Newly diagnosed with bronchiectasis - British Lung Foun...

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Newly diagnosed with bronchiectasis

PoodleMum
PoodleMum

Hello, I’m a newbie. I was recently diagnosed with bronchiectasis.... I say recently, but in fact it was picked up coincidentally on a CT scan for something unrelated in 2015, but nobody thought to tell me! It was only a few months ago when I was back at the GP surgery with yet another chest and sinus infection, which I seemed to have one after the other for the past year and a half, and I was told “it’s to be expected with bronchiectasis” .... wait, what? That’s when I found out I had it .... and that was from the nurse practitioner, all the doctors I had seen had overlooked it. Anyway, I’ve so far seen the respiratory physio and saw the consultant this week. Apparently I’m on the milder end of the spectrum so I’m reassured by that, but I already find the symptoms quite troublesome .... any advice and/or guidance on managing this condition going forward would be much appreciated.

22 Replies
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Hidden
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Welcome to the group PoodleMum. There are quite a number of Bronchs on here who would be only too happy to pass on advice to you. As a sufferer myself, I find that drinking water keeps your sputum runny and easy to cough up. I also take a mucolyctic which has the same effect, but others more knowledgable than I am will soon add their expertise to the incredible fountain of knowledge available.

PoodleMum
PoodleMum in reply to Hidden

Thanks for your reply. It’s reassuring to know there’s plenty of experience in the group. I seem to have a new symptom this week but I’m not sure if it’s related? I’ve felt for a while now that mucus feels like it’s sticking in my throat and difficult to cough out ... and I’m glad you mentioned ‘Sticky’ because that’s how I would describe it .... but for the past few days I’ve felt like there’s something stuck in my throat that I can feel when I’m swallowing. Is that common with this or is it unrelated?

Hidden
Hidden in reply to PoodleMum

I get that too, I think it's quite common. I find this downloadable booklet helpful. :-)

chss.org.uk/chest-informati...

Oh my goodness. 66 years living with bronch to still hear so called medical professionals off handedly telling people that repeated infections are to be expected. I despair. Bronchiectasis is a matter of self management and medical back up by an expert. This way it is possible to lead a normal life.

First of all, please check that the consultant whom you are seeing is a bronch specialist and not just a general respiratory consultant. Gen resp cons are trained mainly in copd which is completely different. They do not have the expertise or experience in bronch but don't like to admit it. If you are not seeing a bronch expert look for one in your area ( usually at big teaching hospitals) take the name to your GP and insist on a referral. Do not take no for an answer. Your relationship with your consultant will be the mist important.

GPs know virtually nothing about bronch and resp.nurses even less. This is why they need the guidance of a bronch expert to help give you the correct drugs etc.My GPs are grateful for this and very cooperative.

Bronchiectasis is complex to treat and we are all different. Medical Treatments range from oral antibiotics to nebulised antibiotics and IV. This is why you need the specialist.

The best thing that you have had so far is the meeting with the physio. Keeping your lungs empty of the fluid in which bacteria like to breed is THE most important self management in bronch and the physio can teach you how to do this.

You need to.learn to recognise when you are getting an exacerbation and the consultant should tell your GP which 14 day supply of antibiotic they should give you to keep at home to start as soon as things change. You should also be able to contact your consultant through their secretary should things not be right.

From your post it sounds as though you have a sinus infection and thick mucus is dropping down into your throat.

I don't know what the consultant said to you but it doesn't sound as though they came up with an ongoing plan. I'm afraid that we bronchs have to be pro active in our own interests and vociferous in sorcing the correct treatment. You are at the beginning of kearning about this and it will take time. We are here for you if we can help.

PoodleMum
PoodleMum in reply to Littlepom

What a fab reply, thank you so much! I’ve already learned more here than any medical professional has told me! So pleased I found this group. The consultant told me about BLF so he at least got something right. Incidentally, I paid to see him privately as my GP told me there was no need for a specialist referral, that it can be managed at GP level. I wasn’t at all happy with that hence the private appointment. I will be much more assertive from now on!

Littlepom
Littlepom in reply to PoodleMum

Good for you.

A very warm welcome to you PoodleMum, although I am very sorry not only that you have bronchiectasis but the neglect of and the way in which you found out you have it. Unacceptable. As another life long bronchie, I hate to hear of people being short changed.

Excellent reply from Littlepom.

Here is a link which you may like to dip in and out of. European Respiratry Society are very reputable and this contains most up to date info, which I was involved in for 18 months.

europeanlunginfo.org/bronch...

Any questions ask away. There are quite a few folks on here with BE who will be most willing and happy to help.

Cx

PoodleMum
PoodleMum in reply to cofdrop-UK

Thank you, I’m so grateful for your help, much appreciated. I will definitely check out the organisation you recommended. I’ve learned a lot already.

