I had a bit of an eventful week last week, so you might want to catch up with part 1 first 😉
At some point in the middle of the night, someone was supposed to stick a ‘nil by mouth’ sign over my bed so people couldn’t accidentally feed me. But they didn’t so it’s a good job I knew I wasn’t supposed to be eating! I ate a ‘light breakfast’ as per the only nurse who was on in the night who seemed to know what was going on and then was on clear fluids only until my test in the afternoon.
The nurse in charge of my care that day was a bit odd. Most of the people on this ward were old, I was the only young patient by about 50 years so I think she was trying to bond with me by telling me all about her escapades when she was drunk. But she turned out to be a bloody good nurse when she came back and said ‘question- how are you still alive if you’re diabetic and we haven’t been giving you insulin?’ To which I replied ‘I don’t have diabetes, I have diabetes insipidus’ and explained the difference. My chart said diabetes apparently. Not useful! She was the only one who had noticed though.
She also gave pharmacy a bit of a kick up the backside. When you’re admitted to hospital, all your meds are given to you rather than taking your own. Except not very many of mine are automatically stocked on the ward, so they have to be ordered from pharmacy. A pharmacist comes to talk to you and then (in theory) makes sure your meds get sent to the ward for the nurses to dispense. Except half of mine were still missing or they didn’t have any anywhere in the hospital. It’s actually more stressful for me being in hospital trying to keep track of my meds because they change the times of them, some doses get changed and some just never materialise and I end up taking my own anyway (I have a week’s back up in my hospital bag). At home, they’re all in a dossett box so I swallow the contents of the section when my alarm goes off.
A medical doctor (rather than an endo) brought round lots of junior doctors to see me. He was fascinated by my taking dexamethasone rather than hydrocortisone (less common for treatment of AI) so I explained the reasons why. He asked if I had a medical background because I gave a good explanation so I said ‘no, it’s just it’s rare so I decided to read up a lot about it when lots of medics kept trying to kill me by accident because they hadn’t heard of it’. Which made the junior doctors laugh until the consultant said ‘no actually, I think she’s being serious’.
My husband came in so he’d be around for my colonoscopy (with the ADSG surgical guidelines on hand just in case) and tried to reschedule some of my appointments from that week. Even if my endo appointment had been in the same hospital, I wouldn’t have been able to go because the NHS has a silly rule where if you’re an inpatient, you can’t attend outpatient appointments and neither can your consultant pop up to the ward to see you. Then you also usually get a snotty letter telling you how much the NHS had to pay for your appointment you didn’t attend. Unfortunately, you have to spend a lot of time on the phone reorganising things with the various secretaries because if you call the main outpatient helpline who do sort it for you, you get sent straight back to the bottom of the waiting list. Whereas secretaries can force book you into clinic sooner.
My nurse came to do the enema prep at around 12 and said it was a pretty horrible experience and I should prepare myself. Except it really wasn’t, I’d been having worse symptoms daily for 2 months. She kind of raised her eyebrows when she came back and I seemed quite happy and I told her this. Maybe I was just putting up with too much for the average person in the first place! I was relieved she appeared with my IM HC prep as well without me having to check, even if she did tell me in great detail about who she pulled at the Christmas party.
I was given the time slot of between 1-5, so the porters came at some point mid afternoon to take me down to the department. A very nice nurse came to give me the information and get my consent for the procedure and explain the risks. I reiterated my steroid dependency and she said the ward hadn’t told them about it but she would sort it out. Which was bloody annoying because I’d literally been banging on about it non stop! Because of this, it meant I got shifted back a bit while they sorted it out. And then a lady crashed (having the same test as me) and everyone had to go running. It’s always a bit weird when that happens anyway, let alone when you’re having the same test, but I reassured myself that she was about 90 and it’s not a pleasant test so no wonder her heart gave out temporarily.
The nurse was on it and the doctor was holding my IV HC when I got wheeled in, which made me feel so much better! My BP was really high again and I needed help getting changed because I felt rubbish but it didn’t take long and the staff were super clear about what was going on. I declined the opportunity to watch it on the screen! I confused the nurses by having a perfect BP afterwards and suddenly perking up a bit. The doctor laughed and said it was because of the IV steroids, which is true. He decided to take biopsies, just in case, because, to quote him ‘none of us want to have the faff and risks with the hydrocortisone and prep if we don’t need to again’. Very true.
