Ok, so I'm brittle, range from *ok * to dreadful. Best ever pf is 650, but use 600 as a marker as my team has seen this recently. Worse ever pf has been <80, during a "" life threatening"" attack.
I got out of hospital 2 days ago after 10 days in - 9 of which I was on IV stuff. My discharge letter isn't pleasant in what it says, but true. It also says I leave getting help too late through not wanting to take up A&E time or have unnecessary visits unless absolutely necessary. But that they would strongly advise getting help earlier and to seem immediate medical attention should I become symptomatic again post discharge. They weren't happy I could manage at home.
So today I've been to the gp , unfortunately not my usual to inform that things weren't good and that then were only going to get worse, but that I didn't want to do a&e. Up until then my best pf was about. 50% and my worse around. 18% but She wasn't concerned as I wasn't blue?! Lots if other silly things said also.
Since then I've had yet more nebs and I got a brief pf of 60% but not had that since.
I just feel as though I was really told off for how long I leave help, but then if I'm going to be dismissed, why get help?!
but you don't have to go to your GP, - with a pf of between 18 and 50% it would be more appropriate to go to A&E... GP's aren't really for those kind of emergencies, the best they will be able to do anyway is give you a neb and pack you off to A&E in an ambulance, so you may as well go straight there. The sticking point seems to be that you don't want to do A&E, which is what the hospital have recognised and are asking you to reconsider. Given that you told the GP you didn't want to got A&E, and that their options are limited in the surgery, do you know what it is you would have liked from them?
I have never ever gone to my GP when I have been acutely unwell, it has always been straight to A&E for prompt treatment. And Im betting that if you had gone back to A&E you wouldn't have been dismissed. But I think you know that
So, if things don't improve, what would be the sensible thing to do? x
The sticking point is definitely A&E - I can't go to the one where my team is based, I just can't!!! But then I don't want to be accused of ""hospital hopping"". What I hoped for from my gp was that she would give me a bit of a break from A&E and admit me straight to medical assessment or something.
I've been worse, and at an uncomfortable, but not dangerous level and I thought that if she did this then it might be a case of in, treatment and home quickly, rather than the 10 day stint of recently.
Instead she said that sats were fine etc. I know I'm quite atypical in that my sats don't drop overly, especially when I'm working really hard, but when they do they really do and something needs doing NOW, they also take along time to climb back up.
I have a clinic appointment next week - hoping my cons has some bright ideas about how he's gonna get some control as can't keep doing this. Though worried about this as the gp said she was going to email him about today's appointment - what if he is dismissive?! Though don't think he can be with my most recent discharges?!
Sorry, ranting, just sick of my lungs acting up the whole time - stupid things!!!
I WILL go to A&E when the time is right. Too early at the min and hoping it settles down a bit over the weekend!! Going to sofa surf and take it very easy!! Laura x
Do you have a pulse oximeter at home? If you do then you could use that as an indicator of when you think things are bad enough to get help...?
I don't really understand and I apologise for this...if you are symptomatic and are poorly then isn't it better to get help quickly so things don't get terrible and your recovery time is less...and I do know that sometimes A and E can be dismissive and not treat as we expect but if you take you last discharge letter with you stating that you have had a life threatening attack and that you need prompt treatment then if they ignore this, is it not negligent???
If your GP felt that you were well enough to stay at home without direct admission and things have got worse since then the only option you have is to go A and E and seek treatment. When I see my GP he always says if I get worse or my peak flow falls beyond a point then I should go straight to the hospital and I think now that I would rather be dismissed and reassured that things are not bad than risk not getting help in time...Having a life threatening asthma attack is not something that I wish to repeat, having been intubated on more than one occasion due to this, and therefore even if it means doing something I don't want to do I will do it...I am in the situation often when I don't get time or warning to avoid my attacks deteriorating rapidly
I'm not in as frequently as you (although my lungs r giving it a good try) but I think we r prob around the same severity and atypicalness and this is what really causes the problem!
