bronchiectasis

[shedevil49]

My real name is Sheila ! Has anybody got any handy hints for evey day symptons!

[stone-UK]

Hi

Interesting reading.

bronchiectasishelp.org.uk./...

[shedevil49 in reply to stone-UK]

Thanks ive read it all. I have just a lung lavage which has made me really ill, the broncoscopy was a nightmare!

[Hidden]

Hi Sheila nice to meet you and welcome to the site. There are a few folks on here who have bronchiestasis and stone has put a good link on. If you have specific issues then fire away with any questions you have. x

[cofdrop-UK]

Hi Sheila

A very warm welcome to you. I did reply earlier but where it's gone I do not know!

The booklet is fine, although you would be hard pressed to find a specialist bronchiectasis nurse in the UK as there are only about 4 or 5.

Are there specific symptoms which you find most troublesome? Not sure how long you have been diagnosed and how much info the medics have given you.

There are some bronchies on here who would be only too happy to help - so ask away.

love cx

[shedevil49 in reply to cofdrop-UK]

Thanks i was diagnosed last March i was treated for asthma for 4 years then 16 months ago i was very ill and ive been ill ever since! I seem to have a really bad immune system! The pain in my chest every morning is awful then the coughing starts! Just lost my job as i only made it to work for two weeks out of 15 months!

[helingmic in reply to shedevil49]

A great welcome to you, "real-name-Sheila"!

For your morning voughs try this exercise to free you from mucus.

youtube.com/watch?v=l0eKW-A...(Not working as expected?)

Try some fentle exercises as well. It's vital to keep your lungs moving. Start with this, but any exercise that you can do, do it!

youtube.com/channel/UCUu4aB...

Look for the exercises with the lady in blue!

Keep them up and you will improve. Mic

[shedevil49 in reply to helingmic]

i do that but doesnt always work thanks!

[helingmic in reply to shedevil49]

shedevil49. Yes, we have our ups and down. When you feelblah, rest and listen to music that lifts the spirit.

When you are lifted up, have a great practice. I prctice the flute. sometimes I get very tired, even very frustrated, but that's the challenge of learning an instrument. so I rest and listen to James Glaway. The way he plays is so divine that it inspires me and I make my goal to try to play like him. Not achieved this yet, but this is the way! Cheers, Mic

[shedevil49 in reply to helingmic]

Good for you that sounds very chilled out!

[Hidden]

mine developed many moons ago now but only started real treatment to keep it clear last year the best thing I do is to keep it clear by postural drainage that to me is sleeping on my right side so the bronchiectasis can drain into the bronchi so when morning comes all that gunge that usually sits there going septic is cleared out in the morning this is a ongoing routine and must never be forgotten to do.

[shedevil49 in reply to Hidden]

Thanks ive been told the breathing and huffing technique it only works sometimes though !

[Hidden in reply to shedevil49]

It all requires a lot of patience as well shedevil just give it time keep working at it and you will find out what is best for you.

[cofdrop-UK]

Sheila I am so sorry you are having such a rough time. It is, I'm afraid all too common that non cf bronchiectasis is underdiagnosed or or takes a long time for some medics to get their act together. Does this mean you now have asthma and bronchiectasis - many of us do. It must be very hard to come to terms with the diagnosis, although I wouldn't know as I have had it since babyhood and therefore know nothing else. Both senarios bring different problems but treatment and management is the same.

I assume you have had a ct scan to come to this diagnosis. I also assume you have a respiratory consultant, if not you should certainly have one and one who has a special interest in cystic fibrosis and/or non cf bronchiectasis (check out your consultant online) as this can make the world of difference.

One of the referals con should make is to an Immunologist (not sure from your post if this is how you have come to know your immune system is not good.

Con should also have referred you to a physiotherapist to show you the many techniques for clearing out the gunk in your lungs, along with gadgets which would also aid you to do this i.e. the flutter and the acapella, both of which you can now get on prescription. We are all different and have our own prefernces as to which technique to use but you need to be shown them. It is so important to get rid of the gunk from your lungs, otherwise it just becomes infected.

