Here we are, 4 weeks post discharge and the night symptoms are worsening and the peak flow is definitely on the way down!
Really annoying because apart from a random allergy and a bug a couple of weeks ago I’ve had really low level symptoms in between so the xolair seems to be helping.
Time to whack up the pred (a whole extra 5mg 😂) and the ventolin to hopefully stay home but I’m not convinced it’ll last! Got my stethoscope out and had a listen to my chest because I felt wheezy when I got home and my god it did not sound brilliant - but at least the air is still moving ok!
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Js706
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I’m sorry to hear this! Look after yourself and get rid of the wheeze quickly 😋!
Don’t leave it too late to get more help tho - it’s landed me in for 4 days (so far 🤞🏻 release tomorrow) cause I waited 2 weeks after exactly the same thing happening to me! Initially it was just 1 night of obs but no... 😒
I know it’s so annoying! But I’ve actually managed to have a vaguely normal life for a couple of weeks and have been out and about properly (which I haven’t managed since about last November!) so I can’t complain too much!
Yeah I’m going to keep an eye on things and see how I go tonight, if I stay dodgy but stable I’ll try and get in to the GPs tomorrow.
Ugh how annoying! Hope the extra stuff helps. Wonder if I could hear (and interpret) my chest would it persuade me not to sit around telling myself it's fine? Would probably just tell myself I got it wrong...
Glad the Xolair seems to be helping though! Admissions are annoying but day to day crapness I.find even worse!
Emma hope you are actually out soon - sneaky lungs grrr.
Made it into the GP after a little arguing with the receptionist on the phone 😂
Managed to produce an abnormally low temperature rather than a high one and the peak flow is down at nearly 40% so off to hospital I go! At least I’m managing to skip out a&e and should be on some treatment before the inevitable overnight dip!
I know 😂 I rang after lunch and specifically asked for an emergency appointment (which I’ve done a few times before) and was told “oh no all of today’s appointments are gone you need to ring in the morning, there’s only sit and wait ones for emergencies” ...🙄 yes that’s what I’m asking to book...
Yep, much as resus is great at my local a&e (I always end up there) I don’t fancy the 3/4 hour battle to be stabilised and wait to get transferred over to the resp hospital! I was actually quite surprised they accepted me at the resp admission unit as my resp rate and peak flow are pretty rubbish and they normally get a bit antsy about that and insist you go to resus first. Still, I’m not going to complain 🎉 just waiting for my housemate to come get me from the GPs.
Ah the rambling has begun 😂
LysistrataAdministratorCommunity Ambassador• in reply toJs706
Good luck, hope they get in there soon and you're not stuck too long! I so wish we had that arrangement with resp unit where I am...
Good luck! I hope they don’t go into meltdown mode when you turn up and send you down to a&e anyway!
My old hosp had a system where I could walk straight in to the AMU/MAU/MRU (the ward you go to after a&e) and just get my treatment there as an outpatient for 2-5 days. The hosp was just round the corner and I enjoyed the no queue, no arguements and being able to sleep in my own bed! The only issues were keeping the cannula in at home (I reject about every 24hrs) and getting admitted if I felt like I needed to be (they didn’t like to cause I catch stuff off of other patients!).
My new hosp doesn’t know me yet, nor do I have a consultant/asthma nurse I can contact so I always have to go via a&e 🙄. This time A&e wanted to transfer me straight up to resp/get advice from them (without going to majors at all) but couldn’t cause no consultant 😒 - 6-8hrs later I was on MRU then next day up on the resp ward... would have been a lot easier going straight to resp!
Made it in and straight on a bed 😱 obs still not too bad but crappy peak flow, so they’re putting me as high priority to be seen as they know my history 😂
Classic severe asthmatic misjudging things 😂 dr asked how I rated this and I went for “eh middle-ish”.
He examined me and was like “now, I know you’ve been worse but I’m very concerned at how quiet your chest is, time to whack out the asthma shopping list”
LysistrataAdministratorCommunity Ambassador• in reply toJs706
Ooh can you get 3 for 2 on nebs? Or maybe BOGOF - buy one salb, get an ipratropium for free? Special offer on mag sulph in bed 3...
I'm.finding this far too amusing lol. I don't even have the excuse of being admitted or just out! Unless last week counts for rambling purposes...
I also rate everything as middle-ish...But at the start it's hard to know! I only woke up to it being worse than I thought once when I got wheeled to the toilet by paramedics while waiting and the few steps required still killed me...
My docs find it amusing when they asked ‘what made you come in?’ - ‘my GP - if it was up to me I’d still be at home’, ‘how do you rate this attack?’ - ‘uh - it’s not really an attack - just irritating and my GP wasn’t happy. Mild/Moderate???’ - it’s basically my answers every time 😂
Fine, this time, my sats has dropped but at 93 that’s not too bad, ok I had had a week on 40 pred - so what that I was still wheezy? 😂
The only time I thought I might me a little worse off was with silent chest, 89 sats, dodgy ABGs and no response to meds for 3 hrs - maybe I was a little bit worse off than usual 😅 - I was more entertained by X-ray having to come to me, not me go to them 🤣
No, when filling the asthma med shopping trolley, ipratropium comes free every 4hrs - it’s a timed reward, only for those dedicated to the attack! Defo all for the BOGOF salbutamol nebs tho! And for every 4 you take your name gets entered into the draw for an IV medicine! Sometimes you win, and they’ll let you choose - mag bag or hydro 😂
Last week definitely counts as a reason if you need it Lysistrata! Isn’t asthma/drugs always an excuse when you’re a little loopy? 🤪
Happy shopping Js706 - I hope you win the asthma bingo!
Feel better soon, let us know how you’re getting on x
Ahaha same really 😂 so what if my chest is nearly silent on 35mg pred? It’s fiiiiiine!
Yeah my sats in the 80s, silent chest attack I walked to a&e and was thoroughly told off! Ended up being actively worked on for about 4/5 hours in resus - whoops!
I’m 4 nebs in so let’s see whether I get put in the IV draw 😜 we’re seeing how I go for now, basically they don’t want the faff of monitoring my theophylline levels if they can avoid it 😂
😂 - we’re all the same! One of my resp docs this time said ‘yeah we don’t trust the words of an asthmatic - just cause they say their fine and good to go, doesn’t mean they actually ARE! You either think you are when you’re not, or you’re just riding the med (neb/pred/hydro) high!’
I get told off every time I go in too 😂. ‘Why didn’t you come in sooner?’ ‘Why didn’t you get an ambulance?’ and my fav one so far... ‘Why TF did you come in by bus?’
Have you played bed bingo yet? My last hosp I had been in all of the a&e beds (5 resus + 11 majors + 5 rapids + 7 minors (some asthma related some not)). It took me 2 years as I kept ‘missing’ the last bed (bed 2 in resus 😂).
So far in the 2 months at my new hosp I’ve done 5/8 beds in majors lite (usually used for assessment/chat with doc), 4/10 chairs in majors lite, 2/5 beds in the majors assessment unit (a different version of rapid), 6/30 beds in majors (swapped for cardiac monitors a few times) and 1/8 in resus 😅. Luckily my new place is massive so I’ve still got a long way to go to hit BINGO!
Yes my docs wanted me on aminophylline this time too til they realised Brompton put my theophylline on hold, so they removed my raffle ticket from the draw - yay 😂🎉 (I hate a 24hr drip and my body likes to be the ‘super absorber’ for it so I usually end up toxic 🙄, weirdly I tend to under absorb theophylline tablets after a few months)
Wonder which drug you’ll win this taffle - I hope it’s a good one!... Defo avoid the theo drip from hell tho!
