I am a 75 year old female I have had a cough for 20years and have been diagnosed with Bronchiectasis 18months ago. I am told by a

[keet]

consultant that there is no treatment and I am taking MST morphine 5ml twice each day as a cough suppressent. Is anyone with a similar problem receiving treatment?

[peege]

Hello, a warm welcome to this site. There are several people here with bronchiactasis.

It's a pity they took so long to give you a diagnosis though.

I'm so sorry I canot offer any advice but I know someone will be along shortly with more experience.

There is also the helpline to call 03000 030 555 or email them for advice - they are a mine of information.

I wish you all the best. peeg

[keet in reply to peege]

Thank you so much for the number I will

try this for information

[knitter]

Hi and welcome from me...I too have had a cough for 20years...it gets better sometimes but never really goes unless I am high dose of steroids. I don't have bronchiacstatis though, but some people on this site do, so I hope they will be able to offer advice

[cofdrop-UK]

hi Keet

Really sorry you have bronchiectasis and it has taken so long to be diagnosed, but really glad you are here - welcome.

I have had bronchiectasis since babyhood and I have never been told or have suppressed a cough, nor do I know any bronchiectatic who has.

I am wondering if your cough is not productive - I do know some bronchs who have dry bronch, but none that use morphine for this - maybe someone will come along who has.

I would be very interested Keet to know what your consultant is a specialist in.

Personally I would always request a referral to a consultant specialising in cystic fibrosis/bronchiectasis. There are some bronchs who do not bring up mucus when they cough, but the majority do. For this reason we are usually referred by the consultant to see a respiratory physiotherapist to learn techniques and gadgets which help us to get up the gunk, so it is not laying around in our lungs and getting infected.

Whilst brochiectasis cannot be cured, it certainly can be managed and we can do a lot ourselves to prevent our lungs deteriorating.

I am a little bit concerned your doc is not being proactive or supportive.

It's probably a bit overwhelming at the moment Keet so probably enough to take in for now, but please ask anything which is concerning you - no question is silly or unimportant. You could, as peeg suggested 'phone BLF. Another reputable site is Bronchiectasis R Us. If you want a chat you can always pm me anytime.

Love cx

[keet in reply to cofdrop-UK]

Thank you for you reply I do breathing exercises agt the start of each day which helps tp bring up white mucus so I am informed it is not infected. Than k you for the offer of extra support x

[rick1]

Hello and welcome, I have bronchitis is this the same, my G.P. told me there was no quick fix for this but told me to use Albas oil in boiling water to loosen the mucus.

[Hidden in reply to rick1]

bronchitis is different to bronchiectasis, rick1. Best for you to look up. I should know but prefer you to read the written word.

[cofdrop-UK]

Hi Rick

No it's not the same. Bronchitis and Emphysema come under the umbrella of copd, whilst non cf bronchiectasis is a different condition and is more akin in lung terms to cystic fibrosis. Lung disease is crap whatever the label!!!

Love cx

[thatcham1939]

hi keet

welcome to the confusion site, which has had a complete overhaul.

I have bronchictatis, but it took 9mths before is had an ex-ray and a further 3mths before I saw a specialist who was very good, I do hope you get help,

jan

[Hidden]

I have bronchiectasis which is very prone to chest infections. This is information available on the NHS/Boots websites. I do a sputum watch. If there is a lot of it, and strongly coloured green/yellow, feeling unwell - see your doctor. All the best, Annieseedxxx

[keet in reply to Hidden]

Thank you I will checkthis site

[stone-UK]

Hi

From one of the members may help.

bronchiectasishelp.org.uk./...

