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So many bugs!

Ugh so I’d just managed to clear one virus (+ pleurisy) that I was in with 2.5 weeks ago and already seem to have picked up another one 🙄

That combined with the cold, damp weather, our neighbours having fireworks earlier in the week and Diwali celebrations on tonight mean I have one unhappy chest 😫

Set up in bed using salbutamol regularly and although my peak flow keeps dipping into red I’m not at admission yet as I can get it back into yellow with inhalers.

Just so frustrating as I just restarted my course a few days ago and have my xolair review on Monday 😫 desperate not to end up in before then as it has made a massive difference overall and a 4th admission during the trial will make it seem less helpful! (Even though that’s down from 6 from any other 4 month period in the year!!)

Rant over 😂

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Nooo 😫

Stay well and stay out of hospital if you can (tho of course head in when you need too 😞)

They should consider your opinion about the xolair - when I was on it they were happy cause I said I was better then I was previously (despite needing hydrocortisone for 2-4 days about week 3/4 after each injection). Mine only stopped with the hypersensitive reaction so 🤞🏻 they approach you the same way!

Stay positive and stay out if you can... hopefully once the fireworks are out of the way things will start to calm down a little for you and you’ll be able to get over the cold without needing admission. Thinking of you x

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That’s good to hear! I did most of the “assessment” with the asthma nurse last week so hopefully they’ll just use the numbers from that 😂 but I am prepared with many graphs showing a benefit just in case haha

I’m determined to at least get in to placement tomorrow as I have a mini test for the specialty I’ve been on this week - and having finally gotten them to stop saying it’s the stress of the course causing everything I don’t want to start missing assessments and have them start that up again 😂 (I know stress doesn’t help asthma but I have far more important triggers they can treat before they get onto that!)

More than anything this has made me

realise just how bad my daily symptoms were! I still get fairly regular night symptoms but they’re not awful and often don’t bother with inhaler. But I’m already on my third wake up of the good old witching hours and they’re bad enough to make me bother to sit up and find my spacer etc - it’s amazing what your body can get used to when it happens regularly!

How are you doing?

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Without wanting to jinx it, I’m good thanks 🤫🤫🤫

I have a job (🎉🥳), so just need to find a place to live so I can start work 😅. Reduced my pred to 20 yesterday, but feeling it today... had hoped that cause I was A-OK on the other drops that’s I’d successfully get to 10 no problemo but 😬😒. Been asymptomatic (mostly) since we last chatted so feeling really positive about the mepo, however not sure if I’ll be able to cope with the aches and pains if they don’t let up 🤕😒.

Yes it is amazing how quickly you get used to issues/not issues. I struggle when I drop suddenly, but slow declines are so ignorable and forgettable! When I’m ill, I forget what I’m like when I’m well, when I’m well o forget what I’m like when I’m sick 😅. You can cope with it, then when you get through it you wonder how you did it, til the next time 😂

On xolair the only thing my team seemed to care about is whether or not I felt the benefit... now I’ve switched I wish I hadn’t have put up with the issues I had. They know the biologicals aren’t a cure, so you’re still going to have issues 😒. (But go blind them with your graphs and charts you geek 🤓😝😂)

Argh - I hate it when unis say it’s the stress of the course... I had to fight them all the way up to graduation, then after I graduated I got even worse so... the only ‘stress’ that triggers my asthma acutely is exams and that was controlled by extra pred 😅.

I hope you got to placement ok today (and that your ‘special senses’ rotation is good 😉). Feel better soon x

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Wooooo! On all the good things! Hope the side effects let up! I think a lot of people say they do?

The nurses were big fans of my graphs and got quite excited 😂 they also show a really obvious benefit! (Partly because I know how to pick stats to say what I want 😜)

I think I might actually be going onto aminophylline after all? After checking peak flow. As they’ve just arrived with a machine to put it through! Also the pred is back up to 50 😡

Had a bit of drama on the transfer between hospitals though. They had to blue light me because of my heart rate so we were whizzing round a corner and my trolley detached from the lock 😱😱 so I went flying down the ambulance into the side! Thankfully I just hit the side so only have a sore leg - otherwise I’d probably have a broken foot 😂 I swear I seem to attract clinical incidents!

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Well done on the job Emma woop! (Said that further down but this forum is weird so you maybe haven't seen it). Hope the search for a place to live is going ok.

Came up to this bit to say that but also to say glad it's not just me who forgets what it's like to be bad when I'm not and vice versa. I always convince myself I'm making it up and then also feel like I'll never get back to normal when bad.

Hope the mepo pains settle! Sounds promising though.

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Thank you 😊. About to scroll through the messages that I’ve missed 😜.

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I tried to escape placement to go to bed after early afternoon teaching but the dermatology consultant and registrar heard me wheezing so forced me into a wheelchair and took me round to a&e 😂 oops!

Peak flow sat about 40% after 5 nebs and the air entry isn’t playing ball really and am no longer wheezing - unfortunately I think I’m on the bad side of that rather than improving though I think 😔

We’re going to have another whack at the back to back nebs and hopefully avoid the aminophylline again but we shall see. Thankfully the team on tonight have all seen me quite a few times before!

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Oh no 😫 - glad you had someone to kick you into a&e tho! Tell your lungs to stop making a fuss... you’re in charge boi! Yup sounds like you’re onto the aminophylline- hopefully at the right rate for you!

