Recently diagnosed with bronchiectasis - British Lung Foun...

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Recently diagnosed with bronchiectasis

beergoggles
beergoggles
14 Replies

Hi I'm new here! My names Paul, I'm 33 and was diagnosed with bronchiectasis on Tuesday evening but I may not be able to see my respiratory specialist until next March. I had whooping cough for years when I was a kid, and they think this might be the reason for the distention of my airways. I get 3-4 chest infections per year, some of which knock me out for days, and I have been a smoker since I was 16 which I am desperately trying to give up. Unfortunately, the stress of the diagnosis has meant this has been particularly hard, but I know that it's the worst idea.

Over the summer I feel like there's no problem, there's not a great deal of mucus production, but it's when the weather hits hard that I start to produce more than I can get up and in places it won't come up from, and there are pleuretic symptoms and sometimes I have ended up in hospital from the chest pain.

I've bought a Aerobika from America to help keep my lungs clear, and take a daily course of vitamin D, echinacea, magnesium and garlic tablets to try and keep my immune system good, and so far this year it seems to be working quite well! Mid-November and no sign of an infection yet, but I can definitely feel the mucus building up. My Aerobika won't arrive for a few weeks though so I'm hoping I can hold it off for a bit!

Anyway, I thought I would say hello! It's both a relief and super scary to get the diagnosis, and I haven't been able to focus that well this week for thinking about it, but it's nice to know this forum exists :)

14 Replies
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GhostlyDinosaur

Hi Paul, and welcome!

There are a lot of people here with bronchiectasis, who can share knowledge and wisdom with us newbies. It is a lovely supportive community. One thing I have learnt here is that we all seem to be a bit different in symptoms and what works for us.

I'm a bit shocked that you can't see your respiratory specialist until March; but it sounds like you are being very proactive about keeping yourself as well as possible.

I take vitamin D and Optibac probiotics daily for my immune system, as well as Carbocisteine prescribed by the consultant. At the slightest sign I might be coming down with anything I take aconite (homeopathic remedy), and usually also echinacea. I use a flutter device to help get rid of the gunk, and active cycle breathing. This combination seems to be working for me so far. (I was diagnosed in August and am just learning how to live my life with and around this condition.)

Wishing you all the best,

Rachel :-)

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cofdrop-UK

Hi Paul and a very warm welcome to you, although sorry to hear you have been diagnosed with bronchiectasis.

Not sure what you mean by having whooping cough for years. I had double pneumonia and whooping cough as a baby which left me with damaged lungs.

You don't mention if it was you GP who arranaged your CT scan or if the GP just thinks you have bronchiectasis, hence your referral to a respiratory consultant. If it is thought to be bronchiectasis you would be wise to check consultant out to see if they have a special interest in cf/bronchiectasis.

I commend you for trying to keep as well as possible with diet, exercise etc but the best things you can do, and you don't really need me to tell you this, is to give up smoking. Easy for me to say as obviously I never smoked having bronch since babyhood - I don't think I would be here now if I had.

Never tried the aerobika but have used a flutter and an acapella choice, both of which you can get on prescription but not many GPs seem to know this. If you buy a piece of medical equipment, make sure you get a VAT exemption.

There are a number of methods of clearing your lungs and your consultant should refer you to a respiratory physio to teach you how to do this yourself and the best method to suit you.

I will leave it for now as I imagine you can get overwhelmed when first diagnosed. Not experienced that, not for bronch anyway, as I've always had it.

If there is anything specific you need to know, just ask. There are quite a few people with bronchiectasis on here and I am sure they will be along with inforamtion and support.

Like GD I'm not sure why you might be waiting for 3 months and I hope you get an appointment much sooner.

Good luck. You will soon feel much more in control of this than you do at pressent.

love cx

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Hidden
Hidden

Hi Paul, There isn’t much that I can add to what cofdrop has said except to suggest two things. Look up the name of the respiratory specialist whom you are waiting to see. If they are a general respiratory consultant and not a bronch expert look on the internet for one in your area who is. They are usually at big teaching hospitals. Take the name to your GP and get them to refer you to the bronch expert. Don’t take no for an answer. Whether you stay with the consultant already suggested or go to a different one, phone their secretary and ask to be fitted in to the soonest cancellation. They are usually very good.

