A great hospital experience (if such a thing exists 😅)

[EmmaF91]

Hi everyone

Having had some truely terrible hospital experiences (and posted them on here), I thought I’d post about my most recent trip, which was about 90% positive ☺️

I’d been twitchy since last Saturday (ended up not being able to get out of bed without needing to nebulise/ventolin) due to a 7hr round journey to my new specialist hosp the day before. I managed to get myself out of danger and took it slow, however my lungs didn’t forgive me for not giving them enough attention 😅🙈. Even spoke to my local AN team on Tuesday who informed me I sounded bad, so they’d expect me in within the week 😅. This lead to a few days of needing my ventolin a lot more (but not my nebuliser!) so assumed I was through the worst of it and avoided hosp. NOPE! Tweedle gasp and tweedle wheeze were just bidding their time til my day off on Friday 🙄😫.

I had a nurse appt at my new GP surgery to register my repeat prescription (😱 so many drugs), and I was very helpfully told I didn’t sound great and then sent home (PF at 40ish%) 🙄. Nebbed when I got home, but dropped again about 2hrs later, to the point I was gasping (I foolishly went to check my gas meter 😅). Another neb then rang 999 when I could actually string a few words together 😝. Ended up with a rapid response paramedic who arrived and ordered the big ambo (I now live over an hour from the nearest hosp 🤦‍♀️). Cue LOTS of nebs, and a chat about asthma with the para whilst we waited. He’s niece has severe asthma so he was very knowledgeable- knew HR issues where the asthma, not the meds, knew not ever asthmatic wheezed etc etc. And he could even ID the fact I had the beginnings of silent chest (upper lobes had very limited air exit). Other than being told I should have rung earlier 😳, it was a pleasant experience (he didn’t understand that if I rung every time I hit 10 puffs/neb level they’d be at mine every week 🙄). He did point out that is usually the ones who needed it that felt guilty for ringing 999, which isn’t great for asthmatics 😅 (so guys if you really feel like you need to - do it!)

Eventually got to the hospital 90ish mins after I called 999. A couple of blips in the journey in, once when I started to flare as had been without a neb for 30ish mind, and another when my BP came up as 90/66 twice - causing us to stop and get a manual read - 140/90 - broken machine there I think 😅

Arrived to the ambo drop off, bloods chest X-ray then transferred to the majors waiting room (via the outside so lungs were unimpressed eventually leading to another neb). Worst part of the day was the a&e doc who told me I was fine and BT and X-ray were clear and I wasn’t wheezing (which I don’t do at the moment). Got given a slightly condescending lecture about wrapping up warm as the weathers currently not great for asthmatics (🙄 almost like I’ve never had an asthma attack before or like I haven’t had severe asthma for 3 going 4 years). He couldn’t explain why the nebs weren’t lasting (cause they don’t when I’m bad, I just bounce in and out of red, once I actually get to yellow 😅), decided I wasn’t bad enough for hydrocortisone (despite this being my usual plan of action which will let me maintain) and only grudgingly admitted me when he discovered I lived alone. This was all going on at 11pm-ish. After another neb I sat in for the wait. 2 am started to get twitchy but I was told transport to amu was imminent so delayed the neb and just used ventolin. Didn’t get to amu til 3am and discovered I had nothing prescribed til the duty doc came round so I just dug out the vent again and puffed away (I was back at 45% 🙄).

Duty doc comes round at 5ish, and I seriously lucked out as he’s usually a reg in the resp department!!! He agreed to give me 200 hydrocortisone to stop me yo-yoing as was back just below 50% again (he agreed that after 20ml of salb nebs, 16 ventolin and 2x atro in 10ish hours we were flogging a dead horse)! Also said regular nebs and suggested admission over the weekend 🙄. Agreed to me only raising pred to 30mg as I get less side effects then (I will go to 40 if I’m put in resus or need mag) plus I get a 10 day reduction in my wean 😅.

Due to hospital life I didn’t get the hydro til the morning med round at 8 and he had forgotten the nebs, but I was happy to try and maintain on ventolin so I could get out earlier. Saw a cons (not mine) at 10.30 who seemed desperate to empty beds 😅. I happily agreed to go home as the hydro had done the job and I was now maintaining at about 70% just on ventolin. I also wanted to avoid the flu/chest infections that seemed to be everywhere! Some confusion as I was/wasn’t/was/wasn’t being transferred to the resp ward but eventually left just after lunch with the promise of my discharge letter in the post. 😂

So all in all a good experience (if you can call needing hospital such). Minor blip with the a&e doc (and the knowledge that had I had the hydro when I got to the hosp, I probs wouldn’t have been admitted!) but all other medics I came into contact with were brilliant! Now I get a day and a half to recover enough for work on Monday (yes, I know, but I’m self employed so no work=no money and my not-boss knows what went down so will give me an easy day I hope 🤞🏻).

