A little Bronchiectasis update - British Lung Foun...

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A little Bronchiectasis update

Otto11 profile image

Firstly I want to say a huge thank you to all of you who replied to my post recently looking for advice. You are all amazing & so helpful. Your suggestion & help were all taken on board.

Well I had a phone appointment with my GP as planned after putting in a complaint regarding not being able to access antibiotics for 5 days whilst waiting on the results of a PCR test then once seen by a paramedic at our surgery it was an infection so given 14 days of Amoxicillin. He agreed that there should be something on my notes regarding access to quicker treatment if necessary & has put a note on my records & maybe I could be seen in the car park if this situation occurs again (erm not too sure about that in 4 degrees) He has prescribed Doxycycline too so I can start that immediately I have symptoms. I had looked at my NHS app for results of my sputum test but could only find an AAFB result I asked him why they had tested for TB he had no idea I asked if a culture had been requested he said he didn’t think so! So that was a waste of time apart from knowing I don’t have TB! I touched lightly on seeing a Bronchiectasis specialist but his suggestion was to wait & see what Respiratory consultant says at my next appointment. Well I havnt been seen in 2 years. Not much help there then. I didn’t expect any tbh. Afterwards I rang the nearest hospital with a Bronchiectasis specialist & was lucky enough to speak to someone in a CF clinic where Bronchiectasis patients are seen. She was really helpful & has suggested I contact my current consultant with regards to being seen there & possibly transferred if appropriate. So at least I have some things sorted but it looks like I will need to be the main person to try to arrange an appointment. Thanks again for all your input.


40 Replies

Good for you for being pro active. Take steps to be referred on to the unit you spoke to. CF units are very good at dealing with bronch. Good luck. Btw. I don't think that the amoxyl will be any good. It's about as effective as smarties with the bugs we get. The CF unit will have knowledge of and access to different abs and delivery methods.

Otto11 profile image
Otto11 in reply to Littlepom

Thank you once again. You are right but my GP sits on the fence with everything. But I will try to sort this mess all out. I thought that I could ring respiratory appointments first to see if I am anywhere on the list. I’m not too sure which course I will take yet. I know Amoxicillin is a broad spectrum antibiotic & guess they were covering themselves tbh. I’m not even sure it was/is an infection or a virus. When I had Pneumonia I didn’t realise & then recovered only to find 3 months later I still had it! I didn’t even know that was possible. Anyway thanks again for all your input much appreciated. I feel better already just getting things off my chest (ha ha!) & speaking to someone who really understands all this. 🙏🏻

Littlepom profile image
Littlepom in reply to Otto11

Your GP knows nothing about bronch and I doubt if the con you usually see knows much more. If you have access to a consultant at a cf unit push for it. It is not up to your GP to 'sit on the fence'. It is up to them to act in your best interests. They have a duty of care. I know that it is hard to bang the table but so often with bronch we have to. It is the patient who has the right to insist on the right referral, not the GPs job to block it. The fact that you still had pneumonia 3 mths after treatment is just proof that you weren't treated correctly. With bronch this is dangerous because it leads to further damage.

Take the name of the bronch specialist and unit you contacted to your GP and INSIST on a referral. There is no point in waiting and engaging in pointless conversations with the consultant who has been ineffective and whom you haven't seen for 2 yrs. It is your condition which is deteriorating due to this failure so give them a push.

Damon1864 profile image

Good for you not just leaving things, hopefully now you can get your health issues sorted. Please keep us updated. Have a lovely day and take care 😊 Bernadette and Jack 🐕 xxxxxx

Do you not have a rescue pack at home?

I have just picked one up at the chemist about 30 mins ago. So yes I have one now & GP said he will put it on repeat. Thank you.

I hope you can get this sorted. It's a shame that we have to use so much energy to get anything done. Good luck. xxx

Otto11 profile image
Otto11 in reply to Alberta56

Thanks. I spend so much of my energy sorting out errors by my GP’s practice I’m hoping this should be somewhat more straightforward 🤞 x

U should have "rescue pack" of steroids + 14 days antibiotics so yr able to start asap

Otto11 profile image
Otto11 in reply to Patk1

Thanks. No one has mentioned steroids so far but I have some antibiotics now & they have put them on my repeat too. X

cazzabean profile image
cazzabean in reply to Otto11

I hope you start to get somewhere now because you shouldn't have to work so hard to get the right care

Otto11 profile image
Otto11 in reply to cazzabean

Thanks 🤞 x

cazzabean profile image
cazzabean in reply to Patk1

Yes that's right. Normally a Bronchiectasis patient rescue pack will be steroids(prednisolone) and 14 days of Doxycycline. And in my case some anti sickness meds (cyclizine) because Doxycycline make me very nauseous.

Otto11 profile image
Otto11 in reply to cazzabean

Thanks for that! Nausea I mean. Oh well 🤞I don’t get it. Poor you. My GP gave me a rescue pack of Doxycycline but only 8 tablets. I will have to make a note of all this information. Thank you for your help x

Glad to hear you are beginning to get help. I was referred to the Brompton and that made all the difference. Very important you get sputum tests to identify the bacteria so you get the right treatment. It took letters from the consultant to the GP to get that set up, and even after five years I run into objections from the receptionist when I take my little sample in! Good luck.

