Oh what fun 🙄

4 months ago

They’re already talking jail time for me as have dropped so regularly for so long and constant issues for the last week (or basically since I was last discharged from hosp 😅). Med team thought maybe only 1 night tho and just for obs.

Docs here not impressed cause to get my sats to 98 on air my HR goes to 150+ currently it’s settled at 96 with a HR of 130ish so yet another ecg coming my way 🙄. When they first attached me tho I was 93/94 sats so it’s probs a good thing I came in 😅. Currently on an o2 driven neb - sats 99, HR 113 (maybe they should have O2 driven from the start 🤐)

Had my abg gave the doc bonus points for little pain, however he’s lost some due to the big painful bruise with came up immediately after 😂

Currently on a mag bag and strapped up to all the monitors (have so far avoid setting them off 😇), and have also so far had 100 hydrocortisone and 4 nebs (but apparently I’m still wheezy) 🙄

Yes I’ve decided that it they don’t give me the mepo next week, I’ll never get it as 3rd times the charm 😂.

5th trip to my ‘new’ hospital since August and I’m now starting to get recognised - think I should be worried about that! My last hosp took 6 months to ‘know’ me. 😅

Discharge letters always make me laugh - out of the hundreds I’ve had one 1 has been completely correct - I’ve had wrong diagnosis, wrong starting obs/PF, wrong gen info, no info etc etc.

I love how they do obs too - if I’m a steady 93/94% sats but cough/laugh myself momentarily to 95, guess which one they record. Same with HR - I jump about a lot true but if I’m averaging 121-128 then surely they should pick 12?, but they’ll take the 115 I hit for 1 second 😂🤷‍♀️.

This was the first time a hosp told me to get my GP to check my HR, but I always blame the drugs/asthma - I just know it isn’t good to be constantly tachy 🙄

Oh no 😣. I hope you start to feel better soon and don’t land back in serving time!

(Sorry if this is all over the place - a lot of drugs and interruptions- when I started I hadn’t seen the medics and had only had 2 nebs 😂)

Reply

Lysistrata

in reply to EmmaF91

4 months ago

Ugh! Sounds fun. I hope it really is just one night and actually starts to.sort something! At least you're getting the treatment and not the faff around and see. Hoping eventually the mepo happens. Do you have clinic coming up any time or will they just say wait for mepo?

Thanks - you actually inspired me this time as I remember you saying oj here you insisted on waiting to see what happens after initial nebs etc. I got a bit better after first lot of nebs and hydro and could see ED dr thinking I could go (this was in notes as HDU dr told me), but thinking of your approach ans my usual pattern I was more insistent than usual plus my summary backed me up that I would get worse again - dr was a bit conventional but willing to listen. So thank you!

I went in Mon after a bit of a dramatic episode from work, left Sat afternoon. I would never have actually done anything myself at that point because it was more sudden than usual (bad Sat but better Sun and able to work Mon but with lots of Ventolin) so figured it might just go. My colleagues however felt ambulance was needed. I still feel it wasn't the worst ever just more sudden and why HDU (only 1 night). Thankfully it was a good experience this time with everyone as the last.3 were frankly horrible either completely or partly!

Yep the discharge summaries are so useless, and my former cons used to think that 'on admission' with random obs meant I had come into A and E like that, as opposed to this being random obs taken post lots of treatment - there is zero context usually. They also never ever seem to say what I had in ED so makes it sound like I came in, had one neb ans got better, when I'd never go in then nor would I be admitted if I tried! Guess it explains why cons always thought I was exaggerating, but you would think they should know how it all.works!? My job involves writing about medical stuff and these summaries are painful professionally as well as personally!

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EmmaF91

in reply to Lysistrata

4 months ago

Yes - I love a good trip to my local a&e 😉. I’ve been tagged and defo in for the night with resp review in the morning.

I’m meant to get the mepo next Monday so I’m hoping that I’ll be fine by then!

Yeah on my ‘info’ sheets I tell them that I’ll respond to nebs but they won’t last so I need hydrocortisone, and since I’ve added that they’ve been quite good at not faffing too much (despite their apparent love for mag bags 🙄😂).

