Bronchiectasis exacerbation not budging

[Julie14]

Some of you may know i went to hospital earlier in the week with a flare up. Ive finished antibiotics & steroids & the two community nurses who have been visiting daily are concerned I’m not getting better, my sats were pretty bad this morning. Nurse has arranged a different antibiotic & wants to keep me on nebuliser (he said he might of taken me off it today, but infection is not moving) I am so great full for the two nurses keeping check on me as i’m really not feeling to good. Hopefully my new antibiotics will work soon 😢

[Hidden]

Hi Julie. I see that you have asthma and bronchiectasis. The steroids and nebuliser are effective treatments for this. It is the antibiotics which are the key to bronchiectasis exacerbations and unfortunately, GPs, respiratory nurses and many general respiratory consultants do not understand this or actually read the guidelines for bronch. They tend to treat bronch as copd, which it definitely is not. You are nit getting the right treatment for your bronch.As far as oral antibiotics are concerned. 14 days of the right antibiotic in a high enough dose is necessary. A sputum test test can help to identify the bacteria and the ab needed but they are notoriously unreliable.

It may be that you need 14 days IV antibiotic to really knock it on the head.

You really need a bronchiectasis specialist consultant as all who have been treating you so far are flailing about and failing to treat the bronch effectively.

You really need to tackle your GP about this as their ineffective treatment is a failure of their duty of care towards you.

Bronch specialists are usually at big teaching hospitals. Find one, take the bame to your GP and insist on a referral. Don't take no for an answer.

[Julie14 in reply to Hidden]

I was sent home from A & E with only 5 tablets (antibiotics) & 30 steroids (6 per day) they finished so now only have a neb. However the nurse has taken my sputum today & arranged for more antibiotics & steroids, hubby has gone to chemist now

[Hidden in reply to Julie14]

I just hope that they have prescribed you 14 days of abs. Anything less is useless fo bronch. They only have to read the guidelines. Your asthma makes your situation more complex. It was disgraceful for the hospital to give you only 5 antibiotic tablets. As I said before, bronch is a very complex condition to treat and you really do need to get under the care of an experienced bronch consultant. There are several members on this forum who took my advice on this and their treatment and quality of life were transformed when they got to the right person.

[Patf1 in reply to Hidden]

I am one of those that you have helped Littlepom. Without your kind and very wise advice I don't know where I would be now. Two of my GP's have thanked me for helping them to understand bronch and particularly the 5 day culture of sputum samples (and they weren't being sarcastic!). I am now under the tender care of a brilliant specialist at the QE in Birmingham and take Azithromycin 3 times a week and seldom have an exacerbation. I recently had my lung function tests at the the QE and they are much improved from 2019. Thank you again Littlepom

[Hidden in reply to Patf1]

That is fantastic to know Patf1. It just proves that the right treatment can improve our lives.I think that you have my very nice and clever consultant. Many don’t realise how much GPs struggle with our complex condition. When we do some of the work for them and find a really good bronch specialist who decides on treatment and advises them they really appreciate it.Now you have joined me here as one of the bronchs fighting to get the knowledge and best treatment to others!

Do have a Merry Christmas and onwards and upwards in 2022.x

[Patf1 in reply to Hidden]

Best wishes to you too Littlepom. Merry Christmas!

[Phill1 in reply to Patf1]

Seems like we may be under the same Consultant at The QE.. not sure we can mention names.. but to know that there is a Respiratory Team that you can phone at any time ( in the week) .. and a Consultant that is accessible for advice is a godsend ..( & so is Littlepoms advice 😁) …

[Patf1 in reply to Phill1]

Possibly - she is very good! I do have the same consultant as Littlepom and the team around her are excellent. I believe that she co wrote the Nice guidance for treatment of bronch. I totally agree about Littlepom's advice! Merry Christmas Phill1

[Phill1 in reply to Patf1]

My consultant is a he.. Early days for me.. but feel he is on the ball….. 🤞

[Patf1 in reply to Phill1]

They do seem to have a good ethos in the respiratory dept. so I am sure that you are in safe hands.

[Hidden in reply to Phill1]

Hi Phill1. All of the respiratory consultants at the QE are hot on bronchiectasis. This ethos was set up by Prof Rob Stockley in the late 1970s at The General Hospital. He was the first to research into aspects of bronch, such as the role of neutraphils which have long been ignored and only now are drugs being trialled.He also educated his patients in their condition. Many of those who joined his team in the early days and were trained by him are still part of the team at the QE, including the lab technitians,physiologists who do our tests, and even my consultant.

It is because of his persistence and interest in us neglected bronchs that there are now several excellent centres around the country and a growing number of specialist consultants in this country and centres in other countries.

In 1986 he went to a conference in Las Vegas and taught America that bronch is a condition on its own and not just ‘cystic lungs’ which they had tried to tell me when I lived there in 1981.