Otto11 profile image
Otto11 in reply to Pjmf

Yes I can imagine I will also have problems at my GP’s. But this time they didn’t do a culture test for some reason. I’m glad you are getting the right care. Hopefully I will too. Thank you x

Well done you. Once again it has been highlighted how pro active us bronchs have to be in order to get seen by correct consultants.

Otto11 profile image
Otto11 in reply to Delamere

Yes so it would seem!Thank you x

When I read the answers Littlepom has given you I feel like shouting "Bang On" or "G O A L" and a huge cheer cries out from within me. Keep standing your ground Otto11; we, all of us on this forum, are right behind you!

Otto11 profile image
Otto11 in reply to Greenthorn

That’s so kind of you. 🙏🏻 Thanks it means a lot. You have all been so helpful x

Seen in the car park? What?I'm glad you've found a specialist - is it far to travel.? Yes, I think you have to fight for everything health wise. Feel sorry for the people who can't or have no-one to fight for them

Otto11 profile image
Otto11 in reply to Milandra17

Yes I feel sorry for people that don’t have the means for whatever reason to be proactive in their care. The hospital is 25 miles away but it’s where I currently have my Respiratory care ( but in a different hospital) also my Rheumatologist & Dermatologist are in that trust. I only see Neurologist where I live. I’m under Rheumy there as my local trust failed to diagnose RA years ago then they referred me to their respiratory & dermatology teams. My car knows it’s own way there! Ha ha! X

If they have carried out an AAFB culture this suggests they are looking for Non Tuberculosis mycobacterium which affects some of us with Bronchiectasis. They usually ask you to do three sputum cultures on consecutive days so if they only did one test that may not have shown up. They may also do a different cell culture as well. Thought that may help you understand what that test was most likely looking for but one culture isn’t following protocol. Good luck.

Otto11 profile image
Otto11 in reply to Clareyg

Thanks that’s really helpful to know. Our GP’s don’t do anything right. It was bad before Covid & now significantly worse!

well done.... make sure you get that referral

Otto11 profile image
Otto11 in reply to stones93

I will try. Thank you x

Your response mirrors some of mine- in the end you have to push to get good care - you know your body - get a rescue pack in case! Keep well!

Otto11 profile image
Otto11 in reply to Perrythomas

Thank you. I have a rescue pack of antibiotics now. So that’s a start x

At least you are making progress Otto. I'm on the same journey. Don't know at this point whether it's going to be bronchiectasis yet but after a referral from GP I got a phone appointment with a respiratory doctor who has asked me to do 4 sputum samples (which I just dropped off at the hospital and he had already arranged a blood test to be done on the day I dropped them off. Now got to wait for a CT scan which he is arranging for me. I have already had an x-ray but he said he couldn't determine anything from that. So I feel that at least I'm making some progress.

Otto11 profile image
Otto11 in reply to Biofreak

Thank you. It’s good you have your GP supporting you. I hope all goes ok with your CT. let us know how you get on x

Biofreak profile image
Biofreak in reply to Otto11

Thanks Otto. I have to say though that I don't think my GP would have referred me if I hadn't insisted on it. Her first inclination was to tell me to to just carry on with the Carbocistene but I said that I was happy to continue with it but wanted to have a proper diagnosis as well and I would only get that with a referral and the right investigations. I will let you know how I get on. Best of luck to you too.

Otto11 profile image
Otto11 in reply to Biofreak

Yes you’re right. I havnt asked my GP to refer me as he will say I’m already under Respiratory team. I’m on Carbocistine which they prescribed so maybe I could go down the same route as you. Although my CT report was Bronchiectasis & Consultant says it’s mild. I feel I would be better with the specialist consultant. Thanks for that.Take care x

Biofreak profile image
Biofreak in reply to Otto11

It's a dilemma. I haven't got a diagnosis yet so I don't know what I've got only the opinion of the respiratory doctor I spoke to on the phone appointment based on the symptoms. Only time and tests will tell.

Well done for being so proactive. Many years ago I asked a doctor at my local hospital to refer me to the specialist unit at another trust for my vasculitis. He told me it was my GPs job to refer me, so perhaps will be a waste of time waiting to see your consultant. You need to be on the right antibiotic for the correct time with Bronchiectasis and not getting it right can cause further damage to your lungs. Perhaps you could contact your consultants secretary and ask the question there. You will then have some ammunition to take back to your GP. When you are getting the correct care they will advise your GP on antibiotics etc and take some of the pressure of him. Good luck.

Otto11 profile image
Otto11 in reply to Mooka

Thank you. This my current dilemma. Do I speak to my current Respiratory consultant do I ask GP to get involved or do I try to sort things myself. This is what I’m worried about really not getting the correct care & treatment. Thank you for all your support x

i have copd recent flare up of mucoid pseudomonas aeruginosa on ciprofloxin 1wk course 2x500mg daily..can only take for 1wk otherwise joint flare up beware if start with chest oains or swelling joints.a little exercise goes a long way.take care and stay safe

Otto11 profile image
Otto11 in reply to marra52

Thank you that’s good to know. X

Now days you have to be your own Dr.. Take matters into your own hands. It’s sad it’s that way. Stay on top of things. Best of Luck

Yes you’re right. I don’t have much trust in my GP either as so many mistakes have been made I could write a book! ( not with this just in general) Thanks x

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