Off for my AN appt at the hospital today. Finally got myself to a point where I think they’ll let me home again after, but a 10 o’clock appt meant catching the 7.30 bus and getting up 60-90 mins earlier than normal... get up and PF/meds then do normal daily routine... cough cough cough, squeeze squeeze, gasp! Yesterday I just coughed a little in getting up (to shift the gunk 🙄🤢) today it was so much my PF dropped AFTER my meds 😒🙄😅. Rescued it with ventolin, but really lungs! I know it’s early and your tired, but we all have things we have to do but don’t like doing! 😂
Has anyone else found that an change in morning routine has changed your lung response?
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EmmaF91
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I find that all sorts of things affect me first thing in the morning. Not so much to do with routine, but temperature, stress levels, food/drink from the previous day, how well I've slept, probably any dust, etc. I might have breathed in. I know stress is definitely a factor in how I breathe, so maybe just the fact you were rushing around set you off?
I think I’m blaming the slightly colder weather in the morning for it... wasn’t particularly rushed or stressed, just doing things half asleep 😅 - I did not want to get up!
The cold is definitely an issue. One of the curses of my life (possibly lung-related) is that in spite of feeling perpetually tired, I always seem to be wide awake by about 5.30! The number of times I promise myself a lie-in then end up eating my breakfast an hour before my alarm was set for...like this morning for instance!
I struggle to get to sleep, then wake up at 2ish and 4ish (when lungs are/have been acting up). Once I fall back to sleep my body ‘resets’ my sleep cycle and I can easily catch 6 hours after my last wake up... if that’s 4 I naturally want to wake up 9.30/10 if it’s 5/6 it’ll be about midday... it’s a pain! During the night I wake up wide awake, but when I have to get up in the morning I’m shattered cause I haven’t finished my sleep cycle 🙄. I think life would be easier if I worked night shifts!
I'm hopeless at sleeping generally, but it is worse at the moment as I'm fighting off a bit of an attack at the moment so am on more steroids than usual, plus coughing a lot all night.
Ughhh yes! 😂 my lungs are particularly grumpy at the moment!
Managed a lovely few days in center parcs without too many problems, then stayed in a hotel overnight in Cambridge to break up the trip back to Leicester and something in the room has obviously deeply offended my chest 😂 they were extremely stroppy last night!
Glad you managed to enjoy centre parcs! Maybe you’re lungs were just overly tired and throwing a toddler tantrum 🤔😂. Hope they’re behaving a bit better now!
Well I’m here an hour early (by bus 🙄) so got enough time for my lungs to recover from the journey as much as they’re going to! I’m hoping they’ll see it’s just the end of a virus even tho I’ve been living more in red than yellow the last couple of weeks 😅.
Definitely head back up if you think that’ll make them behave (and you’ll be closer to *your* hosp) - threatening them with a trip and they’ll good as gold! I’ve preempted them misbehaving by packing PJs and a change of clothes in my bag... going on the plan ‘if I have them I won’t need them!’.
Mind you addenbrookes is a resp specialist hosp so possibly more likely to do the right thing if you do end up there!
True! But have my next xolair on Monday so if they keep being stroppy I need to be in Leicester really 😂 plus as you say, normally the threat of a trip shuts them up! (Especially as my last a&e trip resulted in a lot of failed abgs and having to have the sample taken from my brachial artery with the ultrasound!)
Hope that your plan of packing so you don’t need it also works - good plan on the arriving early for recovery time too
Oh I hope you hold out til Monday then! Ouch for that ABG!!!!
This hospital isn’t convinced I should be stopping mepo, esp as my FeNO is 95 despite being on 35 pred. They think I should switch biological, however should stay on mepo until the new ones been approved.
The AN however does think that I should be ok to go home 🥳. She’s gone to talk to my consultant about a plan esp after looking at my PF diary (oops 😅), then I’ll be on my way (hopefully 🤞🏻🤞🏻🤞🏻)
At least if I end up in in Leicester they can come find me on a ward to give it, rather than ringing them on Monday like “yeahhhh I’m in a hospital 90 mins away” 😂
It was weird! I’d say it was less painful than the wrist but you could feel the pulsation of the artery against the needle which made me feel a little 🤢
Ahhh yeah, I guess it probably makes sense - they don’t want to take you off it and then find it takes another two months to sort the new one. Hope they do indeed let you escape!