[Pentreath Volunteer]

Hi Keet

So sorry to hear about your cough. I had a persistent productive cough that was firstly diagnosed as asthma well over twenty years ago. Then two years ago after a series of exacerbations requiring courses of anti biotics and steroids I was sent for further tests. This confirmed that I also had bronchiectasis. Since then I have had a rescue package at home of steroids and anti biotics to start taking as soon as an exacerbation starts. For bronchiectasis my consultant believes in hitting an exacerbation 'hard, strong and long - 10-14 days on 30mg steroids and then tailing off and 500mg of anti-biotics for two weeks. Over the past year I have been coughing more again and the consultant thought it might be due to undertreatment of asthma and doubling the inhalers (2 x 250 Seratide twice a day) has made a huge difference and I hardly cough at all now and the 'mucous factory' has closed down and I am sleeping well and my energy levels have gone up. I am 73 and understand that persistent coughing is really draining.

The advice to talk to one of the wonderful BLF nurses is really worth following up. I do hope that something can be done to help you.

Best wishes

Lesley

[keet in reply to Pentreath]

Pentreath your history of your cough is very similar to mine - the time scale etc I have 3 or 4 spasms of persistent coughing each day which as you say is exhausting. Thank you so much.

[Pentreath Volunteer in reply to keet]

Dear Keet

You are welcome. Please let us know how you get on.

Best wishes

Lesley

[Pentreath Volunteer]

PS you could also ask to see a respiratory physiotherapist as they can help a lot in giving you exercises to keep your lungs clear and working as well as possible.

[Hollyhockhattie]

Hello.. I have been unwell for the last two years with gradual shortness of breath on walking until a few weeks ago without any exertion needed and unable to get off the couch and not know why. I am 58 and have always been active, worked, kept dogs etc and do not smoke. I have been back and forward to my GP only to be told that i'm depressed! { any wonder). I lost over two stone in weight and wasn't taken seriously by anyone as people thought if it was serious then the GP would of acted much sooner. I also started to get repeated chest infections which were not responding to antibiotics and was coughing so much It sapped all my energy.

Insisting on a blood test and an x ray I received an immediate referral to the hospital where I had an abnormal CT scan and was invited for bronchoscopy the next morning where my saturations were 87% and my resting pulse was 144. I was admitted to hospital immediately.Have been told my lungs are very scarred. I've now been discharged following 9 days of intravenous antibiotics , steroids, carbocysteine, oral antibiotics, nebulisers and omeprazole. I have been told that I have Bronchiectasis and they still don't know the cause. Have been referred for a sweat test to see if there is a genetic link. I am still wobbly from it all. I live by myself and would appreciate any information, similar stories, What's the prognosis?. It's all so overwhelming just now. I'm following the hospital regime, doing my chest physio and drinking lots of water.

Thank you.

[cofdrop-UK in reply to Hollyhockhattie]

Hi Holly

Sorry you have bronchiectasis. Unfortunately I have heard about long delays in diagnosis many times - you only have to look at Keet who started this thread. I haven't experienced this problem as I was diagnosed at 5 months old following double pneumonia and whooping cough - so I must have been a tough little b. I'm 65 now, so don't get into a panic - bronch can be managed.

Two things pleasedI me about your post. Firstly, how you eventually became your own advocate and requested action. Something you shouldn't have to do, but believe me we sometimes do have to. Secondly the fact that your consultant is requesting a sweat test to eliminate cystic fibrosis shows he/she is very proactive. If it proves not to be cf or genetic I'm not sure you will ever find the cause, nor really that it matters as the treatment and management will be the same. Can you remember ever having whooping cough, measles or pneumonia?

If you have any specific questions fire away - probably best on a new post as it could get missed as other posts are added.

love c x

[Hollyhockhattie in reply to cofdrop-UK]

Hello c

Thank you for your message. You have been reassuring and clearly know what you are talking about.

In answer to some of your questions regarding illnesses., My eldest two children contracted whooping cough back in the late 70's but I didn't catch it. Also I did have measles as a child but all kids had measles in those days as i'm sure you know. I had a bout of pneunmonia about 4 years ago which took a while to get over but that's all I can remember. I've always been pretty well in fact.

