Frustrated and can't breathe πŸ˜•

So now on the respiratory ward in a side room (assuming so I don't get/spread an infection) and hating on my doc from amu. She struck off my salbutamol nebs before on Monday but the nurses there gave them as asked as I have them at home plus they could see I was bad. Now with different nurses obvs wheeze since 1.30 PF 270(/630)) dropping to 240 at 2.30. 1.30 ask for a neb - saline no help, 2.30 ask for neb - saline no help. Too tight/SoB to use my vent dpi properly and don't have an mdi easy accessed - nurse saw issue but gave saline as no salbutamol prescribed (but have atrovent as regular neb which I can't have any more of) 😫. All salines doing is making me cough up more gunk and worsening SoB cause of coughing. Now 3.30 PF 230 - guess what they've given me πŸ™„. Told them I need salbutamol but hey let's just flog the dead horse.

Last sats check at 10 swung between 88-92 feeling like crap, but cause when I sat upright and coughed bounced to 94/95 for 10 secs that's what was recorded so no o2 either and nebs are air driven.

Not in a good place right now and very emotional - Anyone else awake to give any advice? πŸ˜•πŸ˜’

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  • Hi Emma.

    Hope you Hv had some luck in getting your meds in last hour.

    It always seems worse during the night when everyone else is asleep. Especially as your in a side room I assume in yr own. Keep your door open and use yr buzzer . Don't feel you need to not make a 'fuss'.

    Hope yr actually not reading this just now - because you've actually fallen asleep ! Hope so anyway . Wish I was asleep. ! Take care and get well soon x

  • Thanks. Nope still awake. Just finished my 4th saline neb (why do they have to last an hour? 1 hr spent wasted waiting til I can say it hasn't helped 😫). Luckily could have some atrovent last time so gone up to a 'whopping' 250/630. Still wheezy and SoB, waiting on nurse again. Buzzing them every 60-90 mins after each neb finishes. Yes am on my own, round the back too so takes them 15mins+ to get to me. I just want to breathe and sleep. 😩

    Was like this last night too but luckily got salbutamol so only called every 2-3hrs (after getting 2 back to back each time). Feel like I'm now spiralling to the 'salbutamol not gonna work' point. Sunday night almost got sent to itu - feel like I possibly should have gone and saved on all this happening. Xxx

  • Really sorry your still suffering. I can't understand why they have taken you off salbutamol!!! That's crazy. Mine is still dipping but think I'm going to be told to try and cut my Nebs to 4hrs instead of 2 tomorrow!!! Not sure the drs know what to do with me. Sounds like yours don't have a clue either. Do you have someone visiting tomorrow? May be worth getting them to stamp their feet for you. I know that doesn't help now. Do you have a supply of nebules with you? If you do tell them to give you salbutamol or you will take your own! I have a stash in my bag at all times. Xxx

  • Thanks. No nebules on me cause only meant for emergencies at home. Always assumed if I needed them in hospital I'd get them. Rang for the nurse at 5.15 - HCA came in stopped bell alarm and said she'd get her - 45 mins later no nurse and I've lost any gains I got from the atrovent.

    Won't have anyone with me til late tomorrow evening. I'm hoping by then this will all be sorted. Wish I had stayed on amu then I wouldn't be this bad. Exhausted but don't know if that's from asthma or no sleep.

    Oh no! Good luck with the reducing neb regime but sounds like you don't think it will last for long! Xxx

  • Think I'm gonna have to ring for the nurse again...

  • Ah that's not good. Ask to be seen by a dr if the nursing staff are refusing and tell them you will be putting in a formal complaint if they deny a sever asthmatic the medication they know they need. Some nurses and staff just don't get the severity of it.

    Yeah I'm just about lasting on 2hrly Nebs. Not sure how they think I will stretch them to 4. I don't think the drs have contacted St. George's either as to what they think!!!! We shall see what they come up with tomorrow.