LysistrataAdministratorCommunity Ambassador• in reply toJs706
Ugh stupid lungs! Never specifically had issues with change in morning routine but mine can and will take offence at anything and nothing! If I have to go in, they ask me what triggered it and I often have no idea! Glad you made it to the AN appt Emma though ugh time on a Sat. Will you be acquiring a car in future to make things easier? Hope cons is helpful. The mepo plan makes sense - presume you have seen benralizumab was just approved?
Currently sitting here with them really kicking off but I SWEAR to a degree just short of me feeling I can do anything - texted asthma nurse last week twice (over 3 days) to keep them updated and they said thanks for letting us know but I also know there's nothing they can do - grrr. I didn't want to go in as it's a trek and they don't really have anything to offer given pred mostly doesn't work. If I go to GP they either tell me I'm ok or I'd end up in local which can be, err, variable and I'd get kicked out by day 2 even if I had to crawl out lol, if I made it past A&E (which, last time aside, is usually ok but the chief resp is a PITA). Wonder how long it has to sit here before I can do something? The 'I'm no better after days' is always hard to explain! Hoping it just goes away as obviously would prefer to avoid Hotel NHS entirely.
Oops sorry for the rant on your post! Jess sorry to hear your lungs are stroppy too - annoying when they interfere with plans! I hope you can stay out entirely but if not local is probably easier esp with the Xolair.
Was definitely an allergy to something in the hotel room! Taken anti-histamines, 10 puffs of ventolin and having been away from the room for a couple of hours my peak flow is now back up at 420 - which is where it was yesterday morning! BIZARRE. 😂
LysistrataAdministratorCommunity Ambassador• in reply toJs706
Ugh but also woop for getting it under control! Are you still heading home or deciding you can hang around a bit longer now?
I know!!! My Saturday lie in 😩. Now I’m more stable I’m going to start learning to drive again... stopped pre-uni (got to the stage where my instructor said do theory so can do practical) cause couldn’t afford car and didn’t see the point of passing then not driving for 4 (cough 7) years. Now I’m not focused so much on ‘breathe in, breathe out’ I think I’m safe to start again 😅.
Yes - last Brompton appt they were debating reslizumab v benralizumab for me... don’t know what they decided to go with tho 😅.
Oh I hate that stage! Technically I was in that position for 2 weeks, finally got ‘bad enough’ and sought help (GP prompted 😅) then reverted back a couple of days later 🙄. Only not worried cause I know mines all caused by a virus which is slowly improving - this is why they didn’t keep me today.
Good luck and I hope things start to calm down for you soon (or flare enough that you feel like it’s worth seeking help - try not to ambo from work tho 😅)
No worries! I feel I rant in others feeds often enough 😂
Ugh yeah that awkward middle stage is so annoying, sometimes it’s almost a relief when you deteriorate enough to go in in a bizarre way 😂
Yes also sorry for ranting on your rant 😜 although I think you, me and lysistrata are regular ranters on each other’s threads now 😂
Enjoy the nap Emma!
LysistrataAdministratorCommunity Ambassador• in reply toJs706
Yep I do actually welcome it in a way since I can't do much in the limbo period, given pred isn't much use and GP etc do nothing, pred or panic lol.
Gave in yest and headed in. No.ambo from work at least! Bit stingy with nebs and didn't see dr till after 2 hours in majors when they sent me over to resus! Nurse in majors gave me a saline neb to reduce HR which is still puzzling me as not sure how it could - any ideas?! Think that made them think I had more nebs than I did ie salb and atro. They were going slow but resp reg who happened to be on as med reg decided to give me mag on ward thankfully which has improved things a bit. Sadly she will not be around in the day as seems sensible ans listened to me saying that the best way to bring my HR down is to treat my asthma hence the mag which the junior was more conservative about.
Better at rest but still struggling to.move. Nebs have been prn and really really hope they actually let me transition off properly this time and don't just decide I'm fine because I'm ok in bed - this hosp has done that too much. Needed one at 4am (the witching hour lol) then had dip soon after when not yet allowed another. Randomly an unspecified person closely resembling a critical care outreach nurse turned up.in the middle of the night and told me.to relax (didn't say who she was but met them before and the uniform matches) - unsure why as this is not the worst and kept getting told they weren't concerned!