Hope you’re all doing as well as you can be at this time of year. With all the negative experiences out there, had anyone else had a really good experience or a staff member that’s been particularly good?

Ps just woken up after a 6hr nap... I only caught 2 15min catnaps last night 😅😴😴😴

[elanaoali]

Glad to know that the NHS is doing its very very best to look after you.

I pray that you are on the road to recovery. Goodnight sweet dreams

[EmmaF91 Community Ambassador in reply to elanaoali]

Thank you ☺️ hope you are well x

[elanaoali in reply to EmmaF91]

Thanks Emma I hope you got a better night's sleep last night. I sm much better than I was last week. Not asthma but a bladder infection (3 lots of antibiotics) and it exacerbated the side effect of my inhaler (the shakes).

Last antibiotic tablet today so will be back to normal this Evening.

[Wheezycat]

I am glad the experience was a better one, but sorry to hear it had to happen at all. Perhaps you need to tell your lungs to behave.........(this is where I should put in an emoji, but I don’t know how........)

[EmmaF91 Community Ambassador in reply to Wheezycat]

They’re currently in detention and will be on probation for the next week! 😂Hopefully soon RBH will come up with a plan to force them into submission, without causing the rest of my body to go on strike! 🙄

[K8ty25]

My 'local' hospital almost an hour away has a respiratory nurse that saved my life in September. Without Kari there is a good chance one of the on call consultants would have discharged me and i wouldn't have survived without the hospital having meds on standby for me. She made my stay comfortable and i felt safe with her handling my care couldn't ask for any more. Also have a very clear memory of her arguing with a dr who wanted to send me home even though I had only just had a severe attack 20mins before the dr's round. I wish that I trusted all the staff as much as I felt i could rely on her.

[EmmaF91 Community Ambassador in reply to K8ty25]

I’ve had a similar experience. About 5hrs after critical care decided I probably didn’t need intubation, and after *needing* 2hrly nebs throughout the night the consultant wanted to send me home. She wouldn’t listen to my protest (I still felt really really bad), so I spoke to the ward nurse (Rachel - knew her quite well from previous admissions), who immediate said I wasn’t going home, no matter what the doc said. A few hours later I spiralled again and ended up needing aminophylline and more hydrocortisone as well as b2b nebs. Without her I would have been at home (most likely asleep) when this happened!

Glad that Kari was there for you when you needed her! Here’s to those nurses that catch those of us that docs want to send home prematurely!

[K8ty25 in reply to EmmaF91]

I know. I couldn't have been more grateful for her support. Ive seen her on a couple of admissions and i am always amazed at how she always has time for her patients. Glad that you also have a nurse who you can rely on

[EmmaF91 Community Ambassador in reply to K8ty25]

Unfortunately that was my old hospital, I’ve got to build up relations with my new one 🙈. Only been to a&e there twice but admitted both times (moved in Dec 😅). Getting to know the resp team well tho and have chatted to the ANs a couple of times on the phone as I work out transferring spec hosp. TBF this local seems generally to be quite good with asthma in general, or at least asking the patient if they feel safe to go home, before they discharge! I’m hoping to keep up the good experiences here!

[K8ty25 in reply to EmmaF91]

Fingers crossed for you that the good care continues. I hope that you stay as well as possible in the coming months.

[EmmaF91 Community Ambassador in reply to K8ty25]

You too! Stay healthy and keep breathing ☺️

[Hidden]

Please get well soon, you was the first person who reached out to me on here. You are such an inspiration. Take care

[EmmaF91 Community Ambassador in reply to Hidden]

Thank you ☺️ you too!!!

[Matman]

Hope you’re beginning to feel a bit better. Sounds like you’ve had a major ordeal with that lot.

BTW, have you been offered or requested a High Resolution CT in the last couple of years?

Just wondering if doing so might help identify a more successful treatment regime, as you seem to have a really difficult symptom burden to contend with.

Take care.

[EmmaF91 Community Ambassador in reply to Matman]

Hi thank you - yes I’m getting there if we ignore the cold weather 😅

That time wasn’t actually too bad - I managed to avoid needing a mag bag anyway! I’ve been a lot better (and much easier to ‘rescue’) since starting mepolizumab unfortunately this got stopped in December so not sure what the plan is now (waiting to hear back 🙄)

I had a CT scan in sept 2017 at my DAP in RBH - think it was basically clear other than ‘normal’ asthma issues (mild atelectasis)

Last time I heard they were swinging between reslizumab and benralizumab for me. Mepo was brilliant for my asthma however the side effects weren’t tolerable long term 😕

Look after yourself