Bronchiectasis

I am female from US, living in damp, rainy SW England (!) and have just been diagnosed with bronchiectasis. I have a lot of education, holistic and some medical, so I always research and don't just believe what doctors tell me (I understand they are seeing me as one person in a spectrum that they see). Like eleena100, I have a lot of mucous secretion for four years now, since severe bronchial pneumonia four years ago. I am heading for top ENT specialists in UK for the very debilitating ongoing CRS (Rhinitis) which is producing a lot of mucous. I got a salt pipe which helps to bring up the mucous (although it's not a very entertaining thing for myself or my family!) but I'm also addressing the gut functions because some articles connect bronch with CRS and IBS. The GAPS diet has been recommended and I am trying it. No sugar, no grains, etc. The book and website have a lot of information. I did a three day broth fast which really cleared me out and I did feel much better. I don't understand how the intestine is linked, but since it's the "second brain" and is affected by stress, and I can feel the link, I know it's a good thing for me to address. I have headaches from the CRS. I have to admit that I find the diagnosis of bronchiectasis quite scary, not only because it's gradual degeneration but because one is so vulnerable to every microbe around in the air and on public doorknobs, shopping carts, etc. I feel that I am becoming phobic but I'm going to take care because getting a bug can take me down very quickly and I don't want to end up in hospital with the superbugs. My husband was in last summer for a heart problem, and had to go in by ambulance three times afterwards just for infections! I am interested in the recommendations to eleena100. I have just got a house in Florida with a pool but now wonder if that is dangerous too. I am looking forward to going there in October and though I fear the airplane bugs (does anyone know of a really effective mask?) I will relax there and do yoga at sunset on the beach.

I was born with the congenital lung disease cystic emphysema and also developed bilateral pneumonia at age 6 months.I have been in and out of hospital all my life and have spent long periods away from my family in hospitals all over the country,sometimes over birthdays and christmases.I had been prone to numerous pneumothoraxses because of my cystic lung disease until I had two major operations at the Brompton hospital in London to remove the outside of my lungs and affix them to my chest walls when I was nineteen.These operations saved my life.In 2007 I developed problems with my heart thought to be caused by piggybacking chest infections and have since had 2 procedures at the Bristol Heart Institute but the problem seems to have returned and I am back on heart meds.2 years ago I was diagnosed with bronchiectasis after a routine scan during a stay at hospital.My health has detiriated somewhat over the last 3 years and this further complication just seems another burden to bear.My little boy of 7 is totally free of any health problems and of that I will always be eternally grateful.

Hi everyone my name is Callum and I've have bronchietasis . I've had this shit disease since I was 18 months old. I am currently 15 and doing well. Jen I know how you feel it does suck having it but you can only fight it. I am able to do several sports and play the full length. But still do get sick at least 3 to 4 times a year which sounds okay. But they have never really fixed my problem. I swear I've been on every medication out and am getting sick of it haha. I also suffer from Asthma and Cystic Fibrosis. Which make it a little more difficult. If anyone knows of other kids, teenagers, or adults with similar situations I'd be more than happy to hear how yous cope with it.

Cheers!

Hi, I have a daughter who is 4 years old and has bronchiectasis in her right middle lobe, she has had it since she was one but was misdiagnosed all these years.

She has had pneumonia twice and for the whole four years of her life I have been told she was suffering from spasmodic croup!!! How wrong the drs & specialists were....she was eventually sent to the royal brompton hospital in London & has received brilliant care.she takes azithromycen every other day & has been doing this for 4 months......she has NEVER been so well since starting this medicine.

I have recently been told after months of different tests that my daughter has to faulty genes for cystic fibrosis, they did extended genetic testing & found this incredibly rare faulty gene, its so rare that its only ever been seen twice before......anyway my daughter is very well looking she can run about for hours & doesnt get out of breath, I was very worried at one stage that her life would be hospitals every week but as I said since taking azithromycen her life has best brilliant, she just like a normal child now

This has been a very enlightening read for me....thank you all so much for shedding light on my condition.