You’re welcome 😉 - I’m glad that standing your ground worked for you and that the docs listened! Most of my a&e docs love me cause I do know my body/condition so well and can usually tell them what I need, and will admit to them if i probs should stay even if I’m saying I want to go home! And I can usually reason out what happened (I’m good at explaining away symptoms 😂).

I know what you mean - I only came in cause of the GP, but my mum said I probs should have come in yesterday. Triage GP said I should have come in a lot earlier (ie as soon as as I started over doing the vent) but if I had then it would have been like every day since I was last discharged 😅🙄. I told them I was at Brompton last week and they weren’t too worried 😅. I came in when prompted and watched people worry whilst I sat there telling them I’m fine, cause I always compare to my worst too 😂.

I’m glad your hosp experience was a lot better this time! It’s so variable when you come in, even when attending the same hospital 🙄

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Lysistrata

in reply to EmmaF91

4 months ago

I love the mag bags! Though got a bonus one this time in HDU 'to sort your electrolytes' - a slight mystery if I'm honest, but perhaps related to the low potassium? Never had that before amazingly despite ventolin and Phyllocontin, and sando K is ugh - I am wondering if all the fluids I got in A&E to lower my HR (with no effect) did that. Sadly the second mag bag didn't seem to be quite as magic as the A&E one...

This time they were all over my summary including the paramedics (who were great - none of the 'ooh you're not wheezing and your sats are fine' (they said I appeared to be getting air *in* fine but nothing is going *out*). Everyone who saw the summary loved it so all hail the summary The only problem is that really rubbish drs at other times don't even want to look at it, or if they do they apparently don't bother to read it properly. This time it helped with a) yes my HR is doing that for asthma, I don't have a pulmonary embolism and you do not need to withhold nebs b) yes I will get better then worse.

I am also very confused when to get help given that the GP's view would also have me living there recently! The resp physio said 'it doesn't usually come out of the blue' and I said err well no but I usually don't find I'm capable of getting to work the same day this happens!

Yep re the variability - I kept waiting for something to go wrong but this time it actually was fine the whole way through - if only it could be like that every time. I did actually come out and say last time I feel I was chucked out before I had managed to successfully transfer to inhalers and it really wasn't great.

Crossed fingers for 3rd time lucky with mepo and a good review tomorrow! sorry have realised I am rambling about my admission when you're actually in.

Reply

EmmaF91

4 months ago

Nah - too many mag bags does the opposite as it relaxes the airways to the point where they can’t maintain their shape (my specialist centre don’t like their asthmatics having them at all, and the max is 2 a month so...). I’m not allowed amniophyllin cause I’m prone to unexpectly going toxic (and Brompton just stopped my uniphyllin cause of the HR issue 🙄) but I’m glad it worked for you!

If my potassium’s low they usually give me a saline with potassium mix. I’ve never had Sando K tho so I wonder what it does 🤔

Yes, all my ‘emergency’ docs love my summary! It makes life so much easier for everyone when you don’t need to remember/repeat everything, and they can walk off with it to make up your med chart etc 😇. They also like my Rasta PF meter cause they can see straight away what zone I’m in 😂 (lazy like me and don’t want to do maths all the time 😂). Have yet to get someone who completely ignores it so touch wood I won’t! I completely understand the frustration if you have had that tho!

Yes, exactly! For me it’s usually a slow build, that I try to treat at home or else I’d be at the GP every day and the hospital every other. And its such a slow build I can ignore it as it worsens and having lived at 50% for a year+ I don’t always recognise when I’m hitting ‘danger’ zone unless my PF is very low and I can’t get it back up!... I go somewhere when I feel like I need it or when others prompt me to!

I hate it when they send you out, without following protocol (ie 24-48hrs post neb). My last inpatient (1 night) I saw the doc 1 hour after a neb, chest clear, PF 75% so he sent me home. 2 days later I knew I was worsening again but put off til now til returning. If I had stayed that extra day, would it have stopped me going back 2 weeks later just as bad? 🤔🤷‍♀️

Nah don’t worry about it - I love a good ramble! I’m currently 🤪 from the meds (and the mag/nebs have given me a headache 🤕) so any distract is fine!