I guess that you are getting the picture now that we bronchs have to be very pro active in our own interests and vociferous in getting the treatment we need.

That is why I say- ditch the cigs, ditch them today. No argument. With bronch they are killing you by adding to the damage in your airways and lungs.

Lecture over, we are here. Anything you want to know just ask.

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peege

Hi, you're in the right place.

Here's the link Cofdrop put up a few hours ago in case you missed it. You'll find very useful. P healthunlocked.com/api/redi...

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dickinson1954

welcome Paul

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beergoggles

Thanks everyone! What a lovely bunch. I was referred for a CT scan by my asthma nurse which was reviewed by a respiratory specialist and the diagnosis delivered by a GP over the phone on Tuesday. The trouble is that the hospital think I missed an appointment to review the ct and get my diagnosis from the specialist in October but I don't remember seeing an invite. Probably my mistake, but it means I'm back to the back of the queue.

I'm seeing a GP today to review medicines. I live in Bristol and it looks like Dr David Smith is the man round here. I've rung his pa a few times but it rings off and she doesn't have an answering machine. I'll ask the doctor for a referral this afternoon.

Thanks for all your advice. My friend is a homeopath and would like to sign me up to be a case study - but can homeopathy work in conjunction with antibiotics?

And thanks for your stern words about smoking. I need it. I am stopped.

Lots of love,

Paul

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peege
peege
in reply to beergoggles

Some homeopaths work along side conventional medicine but some are quite radical and are against them. If this is your friend then beware, I hate antibiotics too but have learnt that without them I wouldn't be here now, they're essential to us.

A friend of mine is staunchly anti medicine, won't even take paracetamol. A few years ago her son Ollie was so poorly she had to take him to A&E. Eventually they drew off a litre of pus from one lung, he was in intensive care & on intravenous abs poor kid. He was very lucky not to have sceptecemia (can't spell it).

Knowledge is the key to a well future. Well done you for looking up BLF.

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cofdrop-UK

Sounds like you have an excellent Asthma nurse whose action has now ensured you will get the right treatment. Look like the right consultant too with an interest in bronchiectasis nbt.nhs.uk/our-services/a-z...

Good luck.

cx

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Maximonkey

Hi Paul, I too have bronchiectasis. The best advice I can give you (the others who have replied to you have said everything else) is to keep a daily diary of how you feel. This will help your consultant to understand how the bronch is affecting you. We are all different and bronch effects us in different ways. The consultant will not mind in fact he will find it helpful to know what is happening to you. If you are like everyone else when you are faced with a consultant who asks how you are feeling, your mind goes blank and you come out of the consultants room feeling hell I didn't tell him very much, the diary will help with this. The other thing is, keep yourself as healthy as you can by staying out of busy congested areas as much as possible, carry some anti-septic hand wash with you everywhere and try not to touch door handles in the same place as everybody else. This will help keep the transmission of germs down. I have not been ill for over 12 months and I went on holiday with a feeling of to hell with it I am going to enjoy myself and not worry about germs during the holiday, you guessed right, I caught a bug and have been ill for 5 weeks. So please don't do as I did, look after yourself. Take care, Maximonkey.

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Dedalus

Hello and welcome beergoggles

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tavymaid

Many thanks beergoggles all the best

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Caspiana

Hi Paul.

Welcome. Its lovely to have you but I'm sorry about your condition. Love the username by the way. 😃

It can be scary sometimes but please do visit this forum often. It really does help to have others who understand. And we really do understand.

As for the smoking I think you know you need to quit. I have heard it can be difficult to do, but I am sure you are doing what you can. I also have heard there is a quit smoking forum here on the BLF.

So glad you are starting your exercises. That's the spirit!

Sending very best wishes.

Cas xx 🐕😃

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