I was diagnosed with brochiectasis 5 yrs ago.....I have had almost constant chest infections since then and am tired of popping pills but like the rest of you i seem to have no choice.....

I am in the process of arranging physiotherapy which i could not really see the point of until reading this discussion board.

My breathing is short and shallow all the time so exercise is really difficult but i do walk everywhere and force myself to do things i would rather not attempt....

I have always tried to avoid doing things that make me cough but now see the relevance and importance of it....

Maybe a fact sheet and a helpline for patients would be a good idea this is nowhere near as scary as i have been lead to believe

Hoping you all get something positive from this discussion too

MANY THANKS TO YOU ALL AND BEST WISHES

Sue

hello i was diagnosed 3 wks ago with bronchiectasis after nearly a year of chest pain, breathing problems and phlegm production.i had to beg my doctor for a referal to a lung specialist. in the last year my life has changed significantly and i hav gone from a very active person to some days not being able to move around much at all, i am suffering with depression because of this and having to have time off work. i am 35 and have 2 children and some days i feel totally useless as i cant do the things with my kids that i want to. i am so glad i found this forum and id love to hear how other people deal with this lung disorder and help other people where i can to cope with the effects.

i have been prescribed tablets to help bring up phlegm called carbocisteine and would be very interested to see if anyone else has had these and if they felt they helped?

thanx rachel x

First, carbocysteibe thibs the mucous so thst you can cough it up easier and it doesn't sit there waiting to grow germs, so yes, it is helpful. Postural drainage is the importsnt therapy and one if te movst important management techniques. You have tne right to a referral for physio fir this condition, but tere are also pdf files searchable on google that you can download. Depending on hw severe ad were in the chest your damaged airways are, your physio may differ, so get help with this. My condition is bilateral and low down, inoperable. It is exacerbated ( or maybe part of and I personally think caused by chronic sinusitis that drains down into the lungs. So I looked up and got a referral to the top rhinitis expert in London. .his first ame is Harsha (K?) and he wanted me to see Dr Valerie Lund, top rhinologist in Europe, editor of Journsl in ths fiekd. They have a Weds AM clinic. You have a right to go anywhere so ask to see them. They suggested in my case several things: nt to stay on anti- biotics but have them at the ready, plus a back up stronger one for more severe infections. I go on and off, because I gt sonethng called " brown tonge ( from being on azithromycin); it is really gross and makes my voice froggy). Then, use Neilmed Sinus Rinse, available in pharmacy at reasonable price. Rinsing with ths simple device ( informative booklet comes with it) has helped clear up a long standing nfection and .i can breathe easily. Less mucoys drips down to lungs because I flush t out the nose. Cough up the phlegm. (also gross but necessary self care) . Exercise. .the mre I move, steadily and carefully the whole body, the better .i feel. PROTECTION FROM BACTERIA AND VIRUSES: Boots now makes an anti- viral foam, kleenex an anti- viral tissue. Get them and use them and teach your family to use them ( they may bring bugs home to you, so educste them as to why it is important not to...for your sake and theirs. Curad now makes a surgical mask ( available in the US for $10 for 10 masks ...but I have not checked in UK). It is specifcally against flu and as small dots of copper and zinc that are said to kill flu germs within five minutes of contact. There are also nasal filters called Nasal Air Guard that I googled and ordered. When I fly or am in crowded trains, esp in winter, I use both and since starting this have not caught anything. You get used to it, and it can help save your life. I also was able to live this winter in Florida, which helped immensely. There I ad the heating and air condition cleaned and a UV filter installed. I swim, and have extra strong chemicals installed,