Waiting desperately to get to a ward so that I can charge my phone which is currently at 3% 😬

Thank you 😊

Ps just found out I’m meant to be on 2hrly nebs... maybe I won’t be out tomorrow (then again maybe I will 🤨). I had to ask for one at 7.30 cause I had dropped from 75% PF to 55% and I didn’t think they’d want me to revert to red zone again 😅

Reply

Lysistrata

in reply to EmmaF91

4 months ago

Oooh I didn't know that about the mag! Never had 2 in short succession before but have a friend at the Brompton and she told me about the new mag rule, but they hadn't explained why to her. I think they did end up giving her more but about a week apart! I was worried it was losing the magic... Both of them made me feel really weird, but if it's helping breathing I find this more acceptable.

Phyllocontin works for me without any funny business with levels, though I do get the occasional 'but your HR...' - thankfully the Samsung Health app has shown me it's not like that all the time so I reckon my heart is better off without even more asthma shenanigans, which I would definitely have even more than usual if I stopped anything I'm on!

Sando K is an oral potassium solution and it is famously minging! Thankfully I've not had it before and would much rather have IV if I have a cannula in, though this time my veins weren't behaving (paramedic tried twice and couldn't, I ripped out the A&E one transferring to HDU bed, and the other one fell out with a curious lack of blood, but thankfully the asthma team had persuaded the medics that I could switch to oral hydro by then).

Yep I hate it when they chuck out too soon. I actually don't think this attack was *that* different from last time when they had HDU etc sniffing around me (I still have no idea why that time - was initially told they'd misread something but even after they'd sorted that out they still came to review). But last time I had the medics from hell who just refused to listen to their own guidelines etc and though I didn't bounce I felt horrible for ages - has also happened with my local who can be good in A&E (well not last time...) but then the medics want to chuck out asap - even when I had an attack which was very definitely worse than this one, they acknowledged it wasn't great then promptly threw me out when I was still on nebs struggling to walk to the bathroom next to my bed.

I feel like this time, if I had been left to my own devices to decide when to go in, it would have been even more stubborn and hard to fight off as an attack - my longest admission as it is. Sounds like your last one left you kind of half-baked if that makes sense which is horrible - I can see why you think hmm if they had just done ONE extra night and actually bothered to follow protocol! It's not even as though we are just being weird and awkward - it is a protocol and it's there for a reason. It can't be efficient or cost-effective to ignore it that way and last time I know it wasn't even that they needed the bed.

I have also started to get used to feeling generally crap and at low

levels (FEV1 for me - my app that goes with the fancy meter has now

started telling me what the percentage is for both that and PF so I have

had to stop cheering when I get what seems like a good number, because

57% actually isn't!)

I hope you get your phone charged soon and escape soon - but only when actually ready ie none of the half-baked stuff! 2-hrly nebs doesn't seem like it's immediate escape though you do have home nebs - does that help or does your protocol for them mean you still really need the extra support from hosp?

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EmmaF91

in reply to Lysistrata

4 months ago

Snuck to the end of the corridor again 😅.

Yeah I don’t think I’m going home today. Can’t maintain my PF keep jumping from 500ish to 300-350. Had a neb every 4 hrs in the night (due to symptoms 🙄) and a grand total of 2 hours sleep 😴 . However knowing my luck (and lungs) they’ll be clear when the doc comes round 🙄

My mag bag reactions include headaches, nosebleeds and hot flushes (which my mum finds hilarious 😂), and also that slightly spaced out feeling.