Well I just accidentally fell asleep on the sofa lol! Been working from home, didn't go out all day but clearly either work or all the deliveries (boring house stuff mainly...but not entirely ) have done for me hehe.
Oh yes the travelling X-ray fair...one time when I had that I got a comment that 'right heart border is slightly hazy'. Yes, that is my boob and it will happen if you take it when I'm sitting in a bed lol.
I think my local, errr, supermarket likes to entice me with a taster on the ipratropium hehe. This time I got a bonus hydro before even getting there plus two neb flavours, I think partly because I showed my dedication to the cause and told them my adrenals don't really feel like working these days and cba to produce their own cortisol.
I have yet to find the elusive IV aminophylline though - maybe that only comes to platinum store card holders who have HRs that behave?
Hope you both feel better soon and get lungs to behave! I told my boss yesterday I was spending my sick day trying to flog mine on ebay and buy a bionic set. She said 'well you can get all sorts on ebay....'
I failed! Consultant came round and the lungs have quietened up again so we’re going straight onto the aminophylline in the hope that I have a slightly less rough night than they would otherwise expect. But “I’m not bad enough for HDU at the moment” so yay! 😂
Ahaha I love bed bingo, I’ve managed every bed on CDU (the resp admissions unit). I had managed all the resus beds in a&e but they revamped it recently so have only been in about 5/8 or so in the new building. I’ve only actually managed about 2 beds out of 20 or so in majors - because I never manage to get there I always end up being carted straight to resus 😂
My aminophylline levels always end up super low, according to the formula I should be therapeutic on 35 mls/hr but in 6+ goes on it they’ve never managed to get me therapeutic below about 70mls/hr and have even been fine on 90! My body is weird 😂 at least I know my liver works
I think they’ve just given up with my HR when I’m in haha, the only time they’ve actively been concerned was when it sat at 170 for about an hour and the asthma also wasn’t responding to anything 😂 otherwise they now just go “oh you’re tachy again...eh” 🤷♀️
Oh nooooo 😫 - at least you know you’re less likely to go toxic! Good luck on the drip, and 🤞🏻 you stay out of HDU!!!!
I used to get downgraded from resus (my old hosp would put me straight there) to majors (or would manage to get it when resus was full so they’d bring monitors to me - as I said it was a very small hospital!), however, when I was put on xolair I managed to have attacks that didn’t need resus for months, then they stopped and started back on the (?) resus level again 🙄. I hope the mepo will mean I’ll never complete resus bingo at another hospital again!
My medics worry when I remain steady at 140+ with blips to 160+ (I’m always irregular on the machines and can ‘gain’ 20+ BPM in less than 10 secs 😅). I get an ECG and I’ll tell them it’ll be sinus tachy, low and behold sinus tachy 🙄.
At least they don’t keep asking you to get your tits out for the machine 🤣
I hope you manage to get some rest tonight and that your lungs start behaving for you soon! x
Yeah I’m hoping the fact that they’ve not faffed and actually put the aminophylline on means I should avoid it.
Ah yeah, they’ve downgraded me a couple of times (normally when I get to cross one off!) but half the time it’s such a faff to stabilise me enough for transport I’m still there by the time it turns up (as they nearly always order it as soon as they see me arrive 😂)
Fingers crossed on the mepo!! 🤞🤞🤞
Ahaha I love when sometimes it can’t read properly because of the neb shakes and it’ll suddenly shoot up to over 200 and we just sit there like “....well that’s wrong”
No worries, I stuck YouTube on on my iPad after my ‘good luck’ post 3 hrs ago and woke up 2 hrs later 😂. At least you are working so you have an excuse for being tired - all I’ve done for the last 4 days in sit in a hosp bed (between great escapes to the mall area of the hosp).
Bloody boobs - always getting it the way 😂! My comment was ‘bilateral lower lobes are indistinct, and general blurryness to the image’ - no s*** Sherlock - I couldn’t breathe, let alone take a deep breath *and* hold it!!!
I generally get atrovent quite quickly too cause I pre-neb before going in (it’s the asthmatics version of pre-drinking 🤣). Such dedication - I’m touched you supported so well! Tell your lazy a**ed adrenals to pull their weight - they don’t get to throw a pity party when you’re lungs are struggling 😅 (seriously tho I hope they do eventually sort themselves out - it does happen!)
WARNING - AVOID AVOID AVOID!!! Aminophylline - think of how you feel after hydrocortisone, add a shot of caffeine and a couple of nebs! The times I’ve been on it I got no sleep at all (don’t think I was even tired), wandered the hosp all night and kept literally bouncing I was so hyper on it 😂!
Yes only those very *special* (needs) individuals get a trial with the platinum drugs 😝 - even with high HR I got mine cause I was still 50%ing for 2 days after 3xhydro, a mag bag, 2hrly nebs (plus atrovent), iv antibiotics plus roids and all my other drugs. It was not great... but I was FINE! 🤣
My uni friends were going to set up a go fund me page to raise money for black market lungs for my birthday 2 years ago... but all they got me was a teddy bear 😢😂.
Look after yourselves! Things I’m about to crash out again, so sorry I’ve I’m slow to reply 😅. Keep us updated x
Let’s be honest boobs are just a pain generally 😂 I used to play cricket and the coach always used to joke that women couldn’t throw as far due to the “anatomical features” that get in the way
Thankfully I don’t suffer with any side effects from the aminophylline really so I love it 😜 (not that I’m ever keen to end up on it!). They desperately tried to avoid it but just had to accept the platinum card at my lungs insistence - I like to think they were at the equivalent of demanding to speak to the manager 😂
I’ve decided I’ve become a little too well known here. The nurse who came to do the admission paperwork basically just came to double check a couple of things and then was like “right I can do the rest from memory I think!”. Also all the resp drs seem to have heard of “that asthmatic Med student” 😂 my old housemate was on placement on this ward a couple of weeks ago and told the dr she was with that she was ok on asthma as her old housemate was “in with it quite a lot” and they immediately said “oh yes I’m pretty sure I know who you mean” 😂😂😂😂
LysistrataAdministratorCommunity Ambassador• in reply toJs706
lol fame! Might be awkward when you qualify...have a friend who is a nurse and has this issue! I managed to make it worse by going to visit her and getting admitted for 3 days... You will get quizzed about allll the resp stuff!
I have just seen about 4 posts I missed due to the way these threads work - now I get it with the bed bingo! I think I'm getting there with resus but majors is too huge for me to even think about trying lol.
Yeahhhh especially as I might well stay in Leicester for my first couple of years of work! As I quite want to take a year out to work in the Med school teaching (and if I stay on the xolair I can’t be bothered to faff with transferring care more than I have to!) so I’ll just have to avoid a&e or respiratory jobs 😂
LysistrataAdministratorCommunity Ambassador• in reply toJs706
Maybe not in paediatrics though. Or the cardiac ward lol.
Have you met the asthma dr in Leicester who does those music videos? Love them though was less sure about the guidelines one as I'd be screwed if they stuck to that... The inhaler one is good though! I think he plans more youtube.com/watch?v=Ame_dNN...
My body is currently unimpressed with me. If it's trying to tell me it wants more hydro, I've had less subtle requests from cats at 5am. They had better recover lol but currently so GREEDY!
Ugh Js I hope the amino helps and you manage an ok night! Silly lungs but at least the team are being responsive and handing out the good stuff.
Only had the tablets so far - Emma aren't you quite sensitive to those? May explain the hyperness lol...something did that for me when I came home from A&E a few years ago. Nothing unusual but I was going hyper at 4am and decided to check my masters results online. I was pretty pleased with them so then even MORE hyper but trying to hold it in and not do stupid things like emailing people so they wondered why I was up at 4am...
hehe I think they have also given up on HR except that this time it may have landed me in HDU...I still don't believe it was lungs lol! But then I'm the one who sits there while they fuss and say meh 150ish it was 170-180 a couple of times I could be worse! (Weirdly, this is not reassuring to them...)
