loriLKI

Hi Lealee,

From what I understand a lot is still unknown about how you get this. In my case I think it's something that runs in the family as my mother and grandfather were always coughing. It seems that the ability (or having difficulty with) bringing up mucuous and having think mucus can be hereditary. I also have the sneaky suspicion that my coughing and increased mucuous production gets triggered by house dust.

I was put on asthma medication (including fostair, which gave me the shakes) for 2 years before I insisted on getting allergy tested and seeing a chest consultant who diagnosed me and I immediately ditched the asthma meds. Seeing a chest physio has really helped me and I now am "in control" of the coughing - can highly recommend it if you've not seen one yet. Before seeing the chest physio I could hardly hold a conversation without a coughing fit.

I'm also taking max dose of carbosisteine which really helps me get the mucuous out.

Interested to hear what others have heard about causes.

Lealee in reply to loriLKI

Thanks loriLKl, the consultant tested for sickle cell and allergy’s and they were negative so apparently it’s idiopathic. I didn’t have the cough till the accident. I’ve just started physio and Mycodyne. My GP spent years giving me different drugs (which cost a fortune) one gave me severe night terrors which I can laugh at now but at the time it was awful.

How do you explain to people what bronchiectasis is?

I’ve told my family but don’t feel they realise how this effects me.

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jeanette-bkworms in reply to Lealee

As I understand it Bronchiectasis is the scarring, stiffening and dilation of the bronchial tubes. Each infection worsens the damage which becomes permanent. So, in the end, it is the Bronchiectasis that gets us. But prevention of the infections and clearing the mucus which helps breed the infections goes a long way to preventing the Bronchiectasis from getting worse.

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Sandy-

Hi Lealee

I was diagnosed with bronchiectasis 10 years ago, and asthma about 16 years ago. I was told it was due to having had whooping cough at 6 months' old and recently told that being a a breech birth - feet first and put in an oxygen tent also probably damaged my lungs. My mother explained that the doctor and midwife who delivered me at home said I would be fragile.

I certainly remember clearing my throat regularly as a child and having associated problems such as perennial rhinitis, ear infections etc. I probably had mild asthma too but all this worsened in my late 40's when told that reflux from a hiatus hernia can contribute towards bronchiectasis.

I had pneumonia and pleurisy before being diagnosed. I'm sure many people on the website have similar stories. I retired three years ago aged 62 and keep well by walking and taking Symbicort, Carbocisteine, Azithromycin, steroid nasal spray and antihistamine.

Stay well and keep clearing the lungs (very important).

Lealee in reply to Sandy-

I clear my throat a lot more than I thought which could explain why I get laryngitis often. I never heard of pleurisy until I was in hospital, that’s when I realised how bad my breathing had become. Do you find exercise helps?

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loriLKI

Ive been told exercise is hugely important. 20-30 min a day of exerting yourself so that your lungs are put to work - which will help with circulating air/shifting mucuous etc. "If you don't use it, you'll loose it" seems to be the motto! I'm a keen runner and do lots of exercise so this was all good to hear for me as I was dreading they would recommend I cut down on running. I also know of someone who joined a singing club to help open her lungs and breath better.

TamBell

Hi Lealee

I was only diagnosed last year, after several difficult years of chest infections, and pneumonia, which were poorly diagnosed and treated. My Resp Consultant told me that my bronch is idiopathic.

Like Sandy- I have a lifetime history of allergic rhinitis, and ear infections, then about ten years ago was diagnosed with a hiatus hernia. The hernia causes lots of reflux and it's been queried that aspirating this acid and enzymes could have contributed to the bronch. My Resp Consultant is particularly emphatic about keeping the reflux under control because of the knock-on effect on my lungs.

I am 62 and retired, and my main exercise is walking my dog. I'm fortunate that I live on the coast, so a brisk walk in cold (it's Scotland), salty, air does wonders for me.

