It is five years since consultant picked me from the bulging ranks of COPD sufferers and pinned the bronchi badge on my chest.I must say immediately that we are all different in our response to varying conditions but I have noticed a common theme among the bronchi folk I meet regularly and that is the impact of stress,depression and in some cases despondency.
For example I had high stress levels after a tough week and the signs of an exacerbation became visible.On Tuesday I was due a recognised increase in stress that I knew I could not avoid. With nothing to lose took a dose of Rescue Remedy and attempted to de-stress using techniques I used in Tai Chi.
My peak flow lifted well above my normal levels and the apparent onset of brochiectasis disappeared.
Has anyone had experiences that suggest stress can be a component in exacerbations?I see no research in this aspect of our condition.
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locheil
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Hi locheil, after a lifetime of bronch - yes definitely. The major crises in my life have been the triggers for exacerbations bad enough to require IV and this month, after twelve months antibiotic free the news that my grandaughter was suddenly diagnosed with type one diabetes resulted in an exacerbation the next day. Recognising the rise in stress levels and adding means to combat it into your daily routine is brilliant.
For years i argued with my consultants ( forget GPs they aren’t interested in this) that stress brought on exacerbations, as I did that we feel pain in our lungs and get depressed. Now they acknowledge that they do happen. Well mine does, I can’t speak for others. They don’t have a formalised suggestion of what to do because there hasn’t been enough research but at least they don’t mock any more.
I suppose what really amazes me that would be clinicians with a job in respitory diseases in their sights haven't picked the stress issue up as the basis of a PhD!
I feel brochi folk like you and I are taking self management to a whole new level.Do you ever feel you are leading the conversation with your Consultant?
I recently had a full lung assessment that took two hours and involved 3 different spirometer type devices.I now have some idea what water boarding must feel like.Surely this antediluvian method of assessment (torture) could do with an upgrade!
Very sorry to see your Granddaughter is having problems let us hope she benefits from a whole new range of treatments for diabetes that seem to be in the offing.
The care for juvenile diabetes is amazing and a true eye opener for those of us who have had a lifetime of the patchy and neglectful treatment that lung patients are subjected to. Luckily for me my consultant was trained by my previous consultant who was the first to research into bronch properly and taught the US that bronch does exist! I have known her since she was a junior doctor and my main relationship is with her and her secretary. Ijust use my GP as a conduit to get my oral abs and heart drugs. I hear such horror stories on here and it infuriates me. Misdiagnosis as something else for years, refusal by GPs to refer to a bronch specialist, bronch treated as COPD, no follow up care, physio or advice on the crucial daily management.
All of my life I have had to nag and push to get what I want and in spite of the efforts of a lovely physio in Birmingham I have been unable to get pulmonary rehab or cardiac rehab in Warwickshire. Much of the pulmonary rehab advice I don’t need because It was drummed into me as a child but it would be nice to exercise with others who have the same problems. As my my heart, no rehab, no advice, I just take the pills and ignore the fact that I have heart failure!
I feel the NHS is doing the very best it can with inadequate funding but it does bother me that we are spending so much effort breaking new ground and not enough dealing with the diseases that already exist.How long have we known about bronchiectasis? 200 years plus,how many GP's recognise it maybe less than 5%.
I was quite troubled when I saw a W.H.O quality analysis recently that put Portugal twelfth in the international health care rankings and Great Britain twenty second. Something is going down the toilet somewhere.
Absolutely. Bronchiectasis was traditionally known to be a problem of old age, brought on by a lifetime of chest infections before abs became available. Most children who were as ill as me died as did those with cf. Consequently most chest doctors post war had virtuallY no training in it and sadly, in spite of a drive in the 1980s, most GPs have had the emphasis of their training put on COPD. Some with low grade lung damage spent their lives being ‘chesty’ or ‘asthmatic’ until they were finally diagnosed in later life. However, a few of the sick kids like me just made it into the era of abs or were lucky enough to find a crazy, brilliant doc who saved my life in 1956 and taught me and my medics how to control it.