You might want to discuss with consultant ways of thinning out or assisting the removal of the gunk i.e. a mucus thinner or nebulsing saline. You also don't mention any inhalers.

A lot to take in but one thing we bronchs learn pretty quickly is we have to be our own advocates.

Re the chest pain hun. It could be a number of things plurisy, muscular - I think you really need to see you GP to get this checked out properly.

I am so sorry you have lost your job Sheila.

I do hope once you get the right medication and management you will see an improvement in your health.

Love cx

[shedevil49 in reply to cofdrop-UK]

Thanks ive got inhalers and mucodyne and ive got a good consultant everything takes a long time to sort out! I was on long term antibiotics but they didn't work! I had a broncoscopy last week it was awful so maybe they will find something that's treatable! Its hard to except you cant do things you used to!

[barnowl1]

Hello Sheila, sorry to hear you are suffering so badly. I was diagnosed Nov. 2013. G.P. told during a phone csll, saying it is very rare but there is one other person in our small town with it. All you can do is learn to manage its! I think we all learn to know when we have an infection brewing but unfortunately it takes time to learn and in the meantime everything gets worse. However with perseverance the correct medication will be found for your particular bugs and I am sure you will improve . I must add I had to keep nagging for help and asking for different antibiotics. Nothing seemed to work. After 15 months I decided to see a private cons. He gave me an antibiotic called Azthromycin and a week later I was improving and after a month was better than I had been for several years. I do be!I've however that it does not work for some people, but it is well worth a try.

Hope this helps and if you have any specific questions I would be pleased to help providing I have had a similar experience. Take care and keeping asking questions of your g.p. and you will soon become more confident. I am sure things will improve soon. barnowl

[shedevil49 in reply to barnowl1]

Thanks I have just came off 4 months of that antibiotic I didn't help at all unfortunately! Its hard work finding out if theres anything that can help me ! Hope your feeling ok! Sheila

[barnowl1 in reply to barnowl1]

Sheila, so sorry they didn't work for you I had such high hopes for you. Never mind you must keep asking for answers as well as for different treatments and let's hope you find something sooner than later. Do any of your g.p. specialise in lung conditions? They may be a !e to suggest something else. In the meantime will be thinking of you and hoping that you rare soon improved. Best wishes barnowl

[Hidden]

Hi Shedevil. Another long term (63 years) bronchiectasis person here. First of all, you are the same person that you were before you were diagnosed. You CAN do the things that you have always done. The most important thing with this condition is that you get it by the neck and take control of it with clearing your chest, staying away from other people's smoke, exercise and nagging your docs to get the right antibiotics.Cof drop gave you marvellous advice so I will not repeat it. I am concerned though that they want to use a bronchoscopy to diagnose as scanners do a better job on bronchiectasis. Also, lavages are very suspect. I have never had them because my consultant and his team did not believe in them. You should learn to clear your chest yourself and there is always the danger that fluid from lavages will be left in the damaged pockets of the lungs causing further infection. It is a very very old fashioned treatment. Think very hard before you let them do invasive procedures on you. Cheer up, bronchs are a foisty lot who keep going for ever because they take control of their condition. Welcome to the club. We are here for you.

[shedevil49 in reply to Hidden]

Thanks

[shedevil49 in reply to shedevil49]

Ive had the lavage the consultant wanted to test what was in the infected pockets so I hope I can get treatment that works!

[skinnylizzy59]

Hi and welcome to the site. I've read through the post replies and can't see anywhere if anyone has mentioned ringing the BLF Helpline for immediate and informed answers to your questions. The number is 03000 030 555. Best wishes and good luck. Take care, Lizzy x

[shedevil49 in reply to skinnylizzy59]

I have months ago but your right I need advice again thankyou .Sheila x