This is the tale of the time I took myself of to Accident and Emergency (A&E). This is not a decision I take lightly as there are a million things I’d rather do. Like saw off my own leg, puncture an eardrum or attend a meeting of the Young Liberal Party. But I’m writing about it because it was a crap experience all around and I’m interested to hear how others have dealt with similar situations.
So, here is the good thing about having type 1 diabetes. I walk into a heaving A&E waiting room. There is blood (the guy in the corner holding his head), guts (a woman near the front throwing up hers), tears (the old woman with her daughter) and silence (most of the other people). I tell the triage nurse the situation which sounded something like I have type 1 diabetes, I have been vomiting for the last three hours, I have ketones of 4.8 and my last BGL was 12.8mmol/l. The triage nurse takes one look at me and opens the door to let me in. Like it’s 1991 and I have a gold medallion to the Underground nightclub. Straight into the VIP room!
Unfortunately, this VIP room is lit with unflattering lighting and instead of comfy lounges I lie on a trolley. I am seen by a couple of brilliant nurses who put in an IV line and ask sensible questions and say sensible things like ‘Of course you can check your own BGL. Would you mind telling us what it is when you do it?’ I have two new BFFs and I want to take them out for ice cream – perhaps I’ll wait until the ketones have cleared, though. I tell them that, according to my sick day protocol, I have upped the basal rate on my pump and have given myself a correction bolus which is already working as my BGL is now down to a stellar 7.6mmol/l. Brilliant BFF nurse #1 says ‘Well, obviously your protocol is working. Are you happy to check again when the doctor comes in and let him/her know how things are going?’
Emergency doctor comes in after a mere 25 minutes (seriously VIP) and starts asking me what’s going on. I repeat the story, report that I’ve just checked my BGL again and I’m down to 6.9mmol/l and he starts by asking the usual questions about diabetes starting with ‘How’s your diabetes’. I never know how to answer that question. ‘Um, good thanks. How’s your father?’
The next thing he says is ‘We are going to need to disconnect your pump’ to which I respond, ‘That’s not going to happen’. He looks surprised and repeats a little louder what he said. This time I answer with ‘Not an option. Come up with another idea’. Now, I know that I am a nightmare patient. I know that at this point in time the doctor was wishing that I was actually unconscious. But I also knew that my pump was working (see: BGL dropping at sensible rate for proof). I also know that I was polite. Assertive; but polite.
It was then I summoned the immortal words of one of the presenters from a Type 1 in the City event and said ‘I would like to see the endocrinology registrar. Now. Please.’ Trump card! It’s kind of like lawyer-ing up!
The endocrinology registrar has much more of an idea until this question came out ‘What’s your blood sugar usually?’ Huh? Usually when? At what time? When I’ve done what? When I’m feeling how?
How is that a question? There is no answer. My blood sugar is usually variable. That’s called diabetes.
What happened next was me refusing to disconnect my pump (again) followed by a demand (from me) that the registrar contact my endocrinologist, which she really didn’t want to do. I held my ground and promised that I would disconnect my pump if recommended by my endo.
Five minutes later, the registrar returned to my room, muttered that the pump could stay connected and then she left. I didn’t see her again. I fell back against the pillow, exhausted, emotional and, despite getting my own way, I felt defeated.
I am sometimes accused of making diabetes look easy. It’s not. And when something like this happens, it reminds me just how difficult it is. The outcome of my visit was rehydration, blood tests to check all sorts of levels, monitoring of ketones (which were gone in about three hours) and then I was sent home. Mind you – I did tell the endocrine registrar (much to her astonishment) that I was leaving at 6.30pm, so she only had until then to get me sorted. (The reason for this was that I had to emcee a diabetes information session at the hospital’s conference centre.)
So, apart from five hours in A&E, not too much of an inconvenience.
But the aftermath hit me like a lead balloon. Firstly, I rather arrogantly was upset that I had found myself in that position. Gastro leading to ketones and dehydration is not the most unusual thing in the world, so I’m not sure why I should think I’m above it all. I’m not.
The second thing that upset me is this, (and again, I hope this doesn’t make me sound arrogant). If I have to battle so much at a relatively easy visit to A&E – if I have to pull every trick to ensure that I get what I want the way I want it, how do people who don’t have the same understanding of the system manage? The people who don’t know the tricks. Surely being heard is a basic right in circumstances like these.
I need someone to explain to me how it is possible that it’s OK that every minute of every day I am the one who makes all my own diabetes decisions and yet the minute I walk through the doors of a hospital I am not equipped to do so.