Not just me that twists my stats then... always use what’s sounds best for you 😝!

Happy you have a familiar team, who knows you too - that always helps!

Ouch 🤕🥴 - at least it was just the leg 😅

Good luck tonight x

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Oh god they’re actually putting my pred up to 60!!! Goodbye sleep 😂 hello eats!

I know they’re such fussy sods! How rude.

I’ve mentioned the aminophylline rates as they were going to start it on the basic rate again 🙄 the junior has gone to ask the consultant (who does thankfully know me so hopefully she’ll ok the higher rate)

It was actually terrifying 😂 I thought we were in an accident for a second! Very sore down my left side now which is the one that got hit 😅 the paramedics were so stressed out afterwards! As they’d been moaning to their company (private contract!) about the locking system on that vehicle playing up for a while! But it hadn’t failed mid journey till now 😂 it would happen to me!

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Urgh - 60 😫! Get some rubbery cheese and crackers in for your midnight snack! And crisps. And cake. And fruit. And... 😂. Party at yours right 🥳😂

Hopefully the cons will get you on the right rate esp if it’s in your notes somewhere!

I can imagine... they’re probs freaked out that it broke on them (cause can they use it now?) and worried about you suing 😅. Faults on the company that didn’t listen to the complaint!

I think we’re of the same ilk... you have the same accident prone-ness (when it’s not your fault)/bad luck as I do 😂. Maybe it’s a side effect of being a severe asthmatic that hasn’t been researched into yet 😂

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Nope I failed the battle 🙄 even though it’s on my most recent discharge letter which should be the most recent thing on the system 🙄🙄🙄🙄

Yep haha! The first thing they said after checking I was ok was “please don’t sue us!” 😂

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😒 for the aminophylline rates 🙄.

😂 for the ambulance crew!

Good luck tonight with the pred munchies and the asthma issues 😏😒

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Ughhh they really need to make their mind up here haha 😂

Said they thought there was an element of dysfunctional breathing because I was taking shallow breaths, had to politely explain that I was very aware I’m breathing like that but my ribs are killing me and I hadn’t had any pain relief for over 6 hours! 😂

But then followed this up with “oh but your sats are still a bit on the low side so we’re not going to reduce any treatment” - surely if the dysfunctional breathing was a big part of this that wouldn’t be the case? 🙄

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Oooh party! Sorry about all the drama ugh and the admission Jess but glad they liked the graphs lol. Maybe I should try that more often. I mean it is basically my job to communicate with medical people with writing/graphs etc...even if I lose all ability to speak round most of them (either cos I can't breathe (A and E) or because I have a resp clinic phobia.

Ugh to the dysfunctional breathing...amazingly enough will probably improve if it's there once asthma does?! I wish they would stop to think through the whole picture sometimes.

Congrats on the job Emma, woop! And also sounds promising re mepo.

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It’s all about the graphs 😜 I’m not too bad breathing wise really it’s just this bloody pain!

After seeing how much I was actually struggling to move/breath with the pain I think they’re now accepting it’s that causing the dysfunctional breathing! Particularly given in my clerking it only appeared in the consultant review which was after the pain started. A&E and the resp reg etc made no mention of it!

They’re finally actually giving me the max dose of painkillers I’m allowed in one go rather than trying the half dose first and it’s already helped my breathing. They’ve also written up something stronger so fingers crossed that’ll calm things down a bit

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Ugh hope that calms things down! Pain is lungs overworking everything presumably? So annoying! And silly bugs setting it all off. How is placement with special senses, apart from lung blips?

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The pain is from the drama in the ambulance transfer - thankfully haven’t bruised badly so probably just muscular and haven’t cracked a rib or anything!

Although they’ve just written me something I can’t have with codeine and the drs have gone to training 😂at least with the higher codeine dose I can lie still without too much pain, but still not really able to cough or move!

“Special senses” is really good so far! I had dermatology this week which I actually found surprisingly interesting! Although probably helped by how lovely everyone was 😁

How are you doing?

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D'oh I did not connect those things but it makes sense! I hope they come back soon and give you something you can have...

Any aliens or weird spooky stuff so far lol? Sounds good, nice people always helps!

I'm in limbo - lungs every day so so but at my appt a couple of weeks ago the asthma nurse agreed the current situation isn't ideal and said she would speak to cons about maybe doing tests to see if anything can be done. Then she discovered that during my admission I managed to get some eosinophils, enough for mepo - which is just weird given I never normally hsve them and had got used to being non-eosinophilic! She was going to speak to cons last week but said to prod her so emailed this week but heard nothing. Now convinced it will all come to nothing (wary based on previous experience, less with this lot than others but still).

My lungs are so bloody weird! You know you're a freak when the tertiary ppl think so lol.

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No spooks yet! But I’ve still got the weirder stuff like eyes to come😱

Yeah definitely not ideal! Crikey, well done on your body making some at last 😂 hopefully they might agree to give the mepo a go - surely if you’ve managed to hit the elusive criteria it’s worth a shot? As you all say - the current situation you’re in is less than ideal. Will keep fingers crossed it comes to something 🤞🤞

Haha I know the feeling 😂 every dr I see seems to have a slightly different idea about all the issues which probably should just tell them I’m complicated!