Hope you both manage some sleep - Emma hosp is tiring enough I think!
Ahahaha I actually have asked for that plush before! 😂
How rude of your body! Why can they never understand it isn’t nice to be so demanding?!
Yeah I think they’ve finally clocked that I’m really not a fun person to manage in the middle of the night! The one thing my asthma manages to be incredibly typical in is how much I vary from day to night! They’ve had me drop dramatically too many times at 2am now when they didn’t take it seriously and my veins are crap at the best of times - cue lots of on call juniors wanting to cry 7 cannula attempts by bedside light later 😂
Well you fall asleep for a few minutes and miss everything! 😂
I think we’re all agreed - bloody boobs! All they do is get in the way!😂
Js - Yes I tend to think aminophylline is the army coming in when the firefighters can’t control the flames! You just have a direct line to HQ!
I was always the osteopathic student with asthma (or Muttley cause of my laugh, or smiler cause I always smile when I’m bad 😅). Apparently I’m memorable cause docs I’ve only met once remember me, and the pharmacist remembered my drugs/allergies. HCAs and nurses kept looking at me strangely this visit then asking if I’d been in before (only once to this resp ward 😅). I particularly enjoy the fact that no matter which hosp I’m in (a local or specialist) at least 1 person assumes I work at the hosp 😅💁♀️👩🏻⚕️, I don’t know if it’s my ‘aura’ or my knowledge 😂. I can only imagine the gossip about the asthmatic med student, who likes to holiday in hospital 😂. Just hope you don’t get a placement on the resp ward - nothing more awkward then working with/for your own consultant!
Lysistrata - I tend to be untherapuetic on theophylline tablets once I’ve been on them for a few months, but wow anyone who try’s to up my dose or change my brand, cause I then go too high for a couple weeks (I reckon if they didn’t immediately take me off them cause of the toxicity/side effects I’d adapt and become untherapuetic again in 6 months. I tend to be on/off theo every 3-6 months cause of my absorption issues! I blame my hyper-ness on salbutamol or pred unless I know I’m reacting to the theo!
If you’re hyper about anything at 4Am just post it on here - there’s bound to be someone awake and everyone wants a bit of good news, even for someone else unrelated to asthma!
😂 love it! I want, I want!
When’s your witching hour? Mines 2-4Am, if I’m going to decline it’ll be then, and if I’m asleep I won’t notice til 4 when I’m finally bad enough to wake up! 😅 asthma is so inconsiderate! Treat the asthma - don’t sleep, don’t treat the asthma - don’t sleep! I vote for midnight hospital parties in the resp ward asthmatics only (might be a bit lonely tho - other than at specialist hosp, I’ve only met 2 asthmatic inpatients in 3-4 years at my local 😅)
Well done for at least trying to follow the norms for asthma!
Hope they got the cannula in eventually and that you’re not too bruised!
Oh yeah I’ve had multiple placements on the admissions wards here 😂 even if I haven’t met the drs the nurses know me haha.
Yeah everyone I’ve met today has either looked at me and gone “you’ve been here before” or “I recognised your name” 😂
My witching hour is pretty similar! But normally about 12-4, with things most commonly kicking off at 2! I know haha, it’s about the only one I manage consistently 😂 and thankfully one of my two reliable veins was working so cannulation wasn’t too bad (only issue is this is the one that tends to give up after a bit, fingers crossed it’ll behave!)
Do you get the arms crossed, slight glare, ‘what are you doing back here?’ response too? Nurses, pharmacy, and docs for me! I tell them it’s cause I missed them so much! They say if I feel that way we could just arrange to meet up at the pub 😂
I don’t count 12 for me cause I usually haven’t gotten to sleep til past that point so I deal with it prior to sleep! Have have had the double witching hour before for a while last year, 12-2, sleep, 4-6 🙄. If I’m particularly bad and waking up a lot at night it’s usually pump time at 12, 2/3, 4/5, 6/7 and then I give up sleep. If I’m only a little bit dodgy tho it tends to just be between 2-4 😂😴
I hope the amino is helping and that the docs have stopped panicking!! X
LysistrataAdministratorCommunity Ambassador• in reply toJs706
Boobs on pred. Just no. I felt like saying 'it's ok I'm happy to share the goods with someone who didn't have enough to start with'. At least I don't have the pred now (trust my lungs to be weird and sniffy about standard asthma stuff...).
Js how about a Darth Vader costume?
2 to 4 is THE asthma witching hour! If I wake up it will be then (and I always know it's about 3.30-4am - in hosp that's when i wake up and try to kid myself I don't need a neb hahahaha. At home I'll maybe wake up and need inhaler but my body is crap at waking me up in a state where I can actually do something about my lungs! I either get weird dreams (either that I'm in hospital not being given drugs, or diving, or cats sitting on me), or I half wake up but I'm too stupid to realise why and so don't take my inhaler - I can't even remember what it is at those times! And if I get IV hydro then yep no sleep.
No one ever seems to get this re the sleep - I've been told that if I can sleep it's not asthma because you can't sleep through it, which I don't think is true but I'm a wimp about contradicting people who say this kind of thing, or i get told it doesn't count unless I wake up properly. It does sound a bit crazy though...I once dreamed I was chasing sharks and my tank was running out but I wanted to go deeper to get the sharks despite being really not able to breathe. It's probably a good thing I can't dive tbh...
I once had an acute med cons I had never even met before recognise my name and know what my job was! (it gets them interested - it's not medical but it is related and they always want to know more about it when I can't breathe, so I put it on my summary to avoid explaining. Then I get 'ahhh...so that's why you did this!').
Asthma midnight feast yeah! Guessing with pred munchies that would be quite a bit of food lol. Plus some nebs - like a weird shisha party?
Oh god 😂 my mum bought me a darth Vader bear from build a bear in honour of the asthma 😜
Yeah I’m really good at half waking up at home and having a brief debate about finding my inhaler - normally decide I can’t be bothered and attempt to sleep again! I think it’s possible to reach a point of tiredness where you will sleep through virtually anything!
*gasp - wheeze* *gasp-wheeze* ‘Luke - I have asthma!’ 😂
Witching hours hit 🙄. Js I hope you’re behaving and not causing too much trouble right now!
I do the same! Wake up, nah I’m not that bad, roll over and sleep 😅. I even told the hosp docs, that 1 of my late night nebs would barely get 2 vent at home, and the next night I only noticed the PF drop cause of the 2am obs they did and probs wouldn’t have treated at all cause only dropped to 60% which I don’t tend to notice 🙄.
Alternatively, when I’m up a lot, I sleep with pump (like a teddy bear)! Wake up, take 2-10, fall asleep not caring how I’m doing 😂. I have times when I should nebs, but cba to set it up so just puff it out then roll over, no questions asked!
I’ve hit the too tired to wake up point tho too, usually after I’ve been bad for a while. I start missing witching hour, then wake up very bad at 5/6ish!
There’s a reason one of the questions for asthma severity is ‘do you feel safe to sleep’ - it’s one of the few questions that when I finally say ‘no’, I won’t faff about (eating - well I want to lose weight, talking - meh who cares, walking - I’ll just take it slow, sleeping generally - well it’s the drugs etc, but I don’t mess with my sleep safety!). It’s usually the thing that kills, cause we either don’t wake up or by the time we do it’s too late 🙄😢.
ugh so it seems I'm really careless because I'd actually managed to absorb all the bits about 'if you can sleep you're fine' and not the safety bits! I also do the 'sleep through it and wake up really SOB' but I had actually thought oh that just means I didn't wake up so I'm not too bad... I definitely do the wake up, cba, roll over again without taking it. Maybe I should pay more attention - here I was thinking i was a seasoned asthmatic too!