Crossing fingers for someone sensible in the morning. I don't want to be in of course but need to be able to err move!
Hope you enjoyed shopping Jess and Emma hope you get a nice lie in today to compensate for yest! I too am very protective of my Sat lie ins so.maybe glad there are no weekend clinics at my hosp...
LysistrataAdministratorCommunity Ambassador• in reply toJs706
Update: in till at least tomorrow on regular nebs. Hoping to ditch the monitor soon but may be wishful thinking given the team caught me coming back from the bathroom and set off the alarm at 160+ lol. Cons seems very sensible and is endo so seems to understand hydro
And also not chucking out too soon! Hope she is around tomorrow but you never know after weekend. On 40mg pred har har, wonder what that will do. You never know, might be some Type 2 inflammation lurking...
Oh no 😩 - tho at least you avoided the work ambo situation again 😅. Sorry to hear about the neb situation... hopefully they’ve got you sorted now! I can’t work out a connection between saline nebs and lowering HR but tbh my brain is not working well today (mepo migraine day 3). Glad you managed to get what you needed however, even if it was a bit slow. Hmm maybe they were more concerned for you then they were letting on or you have a flag in the system (CritCare please visit this pt if she’s admitted! 😅)
Hopefully you’ll be out when you’re ready to be out... not too early and not too late! Hope you’re starting to feel better x
Thanks! Ugh to the mepo migraine, hope that goes soon and you can get on another biologic soon!
My friend said saline can help with secretions so maybe nurse thought help chest and help heart that way. This is logical but doesn't take into account that no one seems to remember asthma can cause high HR and I usually have to.remind them! Got asked by reg if mag lowers or raises my HR as apparently can do both - said definitely lower and thankfully got it! Though still on the monitor grrr.
I think I do have a flag because of being in HDU in Oct, though in June they were summoned by mistake due to reading VBG as ABG, but then came to review again later even when this.was explained/sorted. Have no idea of thought process as my local never did this even for worse attacks than Oct, and they are a reasonable size London hospital who take me seriously most of the time till I.meet the resp cons!
Seen asthma physio who does the asthma nurse stuff at weekends and she said am.still quiet and carry on reg nebs till tomorrow. Apparently my asthma cons is on the ward round tomorrow. This should be a good thing but I am irrationally scared of him and due to past experiences with other cons, am convinced he will decide I am fine and no need to be here, why did I ever come? So not prepared...was hoping for pep.talk from asthma psych before seeing him in clinic lol.
Thanks - paracetamol and heat seems to be helping but just want to sleep it off 🙄😴 - still waiting to hear what the plan is as the AN never rang me back yesterday!
I know saline nebs help to loosen mucus (use them myself on occasion when I need too) and saline iv can either raise or lower your HR and BP but can’t see how neb bing saline will help HR unless there is a small sodium deficiency 🤔🤷♀️. Maybe someone else will have an answer 😅. Very few people remember that fact... it’s always blamed on the drugs on the condition! I was astonished yesterday when the HCA doing my obs outright asked me if my HR/BP was high cause of drugs or cause of asthma or if it was just my normal! She got a gold star ⭐️ (answer - a bit of everything plus virus on top!)
It’s so confusing how every hospital works differently and has different criteria’s for things! I’ve never been to ITU/HDU but have been literally seconds away from intubation with dodgy ABGs,yet discussing this with other hosp docs they would have sent me there at least overnight. Some hospitals insist on resus for mag bags, others will do it in majors, most connect you up but I’ve had mag with no monitors before! I’ve had critical care find me without being asked and ‘take charge’ cause they deemed my treatment unacceptable, but at the same hosp got sent home after 2 nebs, despite raging bacterial infection with bilateral crackles/global wheeze (and I suspect looking back the start of silent chest), no abg and PF maxing out at 55% post nebs and told by an ACP not to come back as they couldn’t do anything more for me! It’s so bloody variable! Either you get different procedures or different staff and you can’t tell what’s up from down!
Glad you’ve been seen by someone who knows what’s what at least! From someone who’s only met you through the forum... you are in the right place, you need to be there and you know you’re body! If you didn’t need to be there you wouldn’t (as you live in Egypt with me and Jess!)! Also if the physio says you’ve still a bit silent then he shouldn’t send you home as he has an independent, objective ‘witness’ to your lungs being difficult! Explain exactly what’s gone on and throw in examples from the physio if you have to, but you’ll be fine!