    Hope you can get your hands on some salbutamol. It's so hard when you don't have the energy to fight for it. Keep us posted. X

  • Do you have an asthma plan in writing? When you are well try documenting in brief what you have recorded here. Go through it with your doc and ask for a written management plan to which you both agree. Get him to sign it. Don't know if you are in the U.K. If so NICE put out peer reviewed guidelines stating how conditions should be managed. This might help you formulate your management plan.

  • I have the usual green/yellow/red asthma plan, but no management plan. I've got an inpatient appt at Brompton in just over a week so hopefully we'll come up with something there. My local a&e is usually excellent and I have no problems there it's only once I'm admitted that the issues start happening. Every doc l/nurse/pharmacist I spoke to after couldn't understand why my salbutamol had been struck off especially as I have home salbutamol nebs anyway... πŸ˜’. Hoping to stay out until I've been to Brompton (and thus have a management plan!) xxx

  • The nurse I saw at 3.30 said she'd come back and check on me... still waiting. Everything hurts, exhausted and my eyes are actually crying (emotions?effort? Not sure!). Call bell still ringing.

    Will do and good luck tomorrow xxx

  • Just had obs done sats 90-92% so assuming that's where they've been all night.

  • Finally got some salbutamol. Not my nurse came in asked who my nurse was - I don't know - not introduced, no names on board and no name tag. Told her I want/need salbutamol nebs. Got some without her even looking for my drugs chart. Feeling like crap but hopefully this will help or else I don't know what they'll do or how long it'll take them to work it out!

  • Glad you got some. Hopefully it will help things for at least a little while. Least you have one nurse who is sensible!!! Keeping my fingers crossed things pick up for you soon. X

  • Still on the neb and falling asleep. Good thing or no? Slept 2 hrs last night. Feeling a little less tight and SoB so at least something's working (or it's just a better time of day - me being cynical)

  • Salbutamol seemed to work (neb ran for 45 mins tho 😳). PF back 'up' to 300/630. Still <50% but at least I feel safe to try and sleep now - just in time for breakfast... πŸ™„πŸ˜΄

  • Yep breakfast just arrived here too. Neb just finished so I feel I have some energy to eat it. X

  • Not sure if I want mine. So tired couldn't remember the names of my drugs when doing meds literally 5mins after nurse told me what was provided for me - was trying to double check I had taken everything - just gonna assume I have.

    Didn't even wake up when nurse came into my room and I'm usually a really light sleeper πŸ˜•. Hope you enjoy your breakfast! X

  • I would go as far as enjoy!! Cold chew toast. Filled a gap though! πŸ˜‚. Good luck today hope you get more of what you need x

  • Thank you! Same as food over here then! Sometimes you find a hospital with good food - not ours tho πŸ˜©πŸ˜….

    No more salbutamol nebs (not prescribed) πŸ™„. The question is will I naturally level out for the day or will I spiral again whilst they piss about? Managed a whole hour without my PF dropping so that's something. Hope the AN comes round early - whoever they send I know I'm gonna trust a lot more than anyone else I see today (up to and including my consultant).

    Energy/mood at an all time low. Will be more cheerful later hopefully xxx

  • Make the most of telling the AN how it is and see what she can do for you!!!! If your struggling have you got someone that can call in and have a moan for you? I had to that the other day when I had a nurse refusing me meds that had been prescribed. X

  • Worse comes to worse I'll get my mum to call in. Generally nurses are ok issue is the drug I need has been striked off so they can't give it. Not looking forward to the constant 'your back's I'm gonna recieve today. They've been told I've had a bad night apparently (nice nurse this morning said) so hopefully they'll leave the friendly/sarcastic tone away from me today!