Ended up having a ‘midnight’ ecg as I thought they’d decided not to do one, but no they just hadn’t gotten round to it. Cue 3 goes as my HR kept changing on the monitor 🙄. Forgot how having that much emergency meds plays with my bladder - they sprung a surprise piss pot on me - ‘yes I can fill it, even tho I’ve just been my bladder says yes’, but no I can’t, my bladder was just irritatable and excited 🙄 the nurse laughed at my tiny sample 🤣

Ohhh - yes dissolvable potassium is disgusting!!!! Tut tut - you just wanted to be difficult and get all the attention didn’t you! I’m hoping I’ll get mine out today but gotta get approval from the docs first (just in case they decide on hydrocortisone therapy 🙄)

My longest stay was 10 days continuous (with 3 in 2 out just before). It was the 1 time when I insisted I needed to go then without faffing about (my mums used to me saying in need to go in but actually going a couple hours later after I’ve organised myself 😳🤫😅). I had a hosp aquired infection, and should have gone to HDU (if there had been beds, as it was it was my worse hosp experience to date 😒)

Ooo, posh tottie with your HR app and fancy FEV1 meter that works out your % 😂

Thanks - here’s to not leaving half-baked! My home nebs only meant for emergencies, if I have 1 I’m meant to tell my GP, 2 in a day means hospital. I haven’t had any in the last couple of weeks - mainly cause I just puffed it out on my vent and went through 2 and a bit pumps 🤫🤫🤫. I refuse to let the hosp make me break the rules unless they give a firm outline - last time I did they just said take as needed with no limit or maximum before getting help - 6 weeks of 2 hourly nebs and high pred I couldn’t take it anymore and went back in 🙄. Got told I should have come back after 1-2 weeks - well no one told me! 😤

Ready for my cold toast breakfast 😏

Reply

EmmaF91

in reply to Lysistrata

4 months ago

Hahaha!

This message chain is all over the place! I’m blaming the drugs as to why it’s not linear! No I’m with 2 bed-bound old biddies l, and a spare bed so maybe it’ll get filled by someone younger (I can always hope 😅)

I usually like the resp wars as most patients are understanding and in the same boat - I understand 1 doing it, then apologising (and not doing it again), but the other is unbelievable! On a resp ward you don’t spray unless it’s a) minimal and b) ok for everyone else!

As I was brought up and was waiting for which bay I was going to, we were just chatting, with the friendly ‘what are you doing back here? Well I suppose it has been a couple of months, and you did warn us you may be a frequent flyer, but really!’ 😂

(Response to the next post!)

Thanks

Just seen the docs - it’s the same team as last time I was on the resp ward - they are brilliant!.

I told the cons that I’m feeling fine, a lot better than how I have been, however I know I’m not maintaining it without nebs. He didn’t even listen to my chest as he knew I’d had a neb at 8.30ish and with my PF back up at 500 he didn’t expect to hear anything (and he called the PF ‘false’ cause it’s only that high from the neb - pre I was 350)!

They’ve stopped the doxy cause I’m not infectious (yay 🤗), and downgraded the nebs to 4hrly with PRN ventolin inbetween (which I should record when, PF and how much). I’m hoping I won’t need the vent as overnight I barely needed the neb 4hrly - only got it cause I knew they wouldn’t be happy if I let myself ‘feel’ wheezy which happens in red zone - I only felt tight and coughy. If I was at home I would have ignored it and gone back to sleep!

No talk of going home today - he even said I wasn’t ready when I joked about them kicking me out. They’re going to ring Brompton for advice too. Maybe they’ll start me back on uniphyllin 🤷‍♀️.

Ummhmm - I’m often sent home earlier because I have a neb at home (no matter how much I try to drill in to them that it’s only for emergencies not maintenance treatment!) I wish they could come up with a plan for me if they say ‘well because you have a neb at home...’, a reducing regime would have done it! It’s nice having one for the reassurance/ability to not go to the GP daily if I’m ill, but hospitals can take the piss with them!

Yes I love a good night ECG - what’s brilliant tho is today my HR is 106 or lower (got down to 87 earlier!). I do love the randomness of hospitals too - I’m worried about x, you need y, but it never appears then you go home!