and never put my head in te water. I drink green tea with echinacea constantly to improve my immune system. Basically , I do everything I csn, including certain situations like being around people I know h ave any respiratory bugs. I ask people to let me know if the hae anything so I can make my own choice about exposure. I use not only the Boots antiviral foam but antibacterial handwipes. My doctor told me to cone in for sputom tests every six months, so they can tell uf you ave one or more of the superbugs like pseudo adenoma (? anyone, please correct me if I am wrong), because if you have it, you need h elp and you don't want to expose sanyone else. Hope this fairly rounded approach helps me..and others. I did learn that ion air filters which claim to clear air are in fact dangerous because they produce too much ozone which damages lungs. I used them for years, esp on planes, but not now! HEPA filters are safe as f ar as I know, and are good. Get a good vacuum and clean regularly. And, , you can purchase from the allergy store online a UV portable light that can kill germs almost immediately. Take to hotels and other places to clean your environment. Welcome oter suggestions ( including a good G P in weymouth Dorset.). Finally, although serious ( members of friend's family and my mother's cousin died from it) there is a lot that csn be done(15%?) and we need to raise awareness as well as get more research done as there are no real treatents, just management techniques. It us better to live somewhere warm and dry...not like England this year!

Hi,

I have bronchiectasis too. I had it since 2004. It was a long and not very pleasant journey but I feel fine now.

I have it under control and I manage it without relying on antibiotics. I tried many things and I can say now that rebuilding our immune system is our major task. There are many ways of how to do it.

I created my website and published there many things which I do. I am still working on it and trying to make it better. You are all welcome to visit it-I am sure that you will find many helpful idears there

www.bronchiectasis.co.nf

Regards,

Tanya

Hello out there

I was recently diagnosed with bronchiectasis a month ago – something I could hardly believe as I was only diagnosed with rheumatoid arthritis seven years ago.

Symptoms started in August 2012 with chronic sinusitis (although I’d had sinus problems for perhaps a year prior to this that I’d largely ignored.) By September the cough had started. By October I started thinking I was getting really unfit as my breathing was getting difficult, particularly up slopes or steps.

By November all symptoms were much more pronounced so I saw one doctor after another at my GP surgery who had no ideas about what was wrong, didn’t know what to do, or seem to take me very seriously. I did get a course of antibiotics for the cough and then another course a few weeks later, but the cough and the sinusitis remained as strong. I then got quite stroppy about getting the surgery to take a proper interest and eventually I was sent for an Xray (the results showed I was fine…..). I then managed to get an appointment with ENT (they said there was nothing wrong with my nose….).

In January 2013 I had my annual arthritis check up. The consultant took one look at me and ordered a CT scan (lo and behold, there was something wrong….). In March I finally saw a respiratory consultant and was formally diagnosed. All of this was organised by my arthritis consultant, not my GP – heaven knows where I’d be at the moment without him!

I have my first respiratory physio session in a couple of days. I do hope they can do something about my breathing let alone the lung congestion – does posteral drainage help with sinusitis? I can’t do anything these days (let alone something strenuous) and it’s very upsetting. I just about manage to get to work and back home. I’ve read other people’s posts about the exercise they do and I wonder why I’m not capable of the same thing.

I returned to my GP a week ago to discuss managing sputum tests and antibiotics – I also had several questions from the respiratory consultant’s letter that I wanted to go through. Well, what a waste of time… he couldn’t answer a single question, wasn’t keen on the antibiotics regime and suggested my only option was to write to the consultant. I feel very let down by my GP and know that they will not be able to help me going forward.

It's been good to put a few thoughts down, but I feel like I can barely keep it together these days.

Rebecca

Jen - thank you for kicking off this discussion although I am sorry you have the condition and hope you will be feeling better soon. I was told yesterday that I may have it and am being referred for a CT scan - like many people who have replied, I have been ill with recurring chest infections for many years but this year, I became ill in December and have had at least one episode of infection each month since then which has left me drained and feeling no better despite various antibiotics which work for a week or so then back to square one! However, if it is this condition, and I strongly suspect it is I have been very encouraged to learn of all the treatments and ways we can help ourselves to get better and keep well. I would challenge the advice you have been given about giving up work - one of the best medicines for any illness, unless you are completely incapacitated, is keeping busy. I have had to have the odd day off when the infections have been particularly bad but I think I would go mad if I left work! Good luck to everyone, keep smiling, keep positive.