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Thanks! Yep I am kind of sceptical it would work tbh given the clinical trial results and the fact that I have so many admissions with normal ones. I'm still trying to get the team out of the mindset of thinking it's less bad and won't need hosp if I have normal eos - it's really not in my case! I'd still give it a go if they offer though - worth a try and might help the everyday, you never know! I think my lungs are taking the piss as it's dead on 0.3 - have they read the criteria? Stressing over whether the idiot dr claiming my admission in March was entirely dysfunctional breathing, despite treating me for asthma, will affect anything. Pretty sure I have enough without that ie admissions, but they still use pred as a marker for a severe attack and I often don't get it because it doesn't help me, not because it didn't qualify as a proper attack!

Tbh I would settle for them just doing something and not leaving me to it! I hate the waiting but am very unassertive in this situation.

Oops sorry to ramble when you're in and have been banged about! I hope you have some good snacks and not just rubber cheese lol.

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That seems a really weird mindset to be in given that non-eosinophilic asthma is not exactly a new thing!! Sometimes I still get people going “well you don’t have an eosinophilia” and I reply “well that’s nothing new!”

Hahaha they would pick that number wouldn’t they 😂 yeah might be worth a shot even for the hope it helps with daily stuff - I guess the fact that they’ve found them means you must at least make them some of the time so they could have missed it between admissions previously?

Ramble away! It’s nice to have people to talk to 😂 hospital is boring!

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Yep it's confusing as I know they can hide in the airways, but the mepo trials suggested peripheral but not sputum eosinophilia is the best predictor of response. My theory is I may have a mix and that usually my Fostair is enough to handle that side leaving the rest not so steroid responsive - asthma nurse seemed to think this was reasonable. I wonder if the fact I didn't get any Fostair for ages while in as they had to order it contributed to higher numbers? I did have IV hydro though...

Lol I am supposed to be checking some references on a slide deck- one of my least favourite things.

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Oh really? That’s interesting! And that seems a fairly reasonable conclusion to come to 😁

Hahaha wow that sounds....exciting 😜

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Hehe yes one of the less exciting tasks along with data checking. But cannot be palmed off as you have to be familiar with the area/refs.

I don't hsve much to go on for my theory but it seems plausible lol.

I hope you have a book or tablet or something loaded up for some entertainment!

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Haha yep indeed! The joys of necessary tasks.

Yeah that tends to be what I go with for most of my theories 😂 no evidence really but kinda makes sense!

Got my laptop and can thankfully sneak onto the uni WiFi here 👌

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Wow - that was a lot to catch up on... I feel like I’m late to the party 🥳😅!

Urgh - why do docs tell you you have a dysfunctional breathing pattern when you’re having an attack - well derrr, I can’t breathe so of course my breathing a dodgy 🙄! Glad you pointed out the issue and got the ‘good’ drugs Jess... I hope you’re in less pain now (and in a better breathing situation 😜).

One of the things I’m glad of about my asthma is that I have both eosinophilic and atopic asthma so don’t have the issue of a fight when I’m in (plus I wheeze so 💁‍♀️😂). It must be so annoying and frustrating if you’re fighting with the docs about this each time, combined with not getting the option for a biological - if you hit the level Lysistrata then go for it... maybe it will help calm things down a incy little bit👌😅, or maybe I’ll do nothing but if they approve it, it’s worth a try!

I hate work when it’s what you have to do but have no enjoyment from... I procrastinate for as long as possible then I stress cause it’s near a deadline - one day I’ll just accept it and do it ASAP 😅. I’m dreading having to do my tax/accounts this year 😬😰.

Well if doctor-ing doesn’t work out for you Jess, that approach (makes sense but little-no evidence) is basically osteopathy 😉.

Enjoy your internet surfing/WiFi usage Jess (I’m still upset that my new local doesn’t have free WiFi 🥺😢😂)

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I know! It always seems rather obvious to me - generally I find staff who also have asthma are far more aware! (or the resp physios) and will say "yes you are in the dysfunctional pattern" but that's what we expect at the moment in the acute phase! Its when it sneaks into everyday life that its an issue - which is what the physios have cleared me of multiple times!

Still awaiting good stuff, but its written up regularly so will get it on the next drug round - probably could ask for it now but I'd rather wait and not be stuck waiting when I want to sleep!

I seem to have mysteriously started producing a wheeze now! And I'm getting better at going in before my entire chest goes quiet so they're noticing it more because they can tell the difference between the tops and bases of my lungs.

Haha excellent :P that's my kind of thing! A lot of the areas I'm interested in don't have much of an evidence base at the moment so its a case of going "hmmm might work, lets try!"

Boooooo on the lack of wifi! I'm glad its a uni hospital because otherwise its pretty expensive I think

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Yay (🤨🧐???) for the wheeze! 😂 at least it’s one less thing for them to argue about!

Yup I’d wait too... it’s annoying when your meds are at a different time to rounds... I usually get to sort mine out myself, but only if they’re mine (other than nebs which they’ll put me in charge of when I want one).

I love the ‘lets just try it’ approach - in normally either helps or rules something else out 😂.

Have they adjusted your aminophylline level yet?

Ps meant to say I’m glad you enjoyed dermatology 😉

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That's my logic haha! Finally got them to at least write up some PRN paracetamol so I can have that in between to tide me over.

Exactly! Makes sense to give it a go and if there's one thing this asthma journey has taught me, its that ruling things out is actually just as useful as a positive result!