I did not meet another bronch until I was 32 in 1982. The one bright spark today is that more and more are being diagnosed, partly because of better training of doctors ( although I weep when I act as a patient for docs exams at all levels and only about 10% recognise it) and also because patients themselves are informing themselves, gaining advice from forums such as this and being pro active in the search for proper diagnosis and care.
I feel that until quite recently when more and more proactive specialists in bronchiectasis are working hard to promote research and good working practice within Bronchiectasis Services, that the doctors, although not respiratory specialists in those days, were much more switced on to the possibility of BE.
Maybe I was lucky with regard to consultant. My first consultant who diagnosed me as a baby following double pneuminia and whooping cough with BE was the first paediatrician within a hospital within my city under the NHS in 1948.
My treatment consisted of Penicillin injections and physo and more and more physio.
I met quite a few kids with BE and suspect some of them had cystic fibrosis. One in particular was in hospital most of the time I was.
It is amazing that until quite recently there has been zero research specifically for BE. Hopefully that will change for the next generation, if not before.
When I moved back up t'north I asked for GP with a special interest in lungs and he had worked in respiratory and so was up to speed.
Know what you mean about the sharp suited old guy with a posse of young students with their eyes defo on you. Here they come. Bronchi freak show.
There is a brilliant piece of work by Dr. Littlewood who was a specialist in paediatric cf centre, detailing cf through the decades.
It ticks me off when I hear of patients being short changed by their GPs where it takes years to get a diagnosis. I know it makes you angry too.
I have come to know the GPs within my own practice who don't 'get it'.
One thing I do know lp we must have been tough little so and sos to survive, albeit with badly damaged lungs.
My consultant in Birmingham was the first to carry out research studies into bronch. He had a whole department dedicated to it right through the eighties and nineties and a ward at the General Hospital and then the QE. We were lucky because we had a dedicated clinic and our drugs were financed by drug companies. I took part in several of the studies.He taught the US that bronchiectasis is a condition in itself and not just ‘cystic lungs’ He banged on about neutraphils for years and it is only now that interest is being shown in them. It is through him that places like The Brompton learned about bronchiectasis. In the late 90s/ early 2000 government policy came down heavily on the side of COPD. A political decision based on A study in the early 70s which showed thousands of people with emphesyma and chronic bronchitis but very few with bronch and other conditions. In numbers lie votes. the drug company money for bronch research dried up. That doctor is a hidden hero (I can give you his name pm) but it was his assistant, a lab technitian who had done her PhD in bronch who went on to be chief advisor to the government and ended up with an OBE ( she may be a dame now for all I know) After being with us for over 15 years and promising that she would push our case she dropped us like a stone and concentrated on a programme for COPD to further her career.
My consultant has now officially retired from clinical practice but ‘lurks’ about the QE a lot. My consultant now was trained by him and it shows.
There does now seem to be light at the end of the tunnel with various research projects beginning to take place again. We can only hope.
When you and I were children doctors knew what bronchiectasis was because it was an ‘old fashioned’ condition. diagnosis took place frequently, especially on children who were very ill as we were. Because it was wrongly thought of as a Victorian disease, caused by poverty and polluted air, there was a concensus that it would simply die out. So following generations of doctors were not trained to recognise it, leading to the situation which we are hopefully slowly climbing out of as the medical fraternity realise that it still exists.onwards and upwards!
It is brilliant you had such a forward thinking and proactive consultant. 80s/90s is still relatively recent, when you think I would have had BE for 40 years by that time. Just shows how neglected it was, even though it was quite prolific due to poverty.
I remember you telling me about the tech who dropped bronchs like a hot brick in favour of the governments concentration on copd (shame on her).
I agree there is light for those coming after us or maybe even in out rime with the renewed interest in BE worldwide.
As you say hun onwrds and upwards.
I reckon we were both lucky (if that's the rigt word) having good docs at the right time.