There was a bit of a wait for the porters to collect me and then I was allowed to eat again! The rest of the evening was uneventful really until I was moved really late at night to a different ward. The problem was, I shouldn’t really have stayed on the assessment ward for as long as I did because it’s supposed to be a holding ward until a bed frees up on a specialist ward or you go home. Except there are never any endocrine beds, ever, and no other speciality wanted to ‘claim’ me. I almost went onto a gastro ward, except the colonoscopy was clear so they didn’t want me. So I was transferred to a short stay ward normally for post op patients. This happened at 11pm, which was unsettling anyway but meant that by the time I’d had new patient intake and obs and the doc had been to review me it was almost 1am on a day where all my drugs had been at random times and I hadn’t eaten. It wasn’t a fun night, but at least I was finally off the cardiac monitor!
The night nurse was great about my steroids. She appeared at 7am on the dot with them and made a point of telling staff at handover that they were highly time critical and they needed to be aware of this. It’s a shame no one listened to her though because I literally spent the whole day arguing with people about the scheduling.
An endo reg came to see me and said I needed to stay overnight again because he wanted me stable on my oral meds rather than my IVs before discharging me. Made sense but I was not impressed. It made me realise how much I withhold or ‘dumb down’ when I speak to other speciality doctors because he started asking me really endo specific questions and told me he was an endo and then we had a much more detailed conversation about what I’d been doing and why. The problem with moving ward is that all of those medications I’d spent the last 2 days sorting out with pharmacy don’t move with me. So the process had to be repeated meaning I was back to missing meds and them not being in stock on the ward. The great night nurse had got IV HC in overnight but the consultant switched me to oral meds, which they now didn’t have.
The day staff also weren’t appreciating the time sensitive nature of the doses, made more time sensitive by the fact that oral meds take time to work whereas IV ones are pretty instant, and the transition from IV to oral results in a jekyl and Hyde like demon response at the best of times, and is pretty much like taking all of the oxygen out of the room and being asked to hold your breath. I had a student nurse as my nurse today and she kept forgetting to pass the message on to her supervisor and wasn’t allowed to dispense meds. Usually I’d go stand at the nurses station and refuse to move until someone gave me them when I got desperate but I was still under quarantine so not allowed to do that. Suffice to say really good night nurse was not happy when she came back on shift.
I got really, really hypertensive (high bp) overnight so I asked the nurse to get the doctor on call to review me because I thought I might need another steroid dose. She asked me what my usual dose was and I told her my dex doses to which she replied that I ‘should be on 4 times that amount’. Which is very wrong! I think she thought I was there post op, where I might need that high a dose for swelling but not routinely on my baseline! I asked her to make sure the doctor actually came to see me because sometimes they don’t want to wake you up and just look at your chart, but I didn’t really want the nurse saying I wanted 4x dex… The doc came about 3am and said they’d review my BP properly in the morning since it had come down a bit.
My meds finally arrived from pharmacy but there was mass confusion as to how they were going to give me 2.5mg doses with only 10mg tablets. Welcome to my life! The nhs only issue 10mg tablets, you just have to get good at breaking them evenly. I showed them my tricks.
Even better news, the consultant said I could go home! He started me on a blood pressure tablet and said I needed some repeat bloods in a week with my gp. All of my test results were mostly fine and no one really knew what had happened but maybe my endo would know. I’d kind of stopped listening by now because I was focusing on being able to escape! It’s great I had good test results, but actually it’s not helpful from a diagnostic point of view.
However, from past experience, escaping from hospital is never quick if you need prescriptions or TTOs (to take outs). It takes hours for the discharge note to be written by the doc, for it to get sent to pharmacy, for pharmacy to sort it out, and then for it to be delivered to the ward. It takes twice as long if you’re complex like me because it has to be signed off by a senior pharmacist. I saw the docs at about 11 and we didn’t leave until about 5.30. That’s still pretty quick though!
Sadly, someone died that afternoon on the ward. It’s always a bit odd, even though they were old and on end of life care. It’s also weird the way the staff have to deal with it- someone comes and just closes your curtain so you can’t see what’s going on and then they never open it again so you have no idea if you’re ‘allowed’ to or not. The first time it happened, I just opened it again and got told off because I got an eyeful of the patient being taken away. But if someone had told me what was going on, I wouldn’t have opened it! Considering people die a lot in hospitals, no one seems to deal with death very well…!
On that happy note, that was my rather full on week with the nhs! It was a pretty average experience really. Some pretty rubbish care (but not terrible) and some good care. I particularly liked night nurse Beatrice!