The witching hour did indeed hit! I was awake till about half 1 so had an early witching/pre sleep neb 😂 and then needed 2 more about half 3 but thankfully they settled it enough to get a bit of sleep! Still tight and uncomfortable but I’m tired enough to sleep through it for now!
Aha yeah at home the last few nights I’ve basically just been sharing the bed with my inhaler! The lovely routine of wake up, take 2 puffs, sleep for 90 mins, wake up again 😂 maaaaybe I should have been seen earlier? Nah!
Tut tut tut! Naughty lungs! But at least you got some sleep! Hope you start to feel a bit better soon, now the aminophylline has had a little time to get in your system.
Who needs a boyfriend when you have a blue pump (or a neb you can ride high!) 😂 I did wonder when I was taking 10 puffs 3-4x a night if maybe I should do something 😅😂 - Nope!
I’m off to my GP for *9.05* 😩😴 appt to get more pred and vent (cause my hosp doesn’t stick red pred 😅) and a replacement PFM as mine started to stick 🙄, then back to bed I think!
I know, it was very rude of them! I’m planning to use the day to get a bit more sleep to be honest 😂 hopefully it’ll be slightly less disturbed by coughing!
Haha, my blue pump supports me more than any man could ❤️ who needs anything else? 😂
Oh joy, hope it’s an easy trip and back to bed after sounds like a good plan! Breakfast was... edible? The bread was only slightly stale this time! 😜
LysistrataAdministratorCommunity Ambassador• in reply toJs706
Ugh - glad the nebs settled it and you didn't need more but still ugh for lost sleep/tightness etc!
Hope you do better today. Emma hope you enjoyed your own bed and didn't wake up too much!
If you actually want a dr or whoever to come, falling asleep is the best way to summon them! Or going to the bathroom- this works especially well if you were trying to convince them you are ok ans they actually watch you (I had this lol - I was actually sitting in a chair outside the bathroom when they came because I couldn't make it back in one go and they got to watch me oops).
Hope you get some sleep Js and have food that isn't cold toast...
Managed the dizzy heights of 250 peak flow 😂 so 55%!
Asthma nurse from xolair clinic turned up this morning like “what the hell Jess you were so well on Monday!” Oops!
Levels being checked this afternoon but otherwise just continuing and see how I go over the weekend. Slight potential to be released over the weekend but I’m not convinced 😂 (just because of staffing if nothing else!)
😂 - well that’s asthma for you! At least an asthma nurse came down to see you... I feel particularly unloved as have yet to see one at my new hosp 😢.
Well I hope you’ll be out soon, but only after you are stable - my money is Wed for you - amino til sat/sun, then nebs Monday, then 24hrs no nebs Tuesday, leave Wednesday 🧐🤔😂
Weekend releases are always unrealistic cause there aren’t docs about (esp as you’re only 55% now). I managed to persuade the docs once to let me home Friday tho as it was a bank holiday weekend and it was then or Tues and I had already been in 4 days - you haven’t served enough jail time yet to get that deal!
I’m glad the drugs are slowly starting to take hold and sort things out for you, and I hope you have a pain free bite this afternoon from the vamps! 🤞🏻lunch was a better deal for you than breakfast! X
Psst - I’ve almost won GP bingo now! Done 7/8 of the GPs at my practice which I joined the beginning of August 😳😅 - the last one is nearing retirement so I don’t know if she’s even still working as her name tag isn’t on any door 🤣. Even my dad was impressed, cause he still hasn’t seen 3 of them and he’s been at the surgery for 40+ years 🤣
Lol imagining parole board...do you think someone will develop an ankle tag for asthmatics? Ditto Js on the out soon but when ready - this weekend does seem a bit too soon sadly. I hope you're up to visiting the local attractions lol.
Hehe Emma GP bingo! My surgery has loads but I tend to avoid them because I worry I am too weird... If I do see them I stick to the ones I know are ok (ie not the partner who told me I was just anxious when I called asking for phone/urgent appt and couldn't talk well). I have managed to get through a few who call me as the duty dr when they notice how much blue I'm getting through - then they get freaked out because they didn't get to.read my notes before and just have!
We are tagged - it’s just by wrist and by wheeze! I got told off for taking my tag off in the departure lounge... er guys you do know that that means I’m leaving right? I know my name - I don’t need the reminder 😂 (it was on too tight and I’d put up with it irritating my eczema for 4 days - I’d had enough! Next time I’m putting it on myself!)
Hospital is defo jail! Docs - parole board - deciding on release date, and any ‘punishments’ earned, nurses -prison officers, patients - other inmates, side rooms - isolation block, Physio - PT instructors, OT - ‘preparing for life outside’, there’s family visiting hours, and you can get ‘early release’ and ‘day release’ if you behave, but an extended sentence if you don’t! We even get a ‘uniform’ if you don’t come in prepared! 🤣
I’m only winning GP bingo, cause I ring for emergency appts most the time, I rarely get a say in who I see - I’ve learned to put up with it, argue my case if I have too (like today for my MDI and DPI ventolin plus for my red pred!), and I’ve learnt that if it’s a doc I haven’t seen yet, I’m most likely to be in hosp by the end of the day 🙄. Slowly getting to know 1 of them so I do try to get him each time. Hopefully once they know me they’ll stop panicking every time I come in! 🤞🏻😂
Lol so true with the prison hehe! Are you sure you know your name? I definitely had the 'uniform' this time given I was arrested at work and carted off by the sirens hehe. Just as long as there's no tag for when we're home...
Very true you can't pick for urgent appts. I think this is behind my pathological GP avoidance - I'm really really worried about getting one of the ones who isn't so good! One unfortunate one has had to call an ambulance for me twice because I finally caved and rang for an urgent appt but couldn't really talk... I just don't have the energy in that situation to deal with soemeone who is determined not to listen - though at least the worst partner has left! Last time I got one who said 'you seem worse than you actually are' because I had no wheeze and sats ok but was struggling to walk etc - I wasn't hospital level so didn't bother to say yes that's what I do, plus he was still willing to do something, but it's faintly depressing and messes with my head - makes me think oh well I'm just making a fuss and shouldn't have come.
My god vampiring was a saga 🧛🏻♂️ even though I’ve drink loads today it took 5 goes, including attempts in both feet, wrists and eventually success from my knuckle 😂 we were one try off them actually just taking an abg to send haha! Bloody veins!
😂 - who had you been feeding if even the vamps couldn’t draw blood without multiple bites? 😂🧛🏻♀️🧛🏻♂️
Ouch - not a fan of knuckle blood draws!
I hope you’re starting to feel better (and that the vamps treat you better tomorrow!) x
LysistrataAdministratorCommunity Ambassador• in reply toJs706
Ouch! See, you can tell Stephenie Meyer never spent much time in hospital - totally misleading portrayal of vampires lol! Hope it's easier next time.
I was offered a job by the lead vampire in my last hospital. It always seemed to be him when I was in and he said 'you're here so much anyway, you should just come and work with me!' I don't think anyone wants me attempting to get their blood...
Yeah I ended up in the blood room on my GP placement shortly after an admission 😂 some of the patients did not look very happy about me coming at them with the shakes!
😂 all I can see is you approaching patients, patients trying to back off, you catching them, saying ‘sharp scratch’ and then stabbing them 6x in 2 secs 🤣
Lol! See I always think it's a shame that the service has deteriorated. In the old days the vampire would visit you after hours in your own home, and they would dress up nicely. Now you have to go to them and no one wears velvet evening capes to take the blood
Stab stab stab! 😂 I’ve managed to adapt fairly well to the shakes but it really doesn’t inspire confidence in people haha, especially doing abgs!