Hope the nebs are helping and that your lungs start to behave soon! X
Wow to HCA! I get the odd person who gets it and want to give them gold stars too. I put it in my summary which helps as otherwise they go nuts. Well they don't like it anyway but makes it easier to persuade them to give me the good.stuff on the premise it will help.
I wonder if nurse was getting mixed up with IV saline too but that is because you add.liquid to the system! Thankfully none of that this time as it makes me.need to pee then HR goes up etc - vicious cycle. Also still convinced it landed me Sando K in Oct. Just glad no D dimer nonsense this time. Worried my cons will blame amino.tablets again so need to tell him is normal at other times.
I hope the psych has shown him the thing about ideal appts I wrote as she said she would share with my permission and it has stuff about discharge I wouldn't feel able to.say.
Yes it is so variable and infuriating! I get tempted to go to my local at times for convenience but I think they are more likely to treat me.like a normal asthmatic eg do ABGs and bang on about hyperventilating. I can tell others on here that is consistent with asthma but still don't believe it when I have one! Hate ABGs less for the pain than being 'exposed' and not believed (They do VBGs here initially and commented mine ws very oxygenated but did at least ask if it was on O2 which it was as taken on O2 driven neb - had a dr before who said oh ABG was so.perfect I thought it had to be that which was very reassuring). The junior here suggested they are guided by me ans I said 'because I'm.a weirdo?'and he said 'well in the nicest possible way...'lol. Hope I am not proved wrong tomorrow! Wish I could say I can't believe they sent you home like that with infection but sadly I very much can. Would be so much less stressful if we knew they would always do xyz.
Lol yes that river is getting crowded! I still hang round if I'm at home as I feel it's hard to make the decision. The work trips helped me realise it can be legitimate to go in even if I was ok that morning - it can be easier for someone else to make that decision!
I know right! I don’t know what I’ve don’t to get such a good hosp (so far!) 🤩🤩🤩. Summaries are so useful - I’m convinced that the only reason I got hydro last time was cause it was on my sheet and I had an ACP I’d had before!
Oh the old ‘liquid in, liquid out’ equation 😂... hold it in til you set monitors off, then ask to go to the loo 😉😅. Ewww Sand K - only had it once but yucky!!! And yay for avoiding the D dimer cycle of hell! If you know it’s not the amino then they should listen (esp if you have a Fitbit or whatever that records HR!). I had to stop my uniphyllin again as I knew it was causing issues (day 3/4 I got really tachy with palms 🙄), but at least I knew for certain it was that drug!
Fingers crossed he’ll be all prepared to deal with you 😜. Oh I love it when they do bloods/obs when you’re on O2 then tell you you’re fine 🙄😒🤥. TBH most of the time I’d rather be guided by me than the docs... usually I know what I need anyway and get to avoid the neb waiting game! It’s when I get asks 100 or 200 of hydro, do you need a mag bag? Erm 🤷♀️ how bad do I sound atm? 😂😅. Oh we’re all weirdos here (or as I prefer to say VERY special!).
Yup that was the one where I was told to neb at home if I needed too. Went 4-6 weeks of 2hrly nebs before I went back in, got sent home again (after a
mag bag but no hydro), declined overnight and had a breakdown on my GP the next day (who promptly gave me a ‘I behaved for the doctor’ sticker and sent me back to hospital again 🤩😅). My worse admission tho was the one where even now I think I should have been in ITU/HDU... hosp acquired infection with ABG showing hypoxia, sats at 94 on O2, dropping to 89 when off of it, regular back to back nebs overnight, then the amu doc tried to discharge me, and struck off my salbutamol nebs when the nurses wouldn’t let her - I think I was the first time I felt unsafe IN a hospital... literally almost took myself back to a&e! Finding a hospital that seems to religiously follow the asthma guidelines is a massive relief! I basically know what I’m in for.
My deciding factor now is always my neb! It’s rules are a godsend to me plus mentally I can tell myself it’s worth going in cause nebs aren’t working/lasting!
