Are Bronchiectasis & Bronchiectsis different conditions or just bad spelling?

[Katymac]

Please; I would appreciate any help

Katy - Wiki recognises the first spelling but not the second. See here. Seems to be 3 different types with varying degrees of severity. Hope DH isn't feeling too rough with it all, and that DD has perked up a bit. It must be bloody hard for both of you.

Bronchiectasis is the correct spelling for the chest condition which causes a cough productive of sputum / phlegm.
HTH

Thanks

Not doing well tbh

Sorry to hear he's not doing too well. I have bronchiectasis, diagnosed five years ago when I was 24. I know your DH is already being treated in a specialist centre, so that's a positive thing. Mine is treated with daily antibiotics and other medications to keep the sputum thin and easier to cough up, plus daily physio. I also have IVs as needed. For me the diagnosis was a real step forward as it means I get the treatment I need much quicker than before. I just send in a sputum sample to either the hospital or the GP whenever I think I'm not doing too well, and I can get put on hte right combination of antibiotics as soon as possible.

Hope things start looking up soon.

Oxcat - do you mind if I ask some questions?

My mum has this too, I can ask her some questions if you want info, although may be a bit slow to get back to you as she is back at her house now.

Aww thanks

DH was having between 10 & 12 chest infections a year & after 2 weeks of AB this dropped to about 6 but the infections are much worse

Is this number of infections normal?

I understand he won't ever get better from it - but what does that really mean?

Mum was hospitalised 3 times last year with chest infections, but had another half dozen or so more that were treated at home.

She got some info from the British Lung Foundation, they were helpful and here is the info page on their site.

She is now on permanent low dose antibiotics, and has some physio too. She also has to send sputum off when she is unwell, and as soon as she gets a cold they are far more proactove with treatment now, as she always got a chest infection after.

hth

Hi Katymac -

I have had 27 hospitalisations for chest infections in the last 8 years, but only 5 of these have been since diagnosis and starting appropriate treatment, so roughly one a year, plus 3-4 other chest infections that were treated at home.

Like Manky's mum, I'm on permanent low dose antibiotics, adn this definitely helps, although it does mean that my infections are now resistant to some antibiotics. This isn't a problem - if I'm well enough, they wait for the results of the sputum culture to come back to ensure the antibiotics will be the right ones, and if I'm not well enough to wait, they go straight in with the big guns until they know better what they're dealing with.

I take it that Papworth have checked all his antibody levels? I turned out to have a condition which means that I don't make antibodies to certain types of bacteria, and these are the ones that commonly cause chest infections. I started an intravenous treatment of immunoglobulins to replace the antibodies that I don't produce, and that has certainly helped.

Please feel free to ask any questions. xx

Should have said - it is true that the bronchiectasis will never go away, as it is permanent lung damage. However, my life is now transformed from how it was before diagnosis. I still get poorly, and I accept that every once in a while I will still get an infection that requires in-patient treatment. This is a long way away from how I was before diagnosis though, when I was always bouncing in and out and could scarecely walk up the stairs even when well.

You see this doesn't make sense

He has only been hospitalised once (this time) & he isn't terribly ill

He produces no anti-bodies for 2 types of influenza (7 & 12 I think)

He was on Doxycyclin and is now on Trimethoprim

Apparently his symptoms don't make sense

But haven't I read in the other thread that he has been diagnosed with MAC? That would surely explain some of his symptoms, wouldn't it, even if the bronchiectasis isn't advanced?

I think you can end up with the lung damage that causes bronchiectasis from just a single bad infection, so it certainly doesn't need to be as dramatic as my case. I also have asthma, and this is always stirred up by an infection so most of my hospitalisations have really been to treat the asthma, with the infection as a contributing factor.

I think these days CT scans are so advanced that bronchiectasis is easier to diagnose at an earlier stage. Having said that, I'm afraid I don't think you get many false positives - the doctors will be pretty sure he has it if they have given him the diagnosis.

Is he on doxycyclin and now trimethoprim long-term? I take azithromycin.

I'm afraid I don't know how the influenza antibody results fit it. Sorry.