They took the levels earlier but are actually going to try me off it tonight (to be honest I think I'd have been fine with more back to back nebs and a magic mag bag so I'm up for trying it!). I find even though it doesn't necessarily push my levels up much being on the infusion still tends to help a bit at low rates as I guess its a bit more continuous than whatever my weird metabolism does to the tablets!!

Haha thanks :P I've got the joys of ENT next week so I might be running away from sickly people slightly more!

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Yay for paracetamol! Oooo no aminophylline 😏!!! Good luck with that tonight then. Yes sometimes I feel like I’m ‘over’ treated and other times it under... it’s only now that they listen o me that I get what I actually need... I can feel like Goldilocks tho 🧝‍♀️😂

🚨🚨*AVOID THE SNEEZER, THE WHEEZERS AND THE ‘HACK IT UP’ GEEZERS🚨🚨 😂 Good luck in ENT I hope you enjoy it and don’t catch anything 😉😷

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Hahahahaha excellent! I will keep that in mind! I'm kind of intrigued, having been an ENT patient before a few times to see it from the other side.

Yeah I know what you mean - but with all the struggles in the past I'd rather they overtreated me and I can reduce things quickly. Than undertreat and be left struggling and end up stagnating on a ward for dayssss

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Ugh I wish I could produce the magic wheeze! I go from nothing to quiet in patches to very quiet. Can be quiet in patches when Indon't think I am that bad and being told I'm not...so confusing. I have also had the multiple trips to physio and now just refuse on the basis that the last one told me it wasn't really doing much for the main issue!

I tend to be frustrated when under treated but if they do go in with lots then my brain thinks they are overdoing it! I think my former cons is living in my head ugh.

Glad you have something more for this now Jess. Hope you manage off the amino overnight.

Emma job is usually good but there are some tasks lol...Brain was not up to the trickier/more interesting aspects of this slide deck today so maybe just as well it was just refs..

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Yeah I now just go in with "I know I don't always have a normal breathing pattern in attacks, physio told me to expect that" and that I've seen them multiple times, they're happy and have discharged me! Tends to keep them happy. I think it now helps that I do fully admit I had an issue with dysfunctional breathing day to day a couple of years back when everything first kicked off, because I didn't really know how to cope with the attacks (i.e. exactly the reason asthmatics develop it!)

Yeah its hard to get the treatment exactly right. And I suppose if they had only gone in with the mag and it hadn't worked they'd have been dealing with me in the witching hour again - which I fully understand why they don't want that in any asthmatic but particularly with me! I think that's quite often why I end up on it now when its starting to get late and I'm borderline.

Glad the job is normally good! It certainly sounds pretty interesting. And glad that you at least had some tasks that required a bit less focus when you were feeling a bit spaced! :)

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Yes I deal with the dysfunctional breathing aspect on my summary - I don't get it too often in A&E, more from medics, but once had a really annoying 'asthma = wheeze' resp cons who screwed me over on the discharge summary with it after pretending he believed it was asthma to my face. He also told me he was supporte in this by the clerking of the A&E reg who was truly awful (not only no wheeze but using predicted PF despite being told best and trying to send me home when I could barely move!) Had another resp cons a couple of years ago (it's always the resp ones I find who come up with this) who asked me some very leading questions clearly trying to get me to admit to it and despite me answering them all (and truthfully) in a way that pointed to asthma, still did a discharge saying severe acute asthma and dysfunctional breathing, after chucking me out way too soon. His resp cons colleague who I saw initially had definitely said asthma and I'd be there for a few days.

Yep it makes sense to get on top early - and can see they might be twitchy with you more so than usual!

I do like my job generally - is a bit niche lol. Currently I have stuff about 5 rare diseases on the go - it's interesting but frequently confusing because they're all vaguely similar, and I often have 'if it's Tuesday this must be [insert nasty neuro disorder] here...nah wait that was this morning'.

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See from my POV that’s really odd, cause I’ve only been diagnosed with BD once and that was RBH when I ‘didn’t have asthma’. To be fair I was completely asymptomatic at the time, but had been very bad 2 weeks prior which I think is where I ‘picked it up’. I knew something was off cause my sats were all over the place since being discharged - I’m normally a steady 98 but they swung 93-99 constantly - but otherwise I felt fine just like I was ‘recovering’ from the hospitalisation.

I saw physio once after that diagnosis (when I was very bad, about 1 hr before RBH admitted me) and once after ‘severe asthma’ diagnosis when after explaining to the physio the situation I was discharged (cause I was doing ‘all the right things’ so she couldn’t really help me further 😂). Never had it diagnosed at my local tho 🤨. Another thing for me to be thankful for I think 😅.

Glad you like your job Lysistrata and that it has things you can do when your not your best 😊. Are you researching any interesting disorders currently? I know we’re meant to look for horses not zebras, but I swear most osteopaths work in the savannah and then we panic cause their ain’t no horses there! 😂

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I wonder if that's because you can muster a wheeze and a decent PF drop? I have managed the unholy triad of maintaining sats (via a very high HR), no wheeze (silence generally but they can't always tell) and a peak flow that is both higher than expected and doesn't reliably drop. Even I have doubted myself at times and every cons ever has sent me to physio repeatedly. If it were a drug they would have given up long before! They mostly think physio has magic powers it seems - RBH cons told me if I was no better it has to be my fault for not making an effort (I quit after that. The physio was lovely but had said she could see despite me trying there wasn't any more she could do for me at that point - she had worked on what was wrong).