  • I do hope you have finally got sorted I was in hospital last week with another viral cold I had been 40% PF for 4 days I had started my emergency steroids and doing 10 ventoline hourly to keep Pf at that amount went to doctors they made me angry as put oxymeter on finger and didn't wait to see what it was they took the first number that flashed up I do obs at home as I have been in itu twice in the past 2 years and I crash very quickly. But out of hours were useless didn't have a clue I was so tight and wheezy and had an awful dry cough which was now hurting finally after 5 days of hell no sleep sob hot cold feeling awful they sent me to the emergency clinic at the hospital on the mau ward the first thing they did was nebuliser of salbutamol and atrovent finally I could get a breath in Pf then came up and steroids increased antibiotics started then I was monitored for a few hours and I knew I could manage at home so I came home but it is so frustrating when they want you to use inhaler through spacer rather than nebuliser at home I only have saline nebs for home where if I had nebules I would of totally avoided going to hospital which I have a terribly fobia of I wish I knew why they now do not allow home nebuliser in Norfolk anymore they say that 10puffs ventoline through spacer is the same it isn't trying to breath it in is hard enough let alone trying to hold your breath for those few seconds to actually get some into the right place I really feel for you and totally understand your frustration try and sleep when you can and stay as strong as you can they do try to make you feel like you know nothing they know it all take care keep breathing xxxx

  • Sorry to hear you've had a bad time too lately! Luckily I have so far avoid itu (close call on Sunday) but completely understand how quickly nebs can wear off (most docs in my a&e now make me wait 4hrs post neb before they'll send me home!)

    My GP gave me home salbutamol nebs when I hit the point of having nebs 1-3 times a week at the surgery most weeks (sometimes back to back). Consultant wasn't that happy but I prefer it plus it has stopped me ODing on vent and makes me get more help faster (only allowed 2xday before hospital, if I use 1 ring/see GP in 24hrs etc). ANs like me having it too!

    Very worn down at the moment - want my lungs to get sorted so I can get on with life - fed up of being in/out hospital all the time!

    Hope you're now starting to feel better, if not kick up a stink and go to hospital/ring your consultant/AN etc! Luckily I'm only about 1 mile from the hospital so going there is quite easy for me! Keep well x

  • Oh dear sounds like you have both been through the wars. I hope you feel better soon and are able to go home again. Cold chewy toast doesn't sound very appetising but better than nothing I guess. Big hugs to you both. xxx

  • Thanks. Hoping for my sats to go up - hit 94% at a push (using all the tricks). Paranoid that because I'm not too wheezy and feel like my infection has improved they'll want to send me home... πŸ˜•. PF still low (330/630) so hopefully not tho he sent me home at 370 last week πŸ˜•. Still waiting to see my consultant - him and his minions are currently wandering from bay to bay...

    The nurse who did my sats saw me last week when I was discharged - what happened? *I got an infection. * you did say last week you were getting one. Why did they send you home? *πŸ€·β€β™€οΈ.

    The lovely cold toast was followed up with antiemetics... didn't want to see it again so close after eating it πŸ˜…πŸ€’.

  • Oh dear. One day the NHS will learn to care properly for asthmatics but I am not holding my breath. xx

  • Don't do that or you'll definitely end up in trouble!! πŸ˜† xxx

  • :D :) xx

  • Dr just been round. I'm in again tonight. Waiting for PF to come up. Cold chewy toast really isn't good. X

  • Same on this end in for at least another couple days. Seen a different doc than usual - really like him as he listens properly to what I thinks going on and other issues I've had with docs/meds/home etc. Thankfully he has added salbutamol nebs to my chart again so last night shouldn't happen again - seriously thought at one point last night I would end up in resp failure and itu if they found me - not a happy thought to have!!!

    Wondering if lunch will be an improvement on breakfast... at my hosp breakfast is the highlight of the day esp if you have an egg allergy like I do as ~50% of meal options are egg based. 😩 ☺️.

    Feeling slightly better for the catnaps and mild sob fests I've had this morning. People (docs/nurses/pharmacists) who know me are concerned about how low/quiet/down I am so trying to perk up to my usual bouncy self.

  • *struck gold - roast beef dinner!

  • Ah shame your feeling down I know how your feeling though. I'm just fed up being told it's a waiting game until things come up!!! I'm bored of waiting want something added in to help!!! Just can't see a light at the end of it at the moment. X

  • Know what you mean! Tho I'm currently happy to be in as was let out too early last week but frustrated at being in for the 4th (?) time in 6 weeks. I'll think positive thoughts for you xxx

  • I will for you too. Missing my small people at home. X

  • A little joke to cheer you up.