Hello,

I was also diagnosed with bronchiectasis when I was just under 20 and am now nearly 56 and still fighting back.

I was initially told I only had 2-3 years to live and that I should stop working and rest.

I did nothing of the sort and, although I've had some rough times with frequent infections, pneumonia, etc and often feeling very run down and exhausted, I have been able to lead a basically normal life.

I have made a point of staying very active and though I cannot run I do lots of walking, use a cross-trainer, etc. I also stay away from people with colds and coughs, any sort of smoke or dust or chemicals (I choose household and cosmetics products with great care to make sure they do not contain anything likely to be an irritant), car fumes, pets, and so on.

Undoubtedly I have also been very lucky that my health has not deteriorated too much.

To anyone recently diagnosed or struggling I would say: Please listen to your body. I avoided cigarette smoke even as a child - my body knew it was not good. When I was diagnosed I found I felt better when exercising - so I did not stop.

In recent years I have found that taking NSAID's (aspirin in my case) has a direct positive impact on my peakflow, increasing it by about 5%, so I take about 1200 mg of aspirin each day. (As a bonus it helps with my joint pain and stomach problems - the latter secondary to so many antibiotics. I might also have mild Crohn's which is an inflammatory disease and it may be that the aspirin is helping for that reason but both my GP and my specialists are puzzled by this effect; I discovered it by accident after I took aspirin for chest pain.)

GP's are generally quite ignorant about this ilness. The British Thoracic Society are aware of this and trying to educate them by sending leaflets etc to all GP surgeries and their website contains information about what they recommend the investigations and treatment should be. I used this to force my GP to refer me to a specialist; I printed it out and read bits of it to him until he gave in. I suspect he worked out I might file a complaint if he did not. Unfortunately the local specialist is just a generalist and didn't know very much either so I have now been referred, at my request, to the Royal Brompton in London where they are truly fabulous. I am being looked after by Dr R Wilson who really knows this condition as it is his specialty; he doesn't try to treat it as if it's asthma and he knows about the different forms of pain we get, etc. They also do all the blood tests for immune system, genetics, etc in one go and provide physio and so on too. I woud highly recommend them and his clinic in particular.

My best wishes to everyone with this virtually unheard-of disease (my mother thinks I just like to take tablets when I am on antibiotics, other people think I'll get heaps better, ie 'normal', when the course is finished, a paramedic who got called when I collapsed at work one day had never heard of it and wanted to treat me for asthma, and so on - sigh) and I hope you all get the treatment and support you need

Hi again,

I know how hard it is to put yourself back on track when you have bronchiectasis. Stress, tiredness, pain...

But there are many ways of help. Take it slowly. If you cannot do things like exersizes now start from a small targets. Blow the balloons every day- today once, tomorrow - twice, +++. This will encrease the air circulation and will help to develop the lungs or get yourself a poerbreath device.

Start using salt pipe or salt enhaler -this helped me a LOT!

encrease daily water consumption but I woul recomend to drink WATER KEFIR instead - this is a healthy probiotic which will recover your body after antibiotics+ will supply you with good badly needed vitamins.

Visit my website linked above for more information.

Regards,

Tanya

Hi guys,

I am new to this forum and found the discussion very interesting. So far no one has discussed the role of diet and alternative treatments for this debilitating disease.