Can't go into too much detail as it is linked to the drugs/clients I work with but they are all interesting ans horrendous - mostly neuro (lysosomal storage disorders - horrible but gene therapy has a lot of potential), some genetic immune disorders, autoimmune neuro stuff, and a very odd and nasty genetic disorder that causes havoc everywhere (mostly heart and nerves) and is a zebra that is almost always seen as a horse - it's known as The Great Masquerader. Most of these have the problem that they are not only rare but mostly fatal and/or very disabling and until recently had no treatment, so there wasn't seen much point in diagnosing them because you just had to say sorry you have x that is it. Now they're interested in screening because if you treat earlier you get better outcomes.

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My favourite is getting one person come along who says “oh your peak flow technique is excellent!” And then the next person decides they don’t like it and tries to “correct” it 😂

Sounds very interesting! If sad :( I’m quite interested in clinical genetics as a specialty - which has a lot of conditions like that in

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Or when an a&e doc/GP tell you you’re doing it badly, but that’s only cause you can’t breathe... my technique is good enough for Brompton and the resp cons loves it, so I’m not changing it for you!

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Or when they make you do it more than once despite once nearly killing you - yes I know it's meant to be best of 3 but seriously...I feel in my case the effort to do it is probably more use than the number! Last time I had one who wanted me to stand up and do best of 3 when any movement was very hard...she was a bit conventional and I think had decided I wasn't really that bad as she nearly sent me home. Another time I'd just got things a bit less horrible and the med reg said...peak flow? I looked at him and he said ok maybe not...lol. My expression was a lot more communicative then!

I really hate discharge letters...professionally speaking as well as in my asthmatic role! The lack of context is shocking and they're not worth the paper they're written on half the time. I do know it's done by juniors with very little time and probably no training in how to do a good one but in that case they should rethink how it all works. I know my GPs either find them useless or if that way inclined, used to use it to prove a point.

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Discharge letters are so useless! The only things correct on my last one was the pharmacist name and the time frame I had been in 😂. I didn’t have a docs name anywhere on it (I checked cause I wanted her to be my cons), and all my admission blurb was incorrect 🙄.

My new hosp only ask for PF after treatment to avoid that situation and will let you dictate how you do it (standing vs sitting) until you’re on the resp ward! It’s odd but I usually have 1 pre from before I come in so use that if I’m ever asked what my presenting PF was (which does happen 🤨). Not going to lie, sometimes I cheat my PF if I know I need to be in but they’re borderline... a little less puff (420/630) and I defo get admitted, if I hit 450 they um and ah a lot more 🙄

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Haha wow that’s a pretty good effort 😂

They sometimes get me to try one pre treatment but it’s pretty much always about 30% by the time I’ve sidled my way round if I make my own way in 😂 similarly if I’m borderline peak flow wise I will occasionally walk over as I know it’ll tip me over (although I do this less now after judging it wrong a couple of times!)

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Ha glad it's not just me...I always get the guilt though even though I wouldn't if I didn't know I needed it and that they weren't listening. I also tend to underestimate what walking does to me and that the effect can be more lasting than I think if I do it when I'm bad. But there is an element of me wanting to 'hurry' things if I know it will go down anyway and the staff are being annoying. Got stuck in a side room once with one neb which wore off by the time I saw another dr - he got me after a trip to the loo and got me out of there and into resus and some fun stuff going.

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Yup... I was once 460 3.5 hrs post 4/5 nebs... I knew I was about to drop but the doc wanted to send me home. I casually walked to the water fountain to fill up my bottle by the time I got back (10 mins max) I had dropped to 340 😅. Next time doc saw me she wasn’t amused but it got me where I needed to be so 🤫.

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There really should be more training on it! Lots of my friends who were doing finals last year were moaning about this apprenticeship period my uni runs (basically you work with a junior for a month or two to learn the job properly) and kept saying they could learn to do discharges and chase results etc in a week.

I did understand the frustration but was also sat there like “you clearly have not read some of the discharge letters I’ve had!!”

I normally like to at least attempt if they ask, and then at least I figure they can’t tell me I’m putting it on/being a wimp! 😂 once or twice they’ve actually put me on a blanket ban from attempting it for a couple of days while they got me stabilised, which was quite pleasant actually! To just be able to sit and “enjoy” the nebs etc as it were without worrying about how much my peak flow would pick up!

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Must me why... usually when I present I’m a very obvious asthmatic (to the point where other patients/visitors can ‘diagnose’ me). If I’m in a&e my sats will usually drop to the lower end of normal, my PF is usually pretty reliable (it’s how I decide when I’m going in cause otherwise I live in Egypt), and I do usually wheeze... however just missing 1 of these 3 can make the trip more difficult 🙄 It must be very frustrating missing all 3! But if it helps even with all that I still question if I’m bad or if it’s all in my head!

Oh didn’t you know? Physios are magicians - they can cure any thing!🧙‍♀️🧙‍♂️ - I wonder if that RBH cons is the one I’m thinking of and had a bit of trouble with last year 🤔😅

That’s fine I understand confidentiality, I just like the werid and wacky 😜. It sounds very interesting and if screening for them helps so down the progression then it’s defo worth the effort!

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The cons shares a name with a city in the north of England...I will say no more!

