My week with the NHS: 12th November

This week, I had no nhs appointments lined up and I had all my prescriptions sorted, so I was looking forward to a quiet week. It turned out to be pretty eventful in the end!

Tuesday

I’d had an upset stomach on Monday which got a lot worse by Tuesday. It wasn’t a bug or food poisoning, it was something annoying my endocrine system giving me diarrhoea, which is a pre-cursor to adrenal crisis. I’ve actually had it every day pretty much since May ish, but today it was really bad. So I rang an ambulance- I wrote a blog about it here

Short story of the blog is, the ambulance took me to hospital, I spent some time in resus before being transferred to majors and then eventually AMU, which is the assessment ward. I’d been reviewed by the a&e consultant, who had got the medical consultant down to review me, who declared me ‘safe’ (ie probably won’t die now) to be moved to AMU. He also said that my old endo was on call that night so they were going to try and get him to come down and review me because they wanted endocrinology to sign off on my treatment.

Because one of my admitting symptoms was diarrhoea, I was isolated in a side room in case I was contagious. I was pretty sure I wasn’t infectious, but those are the rules, so it meant I wasn’t allowed to set foot out of the room and the door had to be closed, and anyone who came in should wear aprons and gloves. I don’t actually mind being in a side room because it’s a lot quieter than being on a bay. Even if you get really considerate or calm bay mates (which you normally don’t- there’s usually one elderly patient screaming ‘help me’ and trying to escape), it’s still noisy with people coming and going all the time. I was particularly grateful for a side room when I was asked to provide samples every time I went to the toilet. Having to do that in a shared bathroom would be a nightmare.

Wednesday

I was pretty grumpy this morning because I’d asked many times for a doctor to review my hydrocortisone doses overnight, because they’d only charted my normal daily doses. Which were definitely wrong because I can’t go from being in adrenal crisis the night before straight down to baseline meds, particularly as I was still having diarrhoea. According to my nurse, the junior doctor just refused point blank to change it without a senior review and didn’t really get that senior review could take place at any time in the day and we needed a decision sharp ish otherwise I’d get more sick.

My nurse pulled some strings and I got put first for senior (medical) review, accompanied by a lot of junior doctors. It kind of became a little bit like an episode of House in that the junior doctors very enthusiastically started discussing potential diagnoses and tests. A little bit too gleefully considering the seriousness/death potential of some but I don’t think they realised I knew what they were on about. The consultant still wanted to rule out gastro but they were thinking outside the box and looking at what else could be happening. Some of the tests they wanted were ones I’d mentioned to my GP and she’d dismissed eg liver and autonomic system failure ones, but the consultant ordered them without me having said anything. So I at least felt vaguely clever! He switched me back onto IV hydrocortisone but only twice a day. I said I wasn’t convinced by this but he said it was fine.

A little bit later an endocrine registrar came to review me and overrode the consultant and said I needed to be on IVs 4 times a day and doubled his dose. I was a lot happier with this. She also said they were going to start testing me for some of the more rare endocrine disorders but it was very unlikely I’d actually have one, just they wanted to rule it out.

The rest of the day was spent asleep, collecting different samples of bodily fluids and pushing my buzzer and playing the ‘my hydrocortisone was due at X time, can I have it please’ game. It’s actually pretty stressful being so dependent on a med while in hospital because a lot of people don’t get the time sensitive nature of it. I always get round this by having a stash of tablets with me so that if it gets really bad I can say ‘I’m swallowing these now, I’m telling you so you can chart it later’. I also have a hydrocortisone refusal letter with me which the HCP has to sign or give me my hydrocortisone. They usually end up giving the drugs then because they don’t want to sign it. But it’s not the point really- I shouldn’t be made out to be an annoyance because I want my medication which stops me from dying at the right time.

I have a pack of my most recent consultant notes, my meds list, surgical guidelines and adrenal crisis pathway that I give to ambulance and a&e staff in an emergency. I was pretty impressed that this pack was in the back of my chart when I moved to the ward. It meant the endo reg could see exactly what my endo was planning and work with it.

On another positive note, I was kept entertained by an elderly patient singing a mega mix of primary school hymns most of the day. Then my husband came to visit in the evening. Lots of hospitals have all day visiting allowed now but this hospital still has set hours in the evening. We decided that even though no one had officially told me, I clearly was staying another night since I was still on IV HC every 6 hours. So my husband set up the (really extortionate) bedside tv so I could watch films.

Thursday

I was glad of having the tv because I didn’t sleep much thanks to my IV HC. To make sure I didn’t have another adrenal crisis, they’re at 6am/12am/6pm/12am. But it’s a bit of a weird feeling because you can’t sleep if you’re low on cortisol but you equally lose your natural daily body clock if you’re on the same dose every 6 hours. It’s like really bad jet lag.

Some of the test results had come back but a lot were still pending. A different medical consultant came to talk to me and said how they were all scratching their heads a little bit and that I’m a bit of a mystery. I was explaining about my persistent diarrhoea and he realised a bit late that he should probably have anti bacteria gelled his hands so he tried to casually do it with the pump at the end of the bed but failed miserably and slid sideways which amused me. Either way, it was decided that I needed to be on the endo ward really, as they’d be better off dealing with me there. Which meant another night in hospital.

Two nurses came to move me after lunch. Nurses don’t tend to move patients in this hospital, porters do, unless they’re worried something might happen on the way down. But I felt ok so I’m guessing it was just precaution. I was put in another side room for infection control but this time with no tv! It’s a lot more peaceful on this ward except for a woman sobbing constantly next door. She got louder the more she was ignored so I’m guessing she was mostly after attention. I still felt sorry for her though.

I tried to ask my nurse what the plan was and she said ‘IV hydrocortisone’, which didn’t sound like much of a plan to me. Me and her didn’t get along though because we kept arguing over the fact that she was 45 minutes late with my IV HC most of the time. Turns out she was new and didn’t really know an awful lot yet. You’d think an endocrine specialist ward would appreciate this though… A doctor came in and said I had to do some fasting tests and a 24 hour urine collection as well as more stool samples. So basically collect everything I weed for 24 hours. I’ve done one of these before and they’re a bit faffy (catching your wee and then transferring it into a bottle is always fun) but it’s doubly hard with an upset stomach! Again, no one had said how long I was staying, but because I wasn’t due to finish the 24 hour urine thing until Friday night, I’d be in until Saturday at least.

Most of the patients on the ward were elderly and there because they had nowhere else to put them, so I was a bit of a novelty actually being an endocrine patient! However, the nursing staff weren’t endocrine specialists on the night shift since I could overhear the doctor having to explain what cortisol was and why they needed to be checking my BP and blood sugar. I suppose at least they asked but it didn’t fill me with confidence!

Basically I spend a lot of time eavesdropping in hospital to entertain myself. Usually it’s just me overhearing stories and sussing which patients the nurses bitch about or who keeps trying to escape. But at about 11pm, the police showed up with a female patient. It was all a bit cloak and dagger and the curtains got pulled round her bed but the police were there all night guarding her. I wasn’t sure if she was a criminal or a crime victim (yet) but it gave me some kind of entertainment anyway! Being in quarantine, I couldn’t keep going for a wander outside so it made finding out what was going on more tricky!

That’s enough for one post, I shall cover the rest in part 2!