Escaping!

[floating_]

Joke, not actually escaping, but hopefully going home in the next few days with an urgent follow up at Bart's as an outpatient (not inpatient, at least that's what I've understood). They're likely gonna send me home with a nebuliser though, so just wondering if there's anything I should be asking of them to make sure things are OK/safe? Was averaging 1 neb a day, but recently have been back up to 3 a day. Usually salbutamol, occasionally atrovent.

[twinkly29]

You definitely need guidelines from them as to how many is safe each day, exactly what would indicate using one and at what point you seek further help. Included in that I'd want specific advice as to how far apart nebs should be and that yes you should seek further help if the gap is less than that advice.

As you know, asthmatics don't usually have nebs at home because it can mask things being at a stage that isn't safe to be at home....but I would be extra concerned about that in your situation as it's very complicated so would want explicit advice.

[floating_ in reply to twinkly29]

Yeah, that's probably why my consultant keeps changing his mind in terms of sending me home with a nebuliser. Currently though it seems like this is currently the only way forward? I assume it'd be low threshold for me going to A&E still though (but I hope that A&E don't use the nebuliser against me ie. tell me to use nebs too often or whatever)

Will make a note of those questions though, when/if this actually happens!

They've gotten in contact with my allergist in St. Thomas' about the mast cell side of things and she says my mast cells are likely triggering my asthma causing these repeated severe asthma attacks. But how do we stop that? Who knows!

[Poobah in reply to floating_]

Hi Floating. I was fortunate to take part as a volunteer for research study into Azithromycin. Steroids have a limited effect on my asthma, in that they work up to a certain level and beyond that they don't have a positive effect but I suffer from horrible side effects.

The research doctor had quite a chat with me about mast and MAIT cells and I also did some additional reading as I wanted to get my head around it all. I really only scratched the surface as it all gets too medical and scientific. Anyway, in a layman's nutshell, both mast and MAIT cells play a role in lung health and Azithromycin can have an effective role in the treatment of both kind of cells which can achieve more than steroids in some asthmatics. And now it's known that steroids can deplete the number of MAIT cells, and these cells play a role in fighting infections.

It may be worth having a chat with your consultant to see if your type of asthma would benefit from, say a 4 month course of Azithromycin. They'll know from tests whether this would be a possible treatment.

[floating_ in reply to Poobah]

That's actually quite interesting, I'll ask this doctor that I'm seeing relatively soon about the nebuliser stuff about it! What does Azithromycin help you with?

[Poobah in reply to floating_]

It reduces the inflammation and I've found that it's long lasting. So even though it's an antibiotic I don't have to have a chest infection, as it works as an anti-inflammatory. But I must admit that I don't know enough about various asthma phenotypes and how they fare with Azithromycin. This article regarding research suggests it works for both eosinophilic and non-eosinophilic asthma. openres.ersjournals.com/con...

[floating_]

So was finally discharged today (hiccup yesterday...). The doctor said any thing over 3 nebs I need to come back in (not my normal inpatient consultant). When I asked about neb frequency he didn't seem to have an answer, but I figure if I'm back to backing then I'll just have to get one of my parent's to phone 999 anyway? Reasons to use one would be unable to speak, inhaler not giving enough/sustained relief, etc. (much the same reasons I'd ask for one in hospital).

Bit unsure still I guess and perhaps I should've been more persistent with my questions but I was really getting sick of being in hospital (3 week long stint this one). Didn't realise how ill I was when the ambulance came to get me though, I was cyanotic apparently! Quite scary thinking about it. 😬

See this doctor again in about 4 to 6 weeks or earlier if needed. Not sure what this means for my other local outpatient consultant? Lol.

[floating_ in reply to floating_]

Update to the update, ended up coming back in at midnight, feel quite disappointed in myself tbh. Saw one of the respiratory doctors from my usual ward and she said I'd be in a while. Saw some other doctor and he wanted to send me home. 😳 now he's said 24hr observations...

Tbh I want to go home but equally I can't keep making my mum bring me in when I'm like this it's unfair on her. I don't know what to do.