Lol I have actually had random people correctly get that I have asthma from my cough! Then you have the people who move away in a and e cos they think I have the plague...and the drs who miss it totally even after I tell them I had it from age 7 and have a massive family history.

Yep the gene therapy is quite magic for some of them - they go from heading to a horrible decline and death to normal! The adult ones are harder to fix, even assuming they get picked up. I do feel like I have an insight into the more chronic and less fatal ones when we do stuff on pt QoL even though they're not like asthma.

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Normally I’m ok in the initial acute stages as I sound pretty dramatic with the cough (and thankfully the wheeze that now rears!).

I still remember my awful attack in July while I was standing waiting to check in everyone was looking at me extremely worried, but the couple of people in front kept looking at me weirdly... and promptly turning back around 😂 and then when I finally got to the front they literally just asked for an ID card and wheeled me into the triage while they checked me in - such a VIP 😜💁🏻‍♀️

I just run into issues a little once I’ve stabilised a bit more and the wheeze has gone (nearly last to appear, first to go!) so the worse a job a&e has done - the more they panic at resp😂

Oooh yeah, gene therapy is fascinating! Cannot wait to see what the future brings with it

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I have had the 'do not pass go'ones usually if I am making noises. Silent but nasty for me is harder! I sometimes get a wheeze after treatment but that is the only time usually. I did have to.explain to our head of HR as he was asking what they need to do for me. As part of that he was asking me what happened with my dramatic work attack and he seemed a bit taken aback when I said I skipped triage ans went straight in (didn't discuss blue lights or resus which I am.used to but freaks out normal ppl.) I find that easier than front desk not getting it- tried to send me to UCC once when I couldn't talk and barely walking!

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I used to miss a&e completely at my old hosp... would take myself straight to amu and get outpatient treatment there for a few days... it was lush... no inpatient time, no waiting time, no arguing... the only issue was that they wouldn’t admit me even if I felt like I needed to be 🤨

I think the worst I’ve been was in reception waiting for triage and doc (who for once I didn’t know) walked nearby (heading towards me but stopped at the desk). I then heard her ask why the ‘obviously very severe asthmatic patient whose wheeze could be heard across the room’ was sitting in the waiting room, she got told I was waiting for triage (had been for 30-45mins by this point)... she said ‘no she’s not’ came over asked my name and got me in a wheelchair... she grabbed my notes on the way past reception again 😂. I was so embarrassed by the drama of it all 😳😅.

My issue is I usually respond really well to nebs (PF goes up by about 100 each) however it won’t last and plateaus at about 70%, but they try to get rid of me even if I explain this... it’s only on the 2nd trip in 2 days that I’ll get admitted 🙄. I rarely get to resp on the day I’m admitted (jealous of you do!)... I now have to go to MRU before they’ll think about a transfer

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ugh 30-45 min for triage is ridiculous! Good on that dr...reception etc ought to pick that up even if not medical. At my usual place they have a nurse on the front desk which tends to work well, except the time when I nearly got sent to UCC where she was completely useless and ignoring me. Mostly they are very on the ball there.

I once had a delightful episode where I had an attack visiting my friend in hospital - her nurse offered me a neb but I didn't think he was serious! Friend and the nurse then told me to go to A&E (she told me afterwards they'd both agreed I'd be admitted) but I couldn't make it there. I was sitting in the corridor trying to make it when a porter was passing by and offered me a lift. I said yes but didn't realise he would wheel me into A&E shouting 'SHE'S HAVING AN ASTHMA ATTACK' very loudly! So embarrassing lol. This filtered into the staff all hearing about it and someone asking if I had been picked up by security...

I usually go to an admissions ward and resp if I stay longer. I can have the same thing you do with initial response then dropping off - kudos to the conventional dr for at least listening to me though it helped my PF dropped too. I feel like I often get kicked out sooner than I should from wards because the numbers start to look ok even when I'm still struggling to walk. If good like last time they pay attention to everything, if awful like the previous time they don't care that my HR is 150 walking and my PF drops like a stone on shuffling down the corridor - no sats drop is all that matters.

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My new hosp have a much better system... you queue for triage (10ish mins), triaged by a GP, queue for reception (if you’re red carded you miss the queue) and then go to the right dept. Red is majors/resus, purple for majors lite, blue for minors, orange for paediatrics, white for minors and green for GP. So far I’ve only had red and purple (who sent me up to majors eventually anyway).

🤣 you definitely got picked up my security! I’m sure your friend didn’t want you to get admitted just to keep her company!

If I get to the resp ward, I insist on not leaving til I can walk to reception and back without dropping to red PF zone or needing a neb, otherwise I know I’ll go home and spiral very quickly cause I can’t slow down 😅. Luckily my current hosp supports this idea esp as I usually only take 4-5 days to get to this level (it took longer til I started the biologicals!)

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Yeah my hospital has a similar system - you queue for triage which doesn’t tend to take too long and then either go back to the waiting room or are shuffled through to your next destination! Depending on what you need.

Yeah the other day because I was wheeled round from placement I came in through one of the doors to the primary care zone with the reg I was with announcing “hi I’m one of the dermatology registrars and this is my medical student who has very severe asthma and is having a severe attack now HERE ARE HER OBS” which she had written on a bit of card 😂

I remember once while visiting family I had to go in, tried to get away with the local urgent care who did neb me but rang up a&e (half an hour away) who wanted to see me still. Because I came with a referral letter they seemed to forget I was asthmatic, so I got called into minors. Walked round, was put on the monitor to do obs and saw the colour drain from the HCAs face 😂 particularly when I told him my sats were normally perfect - as they were sat in the mid 80s at that point! He sprinted off and I was promptly wheeled into resus haha!