LysistrataAdministratorCommunity Ambassador• in reply toJs706
To be fair, pretty much anyone advancing towards you with a gas syringe is going to get a look of dismay lol. I tried to make it easy a few months ago for a dr and she snapped at me to relax as it would be easier, then proceeded to mess it up - I was fairly annoyed given I knew it would have been much easier if she'd let me hold my wrist the way I did at first! A very honest dr told me I was easy to stab for an ABG one time and it was her not me, so I am now less forgiving when they do it wrong.
(Tbf the snappy dr then had a go at me about how my ABG was ok and I had apparently brought this all on myself by taking too much salb and making myself breathless.)
True 😜 unless you’re sneaky and find someone who hasn’t had one before! 😉
Yeah I’m normally fairly easy (easier than my veins anyway!) but yesterday the pulse was not playing ball either so the dr was very proud of himself when he got it 😂
Oh yes I used to love that... thankfully they now just tend to come over and say “don’t worry your gas is still ok” rather than “are you sure this isn’t anxiety?” 🙄
So turns out my levels on 40ml were exactly the same as before they put me on the aminophylline 😂 no wonder I’m not really feeling as well as normal after 24 hours on it!
Now they’ve been whacked up to 100ml/hr so here comes the high!
LysistrataAdministratorCommunity Ambassador• in reply toJs706
I'm expecting a dance video lol! Hope it helps.
(I once had to stop myself trying to dance to cheese when I really wasn't feeling great. Did not want to have to explain that trigger...).
Speaking of cheese I really wish I had some to eat right now...
LysistrataAdministratorCommunity Ambassador• in reply toJs706
Ooops sorry lol! I would share the Red Leicester in my fridge if I could...I realise those cheese sandwiches will be your lot.
I'm now imagining me trying to explain my asthma in incomplete lyrics from cheese songs: Tragedy! When the.. vento's gone... and you can't... go on...it's Tragedy!...It's hard to bear...monitor's beside you...you're going nowhere...
Oops sorry. I think I've officially lost it lol. Maybe I overdid it at work...
As long as it's not stinky cheese....might make things worse!
After enough nebs my heart usually feels like it's having a personal disco in there. Maybe if I played it some nice calming music it would stop trying to do the macarena?
It was much better overall thanks! Needed a couple of back to back nebs before sleep and one again in the good old witching hour but other than that I got some decent sleep!
Feeling miles better this morning so the new aminophylline rate is obviously doing its thing now 😁
Glad you’re feeling better now that they’ve finally sorted out your rate! Hopefully the discharge date is almost in sight (if you squint hard!) 😊
Finished work and survived! - only needed 10 vent in the 3 hrs I coached so not too bad 😅. Off home to hopefully sleep again, and get ready for tomorrow (going to Nottingham as the girls I coach have a competition 😅) x
Down at a more reasonable 60 now! Feeling slightly less like I’ve chained 8 cups of coffee now 😂 (although I guess given aminophylline is in the same chemical class as caffeine I wasn’t far off that!)
Glad you coped with work ok! I’d also say not too bad, but as we know, I’m also not the best symptom judge 😅 hope it goes well tomorrow! X
Yes amino/theo defo feels like a caffeine buzz! I hate that when I’m on theo I can’t have coke/tea cause it sends my levels all over the place 😢
Yeah I was fine until 4 hours later at home... just sitting there and suddenly got this ‘oh crap’ gut feeling but didn’t feel too bad, went and did my PF anyway and it was down at 45% 😅🙄🤫. Cue another 10 puffs, and only after it relaxed did I realise how tight my chest had been 😒😬😅... should probs do my PF again but I’m avoiding it cause I feel basically fine just very tired so don’t want to take any more ventolin 😂😴. They need to create an alarm system to attach to asthmatics who can’t ID symptoms or to irritate them in to not ignoring them!! 🚨🔊🚨🤣
Thanks. So long as I don’t have to catch them, I’ll be fine! 😂
I hope your food has been (as) good (as it could be), and that your day hasn’t been too boring! One day closer to freedom! 😁 X
Yay for the lower level Jess! Hope the discharge light at end of tunnel is now visible... Have you managed to get any cheese lol?
Emma glad work was just about doable...hope it goes ok tomorrow! Amazing how it can catch up with you later. I went out to get my hair done then decided to hell with it, I'm fed up with sitting indoors and I have nice hair so had a wander round the shops for a bit. Cue achy tight chest again and needing to really slow my walking down. The achy chest is still there grrr - it seems to be a newish thing. Numbers aren't too bad so ignoring other than Ventolin... It's been a week since I escaped so this feels ridiculous! Also I get a complex if I feel worse than I 'should' (if you ignore the FEV1 numbers. WHihc I shouldn't but they're usually crap lol).
I seriously wish there were an alarm or something to avoid the second-guessing...I spend so much time thinking 'ugh not sure what to do...should I do something?' Would be nice if drs also had this so they just get on with it lol. I have lost faith in the idea that they want to see me early when I am easier to sort out, given the way they act if I actually do that.
Oops sorry for the rant/moan when it's not even my thread!
Not to worry! This is a free ranting space for all! 😂 there is cheese and crackers on the menu here, but it’s disappointing cheese 😭 might ask my mum to bring some in tomorrow as she’s up visiting for the weekend 😂
Ugh I hate the achy chest that sometimes persists after attacks, it really bugs me because it never quite feels bad enough to justify much treatment, but never quite goes away either. Hope you feel better for having had your hair done!
Make sure to be sensible tomorrow Emma 😜 you want your mepo on Monday!!
I know exactly what you mean about the going in early, it’s really hard to judge.
LysistrataAdministratorCommunity Ambassador• in reply toJs706
Is the cheese that stuff that looks/feels/tastes like rubber? I hope your mum can provide some proper stuff! Amazing what you randomly crave in hospital lol. I remember sitting in resus once with everyone bustling round doing stuff and all I could think about was how much I wanted a cookie.
Yes the achy chest is really annoying - I was actually getting it in the build up to the attack when I woke up and the day after I escaped it was OUCH! But yes doesn't seem to be much to do about it and I'm worried about mentioning it at my clinic next week in case they think I'm worried about 'chest pain' and start reassuring me or thinking it's anxiety etc. I assume it's somehow asthma-related as it appears with other stuff!
I think my lungs and hair are somehow linked lol - hair is uncontrollable too if I let it! I have a little more success with the hair by getting styles which make it look like I was actually going for the van der Graaf look - if only this worked with lungs hehe.
Good point re mepo Emma - it *will* happen this time!
Had a neb free night and I'm now free from the aminophylline!! Currently managing without my lunch time neb so you never know I might manage to sneak out tomorrow (or tuesday if not).
Hoping to sneak out as early as I can while being safe as I'm meant to be restarting my course next monday after about 6 months off so was quite looking forward to spending the week at home preparing myself!
How's the competition going? x
LysistrataAdministratorCommunity Ambassador• in reply toJs706
oohh exciting! Crossed fingers for being out soon and getting some time at home before plunging back into the course - exciting news there too! What are you going back to do you know? Not resp I hope...
Any cheese developments?
Emma hope competition going well and you haven't needed too much vent. My hair strategy is short and messy styles - then I can pretend bedhead was intended lol. I love the look of French plaits but seriously do not know how anyone does them, even if I had the hair length for it - my skill in that is zero! When I did have the hair length it was like a beast and I resembled Cousin It as I was unable to do anything with it and it broke hairclips lol
I am feeling pleased with myself for putting up some very basic flatpack but SO knackered! Decided to leave the rest to the handyman coming tomorrow - at least I feel like I have a valid excuse now lol ie my body actually thinks it's hard work (I was sweating like I'd done a workout, which is really quite pathetic. It was only an undersink unit for the bathroom and I was sitting down the whole time.)
