So I’m back in hospital again but my Cons has made me realised that every hosp has different requirements regarding discharge (love her - she’s fab and really on the ball about asthma and all it’s quirks) . I have been admitted ‘regularly’ in 3 local hosps since 2015 when I became severe/brittle. (I’m on maintenance steroids, have an emergency home neb and am currently waiting to start benralizumab hence my current repeat admissions - I was last discharged 3 weeks ago today and was admitted 4 days ago)
At my first hosp they seemed to discharge when your PF was at mid-upper yellow zone (basically regardless of how you felt) and regardless of when your last neb was. They did on occasion discharge me when I maintained at 50% too.
My second usually tried to make you go 24hrs no neb maintaining upper yellow/green zone and feeling ok to be at home.
My current really want 24hrs no neb and in green the majority of the time, as well as feeling good to go home. (Although here I do get the occasional ‘cover’ cons who discharges if the patient feels ok regardless of when last neb was)
I scuppered my first attempt to escape this trip cause in the effort to meet their PF/no neb requirements I had a lot of ventolin (24 puffs in 24hrs 😅). My first hosp wouldn’t of cared, and my 2nd might have ‘hummmed’ then sent me home. This one has gone from talking of discharge yesterday to saying maybe Monday - they want me on regular ventolin and see how I manage. (I also had my FeNO rise from day 2 to day 3 so another thing they’re gonna check).
I am also useless at identifying symptoms until at 40-50% PF atm so my docs and I struggle with that cause although they *know* my airways are still inflamed I feel absolutely fine and don’t realise anything but occasionally feeling a little ‘twitchy’ 😅
Personally I feel that the discrepancy in hospital treatment for asthmatics (from admission to discharge) really does need to be looked at somehow. Especially for/by those repeat offenders (like me 😳😅) who know what they should be expecting/need but don’t get it for whatever reason.
So what’s your local hospital requirements for discharge? Anyone else had times they know they’ve been released too early, or conversely felt they were admitted too long? Does anyone else struggle with symptoms identification?
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Sorry your on hospital. I know it sucks bot hang in there. I find my hospital goes by which consultant is on rotation. But generally i have to have my pf maintain above 350 (my best is 550) and of all additional meds other than pred for at least 24 hours before they will consider discharge.
Thanks. They’re hoping they can come up with a plan to stop me yo-yoing as I can’t get Ben until May at earliest really. Talk of either a long term IV steroid injection, or seeing if can restart mepo short term until then. One of the other reasons why they quoted Monday cause hopefully will hear back from me spec hosp by then (they are also gonna tell them that they’re refusing to pred wean me as requested and are probs gonna up my maintenance dose from 10 to 25/30 until Ben or another plan happens 😅)
Interesting... does that mean maintaining sans ventolin too then? This is my first hosp who have looked at how much salb I take before discharge (and before admission 🙈)
Ta! I’m hoping Monday will be the day! As I said I currently feel fine, just occasionally twitchy (yesterday vent useage down to 14 (8 puffs prescribed 6 puffs PRN) which is an improvement too!)
Yes, although while in hosp I tend to get my ventolin through a neb which I don't have at home so I have to be off it and maintaining before I get to go home.
Im not quite the same as you as I will recognise that I am having symptoms but will not necessarily recognise that the symptoms are getting worse or that I need to seek treatment for it. Hopefully you will get a plan together with your consultant that works for you.
I have just started on Xolair, only had one dose so far. I'm really hoping it helps because otherwise I'm out of options as far as treatments go.
Ah... the ‘spot issues but don’t need more treatment’ asthmatic 😉😅. I remember being like that - assuming it would (or had) self-resolved then ending up in resus 😅. Tbh I think most severe asthmatics are like that - the age old ‘am I bad enough to warrant further treatment?’ question. Now I just don’t notice anything til it’s bad (and only hosp when I deem it ‘really’ bad 😅). Think my con/an is going to come up with an ‘acceptable’ amount of slab for me to use at home - but interesting that you have to be 60% with no ventolin!
Good luck with the xolair! I really do hope it works well for you! Guessing you’re atopic rather than eosinophilic if you’re not eligible for the others 😅. If it helps I know people who say it’s their wonder drug so 🤞🏻🤞🏻🤞🏻(it didn’t really work for me but I have both and think my eosin is worse than my atopic 🙈)
its not that I'm not eligible for the other treatments more that our hospital isn't able to provide them at the moment so it would be difficult for me to access them easily. I think I also have a bit of both but trying xolair first rather than having to travel for over an 1hr and a half every time I needed to go for treatment as would need to go to our university hospital which would be a pain.
just keeping fingers crossed atm as its still to early to tell if it is going to work.