Funnily enough I went to work at the Maternity Hospital in the early 70s and the paedatrician who looked after me up to 15 did the prem round. I missed him by about a year as he had just retired. How lovely that would have been to see the guy and tell him thank you - you got me here.
I was born in 1950 and diagnosed in 1953 so not far behind you I guess. People might think that it is strange to say that we were lucky but we were weren’t we and we are a couple of tough old birds. Xx
Your history of our version of respiratory diseases seems to be encyclopedic brochiectasis.. I have been very fortunate in both my GP,who is young a very resourceful and my Consultant who recently acquired his Professorship in part due to his research into this disease.That said it has become that obvious the research resources have been severely constrained. On the bright side there is a European initiative and a database containing details of brochiectasis research results has been established.I don't know in which country but I was a guinea pig using a replacement to a spirometer where the detailed results were fed in to the central memory of the system.
It is so good to hear that we may slowly be turning the corner and that resources, knowledge and hopefully treatment of our condition seems to be getting more attention. I am very cheered that so many more patients are becoming knowlegable about it also. This has happened particularly since I joined the forum in 2013 under a different name
Ha, now, best you ask your consultant to explain properly. As I understand it- they are organisms which go to the lungs when an infection is in progress. They fight the infection but in the process they also destroy lung tissue and increase inflammation. This leads to a cycle of iinfection and inflammation which further destroys the lungs. Various treatments, primarily antibiotics, are used to try to break this cycle. A medical person will probably mock that description but it’s the best I can do. At the QE in Bham they are doing a very exciting trial using statins to target neutraphils which respond to pseudomonas. They are having really good and surprising results. And statins cost pennies!
If this study is succesful it throws open the possibility of statind being used against other organisms. Don’t ask me how the statins work- I don’t know!
That’s really interesting. Thank you.I have been told to consider taking statins anyway because of slightly high cholesterol but declined because I take Azythromycin three times a week for my Bronchiectasis plus meds for my thyroid and don’t want to take extra meds. Is it all statins or specific ones that are used in the trial?
I’m not sure. I heard it on the radio and listened because I have known the doctor in charge of it for many years. I don’t take statins because I have low cholesteroland had to come off azth because it stopped working and now I take digoxyn which reacts with it. All very complicated but interesting
When I first started using it yes as I had been plagued by anaerobic infections. It isn’ effective against pseudomonas though, which is what I am colonised with. For the last two years of the five that I was on it I don’t think that it helped as I was having to take cipro from time to time. I also suspect that it was responsible for my AF starting but that is not proved
Please forgive my ignorance! I don’t know what anaerobic infections or pseudomonas are! I am colonised by haemophilus apparently. That have warned me about possible AF but wouldn’t that revert to sinus if you stopped taking Azythromycin? I am anxious to avoid AF ( my husband has it).
No, I’m afraid that once it’s AF it stays like that unless succesfully shocked back by a heart specialist. Haemophilus is the bug that most bronchs start off with. Usually treated by amoxyl to begin with. Azith is supposed to be very effective against this I believe. I don’t have that any more as pseudo got in and frightened it away. Long term bronchs and cf people tend to get colonised with this other bug. The numbers can be kept down by nebulising certain abs, taking others orally and when the bug is having a real party, IV. I have lived with it since 1986. I just watch and make sure that I treat it if it starts getting too active.
I have had bronchitis all My life. I recently read a newspaper article about teething powders containing murcury that were given out in the early 40's. My mother told me it caused Pinks Disease. Mercury apparently caused lung conditions. I was born in 1943. Wondered if any one out could have taken these powders.
Now that’s funny. I read about those tooth powders. Even stranger, the first diptheria vaccine was floated in mercury. This caused pinks disease and pneumonias in many children apparantly only it wasn’t documented. They quickly changed the formula. I had the vaccination in its first year. The year that I began having unexplained pneumonias which resulted in bronchiectasis. My sister had the vaccination 3 years later and no chest problems. I read a letter to a newspaper from a woman who said that she believed that her lungs had been damaged in the early 1950s by the diptheria vaccination. They don’t know why I have bronch. Next visit to my consultant I said ‘you will probably laugh at this’. I told her about the vaccination.