I think I need a measure which you can’t cheat! I know if I hit 30% PF I can just take my ventolin and get it back above 50 so why should I bother going in? 😂 FEV1, whilst having a similar response, possibly would demonstrate to me that there’s an issue - who knows 🤷‍♀️

Yes - it’s so frustrating how variable docs can be! Some are brill and on the ball, others don’t know jack! I agree that you need to be able to walk, if they want you to go home!

Might see if I’m allowed to escape the ward for a Costa today. I should be allowed! 🤞🏻 x

Reply

Lysistrata

in reply to EmmaF91

4 months ago

lol I don't think the forum helps! I have mentioned it's confusing...

Yes I wasn't on the resp ward this time - gen med, I think resp ward was being refurbished or had no beds. Meant I had to be vigilant about PF taking myself. The junior on HDU actually had no idea how it worked lol and nor did the first nurse on the ward - very good otherwise. Crossed fingers you get someone nice in the other bed and NOT on monitoring or an IV (beep beep BEEP BEEP BEEEEEEPPP! SOmetimes it's me lol too).

Ooh is there an accessible Costa? It's nice to be able to get off the ward or at least out of the bay isn't it? I discovered a day room on the ward this time which was nice with a great view (there was an elderly guy in there on the last day and I had an interesting chat with him). I couldn't make it there until the last day or so though as even the bathroom too much hehe. My baymates kept going downstairs and outside for a cigarette and talking about the weather grrrr - there was part of me that couldn't help disapproving the lung abuse given I've never smoked and was stuck there on the ward!

That is such a sensible cons, can I clone him lol? I feel like when I meet/hear about good drs I need to clone them so we have more of them and fewer of the rubbish ones. I do think they could give you a plan with the home nebs - it's completely possible to use them sensibly as a tool for home management not just emergencies and I know people who do, so I don't get why they can't do that for you - obviously you are sensible!

I don't know if the FEV1 would work given I'm just like you - oh...that's low...let's have lots of Ventolin...oh it's come back up! Problem is I'm used to PF being ok and FEV1 not being ok and now even when the numbers are off, unless I also feel shocking I tend to rationalise it away!

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EmmaF91

in reply to Lysistrata

4 months ago

😂

Ah! It’s not nice when you’re not on a resp ward - I once ended up on an abdo surgical ward due to a lack of beds, and had to teach them how to set up a neb - not exactly reassuring 😅 - tho at least they knew what a PF was 🤨! Also the other patients rarely understand what you’re going through and why you’re noisy at night!

I usually ask for my own PF chart (even on resp ward) as I find that if I have to wait for the nurse I’ll forget it!

Oh the beep, the beep, how it keeps me from sleep, how it drives me insane, when the moon wanes!!! Yes I’m hoping for no monitors/drug drivers tonight!

My hospital has a ‘shopping’ court with a costa, subway, 2 other food places, a book club sort of thing, a fruit and veg stall and a miscellaneous small shop (?WHSmiths). It’s at the main reception so if they think you can get there and back they let you go (only if I take my vent and phone with me JIC!). Luckily cause I respond so well to nebs (and am very stubborn about not giving in to my body!) I’m rarely bound to the ward for too long. On my 10 dayer I went stir crazy about day 5, so despite still being ill, I left the hospital to go to Tesco’s opposite (different hosp). Arrived back with low sats (90 😬🤫😅), low PF and a telling off but felt a lot better for the little freedom I got!

No day rooms here 😒. And I fully appreciate the frustration of being stuck inside when the smokers are going out and almost taunting you with it 😂

Yes - there needs to be a consultant copier/faxer so we can send a good one to every hospital!

Brompton won’t let me have maintenance nebs as they know I can be fully controlled, not need ventolin and be completely asymptomatic! They’re trying to get me to that point year round, not just a month or 2 a year! They only suggest maintenance nebs when they know there’s nothing they can do!

Curse our rationalising, ostrich brains! I feel like I need an alarm attached to me that goes off when I should head to hospital! Then I wouldn’t ignore it/justify it!

