, my partners or my friends. This is a serious cause for education, otherwise we could find ourselves even more pariahs in society than some of us have already been made to feel ourselves to be.
An interesting post SS but on the question of cross contamination, even though I know many consultants feel the same as yours, is not necessaerily fact but is opinion. They generally say there is no evidence of cross contamination between one ncfbe patient to another. As we know there has been very little interest for decades in research into ncfbe, and there is no evidence that cross contamination between people with ncfbe to the contrary either. Some medics in the respiratory world are doing reseaach into this very subject and writing papters. Why would they be doing this if it is cut and dried.
After our recent meeting 2 of us came down with infections and I have heard one of our european members developed a high temperature. I actually don't think it is taken seriously enough.
You were also in a very public situation where germs were circulating, all with conditions which exacerbate under stress. I doubt if you spend much of your time in close contact with another bronchiectatic. Personally it has never happened to me after clinic or on my rare hospitalisations. As I do not wish to catch any bug,be it virus or bacteria from anyone, 'normal' or with lung damage, I never get that close to anyone,anywhere. Travelling on a plane or sitting in the theatre next to a virus spreader usually results in an exacerbation however.
I am more concerned about the respiratory testing equipment and made the tecnitian describe in detail how and when they are de bugged. We do have to be very careful that people with less understanding than us do not bring the impression to the public at large that we can infect them. Unfortunately this is already creeping in and general talk of related research racks it up. According to my consultant no research relating to this in non cf b has proved that it happens.
Do you think that you have given any of the organisms in your lungs to your family etc over your lifetime? I doubt it.
I appreciate what you are saying and totally agree re the equipment.
Believe me were in very close contact in the meetings and at lunch. As far as I am concerned I do believe it could be coincidence with me as I have such frequent infections. I have had hospital acquired infections, as have lots of others I know. I just think more research should go into cross contamination for ncfbe. Most of the people in one open meeting were consultants and allied care workers but most of the ncfbe people sat together. The other meeting was smaller and was about half and half.
No hun I don't believe I have given any organism to friends or family, not bacterial at any rate, but I am not talking about cross contamination between ncfbe and the normally fit and well, but between ourselves. I am certainly not alone with this concern.
cx
Biddy_ALUKPartnerBritish Lung Foundation• in reply to
Good afternoon Stillstanding, and thank you so much for your response.
You certainly have an amazing history and seemingly the determination not to let bronchiectasis stop you doing what you want to do.
I can't add much to the excellent comments above, particularly on the range of medications and the need for self management. I've almost certainly had bronch since the age of three when I had pneumonia but I wasn't formally diagnosed until I was 20. So self management was by default. GPS told me I would grow out of it and just gave me cough syrup. I've learnt over the years (I'm 73 now) with the help of some good GPs and over the last 13 years my BE group. The one thing I would like to add is the need for exercise and a good diet. I was told to rest as a child and school games etc were a nightmare anyway because I couldn't keep up. I often felt poorly anyway as infections lasted a long time without treatment. My diet wasn't bad but it was post war rationing and nursery type food. In many ways I'm better now than I've ever been ( leaving aside pseudomonas colonisation) as a result of better treatment, exercise, diet and perhaps more rest ( no getting up in the night for children!) .
One more thing I'd like to add is the need to be aware of potential links with other diseases, not just rheumatoid arthritis but osteoporosis. GPs don't seem to be aware of this.
Of course you can't put in the details of all our comments in a basic leaflet but perhaps we deserve a bigger booklet as the COPD and IPF people have?
Hi Everyone and thanks to those of you who have responded with feedback.
I'm going to start collating the feedback this week in preparation for a health information review meeting next week, so if anyone has any more comments, please partake!
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