I totally get your not wanting to go to AnE, they are horrible at the best of times but if u get ""know it all"" drs then it makes the whole thing just much more stressful.
There are a couple of things I will suggest- write out on a piece of paper all ur meds, dosages etc ur best pf, and the usual med routine that works best when your unwell. It might look a bit pushy but it has worked really well for me and actually AnE staff appreciate it now and it saves time.
Could you ask your cons for an AnE action plan? I had this from a previous cons I went to a different AnE from my resp team and he gave me a copy as well as a copy for my notes in the hospital I usually attended and this helped a lot and drs kind of had to pay attention because it was from another Dr.
Could u ask ur cons whether direct admission to MAU is possible? Here there is an admission avoidance clinic that gps can refer patients to so they are seen by the medical team at the hospital if u need admitting then it's direct to MAU no AnE required.
Unfortunately these won't help you today but I really do think you need to bite the bullet and go to AnE!
I know it's miserable but it's better to go now before you get to the life threatening stages, give yourself a chance!
Let us know how ur getting on
Hugs again
Becca Xx
Hey, just to reassure, I am ok!! I do know when I need to get help and will do when the time comes!! I've never left it late enough to need intubating - the worse has been non invasive ventilation, so never been unconscious as a result of my asthma!
Yeah I have a pulse ox at home, but I use it more to see what my heart rate is doing than oxygen sats, because my heart rate even post neb stays decent until I'm really struggling, if I left it til my O2 dropped it'd be It'd be too late. I know my asthma well and therefore will seek help when I know I need to
A&E are usually really good, but it's the bad experiences that stick out in your mind isn't it? It's one thing me putting myself in danger through making silly choices, but it's another when medics and A&E put you in danger.
I'm not as bad this morning, as did manage some sleep and not used as many nebs as i did through yesterday. Pf still leaves something to be desired, but it's first thing in the morning so it's never good! I'm also talking better than I was yesterday, so hoping the extra pred I took yesterday and the day before is kicking in!! My family are good at noticing when I am struggling and they won't let me leave it. So a chilled out day, on the sofa, with my dogs and trashy tv is called for just crossing fingers that it stays at this level or improves I'm not doing another 10 day admission any time soon!!!
Fingers and toes crossed for you, I hope you improve very soon! sounds like an alright day actually lol
I'm actually board out of my tiny little mind already, I being deceived by my lungs cos when I'm sitting still, I feel not too horrific but it all falls to pieces when I get up hoping to be moved out of ADU today and onto the resp ward.
Xx
Laura my dear, you might not want to hear it but you have already been told that you leave it too late to seek help, and you have also said the same yourself previously. The fact that you haven't needed intubating is not an appropriate yardstick! Nobody likes going to A&E but the simple fact is that the sooner you present there, the quicker they will get you sorted. You said you don't want your next time to be a ten day admission, but the longer you leave it, the more likely that is - or worse. And yes, there is a possibility of someone being dismissive - but if you deteriorate suddenly you are in the right place for treatment. I think your judgement about what is dangerous is completely off kilter because you are so used to being unwell, and it's causing you to take risks that you don't need to. Why can't you go to the A&E where your team is based? You don't have to like them, I'm sorry if that sounds harsh, it's not meant to - but leaving it too late is why people die. I would hate you to be one of those people. x
Hey Lynda, I really do appreciate your concern, but I have actually improved from yesterday!!! Ie, post neb pf today is 400 - what I was discharged on weds with!! I will go if/when it goes to 300 and can't last 2 hours between nebs as my action plan says! But I'm hoping that this may be an upward trend?!! Could do with my lungs giving a bit of a break tbh! Not doing much today
I know the fact I've not been intubated isn't a good guage, but just saying - it's never got there and don't plan on ever doing!!
But... I'm back at a level now where I can follow what my action plan says .... If it deteriorates will go to ooh and be admitted from there!!