I’m hoping they’ll call and leave a message as I’ll be at work 9-6ish 😅. Hope things are improving at your end! X
Oh no just caught up sorry to hear you ended up in but sounds like it was the right decision!!
Glad they seem to be fairly on it this admission too - hope it goes alright with your consultant tomorrow!
Ugh I had a similar experience to that once Emma, they managed to get a bit mixed up and thought clinic wanted me observed overnight whereas in reality I had been sent down from my xolair clinic because I was having a fairly severe acute attack! (Peak flow dropped by over 100 from arrival to them checking again about half an hour later) got up to a resp ward having only had 1 neb and kept complaining of tightness etc all evening.
They kept saying to chill and have a hot chocolate even though I was sat playing games on my phone as a distraction 🙄 they finally gave in and checked my obs at 2am to find “oh dear your sats are 91 and are scoring high enough for an urgent reg review” 😂🙄🙄🙄🙄🙄🙄 then the lucky junior got to try and cannulate a fairly unwell me at 2am to start aminophylline - it’s nowhere near the worst I’ve been but the only time I’ve actually felt unsafe! Even when I was about to be intubated and absolutely terrified I felt safe still! Moan over 😂 got to love being an awkward weirdo
LysistrataAdministratorCommunity Ambassador• in reply toJs706
Ugh both your experiences sound terrible - hate it when they get it so wrong. I have had some chucking outs that felt unsafe and awful (like the time I asked a passing nurse the way out when I could hardly walk and he wanted to direct me back in!), plus they used to leave me in a side room down the end and ignore me for hours. Always a delight though had one dr who came after neb had worn off and I had attempted loo trip just across corridor - he pitched a fit, said no way side room appropriate and carted me.off to.resus. I feel very forgotten about in those rooms.
Emma ugh to the hosp encouraging you to use nebs like that!! And they think we can't be trusted...Yep think it would be easier with a more definite plan. Would love your current hospital, hate The uncertainty of not knowing. This one likes to change their minds through the day which I find very stressful. I don't always trust them when they say they will be guided by me as they say that then 2 hours later say I can go home now without checking in on me again. I prefer them to decide at the morning rounds.
Emma yes I plan to use Samsung Health data though hope they don't ask to see it as may think I am ridiculous using sats app! Glad Fitbits exist - reg actually asked if I used one and could tell normal from that so I was able to admit to checking on my phone. Was worried about sounding like a hypochondriac! Still stupidly worried about seeing cons ugh. All seems so much more at stake if he isn't good.
Yeah I’ve had a few awkward chucking outs and not being listened to etc but that’s the only one where I’ve thought “this could really go wrong!” - in fact I think if not for the xolair (it was a couple of months in to it) they’d have had to move me to hdu at least as was definitely going that way! (This attack was the first one where I really noticed a difference in response to treatment after xolair)
Mm side rooms can be great for actually getting some sleep but if you’re struggling they can be horrible, no matter how used to things you are!
Yeah I find it much easier when they decide on the ward round first thing. Mine nearly always make the decision in the morning, occasionally if I’m really desperate to get out for something then we negotiate an extra review 😂
To be honest I think most drs won’t care about app use as long as you don’t obsess over what it says and go completely by it (which lets be honest you’re more than sensible enough to not do!). Plus like you said with the Fitbit, it can be quite handy in that you can work out your normal on it and know if there’s a difference - like I have a little sats probe at home I occasionally use if I can’t quite make a decision, I know it isn’t the highest quality but I do also know I pretty reliably read 98/99% on it when well so even if the reading isn’t accurate I can at least say it’s abnormal!
I think also when you get to the sort of awkward stage we’re at they appreciate that actually you being able to monitor things a bit at home can help keep you out of hospital/have much shorter stays so hopefully they’ll be a team that thinks that way rather than going “ugh” 🙄 they’re also much better in Med schools about trying to point out that patients with chronic conditions are the experts and to listen to them more (which admittedly doesn’t necessarily help us yet but should do in the future!)
My lungs just look like they’ve been on a roller coaster since the new year haha, managed to recover in response to triggers but my peak flow has gone from red to nearly normal in 24 hours twice I think on my chart for January so far 😂 weirdos
This sounds like a sleep wake-up problem. Sleep switches off much muscular activity. Over the period of sleep the feedbacks to the brain are different. Upon waking up the brain is having to re-learn how to bring muscles back online. This takes a little time.