Although despite that they’re normally pretty good there too and I often get many glares from people when I get taken straight through while they’ve been waiting! 😅

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Hmmm... not it wasn’t him... he was the one that admitted me and apologised for the prev cons (or she may have been a reg) ignoring my history (that was a she). Because he actually listened to me I didn’t mind him 😉.

Oh yes... having to explain its asthma and not contagious to those that back away 😂.

I think once you’ve been through something severe and chronic, you can understand and empathise with a lot of conditions and the people suffering from them!

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Ahh - well my friend sees him ans he seems to have improved a lot since my time! She thinks he has mellowed since she started with him too- am glad to hear it though I still wouldn't go back to him. I think I would still be too odd for his taste really. I nickname annoying cons after Harry Potter villains (to myself ans friends/family) and he was You Know Who hehe.

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Yeah thankfully I was still making noise on arrival in July but it vanished very soon after 😱 hence the telling off I got for walking haha as I apparently literally just got there in time 😂 we live and learn!

Normally I wait until I can’t speak before heading in because I know if I gasp “asthma” at them and they put in my details and see the long list of asthma attendances they whizz me through quickly!

Oh definitely! I really understand why patients get very frustrated at things 😂 although it can make it doubly hard because I see the annoyances from both sides! I also think being an inpatient has helped things like my history taking skills as people quite often want to talk about why they’re in so I’ve found it quite helpful to get better at building rapport and trying to make things more conversational than feeling really regimented

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Yep I can definitely see how it's going to help some aspects of being a dr (or osteopath for Emma!) - I think some drs just don't get what it's like to be the patient and how they can come across. You'll also appreciate the QoL issue a lot more - I think it's hard for many drs to appreciate that it's not just about the admissions but the day to day can be hard. I really got the pt perspective in one disease I work on which can cause acute pancreatitis - horrible but they all said they mind the daily pains and terrible restrictive diet more, while the experts tend to focus on the pancreatitis.

I also tend to wait till it's hard to miss and hope not to wait - I know it's supposed to be early in early out but if you're a freak like me it doesn't work - I just get sent home and then have to go back! I think that's why I tend to have less trouble on balance in A&E than in clinic as it's much more obvious I am struggling. I have had cons look at the terrible paperwork (always puts 'on admission' for post treatment) -they weren't there to see me at the time and I often get comments on how I looked awful and now look much better, which is hard to convey on paper!

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Oh my god the incorrect recording of peak flows etc 🙄🙄🙄🙄🙄 it drives me insane! Once they wrote my discharge peak flow on there as the only one so it looked like I rocked up to a&e with 80% peak flow 😂

Yeah, or at least I tell myself it will because I need to find a bright side somewhere! But definitely the QoL thing - they always want to talk about admissions at appointments whereas I’ve always said I can deal with them because there’s a nice easy treatment plan and discharge criteria etc. It’s easy to get more treatment if you go downhill blah blah blah. It’s the daily crap ness I hate because you just don’t feel human anymore!

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I don’t mind the dysfunctional breathing on discharge as long as it accompanies the correct level of attack and isn’t put as the primary issue.

But it is a little frustrating - although I guess I can see how it’s easy to reach for it when you have an atypical asthmatic presentation in front of you!

Oh god, had the new painkillers a while ago. Dihydrocodeine rather than codeine, which is meant to have similar analgesic abilities but more on the euphoria type side, let’s just say I can feel the difference 😂 I think I will sleep well tonight! Which with the pred buckets, I will be thankful for!

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Happy sleeping then Jess. Don’t float off the bed 😂

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Everything feels a bit zoomed out 😂 this is strange!

I don’t really use painkillers if I can help it, it’s only because of the effect on breathing and the fact that I can’t cough to clear phlegm I’ve been desperate to get on top of it this time

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I get that reaction just on codeine (very spacey), but I also forget the need to breathe so I’m not allowed in anymore, so it’s just plain old NSAIDs for me 😂. I’ve had oramorph before tho and I didn’t have the same issue with so maybe that’s my ‘super’ PK of choice 😂

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Sadly NSAIDs make my lungs sad 😭 so I can’t have them! But get on fine with codeine without issues

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My lungs are ok on paracetamol or aspirin... can’t deal with ibuprofen tho. The joke is I’m also on tranexamic and mefanamic acid... neither of which I can take when my asthmas bad 🙄

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Hahaha wow 😂 I can cope with paracetamol. Never had aspirin before.

I used to be ok with occasional ibuprofen when I was younger but tried to take it regularly over a day after I’d started to drift to severe and my lungs became very very unhappy! So now I avoid 😅 I had mefanamic acid when I was younger and it’s the only time I remember my asthma actually being properly bad as a kid! I think I was a day off being admitted when we realised it might be the drug!

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I had that for a dodgy back - no euphoria but knocked me out esp plus diazepam to.stop spasms! All the aggro over getting asthma treatment when bad ans they just hand those two over!!