Specifically though I was wondering about the prospect of returning to work. I am a nurse or was , haven't worked since last October, but I want to , financially as well as enjoying what I do. I realise that this is the first time that I haven't been breathless in two years now so am feeling optimistic.... but !! for how long? the hospital docs say i'm now vulnerable to infection and the long hours will be too much. Yours thoughts please.

kind regards

Holly

[cofdrop-UK in reply to Hollyhockhattie]

This is a really difficult one for me to answer hun because I am not a nurse, nor do I know in any detail how your bronch effects you personally - frequency of infections etc.

Your doc is right you are vulnerable to infection as your lungs are compromised (but you know that) and the hours are indeed to be thought about.

I would have thought it would depend in what area you work Holly. I would have thought respiratory would defo be out, but saying that I know a lady in the States who has PCD (a genetic form of bronch) who worked for many years as a resp therapist and when young we had a doc who was a bronchiectatic. I would think it unusual though.

I would think changing to and fro from day to night shifts may be very unsettling, but only you will really know. Would you fancy working in outpatients where the hours are often set to some extent. When I had my face surgery (plastics) the nurses were telling me they work pretty set hours finish after surgery and have their weekends free.

It might well be helpful for you Holly to telephone the nurses at BLF. They are extremely friendly and helpful and will appreciate where you are coming from both from a bronchtiectasis and a nursing point of view. Peeg has put up the number in her post above.

Please let us know how you get on.

Good luck

Love cx

[Hollyhockhattie in reply to cofdrop-UK]

Hello c

Thank you for your replys. I have managed to join a breathe easy group and talk to the organiser. She gave me a lot of useful and encouraging information . Unfortunately she said that there was no one under the age of 60 or with bronchiectasis but I'm still looking forward to meeting everyone. I'm also encouraged by everyone here who knows about bronchiectasis and living with this condition. There is real support here and i'm so thankful for it. Peeg has been very helpful too. I will continue with my recuperation and regime that I have been given to follow. Attend my sweat test and follow up and keep in touch with all of you. I can't say though that now my antibiotics are coming to an end that i'm no t terrified that its all going to begin again. i have long term inhalers, , mucolytics, and others but am sure that i'm going to become a recluse for fear of catching another infection and this is extremes!! ( despite wanting to go back to work)!

Bless you for your time

Holly x

[cofdrop-UK in reply to Hollyhockhattie]

Holly please don't allow your bronchiectasis to beat you and become a recluse - you will have not life that way. Take some sensible precautions - flu and a pneumonia jabs (usually around October) meticulous hand washing Moving away from folks with coughs and colds and away from crowded places when there are fluey bugs going around.

It is the nature of the beast that we will get recurring infections and we just have to do our best to manage this condition by trying to eat healthy, drink loads, take our meds and do our lung clearance.

You will feel more secure if you have a supply of antibiotics at home (most of us do. Very useful if it's the weekend or holiday time when the little sods usually set up home. Many of uss too have a sample pot - I am lucky as a lovely nurse at my practice gives me pots, prints out all the stickers and gives me the lab bags - I just have to fill it in and change the date and I usually take it down to the surgery, then start an ab and when the results come back I will either be able to carry on with the ab if the bugs grown are sensitive or change to the correct one.

You will soon feel much more confident living with this condition. Don't let it control you - you control it.

Hope you enjoy you group - sounds good. True there doesn't seem to be many non cf bronchs, but take a look at another reputable site bronchiectasis r us and you will find there are quite a lot of us.

Again please let us know how you get on.

Good luck

cx

[chubb]

Hello

I was taking Morphine for Bronchiectasis and it suppressed the tiring, annoying cough. However it also stopped me from getting rid of the horrible mucus,therefore I had numerous chest infections so I ceased taking it. I was also prescribed methadone at one point to see if this was any better,it wasn't. I am now on long term antibiotics and i have been on these for almost a year. Take care of yourself