Bronchiectasis help needed

[wizard04205]

Hi I have just been told I have got bronchiectasis after having a ct scan at a&e few days ago I have been trying for the last 12 months to get docs to help me find out what was wrong but just went round in circles. Anyway now I have been told I want to get on and find out what help I can get I am having to go private as my doc seems in denial about the report from hospital and just sent me off with two weeks antibiotics but will give me a referral if I find who I want to go private with. I don’t mind travelling to somewhere that specialise with this so I can get the best help as I can as I am still kind of young aswell anyone recommend some good places please and thank you in advance

[Hidden]

First of all, welcome to our group. There are several members who have Bronchiectasis, so there is a wealth of expertise. I think they would all be horrified that you might have to go private. Most large teaching hospitals have consultants who specialise in Bronch. An ordinary lung consultant won't have the knowledge you need. When you find a Bronch specialist, find out if they have a National Health clinic, as you have the right to NHS treatment no matter what your GP thinks or wants. I'm sure some of our expert Bronch patients will be along soon, they might confirm what I say. You will need to be proactive in your own treatment. Take care.

[wizard04205]

Thank you and yes just trying to get as much advise and help as I can with it as last 12 months has 4 chest infections just as I pick myself up it knocks me down again but now I have some answers I can start to get sorted at preventing them and getting back to normal. I am in the Sheffield region so any that are recommended would be a great start for me. Thanks again

[Hidden in reply to wizard04205]

Here's a good place to start. There's a downloadable booklet that you might find helpful too. chss.org.uk/chest-informati...

[zube-UK]

Hi wizard, welcome, sorry you been treated so poorly by your GP, this happens to many of us with bronchiectasis because most GPs have little knowledge of it, you need a specialist Bronchiectasis consultant, usually they are at large teaching hospitals, find one near you and take the name to your GP and insist on a referral, you are entitled to the right treatment, it is different to copd.

Constant coughing and infection is usually caused by specific bacteria, your consultant will find out from a mucus sample which antibiotics will treat it, general antibiotics can be ineffective.

The consultant will also send you to physio therapy where they teach you lung clearing systems, most of us here 'clear' our lungs daily, it's the most important way to stop mucus build up which harbours infection.

I've had bronchiectasis since birth and now find the easiest way to keep my lungs clear is with gadgets, lung flute, RC cornet, acapella etc, don't expect the consultant or even physio to know about some of these, lung clearing knowledge is pitiful but it's something important that we need to do to stop infection taking over, excercise is also important.

Wizard, with the right treatment I'm sure you will manage well. 🙂

[cofdrop-UK]

Hi wizard and a very warm welcome to you. It doesn’t make sense that your GP would refer you to go privately but not within the NHS. You have been diagnosed with bronchiectasis and need a consultant with a special interest in cf/non cf Bronchiectasis. You have had some good advice from your new friends. I have put up a link for you re consultants in Sheffield. Check out the ones who have a special interest in cf/bronchiectasis. Contact them and ask if they are happy for you to be referred as you note they specialise in your condition. When they say yes, go back to your GP and get them to refer.

sth.nhs.uk/services/a-z-of-...

Good luck.

Cx

[wizard04205 in reply to cofdrop-UK]

Yes this just confused me it was like it was going to come out of his pocket so to speak was just given two weeks antibiotics and what felt like fobbed off I am not even sure I need them but I don’t know anything about it to know really just what I have started reading. Thanks for that list I have just had a look but only stats one with it as special interests but googled couple of them and found they state it’s there interests elsewhere.

[cofdrop-UK]

There are 2 with a special interest in cf and they would also be experts in bronchiectasis and 1 with a special interest in TB/bronchiectasis. The bronchiectasis team at my hospital are the cf team.

Cx

[Maximonkey]

Hi Wizard, where are living. I am sure someone on HU will be able to recommend their consultant. Good luck, Maximonkey

[wizard04205 in reply to Maximonkey]

I am in doncaster but guess the nearest place would be Sheffield for a consultant but there again I don’t mind travelling anywhere to get the best help thank you

[golden-retriever]

Seriously, change doctor.

[wizard04205 in reply to golden-retriever]

Yea the one I like and the one that seams to care is away at the moment we was set to do last spirometer test and he said he was going to refer me to chest specialist but ended up at a & e and came out with this diagnosis