    The 7 dwarfs were in the bath feeling happy

    Happy got out so they felt grumpy! xx

  • Love it. Cheered me up (esp with my dirty student brain!) πŸ˜† xxx

  • Ha ha I was a student too many years ago :D xx

  • Excellent. I like it. X

  • :) :D xx

  • Hope you feel better soon and can go home xxx

  • You need someone in your corner. It's very difficult to fight bureaucracy when you are feeling sick. You needed someone to jump up and down demanding Ventolin for you and demanding a doctor to come and see you. There is always a doctor on duty at night in a hospital. That person should have been called to come and seen you. How frustrating - a mild word for it! Maybe get your consultant to put in writing that you are to have a nebuliser (every so many hours) when you request it.

    I am lucky in Queensland, Australia. The Ventolin medihalers are available at every pharmacy for anyone to come in and buy one when required. No prescription required. The nebules for the nebuliser do need a prescription. Being denied Ventolin when I need it would absolutely stress me out!

  • Feeling better now I can breathe/talk and that the docs are listening to me! Unfortunately person usually in my corner (mum) is ill herself atm (cold and just had a root canal and crown done). Main issue was it wasn't on hospital chart so technically couldn't be given. Told the doc a nurse ended up giving it anyway esp as I have the at home - he was happy with that!

    Hope you well down under! πŸ™ƒ

  • Glad you are feeling so much better - It helps when you can breathe! I hope the nurse didn't get into trouble - even though it was the right thing to do.

    We have had a magnificent Winter this year where I am - quite warm. So far I have managed really well this year -crossing my fingers it will last.

  • Hi. I very rarely post but in this occasion I have because have had similar problems to you Emma. I have severe asthma which has deteriorated in last 6 months. On all drugs plus home nebulizer when needed and high doses of prednisilone. In last 6 months have been admitted about 6 times and numerous A&E visits, sometimes several times a week. I have had very good treatment and I have had junior doctors saying not asthma as no wheeze so being discharged ( peak flow 120!), Nurse withholding prescribed magnesium caused disagreed with doctor - got it eventually and loads of times when only prescribed salbutamal 4 x a day when admitted only for me to have another asthma attack within an hour and no more neb s prescribed, just given saline. Very frightening and frustrating when you already feel so ill. I now have found the courage (when I have enough breath to speak) to say what treatment i need as soon as get to A&E/resuss, if doctor starts 're not hearing wheeze etc I ask for a medical doctor and when told being admitted I ask the admitting doctor to write me up for back to back nebs and explain why. This as very difficult for me to do but it has worked on the last few occasions and has made me feel safer! I do hope you start to feel better soon

  • Hi thank you. Luckily I've only had a few issues (as a&e now know me really well!). Most of mine revolve around juniors (who don't know any better) or one particular doc on the amu (ward you're sent to after a&e). Everyone else knows me and knows if I'm there I'm bad and need mag sulp etc so don't muck about giving me nebs on top of nebs I've taken at home!

    This amu doc told me I could go home roughly 8 hours after a&e decided that I probably didn't need itu (it was a close call). She also told me she didn't believe I was taking my drugs at home cause I'm frequently in (severe/difficult/uncontrolled asthmatic since Sept 2015). She has in the past also diagnosed a 'life-threatening' attack as a panic attack. Haven't heard that for 3 years after it happened in a&e - the doc at the time was shouted at by the critical care nurse (took 4 1/2 hours to get some treatment). Gonna put in a complaint against her when I'm released. She's notorious for sending ill people home to early (I describe her to any doc/nurse and they know exactly whom I'm talking about - yet I still don't know her name!) and she's so belittling and demeaning she makes you feel like you're troublesome and just looking for attention.

    I know exactly where you're coming from! Keep your chin up and keep fighting! Stay healthy xxx

  • Another quick joke if you need cheering up

    What do you call a donkey with 3 legs?

    A wonky donkey :) xx

  • You inspired my latest post 😝 thanks for cheering me up when I was low. Just been asked what I was laughing at 😁

  • You are very welcome Emma. I figured anyone stuck in a hospital eating cold toast needs cheering up :D xx

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