He no longer treats patients but is involved in research at Bham uni. An amazing man, it is a pity that he has never had proper recognition. The lady who was a PhD student with him when I first went to his clinic, did, however, go on to become the chief advisor to the government and is now a Dame.

[Phill1 in reply to Hidden]

Thanks Littlepom.. That is so good to hear.. thanks so muchAnd being a retired Biomedical Scientist .. hematology.. am interested in what role neutrophils do play in bronchiectasis?.. Is there a paper to be read?

[Hidden in reply to Phill1]

I am sure that there must be because there are ongoing trials of a drug. I'm afraid that I am not very knowlegable as to who is doing them but I am sure that you can find them. As far as I understand it the neutraphils rush to any seat of infection in the lungs in bronch. This increases inflammation which further damages the lungs, leading to more infection. Therefore contributing to the cycle of destruction. I am sure that as a scientist you will be able to discover and explain more. I asked my consultant if QE wd be taking part in these trials and she told me that she was too busy to oversee them.

[Phill1 in reply to Hidden]

Thanks Littlepom for replying.. have looked at a few papers on the internet.. all interesting.. think I’ve just got the basic jist of neutrophil inflammation.. but all very complicated.. ...been retired too long! Hope there is some success with new treatments out there being trialled.. 🤞

[Hidden]

I don't think that I made myself clear. Steroids and nebulisers are effective treatments for asthma but not for bronchiectasis which needs aggressive antibiotic treatment to treat the bacteria which are giving you the infections ( bronch exacerbations)

[Patsy164]

Hi Julie sorry to hear how unwell you are especially at this time of year. It’s rotten when you are feeling that unwell. Fingers crossed the new antibiotics start helping soon. Glad you have your nurses popping in to see you.Take care x

[sassy59]

Hi Julie, please read Littlepom’s post again. She knows what she’s talking about as has lived with bronch for many years. You do need a specialist consultant and proper treatment. Hoping you get the right help very soon. Xxx💜

[Damon1864 Volunteer]

So sorry to hear you aren't feeling any better, let's hope these new antibiotics do the trick. Please keep us updated and you get plenty of rest. Thinking of you, have a lovely day and take care 😊 Bernadette and Jack 🐕 xxxxxx ❤️

[Patk1]

As Littlepom says 14days a/b r a must for every infection.ru doing lung clearance at least twice a day x

[watergazer]

Good luck with the new antibiotics julie14. Thank goodness the nurses are there for you x

[Alberta56]

You have been left in a state. This shouldn't happen to anyone. i do hope that you get proper treatment soon ad start to get better. Thinking of you. xxxx

[Lutontown]

You must have the right AB for the bug that has taken up residence in your lungs. It may well need a course of Intravenous AB to sort it out and evict it. To find the right AB, you must have a sputum test carried out. (Do you have a stock of sputum pots?) Problem is this may take a week for the hospital to come back with the answer. I believe a bug that is there for long periods can damage your lungs still further.

[Hidden]

I’m in the Brompton for an exacerbation that hasn’t budged. I’ve had 2wks orals & 2wks IVs but no better so here I am. If I’d relied on my local hospital to treat this, I don’t know what would happen. If you haven’t got covid they’re not interested.

I’m just telling you this so you can see you’re getting comparatively poor treatment. Someone needs to shift their a*** and find out what bacteria is growing, and treat it robustly! Do you live within striking distance of a specialist hospital? For the future you should try & get referred to one. Your gp can refer you x

[Hidden in reply to Hidden]

Hi Hanne62, I’m sorry that you are struggling with a stubborn bug boggart. I do hope that the Brompton can get you back to yourself in time for Christmas, or at least on the way! Thinking about you. XX

[Hidden in reply to Hidden]

Thanks LP! They refuse to be drawn on a Christmas discharge yet, but I’m determined. The care here is fantastic, and they’re so on the ball, but I don’t want to be gazing out at the Fulham Rd waiting for Santa, I want to be in my own eaves bedroom 😊

[skischool in reply to Hidden]

Can i visit you Hanne,not that i have an ulterior motive being a Chelsea fan Lol.Hope you get home soon.Love Ski's and Scruff's x

😂😻x

[Hidden in reply to skischool]

Chelsea? Nooo! I only like Chelsea when they lose. But, dammit, they keep winning, blast them! 😉

[skischool in reply to Hidden]

Just a hop and a skip down Fulham road if you are still in the Brompton,hence the reference to Chelsea Fc.x

[teenieleek in reply to Hidden]

Hi, that’s grim for you. Hope the (obviously excellent) treatment starts to have an effect soon and you get home in time for Santa.

[Hidden in reply to teenieleek]

Aww, thanks teenie! Yes my little granddaughter is coming to stay Christmas Eve & I’m longing to see her face when she opens her presents.

[Hidden]

So, Julie, how are you today? Any better on the new antibiotics? I’m glad the two nurses are keeping check. It would be lovely to hear of an improvement before Christmas 🤞x

[Ergendl]

Hope you are starting to feel a little better with the nebs and abs