I take antihistamines, proton pump inhibitors, steroid nasal spray, and antibiotics to help me keep my symptoms under control.

I admit I've learned more about this illness from online communities, than from the GPs in my local practice, so I'm endlessly grateful to my fellow sufferers for sharing their knowledge and experience.

Keep coughing everyone, and enjoy the good days.

Lealee in reply to TamBell

It seems there are slot of people with idiopathic bronch. I find it hard to accept that they can’t say how we get this condition. I was very fit and healthy until a car crash, I guess I feel I need to be able to place blame somewhere. If the Drs had listened to me when I first started saying something isn’t right would my breathing have got to this stage. I have quite an active job so I think that helps.

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Gillanh

Hi, I am new to this site but was diagnosed with bronchiectasis about 4 years ago. I had whooping cough as a child but also polio which affected my lungs and then yearly bouts of bronchitis and laryngitis. also 7 years ago pneumonia.

I have recently moved to an area near busy main roads and motorways and find my btonchirctasis seems much worse. Had anyone else experienced this? I am thinking that sea air might benefit me so despite another moved this might be best. Does anyone have any thoughts on this?

Exercise does seem to be a key to helping keeping well but It is difficult to her motivated as I find that I am very fatigued with this complaint. Any suggestions?

Gillianh

Lealee in reply to Gillanh

I find that certain things affect my bronch, smoke, car fumes, strong perfumes, damp etc.

Do you find that if you’re on holiday (fresh air) you breathe better?

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Yvonne-S

I had whooping cough as a child. Now I have a hiatus hernia

cofdrop-UK

I was diagnosed by a wonderful paeediatrician with BE in 1948 at the start of the NHS, following whooping cough and double pneumonia at the age of 5 months old. So I reckon I must have been a tough cookie to have survived in those days, albeit with very damaged lungs. Spent most of my childhood in hospital or taking 2 buses from school on my own from the age of 11 for physio, ironically on buses which were full of smoke! At nineteen I had measles - so a double whammy!

Lealee in reply to cofdrop-UK

Wow, I never heard of bronch until I was diagnosed this year and assumed it was a fairly new disease. I’ve just returned to work after having pluresy and my colleague told me his grandfather died in the 60s of it. So you’re definitely a tough cookie, especially with anti biotics not really being around!!

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cofdrop-UK in reply to Lealee

We had penicillin injections which b***** hurt and lots of physio, physio and more physio, until other antbibiotics were developed.

You may find this link helpful. Was one of the Patient Advise Group but had to give it up after 18 months due to ill heath but it is up to date. It goes from the basic to videos from clinicians to clinicians.

europeanlunginfo.org/bronch...

Glad your pluresy has improved and hope you stay well during this rubbish weather.

cx

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Lealee in reply to cofdrop-UK

second bout this year but now I’ve been diagnosed and have the rescue pack with steroids and decent antibiotics (not 7 days of amoxicillin) I seem to have recovered well! After struggling to breathe for so long I’ll appreciate every good day. I jogged for a bus today, something many take for granted but feels like a real achievement 😊 thank you for the info xx

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cofdrop-UK in reply to Lealee

There isn't anything wrong with Amoxil, although for an exacerbation of bronch it is usual to be a high dose for 14 days. What matters is what bacteria is shown within your sputum sample and what it is sensitive to. If for example you had the bacteria strep pneaumoniae it could well do the trick. If you grew pseudomonas then it would not be of any use at all.

It is more usual for rescue steroids to be used in copd. It is used less seldom in bronchiectasis unless you also have asthma, copd too.

Brilliant news you jogged for a bus today - now that really is an achievement. Long may it continue for you.

cx

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Lealee in reply to cofdrop-UK

I have asthma aswell so any exacerbation means I struggle breathing. I’ve never been asked for a sputum sample despite having pluresy twice his year...

Although while I can jog and am mobile I’m not going to complain 😊

X

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cofdrop-UK in reply to Lealee

I have asthma too and use a steroid inhaler. Occastionally I have oral steroids but try to avoid them as much as possible.