Becca - you do sound quite similar - i so hope they stop acting up and give you a break!! Is the plan still 5 days of aminophylline? It's such a boring drug as they are soo cautious about you going anywhere with it!! I go stir crazy!! Luckily I was allowed off the ward to go for coffee with a friend on the last day of aminophylline last time!!
I like the sound of my day too the dogs love sofa surfing days as they get lots of cuddles!! Plan on catching up on sleep too
I won't leave it and I will follow my action plan xxx
Hmm, update: it seems to be settling down a bit. I upped the steroids on Thursday and it seems to be calming down now. Have managed to have longer between nebs and keep pf above the 50% marker! So a very happy Laura atm!!
Hoping that it keeps behaving and that this is aarker of things improving!! Sometimes I think, it does improve - hopefully this is one of those times!!
Cheers everyone got caring!! Hope you're starting to pict up Becca!! xx
I hope this is the start of a continuing line of improvement
Well they tried to move me to another ward but the cold air and movement seems to have been enough to tip me over the edge ;( when i got to the ward though they were really short with me cos i needed a cardiac monitor! Then i asked for a neb audibly wheezy n short of breath, 15mins later i finally got one. After it had finnished i buzzed Cos it had made NO difference the nurse came switched the neb off and then took the woman opposites paper from her and started reading it!! I wheezed out an excuse me and just looked at me really annoyed. He then left.
I pressed my buzzer again but after 20mins no one had come so i txt my flatmate (a nurse, working in the same hosp today) and asked her to phone the ward and inform them that i was really struggling for breath but couldnt walk to the nurses station- and i please have another neb and possibly a Dr.
My flatmate bless her phoned and went balistic at the nurse who then came and gave me another neb, by which time the nurse who had transfered me was back and took me back down to acute admissions where they try not to kill their patients lol ive had b2b nebs and mag and im now feeling much better
Have to say it was a pretty scary hour or so on that ward!
OMG Becca that's terrible!! Thank god for your housemate and the other nurse!! I never though id say, but glad you're on the more acute ward!! At least they'll look after you properly!!! How are you feeling now? Hugs!!!
I'm still at home, still not too bad and through the day have managed to put longer between nebs I'm REALLY wheezy tonight, but wheezy is good for me - means Im moving some air LOL!! Feel as though I have a huge dog sat on my chest atm, but a definite improvement on yesterday - due a neb at midnight and pf is still >50% and that's leaving 4 hours between them, so very happy about this !! And night like for most of us is my worse time. I'm hoping that post this neb I can sleep!!
Crossing fingers that this *good* behaviour continues ( or improves !!!!)
Hope everyone else is well xxx
Ah no Becca that's awful! Seen your more recent post, think a complaint is defo in order as that's not acceptable in any way. How are you doing now? Hope the IVs do the trick soon...and hope you're not TOO bored!
Just wanted to say I have spoken to Laura today; her phone is playing up internet-wise so she asked me to post for her. She is at home, sounding ok now, is much better than she's been for a while and has had 2 nebs today, and her post neb PF after first was apparently 490; the second one she had when it had dropped to 400 (as while I am not a needing home nebs sort of asthmatic and am not an expert, it seems like using them sooner rather than later, while still being sensible about getting help if they don't work, might be better).
She has a plan for 'if this doesn't work/if it's not settled by x time I will go in'. So am fairly convinced she will be sensible We have discussed this.
Have to admit, I am not as bad as many on here and new to the whole 'crap I don't want to be in' (because it never used to be something that would ever happen) but there's a definite sense vs emotion thing that goes on, I find. I have now been told several times (though I fully expect it to be contradicted because I seem to get told a lot of diff things all the time and my cons can be unpredictable) to get help at a low threshold because it's safer to be told I am fine than to wait too long.