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Lysistrata

in reply to EmmaF91

4 months ago

Any sign of the drs yet? Naturally your lungs will behave then - they delight in being awkward! if they're getting to know you and you needed the nebs though then hopefully they'll pay attention and not chuck out yet. I kept getting told this time 'well if you had a neb at home...' - they were really hot on the 24-hr rule because I *don't* have one whereas if I had done I think they could have given me instructions on using it. The nurses kept eyeing me and offering me a neb all the time then saying 'I know you want to go home but there's no use if you get worse and need a neb there, you don't have the magic cupboard do you?' LOL Sounds like they could at least give you some better instructions for using the home neb - would have thought it was reasonable to have a tapering kind of plan for when you go home, with the usual instructions to head back in if you need it more than that. But then you seem to be more responsible than them with it... 10 day one sounds horrible.

ECGs hours after they say, what fun! I still find it funny that they completely forgot last time - they were getting their knickers in a massive twist about how much I was scoring due to HR but didn't do one at all lol. Not that I was going to remind them...

lol yes I do like my gadgets...though they are not as colourful as your PF meter hehe. I got this one because there is such a gap between my PF and my FEV1 when done officially, and I had an old basic meter that did both and started to track it, but it broke. If you just looked at PF it is up and down but looks ok whereas the FEV1 helps me realise I'm not imagining it. My peak flow won't 'plunge' but my FEV1 can get to levels where even I start thinking hmm maybe I should do something about that (eg 30% predicted after a scent attack the other week - though I didn't do anything as it came up again). In other countries they use FEV1 more than peak flow in attacks and it's in the guidelines, which I think would be useful for me. I might take my gadget in next time - no chance this time as I was at work. I did once tell a dr in A&E FEV1 was about 35% predicted before I came but she didn't care - she was using my predicted PF even after I told her my best and had decided that my lack of response to nebs with it just meant I was fine, didn't need the nebs and could go home! Luckily her boss felt i should be able to walk out of the bay for that and I couldn't.

Crossed fingers for a sensible plan and better reception...

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EmmaF91

4 months ago

Nah - too many mag bags does the opposite as it relaxes the airways to the point where they can’t maintain their shape (my specialist centre don’t like their asthmatics having them at all, and the max is 2 a month so...). I’m not allowed amniophyllin cause I’m prone to unexpectly going toxic (and Brompton just stopped my uniphyllin cause of the HR issue 🙄) but I’m glad it worked for you!

If my potassium’s low they usually give me a saline with potassium mix. I’ve never had Sando K tho so I wonder what it does 🤔

Yes, all my ‘emergency’ docs love my summary! It makes life so much easier for everyone when you don’t need to remember/repeat everything, and they can walk off with it to make up your med chart etc 😇. They also like my Rasta PF meter cause they can see straight away what zone I’m in 😂 (lazy like me and don’t want to do maths all the time 😂). Have yet to get someone who completely ignores it so touch wood I won’t! I completely understand the frustration if you have had that tho!

Yes, exactly! For me it’s usually a slow build, that I try to treat at home or else I’d be at the GP every day and the hospital every other. And its such a slow build I can ignore it as it worsens and having lived at 50% for a year+ I don’t always recognise when I’m hitting ‘danger’ zone unless my PF is very low and I can’t get it back up!... I go somewhere when I feel like I need it or when others prompt me to!

I hate it when they send you out, without following protocol (ie 24-48hrs post neb). My last inpatient (1 night) I saw the doc 1 hour after a neb, chest clear, PF 75% so he sent me home. 2 days later I knew I was worsening again but put off til now til returning. If I had stayed that extra day, would it have stopped me going back 2 weeks later just as bad? 🤔🤷‍♀️

Nah don’t worry about it - I love a good ramble! I’m currently 🤪 from the meds (and the mag/nebs have given me a headache 🤕) so any distract is fine!

Waiting desperately to get to a ward so that I can charge my phone which is currently at 3% 😬

Thank you 😊

Ps just found out I’m meant to be on 2hrly nebs... maybe I won’t be out tomorrow (then again maybe I will 🤨). I had to ask for one at 7.30 cause I had dropped from 75% PF to 55% and I didn’t think they’d want me to revert to red zone again 😅

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