Her response? ‘i’m not laughing, governments have known about this from the time it happened but covered it up hoping and presuming that all of its victims would die!’
I may have suggested this to you before Warwick hospital runs a rehab scheme at the hospital and also at several other places. I attend a FAB course at my local Hospice this was recommended by my Respiratory Nurse. She contacted a Marie Curie nurse who came out to my home to asses me. I also have Bronchiectasis together with Emphasemia. The FAB course is a nine week programme that deals with Fatigue Anxiety and Breathlessness which I am told is part of our illness and should be treated as well. As you have said stress often can bring on a acerbation which given the correct advise can be avoided.
Thank you clematis. I have even asked for the PR referral from my Warks GP. For some reason they don’t want me. Perhaps my reputation has gone before me. I am going on a long cruise after Christmas so will try to take my own advice and destress. When I get back I will try another way to get on to PR
I attend a course in Musselburgh every Monday.It is titled ROLF Rest of your Life a bit prosaic perhaps but it directly reflecst the 10 week course I attended at a local Hospital that had 3 physiotherapists in attendance and resulted from a referral by my Consultant.The bit that is missing for me is the detail on the daily efforts I should undertake to improve my lung capacity,breathing exercises and so forth.In our area physiotherapists are like hens teeth so I will have to lean on my Consultant in January when we next meet to fill in the gaps.
Hi locheil What I have been learning is little and often that applies to exercise, food, rest, housework, walking. My problem is on a good day I just keep going doing far to much and then needing the next couple of days to get over the previous day. Its all about discipline and learning to slow down. Exercise does not need to be strenuous just sitting down in your armchair and tapping your feet, raising arms one at a time above your head, reaching your arms out sideways one at a time all are good for you.
I just noticed that you mention you have heart failure .. I’ve just been told the same and like you I am just taking the pills as I’m told.. do you know if bronch and heart failure are linked? I’ve been told the damage to my lungs and heart have been caused by previous chemo I’ve had?
How right you are.I spend a lot of effort trying to maximise my immune system and it certainly helps but stress can be a cruel master and in my case any techniques to reduce the effects are welcome.
I don't have bronchi only copd and asthma but I have found that stress is a huge trigger for my asthma. My last job was stressful and a rise in my stress levels matched with an equal rise in coughing and wheezing. I think the effects of stress are greatly underestimated in chronic disease.
Yes as I receive more responses I am becoming increasingly convinced that stress is a primary issue particularly in lung disease.My acupuncturist who was a great student of many subjects including Chinese medicine pointed out regularly that the lung is" the only organ open to Heaven".I think it would pay everyone,particularly the clinicians to bear that in mind and act accordingly.
I totally agree with you locheil stress plays a huge part in bronchiectasis and indeed any other chronic illness. When you think about it bronchs have so much to do to self manage, many of us have other health issues, less energy and when life throws us a curved ball it plays havoc with our already depleted energy.
During my lifetime I have had good, bad and indifferant consultants. I am lucky now as I have two very proactive consultants within the Bronchiectasis Service and it works well, although I here from many on here and elsewhere who are 'short changed' and that ticks me off so much.
Glad you have found ways of coping with these probems.
I think the thing that alarms me is the lack of information on the NHS web site regarding exercise programmes specifically related to our lung conditions. I did query this at a recent bronchi meeting and it was suggested that if the NHS did recommend techniques and anyone had a problem following the recommendation the NHS might be sued!
Interesting- if you go to the US sites there is enough information regarding exercise for broch/COPD exercise programmes that would keep you going for weeks just reading about them!!!
