I’d actually been doing really well this year avoiding hospital. So much so, there’s a new ambulance triage section of the hospital that I hadn’t seen before and my hospital bag had managed to accumulate a thin layer of dust on it, meaning it hadn’t been used for a while. Look!
Anyway, this week I ended up ringing 999 because I started vomiting. I haven’t thrown up since I got diagnosed in 2014 with adrenal insufficiency. In fact, I haven’t thrown up full stop for about 6 years. So this was new for me. Being sick with AI is a pretty bad sign: you lose fluids and electrolytes fast; it counts as a massive ‘stress’ on the body; you’ve either got a stomach bug which means you’re ill and so need extra steroids, or something else is making you throw up and have an adrenal crisis, which also means you need extra steroids, but most importantly, you can’t keep the steroids in your body *because* you’re throwing up. So being sick usually ends up doing the emergency injection and going to hospital.
I’d had pretty bad low cortisol symptoms for about a week, but nothing I was doing was helping, despite extra steroids. And there was a bit of a list of triggers which I couldn’t necessarily eliminate:
– heatwave. Hot weather causes me masses of problems
– I started levothyroxine which is known to give you an upset stomach and lower your cortisol levels
– I had my PIP tribunal looking and it was stressing me out
– some other bits and pieces were making me stressed too
– I still have stress fractures. Which had been healing but had also started hurting again, which I took to be a bad sign
I started feeling really terrible on Monday evening and within an hour had been sick. It was actually a bit of a relief to start being sick because at least there’s a clear pathway of what I need to do! So I banged on the floor to get my husband from downstairs, rang 999 and kept being sick while talking to the dispatch. I was pretty proud of my multitasking at this point! My husband went to find my injection for me and started assembling it and I did it once I hung up the phone while he went downstairs to wait for the ambulance.
You have to move quite quickly, especially as I didn’t actually know why I was being sick at this point. Did I have a stomach bug? Or was it quick onset adrenal crisis? And if so, why had it suddenly got a lot worse fast when I’d been having pretty consistent low cortisol for a week?
The ambulance came and there was a trainee paramedic so he got taught a lot! The crew were brilliant in the sense that they looked at my info pack and involved me in all of the treatment, which doesn’t always happen. They gave me some more hydrocortisone, the same as my injection, but IV, which works much better. Then we went to hospital.
The new ambulance triage was snazzy (and had air con- amazing!), but, despite a really good handover from the trainee paramedic, things went downhill from there. When you arrive in hospital with a suspected adrenal crisis (sickness and diarrhoea being the massive red flags), you’re supposed to get IV steroids (which I’d had), fluids, antisickness and assessed by a doctor with bloods done within about half an hour. Obviously it takes time for the bloods to come back, but if you have all the other stuff, it makes you safe until the results come back and we have a better idea of what’s going on. Basically, it’s as life threatening as a heart attack until you know otherwise.
But it’s down to each individual hospital to have an AI protocol in place, unlike a heart attack where there’s a clear pathway everywhere. And either this hospital doesn’t have one or people don’t know how to follow it because it seems to be happening way too often!
So I waited 2 hours for fluids and antisickness. No one did my obs during this time either, which is appalling. My husband was going a bit crazy by this point and going out to ask what was going on a lot. I eventually went out and said I was concerned I’d been triaged wrong (because it has happened before) and that I wasn’t in a&e for sickness and diarrhoea but those symptoms were the outcome of my potentially life threatening condition. I’d also continued to have episodes once we’d got to the hospital, which my IV steroids usually stops. So something wasn’t right.
After some arguments, we got the fluids and antisickness and had the standard argument about my BP not going down in crisis but mine goes up instead. I kept telling the nurses that it’s all very well and good a doctor having reviewed my chart but my BP was sky high and they needed to know that I’m a rare version of this disease and I could still be critically ill.
After 4 hours a junior doctor came to see me and said ‘so I understand you’ve come to a&e because you’ve got abdo pain and sickness and diarrhoea?’. And also they’d lost my bloods and urine sample so they hadn’t been processed. Then he tried to argue with me about my BP again. He got a (polite) earful and suddenly I got seen relatively quickly again.
It turns out on top of all the other things going on, I also had an underlying UTI. It can be difficult for me to tell if I’ve got an infection because the nature of my illness makes me feel awful all the time, so unless I have a huge temperature or cough up green gunk, I don’t always notice. But a UTI is hard to spot anyway because my diabetes insipidus basically gives me the same symptoms of having a UTI anyway. Which I explained to the doctor, but he got this confused with type 1 diabetes (which I don’t have) so I gave up from that point. The other thing that annoyed me was he kept saying ‘but your electrolytes and levels are all fine’ when he did get the blood tests back, and he didn’t seem to get that they might be ‘fine’ now but I’d had 2 big doses of steroids and time to recover before they did the blood tests, so that should have corrected any imbalance. They should have been ‘fine’ by that point!
Everything was just a big fight after another at the hospital and I find it frustrating. I gave them my info cards, the handover from the paramedics was good, I’m a polite patient and answer questions accurately. But I still was having to argue to get the basic care for my condition. And then when I was discharged, I had to argue for them to replace my injection kit because my husband had accidentally bent the spare needle so even though I had the medication, I wouldn’t have been able to give myself another injection if I needed it. I (politely) asked what they suggested I do if I started being sick or having diarrhoea again to which they replied ‘it can’t be that emergent, is it?’. To which I replied ‘yes. It can kill me quite quickly. I’m not keen on testing it though. So can I please have a needle?’. After a bit of eye rolling, I was given one. But why is it such a battle every time? I wasn’t shouting, swearing and throwing my urine sample at people like the drunk guy next door, but I got treated with the same level of scepticism.
In a way, it’s good I had an infection, because I’d been really struggling to figure out what was making me feel so poorly the last week or so. An infection wasn’t even on my list of possibilities! And since starting the antibiotics and having increased my steroids, I’ve not had the sickness and diarrhoea, so clearly that was it. However, it disappoints me that despite going to a&e frequently the last few years, I’m still having to argue the really basic stuff like fluids and meds, when really there should be a plan in place. I wasn’t asking to jump the queue or to be seen before others, but my illness is highly time sensitive, and having presented with classic adrenal crisis symptoms, I should have had the correct protocol in a timely way.