I’m going back to “neurology and special senses” 🙄 so a mish mash if neuro, stroke, ent and things. Thankfully I’ve done all my resp placements 😂
No cheese but I did get some fridge raiders 👍
I also go for the short, choppy styles! My hair hangs like a dead thing when it’s long - not a good look! Plus as you say, much easier to style when you’re sleepy!
Well done on the furniture! I normally find that tiring regardless of how well I am so definitely fair enough to leave the rest!
LysistrataAdministratorCommunity Ambassador• in reply toJs706
Hmm that has a bit of an X files flavour to it lol - 'special senses'? I feel like there's a TV series in there somewhere (though is it the pts or the drs with special senses?)
Fridge raiders?
hehe yes I have friends who actually like putting up flatpack furniture! I just wished they lived nearer me so I could let them do what they love...
Lots of medals all around so parents and kids (and us coaches 😉) very happy. Only had to catch 2 gymnasts (during warm up) so not too bad 😂.
And so far not too many puffs 👍 (lets hope it holds!).
Woohoo Jess go you off the aminophylline and the nebs! 🎉🎉🎉
I’m still betting you get out Tuesday at the earliest 😝 Enjoy neuro and ‘special senses’ next week (I wonder if it people who can see dead people 😜). Yay for fridge raiders!
Just heading home now so another 3 hours in the car before I can sleep 😴 😴😴
Furniture building is very strenuous Lysistrata! Definitely get the handyman to finish off!
Mmmm yum! Yeah I often stop at the Starbucks on the way out of the hospital for a caramel macchiato 😂 thankfully I haven’t hoarded too much food this time, trying to be good with the further increase in steroids.
This time the side effects are emotional, sat in bed earlier wanting to cry at a cute dog on Facebook while my mum sat there very confused 😂😂
LysistrataAdministratorCommunity Ambassador• in reply toJs706
Oh yes Emma mepo time tomorrow - it will happen!
For some reason I lost my appetite this time - I wasn't on pred because I'm a freak who doesn't respond to it, but I'm also a freak when I am on it as I don't get the munchies! Which was lucky...But my lovely boss brought me all these chocolate goodies while I was in (boss of the year award coming up, she's been amazing) and I am still finishing them now...I don't know what's wrong with me lol! It would have been a pretty good diet without that given I wasn't able to get anywhere like shops by myself.
ugh pillows...they are such a prize resource! I once had to use my own coat for a night which was not fun.
Jess crossing fingers for tomorrow so you can prepare by watching Sixth Sense/X-Files etc (am I showing my age here?) in preparation...
Oooh fab! Definitely a good boss there! Actually my appetite hasn’t really gone up and if anything it’s probably down a bit - but they think it was a virus that set it off (and I still feel like there’s one lingering a bit)
Yeah I only asked on the off chance and have ended up with 3 now 😂 living the dream!
Oooh I love sixth sense, I might give that a watch when I’m out!
LysistrataAdministratorCommunity Ambassador• in reply toJs706
Oh the classic virus. I was glad it definitely wasn't that for me this time because they get weird about it when it is 'oh so we know it was just a virus which is good', as though landing in hospital is a totally normal reaction to a cold! I got 'no obvious trigger' this time so that might make them less inclined to think this is 'normal'. I hope the virus part clears up for you soon as not fun feeling off on top of lungs!
Re the emotional reactions - I am embarrassed to say I once got all upset because my bday cake did not have candles when I was on high dose pred...it was my 27th! :shameface:
Ooo jealous of your great boss. Last year I spent almost all of August in hospital (4 in, 3 out, 7 in, 5 out, 2 in, 2 out, 10 in - very severe chest infection at the end - I think I kept having tiggers otherwise and kept being let out early) and didn’t even get a get well card or even a phone call from anyone at work 😒. So I’m well jell of chocolates!
I still haven’t got an appetite - had 1 sandwich yesterday and a slice of toast so far today - forcing myself for dinner cause I know I need to eat 😅
I swear hospital is the best diet (unless you get the pred munchies!)
I take a memory travel pillow when I go in (it’s in my go bag) and usually wear a fluffy hoodie I can turn into a pillow if needed 😂. - it’s definitely always worth asking for pillows tho - sometimes you luck out and get 3 like Jess 😂
Oh no re the cake 😂 although I’d also be disappointed without candles, even if sometimes I can’t blow them out! 😅
Yeah I made the mistake of starting to keep an eye on my weight for my xolair trial on the day I started it - which was the day I was discharged after nearly 3 weeks in, with most on hdu 😂 needless to say it wasn’t sensible and I quickly gained a lot of it back!
I think I need to invest in one of those, I have most things ready but think a pillow needs to be added, although living near to hospitals and having friends come in for placement means I can often get them to sneak one of my home pillows in
LysistrataAdministratorCommunity Ambassador• in reply toJs706
Lol at a previous job there was cake with candles on everyone's birthdays. Got in there, tried to blow candles out, started coughing with the effort/smoke. Boss turned to the person in charge of the cakes and said 'I told you we should have left the candles off'. Current job just has cake with no candles which is probably better! Though they only do it on the day so I will miss mine next week as I'm taking the day off. May stop me overdosing on cake next week though lol.
ugh Emma that's mean re your job I totally freaked people out this time but they were lovely and one came with me in ambulance etc carrying my stuff, then she and another colleague came to see me later. Much more freaked out than me really as I am used to it! I did feel smug when the paramedics complimented me on my summary in front of my colleagues, given my job involves writing about medical stuff.
Definitely need to eat Emma - anything you really fancy? Sometimes it helps if it's something you *really* like (though didn't work when I had swine flu -didn't want to eat for ages even though my mum did an online order for my favourites to tempt me! Was so sad hope you get appetite back soon).
The coat incident - I asked for pillow and they looked but couldn't find one I had nothing on me at all this time as I was surprised with it at work. Even at home though I always feel like if I turn up with anything more than meds they'll get weird with me and ask why I think I'm staying. I sneak things in my handbag (charger is essential plus earplugs and eyemask) but still too chicken to take anything more.
I used to not take stuff but it depends on where I get taken. If I go to a&e I always take stuff with me because I have so many attendances they always refer me to the resp unit - and then it inevitably takes so long to get transferred that it’s too late to be safely discharged as an asthmatic 😂
Go in for cake anyway Lysistrata! You don’t have to work just turn up!
Hopefully my new job will be a bit more caring! My current coaching job seems to think cause I only work 1 day a week I don’t matter (worked there for 8 years whilst at uni etc) and it’s ‘only asthma’ or that ‘I’m always ill’ 🙄. They had a go at me for parking in a disabled bay (with me blue badge) and it didn’t cotton on with them that I could have died last year during that month. Tho TBF I don’t like attention when I’m bad so deal with it and I just don’t coach properly, and go to hosp after work. I do worry the person I coach with tho, and I know she, the kids and the parents care, it’s just management who don’t!
Show off! (Tho I understand the pride of being complimented for being prepared and knowledgable!)
Had a McD as easy 🤫 ate it so 😏. Nothing seems good atm but I’m blaming drugs/tiredness!