The proprioceptors rely on changes to provide feedback. You need to allow time for things to work better. What is time and what is better. This is a matter of investigation by the person with the chronic condition.
No, but I do find that my pf reduces for a short while after taking my inhaler, say half an hour or so. Then it goes up for a few hours before descending again.
I assume you weren’t kept in?
Oops, imhadn’t seen all the other comments before I wrote that.,glad you got out.
You have already had comments, but I feel the need to add this: Emma, I am actually in awe how you and others with severe asthma manage! Here I am, sitting in my bed, a moderate asthmatic I would call myself, a lot better, but still recovering from my latest Christmas/New Year bout, and it all as usual has knocked me sideways. It has to be said that no one at all would call me ‘young’ these days, with good reason, so of course I need to take that into account, but the way you and the others just cope! ( I could name some user names I have learned, but just feel included if you happen to read this.) You going on that long, early bus journey to an appointment not knowing if you would be kept in or not - if I was bad enough to be considered for admission I could not have managed that. And then the way you, and others, are so generous with really useful information, as well as lots of silly, hilarious comments! I suspect you have no idea how helpful all that is! So, all the best in your new flat, new job (congratulations!) and to that driving licence! I really hope it all works out well for you, all this new stuff. And I really hope your lungs learn to behave better!
I think it all comes down to each of us learning how best to deal with our own situation (or playing ostrich til our tails on fire!). I was so bad for so long that it takes a lot to worry me when it comes to breathing, and I have learnt to be over-prepared to preempt issues (last admission I wasn’t expecting it as didn’t feel too bad... 3 days in the same set of clothes and boy did I feel scummy 😂)! It’s what you get used to... I know I can live at 50% cause I’ve done it, but to people who have never had to then 50% is scary and they are doing the correct thing by getting help - unfortunately for me if I sought help every time I took 10 puffs or dropped to 50% I’d have a long-term lease at the hospital/GP surgery!
I feel that you have to play with the cards you’re dealt in life, and if you get a crappy hand then you can either keep playing with a smile or throw them at the wall... I tend to take the passive/sardonic approach but there have been a few tantrum moments! I’m also VERY stubborn... unless I know I should be in hospital, I will do what I want to do! If it makes my asthma a little worse or means l need to take more meds or I get a headache or need to sleep the next day, I’ll do it! It’s stubbornness that made me graduate! 😂
For me, I went through a lot of this with little or no support and have benefitted so much since joining the community I want to give back as much as I can (through advice, examples or just helping to find asthmas silver lining!), so I’m glad that I don’t annoy too many people and that you (at least) find my rambles helpful 😉. I also find it useful to remember that asthma is different for everyone but well all go through the same experiences! Whether you’re (unfortunately) worse than me, or (luckily) better, we can all get thrown by new meds, stressed/anxious if we don’t feel were being listened to, feel a fraud if seen by a ‘bad’ medic, and struggle if we can’t breathe! We all need support, a few kind words and something to make us smile and remember that there is life outside of asthma!
I hoping the sea air will help my lungs learn to behave (even if they are now in a slightly colder environment 🙄), and that putting them in ‘timeout’ at work (I have a 15-45 min break every 90-135 mins) will keep me working a job I love ☺️. Here’s to learning to drive as the next on the list of things I’m going to do!
I have recently started drinking several cups of (no milk) herbal tea a day. I am now addicted to Spiced Ginger which can be bought in Tesco. It really clears my tubes with no coughing. I have tried a lot of "infusion" teas of late and like 3 Cinnamon and Turmeric but Spiced Ginger and Peppermint tea are great.
I did not like tea or infusions before and was a black coffee guy. Now? It's wake up too Spiced Ginger which helps with my Relvar and Incruse Ellipta powder inhalers.
I always drink a glass of Vitamin C and Zinc every morning too. They are available in Boots and are sugar free. I was recommended this by an Asthma Nurse who had asthma. I can honestly say I have not had any crippling heavy colds or flu in about four years.
When you say ‘sugar free’ are they also sweetener free? It sounds interesting, but with sweeteners I just wouldn’t as I can stand the taste. (Can’t understand why sugar is always replaced with sweeteners, rather than just left less sweet or not sweet at all.)
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