I wondered if the antibodies were like your immunogolbins

Yes he was on the Doxy from July to Feb then on the new one since Feb

They have diagnosed the Mycobactium Avium but say his symptoms don't 'fit' that

And that he only has a 'touch of' bronchiectasis (dead scientific that)

He had a very severe asthma attack infection in 93 which we were told damaged his lungs which I am guessing is now being called bronchiectasis

They say he confuses them

I don't know about influenza as it is a virus, and I'm not sure how antibodies work in relation to that. My problem is with antibodies to bacteria (including Haemophilus influenzae, which is actually a kind of bacteria despite its name). Presumably he is at greater risk of infections because of these lower antibodies? You could ask about immunoglobulin infusions - they are veyr expensive and also carry not insignificant risks as the antibodies are pooled from donated blood, so there are all the risks of receiving blood products, even through it is apparently now very safe. Might be worth asking about though?

I imagine that bad asthma attack did cause the damage. I think, although it probably doesn't feel like it at the moment, the bronchiectasis diagnosis at such an early stage is a good thing, as he will now be able to access the treatment he needs quickly and more easily. Has he seen a physio yet to be taught how to keep his chest clear? You need to keep it clear as sputum that sits around in a damaged lungs is just waiting to get infected, and this will quickly become a vicious cycle as more infections cause more damage.

What are his symptoms?

"My problem is with antibodies to bacteria (including Haemophilus influenzae, which is actually a kind of bacteria despite its name)"

aha that makes sense

That is the one DH has a problem with

I'll have a think about immunoglobulin infusions

TBH I don't think he understands about the physio - he finds the 'huffing' very hard

Recurrent chest infections really & exhaustion & night sweats & loss of appetite (occasionally)

Well it sounds as though we might have the same then. It is called a specific antibody deficiency - a type of primary immunodeficiency. If you go to the messageboard of the Immunodeficiency Association, there are people there who might have more ideas.

As I said, the infusions are very expensive and do carry risks so they are not frequently prescribed, particularly for our kind of immunodeficiency which is generally not particularly problematic, apart from for a few individuals.

With physio, the huffing is hard, particularly when you're not well at the time. There are various 'devices' to make physio easier. Again, the physio can talk about these. I use the 'flutter' device, but there is also a thing called the 'a capella' or the pep. There is information on various cystic fibrosis websites (the condition is quite similar) if you google.

The symptoms you describe sound very much like a chronic infection, but I suppose the problem is that perhaps up til now they haven't worked out what. It could well be the MAC, but there could also be something else hiding behind that. Has he had a bronchoscopy to find out if there are any other bugs lurking down there?

It does, doesn't it. I will have a look there

The transfusions seem complicated

We have been recommended the flutter by my Godmum who used to work for the British Lung Foundation

No bronchoscopy yet - that sounds like a good thing to happen next

A bronchoscopy is not the most pleasant thing in the world, but they can give the lungs a good washout, and then give anything they suck out the chance to breed to find out if there are any hidden bugs.

The flutter is a little expensive to buy yourself (I think about £30), but the physio at the hospital should be able to give him one.

The immunodeficiency association adn the messageboard is free to join and full of helpful people, so would be well worth a look.

Good luck and keep in touch.

xx

Hi KM. I'm a physio, I work with bronchiectasis patients.Second everything oxcat has said. High resolution CT scan will give the diagnosis of bronchiectasis which is just a term for specific changes in the lung or lungs which give rise to a set of symptoms. It's not progressive and as oxcat says with the right management you can be relatively trouble free. It does sound though as if with your dh there are other things co existing as well?

God I'm a really slow typer . The bad asthma type episode could have caused the lung damage. It can remain asymptomatic for a long time and then having a nasty infection flares things up.

Thank you so much

I have much more information to talk to them about now

Thanks Northender

DO you know if DH can just ask for the flutter o if the physio needs to suggest it?

I wish the Dr's/physios would speak to me as well as him - he remembers nothing

Procedures re the flutter vary in different areas. We loan them for people to trial but if they want one they have to buy it themselves . PEP valves are much cheaper so we give them out! Like I say that varies though. If you can get to try different devices then do because it really is horses for courses. What's good for one just doesn't work for another.

Try contacting the physio. I would hope that they would be approachable and have time to sit down and explain things to you. I know they're busy but his management is not going to be optimal unless you're on board and well informed imo.

Thanks for that - I have no problem buying it, if as you say it's the right thing for him.

I feel much calmer since I have spoken to you ladies - the nurses were talking about 'improving his quality of life' which I thought very negative

How are things km?