Bag wise I know what you mean!!! Do I leave it and need it, or taking it and seem pushy? My go bag is always ready at home in an obvious place so I usually compromise and get whoever drops me off/‘pick me up’ to bring it and leave it in their car - I usually get almost sent home from a&e, then we talk, then depending on bed space will be admitted (or told to come back next day 🙄)
Nope for any trip in it’s charger, phone, iPad, meds, headphones, money and asthma uni sheet - but tbh I have it in my bag at all times soo 😅. If I don’t and GP is sending me in, I’ll still go home to pick them up 😂
You talk about a safe discharge time for asthmatics Jess... what about 2-4AM... been discharged from a&e at this time about 6/7 times 😒. Sometimes they let me wait out witching hour, other times it’s just go home! 😅
Hope everyone has a good night! I’m off cause have to be up early tomorrow to get to London for my appt 😴😴😴🤞🏻🤞🏻🤞🏻🎉🎉🎉
Omg really living the dream now, they needed a bay bed. So had to find an independent, non-pneumonia patient to go in a side room down the cystic fibrosis corridor - guess who lucked out and now has their own tv, fridge and recliner chair 😂😂😂
LysistrataAdministratorCommunity Ambassador• in reply toJs706
Woop! Bound to be out now tomorrow too hehe...but at least you have comfort meanwhile.
Oh FFS!! Seriously think my body hates me 😫. Today is the day it’s decided it randomly wants to start reacting to something 🙄. Cue (currently mild) swollen lips (up & down - sorry! 😒😓😅) and me double dosing on the antihistamines 😒. If it’s not obvious when I get to Brompton I’m hoping I’ll still get the jab (also hoping that my breathing stays out of the party - sometimes it behaves, other times not soo good 😒) - but seriously body - give me a break!!! And don’t you dare ‘hive’ it up either!!!! Argh!!!! 😤😤😤
I hope you get the news you want today Jess and that you furniture building goes well Lysistrata! Have fun, eat well and keep breathing!
PS Lysistrata your name now appears on my autocorrect 😂
Noooo! Crossed fingers it calms down and you get the mepo ok. Your body really isn't keen on you is it? Terrible timing ugh.
re job - management sound horrible, not the atmosphere you need. Do they think they hand out blue badges for fun?! I have heard things about nasty notes for 'invisible' illnesses from random strangers which is bad enough, but your work should really know better!
Ugh throwing out at witching hour, so safe... not! Thankfully they let me wait till the morning usually. I also have the 'ooh you're doing better 'initial bump with treatment and have to convince them that it won't last!
Jess hope you're enjoying your fancy new room but also getting out today...
Lol at the name Emma - my phone learns all sorts of random stuff. It has finally learned my real name but also.offers some very odd suggestions for various words that I have never used and never likely to...
The antihistamines have worked!!! No longer swollen so should get the mepo 😁 🎉🎉
Management where I coach is 💩. I think they can’t comprehend why I have a bluey because when I’m well I can do everything (somersault etc) but at the same time I can’t walk outside in the cold 🙄. Plus they’re ignorant so... 😅
I told them I was moving to Norfolk and had a job interview (next week) 2 weeks ago... they didn’t do anything, asked another coach to repeat in a management meeting cause I run the disability gym so if I’m not there it’s cancelled so I need to be replaced ASAP - they accused me of not telling them, going behind their backs, ‘we shouldn’t have had to hear it from Jess, you should have told us’ etc etc - dude I did tell you you just didn’t listen! (She’s an alcoholic with undiagnosed korsakoff’s and he’s legally blind and a heart attack waiting to happen... neither should be in the gym full stop let alone running the joint!)🙄😅
Yes Jess - how was the private room, with kitchenette and on-suite? 😂
🤞🏻for your release (if your lungs have behaved for you overnight!)
Ps sorry for the bitch-fest!!! I’m just very frustrated at work atm as are most of the other coaches - a lot of coaches are leaving and going elsewhere!
Yay for the antihistamines! Liking for that and not the terrible management - wouldn't be happy with that as a parent/gymnast either! no wonder people are leaving.
Crossed fingers for the job interview - or have you had it already? is that for a degree-related job? Hope it goes well and you get a better management.
Blowing 570 on PF too so they’re happy to proceed - I did have to fill them in about the last week tho and my ACT does not match my current PF 😂
Thank you- interview is next Monday (hence why I’m desperate to get the mepo today!). Yes it’s for an osteopathic associate position, so will actually get to use my degree if I get the job! Osteopaths tend to be great employers cause we’re medically trained so 🤞🏻. Then I’ll find a gym nearby to coach at, hopefully with better bosses!
Woohoo! Finally the mepo! Lol my ACT never matches PF that well I think. Not sure what they put in the FEV1 box either as that's always pants these days. I have post-admission clinic on Wed ugh and might show them my gadget as they seemed interested.
I managed a great spirometer too - they were almost upset cause it’s not a ‘true representation’ of how I’ve been 😅. I said I wasn’t giving them any reason not to give the jab to me this time 😂.
I’m defo jealous for your gadget! Which is it (and how much did it cost you? 😂)
lol I wish i could get mine off the 'your peak flow is great' - yes and you know that means nothing, come on... I hope they are starting to get there with 'getting' me but still hate clinic as I had such bad experiences before with other places I can't talk to them properly and become a nervous wreck.
It is not the cheapest (£78 on Amazon) though I ended up getting mine free! It had some bugs but they updated that and it works much better now; however they still decided to refund me and said I could keep the gadget and see if the updated app worked for me - which it did. It's had some more updates since then eg you can measure both PF and FEV1 together and it tells you the percentage (which still doesn't stop me pretending it's ok...). It also gives you feedback on whether the blow was ok.
This is my specialist hosp which learnt through experience this time last year when they said I didn’t have asthma (I was asymptomatic), then I went home to a massive chest infection and severe asthma which my local couldn’t control as they’d stopped most of my asthma meds - it’s when Brompton saw me again in Dec that they went into panic mode and apologised profusely! Now they know I can be brilliant but also terrible so I get the good drugs 😂!
Ooo - may be something to buy with my first pay check then 😅. If I can get a ‘broken’ one even better if it’s then free!
I hope you’re ok Jess! Freedom is one day closer - even if it ends up not being today! X
Ah the joys of being really well when you’re well. I spent 2 years bouncing in and out of hospital without really being taken seriously (I think being young and in a high stress degree counted against me!) before they were like “hmmm maybe you’re actually quite unwell!” 😂
Since I attracted the interest of the lead consultant of the difficult asthma clinic they’ve been fab! (Most people ask to see him, whereas he now insists on seeing me 😅 the joys of being awkward).
Not been seen yet but I’m down as a potential discharge on the board 🎉 and had a decent night - back to the waking up with symptoms but not really being bothered enough to do anything other than roll over and sleep again 😂
LysistrataAdministratorCommunity Ambassador• in reply toJs706
Oooh sounds promising Jess - fingers crossed!
hehe Emma the things we find exciting to buy lol - I'm such a geek about these things!
I was also at Brompton ages ago but was better then than now (hadn't been admitted at that point was just a weird case), and they really weren't that interested - physio was good but then the cons told me I just wasn't trying hard enough and it was basically my fault and I should stop taking so much reliever (physio said it definitely wasn't my fault and I was trying but she couldn't help me any more) so I gave up.
Cue lots of bouncing and awful cons before I got referred back to a specialist place. They are better than the ones before I think and I am a freak so it's hard to know what they could do (ie can't have any biologics, don't respond to pred which I'm glad they got me off), but I'm more of a slow burn day to day crap (plus some admissions) which seems to be easier to fly under the radar with. I spend a lot of time dragging myself in to be told I'm safe which is annoying as I knew that...but I guess they have to check! Last admission was a bit different but I'm so bad at talking to them I don't know if we will get any further!
Been given the ok to go 🎉 and negotiated only staying on 50mg of pred for another week rather than 2 (as my next xolair is next Monday so they can check on me then) and will make a note of the aminophylline rates on my discharge letter so I can hopefully skip straight to my therapeutic dose if I need it again!