Do you have any experiences in A&E that leave you feeling a little cold? How have you dealt with them?
10 comments
Comments feed for this article
July 17, 2012 at 2:42 pm
mairi-anne
Your last paragraph sums it up…… we are the medical care givers of our T1 child 99.9% of the time. When and only when it is a necessaity to visit a hospital we are treated as üneducated”.ninnies!.
Will it ever change?
LikeLike
July 17, 2012 at 6:07 pm
mandysue62
We have found ourseves in this situation many times with my daughter. makes you feel like screaming…
LikeLike
July 17, 2012 at 6:28 pm
Lisa
I think the doctors in the A & E’s think they know better due to their years of Medical Training and society’s blowing smoke up their bottoms. However, they know the textbook examples and treatments. We all don’t have ‘that’ type of diabetes, because we are all real people managing on our own. I have had very little respect for doctors generally after my diagnosis…. In their defence though, did anyone assume you were a Type 2? ‘Cause that is a new low to have to deal with….
LikeLike
July 17, 2012 at 6:50 pm
keira burgum
I thought this was the most awesome thing I’ve ever read!!!!!! So funny. `hows ya father?` GOLD I’ve dealing with those questions for far too long.
Keira burgum 29. T1 for 28 yrs. Also on a pump
LikeLiked by 1 person
July 17, 2012 at 8:20 pm
kerrie
It seems to be how it is, Really I cant believe that hospitals send us home with a really speedy medical degree to take care of our type 1 kids, wow what a learning curve that is:0 really it scares me sometimes the new normal we now live with, It truly amazes me just how much information and knowledge we all gather along the way and yes seem to know more than the medical personell:) I have now even also learnt to ask the registrar what consultant he has got his information from….. our job as parents wow sick kids thank goodness we have a fantastic team avail 24/7, main objective is to stay out of hospital as its full of germs! love reading your blog
LikeLike
July 18, 2012 at 1:41 am
luvleamum
Very provoking post. Seems like I have a zillion stories of ‘you’re just the mom’ treatment while in emergency / during hospital stays. It’s so frustrating and stressful. But, I also have my most recent experience of an emergency visit for a possible broken foot. My sons blood glucose spiked to 31mmol – I think due to pain & anxiety. The young pediatrician on call was wonderful. He asked some awkward diabetes questions but deferred to my knowledge and allowed me to reassure him that I had it all under control. This combined with some better experiences at our endo clinic has me hopeful that medical staff is getting more thorough training on diabetes & patient care? Dare to dream…
LikeLike
July 18, 2012 at 12:55 pm
Fraudster
How awful for you, but well done being assertive when you’ve had nausea for several hours.
About six months ago I attended A&E at John Fawkner. (That was after 24 hours D and V and who knows what my ketones were. I was ready for death. Had my daughter not turned up and done the Nurse on Call thing it would have been much worse. I’d lost the will to live, as evidenced by me attending the clinic bra-less in nightie, fluffy slippers clutching a towel at my mouth. But I digress.) My experience was really good – well, not the D and V obviously – never a suggestion that I remove the pump and I was doing my own monitoring. I can’t begin to imagine why they’d want you to remove your pump. Quite strange unless perhaps you were going into theatre??
Only trouble with John Fawkner is the flat non-refundable fee of around $240. Still, it was a speedy, supportive and professional service.
LikeLike
July 22, 2012 at 2:08 am
Aaron
“I am sometimes accused of making diabetes look easy.” Really? Anyone who says this is ignorant and insensitive. I don’t think diabetes is easy for anyone – and I know it’s not easy for you. But I am constantly amazed by your resilience; especially at the worst of times (such as the occasion you’ve described here). You are doing an amazing, fantastic job.
LikeLike
July 22, 2012 at 3:39 pm
Stephanie
As a nurse with type 1 I completely agree with you! Too often do medical and nursing staff take away your control and assume you cannot manage yourself. I’m always educating, encouraging and putting forward quality improvement ideas at my workplace to give people with chronic conditions there power back. I’ve also had a terrible experience post minor surgery…they wanted me to try eating. I told them the insulin they had given me intravenously was not enough…they ignored me, I ate, then surprise I had a bgl of 24!!! The. The nurses had the cheek to say I needed to get better control of my diabetes. I was very angry! Needless to say if they had of given me control it would have been controlled!,
LikeLike
July 23, 2012 at 11:59 am
Fraudster
Again, how awful, Stephanie. (And sorry to chime in on your posts, Renza.) I get extremely aggressive at times like these. Then people say I’m aggressive because I’ve got diabetes! Can’t win.
LikeLike