I have found that as well as being as active as possible, I have to eat as well as I can. I have found that my infections were not helped by eating the normal Western diet that we all do these days including burgers, chips, carbonated sweetened drinks etc. I have found that by eliminating milk and all milk products from by diet, (including milk chocolate, cheese, margarine etc) , all kinds of sugary treats ie. sweets (lollies), desserts, and even things like crisps, twisties and the like, (as these things have artificial chemicals added to them as well as preservatives which compromise the immune system) this has helped enormously in keeping any mucous from becoming infected. I have included lots of green juices in by diet as well. Instead of breakfast, I have a large glass of green juice (ie. baby spinach, lettuce, kale sweetened with carrots and apples which is an enormous energy and immune system booster. (Look on youtube for juicing videos). Before juicing, I was always tired and had no energy at all to do anything. The juicing has played a vital part of my recovery in becoming more active. That is not to say that it is totally the answer as stress also plays a role in infections. We recently moved to another suburb. The dust and stress caused me to have one of the worst infections I had to date. One that put me in hospital after the first week in our new home. A night in hospital on a nebuliser, antiobiotics and Prednisone got me through the worst of it. I am now a lot better thanks to the great care that was given me.

Another thing that I do is take cod liver oil (Vitamin A - a must for anyone who has lung problems, Vitamin E and Vitamin C in large quantities [see the label for recommended dosage]. The vitamin A strengthens the lung walls, the vitamin E is an antioxidant and the vitamin C is an immune booster.

I saw my specialist last week who said that postural drainage is not the only way to remove mucous. Something called a flutter valve (your GP can get you onto one) which vibrates your lungs is another way to get rid of mucous and is much easier than postural drainage.

Anything you can do to strengthen your lungs is esential. Breathing exercises, walking, swimming (this is one of the best) and just plain moving.

I hope some of my experience helps some of you to get better. I firmly believe that bronchiectasis is not a permanent condition.

Hope I haven't gone too far overboard for the first time.

Love to all

Liz

Hi everybody, I am not from the UK,so pardon my English, but am so glad to see there are so many of you also sometimes feeling like an "alien" with this disease.People out there in the world do not really understand just what we are going thru.

Jen, my condition also started in my early 20ties,and I lived a reasonably ok life,because we all thought it was just asthma, and I was regularly treated for that.I was only diagnosed three years ago with bronchiectasis.I am now 50years old and the damage is done. The CT scan showed that I had TB somewhere in the past and it was never detected or treated.

Be thankful for knowing the condition that you have NOW already,because they are doing wonderful research these days and you will definitely be one to benefit from it in the years to come.The excellent advice from everybody on this site, you should take to heart and try it out.

I am also a teacher and considering retirement now,because my condition is deteriorating fast.I am always tired,had to give up sports and get sick now on a monthly basis. I must,however say, if it was not for the excellent help and understanding of my Health Specialist, I would not have been here on earth anymore,a long time ago.

I stopped being treated in the hospital regularly for three years now. Maybe it is because of the use of Azithromycin also,because that is how long I have been using it. (Some of you mentioned the use of it)

One thing that I must say, or ask about everybody's comments so far: Everyone said that they are using antibiotics when things get worse,but do you never use EXTRA Prednizone etc. when things get rough?I have to use it for one week every month, and it is getting now

just too much for my system

Yesterday someone said that we who have this condition,must keep the ph-levels of our body in a healthy state, as it is contributing to mucus problems? What do you all think of that?

Strongs Jen. Regards everyone

Hi Jen,

I am so sorry that you are having to consider retirement at 50 years!

I have been ill for many many years, (70 this year and just had to retire) and had lots of antibiotics over the years; then my doctor thought we would try something new and gave me some tablets for indigestion...even though I said that I don't have heartburn and my cough is very productive. Omoprazone was prescribed and I took them without looking up the serious long term effects first. Needless to say they didn't help at all.

Recently, I awoke in the night with a serious squirting of blood from my lungs, a panic to the emergency medical cover, and at last was given antibiotics by another doctor and then referred to a specialist.

The CT Scan revealed all and I was astounded to see the terrible state of my lungs. Now I can move forward, following the interesting thoughts and advice on this forum and the excellent care from the specialist. Although shaken by the results, I feel more confident in at last getting the correct treatment.

Kind regards,

Lesley