A really crappy Easter weekend... now feeling really frustrated (and very teary!). I’m fed up of being ignored by docs (and ashamed for feeling that way cause I know I was due a ‘bad’ admission so I feel guilty for feeling so upset).
To sum it up, I ended up in a&e last Thursday (17 days after my last discharge with a slow spiral in between managed at home but keeping ANs and GP in the loop) after calling ambo when PF hit 28% (180/630) and sats started to drop. There I got nebs nebs and more nebs until I finally got reviewed by a medic (a few hours after arrival) where I educated an F1 what I needed. After he royally mucked up 1 ABG (hit the tendon/nerve which still hurts now) and failed another he gave up and went for his senior, who supported ‘my’ treatment plan of a mag bag and 200 hydrocortisone (sans ABG! VBG was fine) - given in resus solely due to a lack of cardiac monitors/trolleys in majors 😅. Knowing I have a maintaining issue they then offered to prescribe a couple of days of hydrocortisone therapy, but hoping that the a&e treatment would be enough to stabilise (it usually is) and wanting to be out ASAP I turned it down. Something I deeply regret now!
In for the long weekend, understandably they’re working on reduced staffing levels, and have too many patients so contact time is hard to get... saw 1 con on Friday who said I had a forced expiratory wheeze (hadn’t had a wheeze the entire time I was in a&e) so reg nebs and review over weekend. Whilst hydro was in my system my PF increased and maintained, and I felt positive for release Sun/Mon. The hydro effect was over by Friday night. Since then I have been bouncing constantly... start to drop 3hrs after neb, if neb is ‘late’ (ie 6hrs med rounds rather than 4hr) I’m in mid red. With the mag still in my system (benefits usually last a week for me) my reversibility is excellent, so I’m bouncing from as low as 210 (33%) to as high as 550 (87%) (biggest change was 39% to 79%) but it doesn’t last. Sat/Sun I also had hayfever issues causing my lips to swell and then giving me hives (solved with additional antihistamines).
Sunday see a junior wanting to take me off reg nebs to just PRN... told him he could but wouldn’t make a difference as currently need them basically 4hrly, he agreed to leave me on them and get reviewed Mon.
Yesterday I got transferred from the resp ward to obs and gynae (emergency transfer), meaning I’m with people who don’t ‘know’ asthma, with patients without resp conditions (so don’t understand spray/window issues) and I’m easily forgotten about by the resp team. Despite still having issues on reg nebs the o&g CH1 I saw today wanted to send me home (I downright refused! Treatment needs escalating not me turfed out). He agrees to get resp reg to review as unfortunately my (brilliant) Cons in on annual leave.
8/9hrs after referral see the reg... ‘so we’ll keep on with the reg nebs and I’ll get a (crappy) Cons to review you in a day or 2...’ I try and suggest a day or 2 of hydrocortisone therapy (had it before and know it works well for me). I get told that hydrocortisone is only a short acting drug (so are nebs and hydro lasts longer!), and get told there aren’t many options for acute/chronic asthma (yes there are! Hydro therapy, amino therapy, iv salb...)
On this front I’ve also been told this weekend that pred only works on wheeze (which I don’t have) therefore I can wean pred as low as I like (wrong! - my Cons wants me no lower than 35/30 alternating - due to side effects I won’t go to 40 unless there is absolutely no other choice (and Cons agrees) plus I have been on pred since 2015...)
5 days of the same treatment (35 pred and neb neb nebs) with no real change and they won’t try something else! The horse is dead dude, time to buy another!
Very upset (blaming pred) and frustrated cause I know what I need to recover at this point but they are refusing to listen (and I know my Cons would!). I can’t wait til I can start Benralizumab!
Sorry for the rant! Anyone got any ideas on how to get them to listen?
I hope you all had a better weekend then me, whether that was in or out of hospital!