Hi Locheil, very interesting post and like the others who replied, I think it's a very valid and very overlooked point. I'm only recently becoming aware of stress as a contributory factor in exacerbations as well as a result. It really is a chicken and egg situation though because a chronic illness that needs constant management and causes so much disruption is a massive cause of ongoing stress. About this time last year, I did an online course of Mindfulness and found practising some of the techniques recommended, very successful. But like many things it sort of fizzled out. The routines became boring and repetitive and I just couldn't muster up the feel good factor that it initially created. I do try some mishmash of attempting to relax and focus the mind at night and it helps to an extent ......
I do agree that routines can and often are boring and unfortunately repetitive.I have had to discipline myself and focus on the outcomes.That sounds terribly trite but I have set myself a goal.My Gran was 94 when she passed away and she had bronchiectasis for 20 years at least prior to her death.My Great Aunt Ruth died in Oz 3 years ago aged 103.She was as fit as a flea.I would like to fall somewhere between the two.I have 7 years to go to catch Gran!!
What I did on the occasion to which i referred.I was very close to becoming despondent verging on depression.there was no way I could face the afternoon challenges without taking action.I knew from a previous experience that I am particularly sensitive to Bach's Resue Remedy so I cut the dosage from four drops to 2. I have a CD of very quiet Chinese music that I use when I relax and clear my mind prior to Tai Chi exercises.To do this you need to lie comfortably on the floor breathe using your diaphragm (as babies do).To relax properly your spine would be level with the surface your a lying on.!0 minutes is sufficient but it is very important to think of something really peaceful or nothing at all.You won't get it right first time but try persisting for a bit when you get stressed.
We are all different and this is not a universal approach.To give you my background and to endorse the fact that I am not a nutter (at least I don't think so )I was a navigator in the Navy for 10 years and farmed for many years in the Scottish Border Country until my retirement.
lockeil We also do Tai Chi exercises at our FAB courses but do it sitting in chairs with background music played to help to relax. Sounds to me that you already know how to relax and de stress. x
I was diagnosed with Bronchiectasis some years ago. I walk up to ten miles twice a week with the Ramblers and have just taken up jogging. I don't suffer with tiredness or depression. Is it inevitable that I will eventually suffer from it?
I am no expert but what you are doing is strengthening your immune system and that will hold back the onset of exacerbations.the level of research into bronch has increased exponentially in the last few years so between your commitment and the effort by the researchers I think your future and mine are improving.
Oh yes I think we’re getting there at last. I’ve had bronch for roughly 70 years and seen big changes recently. Yes we’re still on the coat tails of COPD but scans are beginning to show a significant proportion of them have bronch too. We wouldn’t wish it on them but still .......I now have a consultant who specialises in bronch. and I’ve been helping to design a bronch. self-management plan for Notts. so soon we may all get them like the COPD patients. BLF have appointed a specialist in bronch. as one of their professors and I recently heard him speak. He’s doing some great research and it was brilliant to see facts and figures about us. We’re a significant minority now, not just Cinderellas.
I have read all of these comments with interest. I suffer from bronch. and have done for about 10-12 years. Or rather it was diagnosed then. I spent 8 years with chest infections and coughs. At one point a nurse said to me, all of these ABs are not working so you cant be taking them! Either that or your cough is just a habit! When you are walking you need to carry a brown paper bag and breathe into it to calm yourself down. Needless to say, one CT scan later and a wonderful specialist, he confirmed bronch. Unfortunately he died and I was then discharged and told you only have mild bronch and asthma so you don't need to keep coming to the hospital.
I didn't mind. I try not to let it beat me and walk my 5 Labradors every night and show them on weekends. But last year I had a lot of stress and had 3 infections. The bug was a different strain (don't know what) so took some shifting. Stress is most def. a trigger. I have no doubt about that.
I don't know how many people in the UK are bronch sufferers? But it still feels like a condition that's not really taken seriously? And nobody tells you about the tiredness. Nobody makes allowances for that.
Just a question? How many people with bronch have a blue badge? Its a tricky one because when I am well I can walk as long as its on the level. But with an infection, I can hardly manage to do the weekly shop and get it in the car.
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