Hidden
Hidden in reply to cofdrop-UK

Thank you for that link cofdrop, I've added it to my favourites. XXX

Welcome ,I too are fairly new to all of this but thanks to the fantastic people on this forum I have agreed that self management is the answer .Dont feel as though you are a nuisance to your gp,look and care for yourself as this can be quite a selfish illness ,good luck xx

Welcome poodlemum - I am a mild sufferer of bronch and my new inhaler (fostair) and regime of vitamin d3 vitamin b complex etc seem to keep me on the good path recently . I was diagnosed in my early 50's after a really bad bout of pneumonia that wouldn't clear - they actually thought it was cancer showing on my x rays until I had a scan- though I'm thinking I've had it since I was 5 when I acquired measles and whopping cough together. I get sticky mucus in my throat and clear it by coughing or panting and extreme fake chewing . Take care x

Welcome! Stay well hydrated and apparently avoiding daily products help. Exercise well and I take Vit D, E,C and Zinc. I've lived with bronch for 12 years, had all the bugs and IV abs and still here to tell the tale! Oh, and dont look at the internet. I was convinced I was going to die soon when I read some stuff, worried the crap out of me! Good luck.

I have the same problem usually just the one side often I feel my sinus blocked as well. Gp.gave me medication which didnt suit me so tried again again not suited to me. Both make me sick. Icant cough just won't come someone has mentioned a medicine which you can buy at the chemist so will see its supposed to be for this kind of mucus. I'm also going yo try the hot water with towel over my head. Half the time I feel I cant breathe then later on during the day it starts to drop down back of throat. If I could cough it might help. Spoke to consultant he wants me to try the medication again but I cant see the point whe it makes me sick. Just have to see what this medication is like when I get it from boots.

PoodleMum
PoodleMum in reply to Spacecat1

Hi Spacecat1, it’s no fun is it? What’s the name of the medication you’re getting at Boots? Hope it works for you, I’d be interested to know how you get on with it.

Hi PoodleMum and welcome to the site. I was treated for asthma for years and kept telling my doctor that the inhalers didnt work, she didnt believe me. It was when my doctor retired that I was sent to Tescos car park for a ct scan that it showed up I had bronchiectasis, I was then sent to see a consultant and as Littlepom says you really need a specialist in this field, anyway the consultant tried me on various inhalers which didnt work, with bronchiectasis your airways are already wide open and using an inhaler to open your airways seems pointless to me, but I persevered. I developed a sinus infection that hasnt cleared up yet. The best thing the consultant did was send me to ent as the doctor there put me on a low dose of doxycycline for 6 weeks which helped, he also said i need a sinus op and to straighten the bend in my nose as this was holding infections. I am due to have this op next month. I have been terrible for the last 18 months, wish i would have known all this at the start of things as it could have been cleared quickly. So, clear your chest every morning and evening (watch utube on how to do this) I use nasal guard whenever I go out, drink plenty of fluids, I use Sterimar nasal wash twice per day. Take vit c/d, magnesium and get plenty of exercise. It takes some getting used to, but this site has been invaluable and is like one big family. Sorry its such a long post, hope this has given you some information. Good luck Irene x

PoodleMum
PoodleMum in reply to Izb1

Thanks Izb1 for your reply, very helpful. I’m sorry things have been so difficult for you. I’m learning quickly! I get a lot of sinus problems too, regular stuffy nose, especially at night which affects my sleep. The physio recommended a nasal/sinus wash ... I’ve tried it but just couldn’t get on with it, made me feel worse even though I tried to persevere with it. I’m already taking Vit C with zinc and Vit B complex ... I’ve thought about taking magnesium but I’m never sure which type to take. Which one do you use?The consultant I saw recommend I use a flutter valve device .... are these helpful? I think I need to do some research to find a different consultant as, although very nice, I don’t think he specialises in this. I may also speak to my GP about an ENT referral. Is nasal guard the same as First Defence nasal spray? Thanks for your help.

Izb1
Izb1 in reply to PoodleMum

Hi, I use magnesium sulphate 350mg, when I looked this up it was recommended for asthma and lung problems, but check it out first or ask in Holland and Barratt. I buy mine from Amazon as its cheaper. I have an acapello device that I got from the respiratory nurse and it does help to clear your lungs, as does Mucodyne that I got from my gp. Its all trial and error, what works for one doesnt always work for another. I use nasal guard as I find it keep out the germs when travelling around on buses and trains, most kids have coughs and colds and I just cant afford to catch them. My consultant referred me to ent, but Im sure your gp can too. Keep us updated x ps make sure you get rescue pack of antibiotics and steroids for 14 days from your doctor, you will need these if you feel suddenly unwell at the weekend or at night when you cant get to the doctors x

Hidden
Hidden

Told you there were a lot of us, aren't they all marvellous. :-)

PoodleMum
PoodleMum in reply to Hidden

Absolutely! I’m learning quickly .... and now don’t feel so alone with this.

I am an 85 year old and I was diagnosed with Bronch ten years ago after coughing up quite a bit of blood. A bronchcoscopy gave the diagnosis and the physio told me hw to do breathing exercises which i do religiously every day and fill three or more tissues. Often feel unwell but it usually passes, not much energy, just about manage with help from husband. Had a few infections, told I have pseudonomas, but only med is a rescue pack of .7 days Chest pain is a nuisance, try to keep off painkillers if I can. We are all different and it takes a time to get to know the best way to cope.

GOod luck. Love Iris x

PoodleMum
PoodleMum in reply to Lyd12

Thank you Lyd12, I appreciate your reply, I have a lot to learn but it’s very helpful to have people to turn to now who can help. I’m very glad I found this group.

No it's no fun is it hubby going to pick up from chemist soon its called Mucolyctic.hope you have sorted soon have nice what's left of the weekend

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