I have frequent chest infections so put in a sample as soon as one starts. A nurse at the surgery makes sure I have plenty of MC&S bags, labels and pots.

Glad to hear you keep up with the jogging - it will help to clear your lungs too.

cx

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Cooperhart in reply to cofdrop-UK

I also have asthma to and am on steroid inhaler and oral steroids which I'm dependant on maintenance dose 10mg.

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NorthernGirl3 in reply to cofdrop-UK

My problem is that I need a form from the doctor in order to take the sample to the hospital. Then the test takes over a week to send a result. In the meantime I take the rescue pack which is Amoxocillin and Prednisolone. The Amoxocillin never, ever works so end up taking two antibiotics. This seems very wasteful and I'm having two lots of antibiotics every time.

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Robin77 in reply to cofdrop-UK

This is a really good link, thank you!

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medway-lady

Born with it. Had immune tests and confirmed.

Hidden

I got Measles aged 5 in 1956, which went to my chest and I had Pneumonia. No more problems until in my 50s. I'm assuming this is why I now have Bronch.

Sops

Hi, i was referred to a bronchiectasis consultant by my GP after a bad bout of pneumonia requiring 4 months off work. I had been in and out of hospital with acute sinusitis (5 operations for wash outs of nasal cavities, reshape of nose, opening of roof of mouth to remove tooth in nose, yes that's right) and diagnosis of asthma with appropriate treatment, never been convince about this.

The consultant asked me thorough questions about my juvenile health and i told him i was borne in a smoke-laden village pub and lived in the rooms above. When i was a toddler i contracted measles and whooping cough and was seriously ill.

Although they sold the pub and moved to a house, my dad and grandfather both smoked incessantly until death. My Dad was 58 years old when he died, i admit i did feel bitter, but the years have helped,

My consultant said he saw a clear path to B. and when hs showed me the CAT scan of my airways and lungs i was so shocked to see the deformation.

I have never smoked and by good chance was discovered at my small village junior school to have a good singing voice,

This lead to joining the County choir and many others, and i have sung ever since, both here and abroad.

I believe this to be the best form od exercise there is for helping B. And my consultant agrees.

Currently my choir is not allowed to meet or perform so i warble in the conservatory, garden, car etc.

I used to live in the tropics, and sang there in pantomime and shows.

I think the promotion of singing for breathing is brilliant and recommend anyone to join their local group.

Sopsx

jeanette-bkworms in reply to Sops

I couldn't agree with you more. Although I too sing around the house, I miss singing with others and look forward to this pandemic running its course and letting life get back to normal.

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Sops in reply to jeanette-bkworms

I know what you mean, my conductor of the last 18years is leaving at Christmas and chances are i won't see him. Will send a thank you card at least.

Our incoming conductor is starting with Faure’s Requiem so i shall dig out my battered copy and get started. Hopefully this is for March.

Did a batch bake on Sunday to Take That and really enjoyed singing along.

Take care, lovely to read your email

Sopsx

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jeanette-bkworms

Did they test you for Alpha-1 Antitrypsin Deficiency. It is a hereditary condition that effects the lungs and the liver. The liver is supposed to produce a protein that then goes to the lungs and tells an enzyme that cleans the lungs when to stop. In Alpha-1 the protein can't get out of the liver so it never gets to the lungs and the enzyme doesn't stop it just goes on to the healthy lung tissue. So the liver gets clogged up with misshapen proteins and the enzyme damages the lungs healthy tissue. Now this has been going on since birth so why some people never develop symptoms and others don't develop symptoms until late in life I don't understand. I am an MZ. The M is a healthy, normal gene and the Z is the damaged gene. You get one gene from each parent. As an MZ I am considered a carrier. Someone who was a ZZ would be considered a full fledged Alpha-1. So that is my less than elegant description of what Alpha-1 is. If you have any questions please feel free to ask.