Hopefully you will be able to get home soon, I was stuck in for a week a fortnight ago and it drove me mad so hoping you can get home. I don't know about you but I always feel more relaxed in my own home
Ah... for me I always had to travel for any biological. 1.5hrs each way initially into London, but now I’m 45+ mins from my local (by car - 1.5hrs by public transport), and to get to my specialist I’m looking at 3 hours each way by train. If I could drive it would be just over 2hrs each way. It’s a pain, but I’m hoping it’ll be worth it if I can get symptoms free again! (Eventually they’ll outreach to my local so won’t have to keep going to spec hosp)
I had 3 days in last trip, and this trips gonna be at least 6 days. My longest unplanned trip was 10. Luckily I can escape the ward during the day so I’m not getting too stir crazy 😅. Looking forwards to my own bed, and my take out meal I always get after admission 😂😅
Me, too, so sorry to hear that you have ended up in there again, but also glad to hear you have a consultant who you can really get on with! I have just one hospital admission experience, so I can’t really say anything you don’t know far more about ( I was discharged when able to be in green AND 24 hours new free. They kept me in an additional 12 hours as my improvement was slower than anticipated, but I did get out and never ended up in that situation, quite, again.) So, hang in there, and hope you get to that biological soon! And that it works well for you.
Thanks. I’m glad you’ve only ever needed the 1 trip and that they kept a good eye on you!
This is the best hosp Cons I think I’ve ever had (local or spec tho I’ve only met my new tertiary once so not fair to judge him but he also seems really nice 😅). Really gets that everyone presents differently, not everyone wheezes/feels symptoms/has a reliable PF etc etc. She adjusts to the patient not the other way round (and wants patient input to decisions too!!!)! If I ever move again I’m bringing her with me (or if she moves I’m tempted to follow her like a wheezy stalker 😂).
My main irritation atm is that I pre-paid my (return) train ticket to my parents house for this weekend and it’s non-refundable (that and the fact I’m gonna be off work til discharge plus at least 1 day more) 😂.
My bays not too bad and relatively quiet atm but yet again I’m the youngest on the entire ward by 20-30 years 🙈
I am very fine at present. Since new year things have been good, but I still dread getting colds etc. By the way, I am so glad, and it has helped me lots, to hear others say they don’t recognise their own symptoms. That is so me! And hearing about this from others has helped my confidence loads, so I can head to my next review shortly and be very clear about that. The usual ‘if you need ventolin/salbutamol more than 3 times per week you are not well enough controlled’ does not work for me, as even considering the idea of taking ventolin when others can hear I need it does not occur to me naturally. I have got better at it, with an effort. But even our daughter has had to point me in that direction more than once, while I stood around breathing heavily and quite oblivious that I was. So I get irritated when I get asked, but now I can spell that situation out more clearly. So thank you to you, and others!
Hello fellow non- recogniser! 😂 I’m glad you’re well atm!!! (I think we all dread colds so dw 😉)
My old spec had to come up with a different system for me... usually they tell people to not over rely on PF focus more on symptoms... with me they wanted me to PF at least 4x a day and whenever I felt mildly symptomatic in the hopes of catching things sooner 😅. It’s why I ended up overdoing vent thurs cause every til I felt off (not twitchy but not right) I PF then treated the PF 😅🙈. And people who know me (friends/fam/docs) get worried when I admit to feeling symptoms 😳🙈.
I hope they work out a system for you. If they don’t believe you about not recognising issues ask to do a histamine/mannitol challenge whilst ranking breathlessness to a scale - it’s how they realised my issue😅 I went from 90-100% of my lung function to 60% and breathlessness scale changed from 0 to 0.5 (maybe 1 possible - couldn’t make up my mind 😅) out of their 10 point scale 😅. We realised it’s cause I lived/functioned at 50% lung function for basically 1-2 years - really skewered by recognition skills 😂
Good luck with the next appt and explaining the situation
Oh, generally they do believe me! At least the surgery does. The main believer has now retired, sadly, but perhaps because I am old, they really did get quite concerned when I ended up in hospital. It is more me having to find ways to take myself seriously. I have now ‘realised’ I need to follow my cough........duh (to myself) that if I start to cough there may well be an issue. But I have coughed all my life so I have always tended to dismiss it. Also irritations in my upper throat, those I notice. And now can recognise that as a symptom of general inflammation. And peakflow. If properly bad, my peakflow shows all the right signals. And also visualising myself snorkelling - could I do that ‘today?’ as it were? (Obviously having a sea to get into would help). That can help me recognise that my breathing is challenged. It has been quite hard work to try to find signals that work for me.
I have once had that ‘you don’t need anything’ response,........and then ended up with a part silent chest..........That was last Christmas /New Year. Oooops!
Glad you’re learning to read yourself and finding warning signs. One of mine is my cough as I scale it 😅 - 1 -no cough/no issue, 2 loud deep cough/mild issue, 3 pathetic high short cough/moderate-severe issue, 4 no cough/very bad issue 😂
My hospital goes by O2 sats, they have to be 95% for 2days with no nebs, however this figure is personalised if needed so could be lower if normal for you & include nebs if normally maintained on them, but not days required
A very interesting requirement, esp as sats don’t have to drop for you to be having a really bad asthma attack (esp if you compensate well - ie even with 30% PF my sats can be 98%) unless this is a generic across the board thing.
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