Which I totally understand and is sensible but it can be so unpredictable - the people who tell you this I think assume everyone is as sensible as them with treatment etc! I've been taken into resus and given magnesium and kept overnight when I was initially looking for a walk-in (admittedly I think that one turned out to be on a slightly worse level than I thought it was though not too bad). But another time, with worse symptoms and finding it a lot harder to talk/using accessories a lot more, have been dismissed by OOH and only given nebs because I pushed ('they won't help' -well no, at this point they might not help as much as they could if I'd come before, which I didn't because I am fed up of being told I am fine and why am I there (answer: asthma nurse at hospital told me over the phone that I had to go). However, doing nothing probably won't help much either and I'd quite like to put less effort into breathing and more into writing my dissertation thanks (it was the week it was due...like I really wanted to be messing around with OOH/A&E? And that kind of thing does factor in as we know even when it shouldn't - you start thinking 'but what if I did end up in when it's due?' etc)
So it's not sensible to leave it, no, and I do urge other ppl to get help promptly but it does mess with your head! And as my GP (who nearly sent me back in on Thurs....oops...narrow escape) reminded me, we don't make brilliant decisions in this sort of state. But am probably preaching to the choir here, as a lot of you have been doing this for way longer and know all the emotions etc etc better than me. I'm kind of hoping not to get too seasoned tbh.
Anyway apologies for the ramble...but just wanted to say Laura is ok. And I should go to bed as going back to work tomorrow
I'm glad she's doing better, fingers crossed it continues!
I'm in day 4 of my amino infusion and feeling human again...YAY, off the O2 but still on nebs.
I spoke to the matron of the ward that i was briefly transferred to today and told her what had happened, she was very good actually and took everything on board so hopefully changes are now going to be made!
Xx
Becca91 - so glad you are beginning to feel better.
Took a horrible step backwards this evening thanks to some bleach
Several ABGs, and nebs and O2 later been transferred again to a more monitored bay.
Really really wish xolair would just start to work!
Hiyas,
Thanks Philomela for posting for me you know I do get help when I need to
Ahh no Becca, you DO sound very much like me - smells, perfumes, chemicals, bleach really make my lungs strop, as well as everything else. When I am in and already very unwell, it just takes one of these triggers to tip me over the edge and become really bad again. I tend to stay in the monitored/higher dependency area of the resp ward when I am in hospital - though have many ICU reviews etc. Even when *well* though this is a big trigger!
I am still doing ok my lungs seem not to like the cold outside and seem to throw a strop going from hot-cold-hot and need a fair amount of Ventolin to sort themselves out. But then (that I am aware of!) I haven't had a period today where my of has dropper below 50%, which is definitely a big improvement on recently.
I am tight now, have a busy day tomorrow though and really do need to sleep ... I think I am going to use my first neb of the day to encourage my lungs that sleep is good not that pf is at the 50% mark, currently being at 410.
Just a quick question: does anyone ever feel as though they cant get a deep breath in? Which then makes you sigh/yawn to try and get a deeper breath? But then sometimes your lungs still feel uncomfortable as if you haven't taken a deep enough breath? What do you do to help? Its no where needing to get help or anything, just an annoyance and I wondered if it is a common thing?
Laura xxx
in reply to
Hiyas,
Just a quick question: does anyone ever feel as though they cant get a deep breath in? Which then makes you sigh/yawn to try and get a deeper breath? But then sometimes your lungs still feel uncomfortable as if you haven't taken a deep enough breath? What do you do to help? Its no where needing to get help or anything, just an annoyance and I wondered if it is a common thing?
Laura xxx
That's what I'm like most of the time. I look like I'm permanently bored or tired. Respiratory physios at Papworth teach diaphragmatic breathing to reduce symptoms of air hunger as it improves air entry. It has really helped me - though I still am like it, it's not as tiring.
Lynda
When I have trouble breathing in: I force air out i.e. do several forced exhales. At least for me, I have trouble breathing in because my lungs have filled up with air that is coming in but not going out. But the air is only loosely trapped so if I push out a forced exhale, the air goes out, the lungs are less overfull, and I can breathe in easier for a bit.
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