Yeah the slow day to day crappy is so much worse, although I’ve been in a lot this year most of it has just been fairly rubbishy daily symptoms which I found much harder to cope with and manage than the admissions!
I also struggle sometimes in clinics to talk and get everything out. I always have a Skype session with my parents before appointments and have to plan it out pretty much 😂 and even then I still normally fail to cover everything!
LysistrataAdministratorCommunity Ambassador• in reply toJs706
Woop! Yay for home Hope it goes more smoothly next time with the amino. Also that you enjoy being home with cheese, your own bed/pillows and The Sixth Sense hehe.
Yep I do feel like they only count admissions sometimes but I'm so fed up with all the daily and night time stuff. Though admissions are stressful too because I never know how they're going to be - my 3 visits before this one were horrible completely or partially and I feel it was a fluke this time.
When you get to be a doctor you'll at least have a good understanding about why patients struggle to communicate/don't always do it the best way. I sometimes feel like they're thinking come on it's not hard/don't get why I can't say stuff. They are much better here than in other clinics I've been to but even with that I think there can be a gap between what I'm thinking and what they're thinking (eg one nurse keeps telling me it's good that my eosinophils are normal - well it might be if they were usually high but as it is, it just means I can't have any of the new drugs and I don't think she really gets that this is why I'm frustrated and don't think it's good!).
Yeah, that's why this admission has stressed me out a bit as it makes the benefit of the xolair a bit less clear cut! (Although if you pick any other 4 month period of the year I've been in 4-6 times, vs hopefully just this 3 for the xolair trial) but day to day is where I've noticed the real difference - which honestly to me is far more beneficial and important!
Glad the recent admission did at least go smoothly - hopefully not a fluke and actually an improvement (although obviously preferably there wouldn't be any more admissions!!)
Yeah, recently I've been remarking to friends and family that I honestly have no idea how people without a medical background cope with navigating complex/chronic conditions in the NHS. Because I have the background knowledge, know where I can find out more info and can use academic papers etc for research and I still struggle to get anywhere! I also often get the "oh well your eosinophils are low" and just sit there like well a, they've never been high and b, 40mg of pred for 6 months+ will tend to do that!!
Thanks for keeping me company with my rambles throughout this admission guys
LysistrataAdministratorCommunity Ambassador• in reply toJs706
hehe same to you even though it's been your thread as I have been venting about mine too! Of course there won't be any more my work actually thought that I wouldn't have more (I have had one in July which they knew about but not from work) and I said well I would try not to freak them out like that again but it was realistically not going to be the last. I had to add the total up last year for life insurance (which oddly enough I did not succeed in getting) and it was an eye opener for me lol though am sure others have a lot more. I usually do fairly short ones (1-3 nights) which makes me feel like they're not 'real' or the team don't take them seriously - I do feel this one has maybe made them pay more attention though as last time it was 'oh come and see us in 4-6 weeks, this time it was 'so you have clinic next week, please contact us before then if you're struggling'. Still convinced they're just going to bang on about how unnecessary HDU was (I used to have cons who despite being nowhere near and not seeing me before or during my admissions, took pleasure in telling me how incompetent A&E/medics were every time and how they would never have admitted me and would have chucked me out if they had been there. So reassuring.).
I work in a medical-related field and know how to read research etc but honestly I cannot communicate *any* of it! I've spent so long not being listened to I now just kind of assume they won't listen at all and sabotage myself by rambling. The asthma psych is trying to help me with this - it helps that she is fairly horrified by the previous experiences I told her about as I had started to see them as normal. (She actually asked me if I'd reported them to PALS - nope no point, would have been more stress and got nowhere, but it was nice to hear that it wasn't me!)
Yay!!!! Go Jess Go!!! Freedom is yours for the taking 🎉🎉🎉
😂 your so demanding Jess - wanting to be so difficult the head honcho is interested in you!
If it helps when I was on xolair I was still in and out of hosp a lot however cause I said when I glared it was easier/quicker to deal with and I had less daily symptoms they were happy to keep me on it! It’s not a cure so you’re still gonna get issues, you just have to hope that they don’t blame the xolair for the flare up!
And yay for them recording what aminophylline rates you need so it can be affective faster next time (and you’ll be out quicker 😉)
The slow day to day decline crap is soo much worse! You feel crap but there’s nothing they can do to help, so you just put up with it but because you’re not making a fuss all the time your ‘not that bad’ 🙄. Also you get more ‘attention’ from gen pop on admissions, whereas they forget about your daily issues, so are less helpful!
Oh explanations are the worst! Esp at consultant appts. You try to explain what’s going on and they either don’t understand or you forget something 😂. ‘My lungs feel like their wrapped in cling film’ - ‘so you feel tight??? 🤨🤷♀️’ - ‘not exactly no 😅😂’
I hope your next set of admissions are better and like your last Lysistrata (lets be realistic that they’re going to happen at some point!)
Yes having the background understanding about communication issues greatly helps in healthcare helps. You learn to listen and ‘repeat back’ in a different way so that you know you’ve got it properly - as a patient I know it helps clear up miscommunication!
Not helpful telling you your eosinophils are good when they always are! It almost rubs it in that your difficult and that they’re no other options for you 😒
Lysistrata now Brompton aren’t palming my off as a breathing dysfunction and anxiety they’re a bit better but I now always feel a fraud when I’m here 😒.
Well I’ve survived the jab so am about to head home. Need to find out if they want me to restart my theo tho 🙄
You’re welcome Jess! Thanks for putting up with my rants/rambled responses! 😂
Look after yourself, good luck in neuro/‘special senses’ next week and enjoy the pleasures of cheese, your own bed and a good Starbucks to finish on! X
I'm glad that the asthma psych is helping Lysistrata! But yeah its so difficult to suss out how best to repeat it back, even when you do "speak the language". It really sucks when you get to the point of accepting certain things - I was talking to the pastoral team at university recently about how I was worried my response to things was a bit "broken" because of how normal it felt to me to be rushed to resus every time I go to a&e and she just replied that unfortunately it was just because that abnormal thing had become my normal. And reassured me I was not emotionally broken!
Yay Emma! Glad you FINALLY got it started, fingers crossed it helps! Yeah, unfortunately with the state my asthma was in and the immune deficiency I have causing issues too we knew the xolair was never going to totally stop everything and I do at least seem to be responding much faster to treatment once I decline properly (whereas previously once I declined we were in a for longgggg load of drugs before anything shifted!).
I definitely intend to try and make sure I give time for clarifying any questions/issues in future practice when I can - I've had patients in beds near me ask me to explain stuff the team has said to them multiple times because they haven't had a chance to ask
Lysistrata - to be fair, its understandable why they freak out! And I think when we're fairly chill about it as the patient it weirds people who aren't used to it out even more. I mean, I've had attacks on placement, surrounded by doctors and they've still freaked out and panicked! (I had the renal team sat crowded round a computer looking up the acute asthma guidelines because it was clear a couple of nebs weren't cutting it and we were waiting for an ambulance to move me!) All the while I was sat there like "I'm fine guys don't worry!"
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) have done for me hehe. 
Currently managing without my lunch time neb so you never know I might manage to sneak out tomorrow (or tuesday if not). 
I totally freaked people out this time but they were lovely and one came with me in ambulance etc carrying my stuff, then she and another colleague came to see me later. Much more freaked out than me really as I am used to it! I did feel smug when the paramedics complimented me on my summary in front of my colleagues, given my job involves writing about medical stuff. 
and you get a better management. 
Has anyone seen GMB?
My asthma is getting worse and getting me down!
How to tell if an inhaler is working?
What next? Feeling a bit down with it all