Yes at least the first one put the asthma on too (second one just put DB and I was furious. The SHO tried to help when I objected but her hands were tied on that - she did add a bit but could not change it. Was so cross and upset but she at least got it.) Problem is the first one chucked me out far too soon - following year I had a pretty bad one and this time there was no DB question (I think he went on gases the first time even though they were post treatment and first dr told me showed compensation). He still chucked me out when I was struggling to get to the bathroom next.to me.

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Ugh that is annoying. I remember my first bad attack of this year they tried to tell me it was moderate when I had been on high flow oxygen for 4/5 days 😂 something about that didn’t quite add up to me!! So the SHO just didn’t put a severity on discharge and only wrote the treatment 😜

My only previous experience of properly strong painkillers is post sinus surgery - they gave me morphine before the brought me round and some oromorph post op and I was high as a kite for most of the 3 hour drive back to Sussex after 😂 and then proceeded to crash out into a deep sleep for the last hour

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This thread is going to be so confusing if anyone else tries to trawl through it - even I’m getting lost now! 🤣

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Oh my god I seem to be a magnet for incidents 😂 they didn’t represcribe my oral theophylline last night (didn’t even write it up to restart this morning!).

My levels were 5.9 on the drip so totally not therapeutic and then I got left without any from 8pm last night till nearly 11am so it’s all gone from my system and the symptoms are tearing their head again! 😡😡

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That’s just negligence!!! I’d make a formal complaint I’m afraid.

Get well soon

Liz x

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Nooo! Definitely caused by the bad luck cloud that is definitely a side effect of severe asthma 😂

Seriously?🙄 I’ve been in the same place, but luckily I always have my own with me so if I know it’s due and I can I’ll just take it and tell the docs next time I see them 😅 (I have a meds’ bag on me all the time with at least 1 blister pack of each of my meds plus my preventers). Last time it was cause they prescribed antibiotics which I need antiemetic with (or they dont have time to do anything 😅), and they didn’t record the antiemetic- I told the nurse what I was doing (had some in my bag) and told the doc the next day 🙄.

So now your levels are going to be stupidly low, and you’ll have to build them back up again! 😤 I fully support your annoyance (and if you had a go at the docs I won’t tell 😅🤫)

Hope they’ve got it sorted now and that you’re starting to feel better! X

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I had it with me but sadly it had been locked in the drawer! I think it generally wouldn't have caused too much of an issue but given how quickly I metabolise it and how unstable I still am despite improvements it all added up! The team today were not happy about it not being done last night haha

Unfortunately showering with that brought on a bit of asthma, which caused coughing and then made my pain way worse so couldn't get a decent breath in. They've now decided its mainly pain related as my chest was pretty good by the time the reg came back to review me (4 nebs later so not surprising :P) and while it definitely wasn't helping I do suspect they may have gone down that path to avoid an incident ;).

Been on 2L oxygen for the afternoon which has at least given my chest a bit of a rest and now managed to move that down to 1L. Also had an extra dose of painkillers and we discussed changing to tramadol regularly if I need it as they're really keen to be on top of it given how poor my immune function is right now, but currently I'm not keen to do that if I can avoid it!

Feeling much better now and am at least comfortable if I lie veryyyy still!

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And obviously you aren’t trustworthy enough to be able to know the code/have the key 🙄. No it would have! From my end (of dodgy absorbent rates) delaying by a couple of hours can through me off... I can’t imagine why the team weren’t happy 🤔🤨😂

Does sound like there is a pain element to it atm, however after 4 nebs I would be worried if you hadn’t recovered! Yup they’re probably are trying to avoid!

Glad the o2 helped and that you’re managing to wean slowly ☺️.

Yes you don’t really want a stoned doctor it you can help it 🥺😎😂

Yay for the (almost) comfort! Hopefully you don’t feel like you’re going to float away anymore! Sleep well (if you can 😉) x

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Haha tell me about it 😜 although given I’m in Leicester they’re a little more twitchy about self-administering meds after the Bawa Garba incident!

Indeed! Pretty sure my chest was quiet when the f1 listened as the reg did exclaim “ah yes you’ve got good air movement now” so thankfully avoided the IVs!

I’ve now adapted haha and am significantly less spaced on it 😂 despite everyone being concerned about this injury no-one has actually asked much about it though or examined me! Always good with a patient on long term high dose pred!

My mum is coming up tomorrow though and is a physio so she’s going to have a prod and see what she thinks I’ve done haha 😅

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Ah... yes they’re going to be twitchy about self-administration of meds!

Yay! Fhew - No more IVs!!!! And no more flying high 🤣

I do find it odd that as you were injured in the ambulance, and they’ll be worried about you suing etc, that they haven’t actually had to properly examined yet! You’re probably bruised all over, even if you haven’t ‘damaged’ anything else!

Yay go mum! I’m sending my osteopathic treatment vibes your way... if you have a miraculous recovery from the pain, it’s all me, if it gets worse, it’s cause your drugs levels are low 😝

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Yeah... ah well at least it’s all sorted now!

So do I! Although it was a private contract company that transferred me, and I don’t know if they actually informed people in handover 😂 the staff have only found out when I’ve told them because I’ve been asking for pain relief etc!

Have a few bruises but they’re pretty pathetic for the speed we were going! Although having said that despite the steroids I really don’t bruise easily - never bruise where I have bloods/cannulas etc, even when they’ve missed or tissued and my mum is the same.

Haha sure sure 😜

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