Monday 5 May 2014

The machine that goes ping.

"There are no cardiac services available on weekends."

There's a pause and Mr Grumpy repeats my symptoms trying to get through to the voice behind the desk.

"We have no cardiac services on the weekend!" The exasperation in the disembodied voice increases with each repetition.

It is clear we are thick. That we should have known. Heart emergencies should only occur Monday to Friday.

Once more I hear Mr Grumpy trying to explain that I need to be seen. I hear him list off my symptoms yet again. I hear the sharp intake of breath and feel the change in his stance behind me. I know he's trying to maintain his cool. Yelling wont help, but I can feel the increasing tension as the angry voice behind the desk declares once more,

"We. Have. No cardiac services on weekends!"

And all I can do is sit.

I am stuck face-to-face with the wall that is the front of her desk. Uninspiring blue-speckled laminate. Battered laminated signs are intermingled with small black scuff marks and some questionable brown smudges. Even in the ER it is clear that the world is not made for wheelchairs. My head is a foot below the desk window. I can't even see the face of the irritated woman barking at us.

When it became clear that we aren't budging the voice leaves. Returning shortly with a nurse.

Two minutes of questioning and I am triaged straight through.

And here I am again. Looking up at the same white ceiling. Surrounded by the same blue curtains. Answering the same questions. Seeing the same confused looks.

I begin to list off my history only to be told, "that's enough". My history is too long and too complex.

So I lie there as the staff bustle around. Mr Grumpy moves from one side to the other trying to find a spot where he's both out of the way and available to explain when words fail me. He's the calm voice in the chaos that can stop them when they get it wrong, or grab my hand when he sees me falter.

Lying on the bed surrounded by rapid fire decisions and procedures. No time to process. Just lie still and let it be done. ECGs are ordered. Bloods taken. Veins blown. Nurses in and out. A friendly nurse tries to alleviate some of the tension by chatting in between tests and instructions. The doctor heads out to contact my cardiologist three hours away. And I must sit and wait.

Dehydration is a given. My lips are cracked and splitting.

Yes I drink. Yes I drink enough. Three litres today. I take volume expanders and pee stoppers. A glass of water wont do it. It's part of my disorder. But that's not why I'm here. Wait.

And then they are gone again.

Finally the doctor returns. She's spoken to my cardiologist. My ECG is normal. I need fast fluids. Then she'll talk to my cardiologist again.

I'm lying in the ER, being managed from three hours away. Because there are no cardiac services on weekends. It plays like a Monty Python sketch, "I'm sorry, Madam. We only do heart problems Monday to Friday. Now if you have a silly walk...." And in the background I could hear the machine that goes ping.

I lie listening to the long criminal history of the prisoner behind the curtain to my right. No privacy in the ER. If you miss a minute it will be repeated soon. The same questions. The same answers. Again and again. My answers repeated for whoever is in earshot. No dignity. No secrets. My life laid bare for all around me. Our communal stories floating through and above blue curtains. Mingling our misery with the more mundane stories of day-to-day life of those around us.

The two burly prison guards are discussing their home buying adventures. The police are taking statements. The doctors are discussing the woman with severe dehydration, the guy with the broken ulna, the old woman with low blood pressure. A Cat 1 is en route. ETA 10 minutes. The staff have just ordered pizza. Another is in the break room. The guards' radios sqwark. Someone laughs at a joke. Someone is crying.

I just want to go home.

Mr Grumpy points out my hairy gorilla legs where two of the ECG dots sit. Focus on the ridiculous to forget where you are.

The dots on my chest begin to itch. Meditation isn't working. The nurses are asking the guy next to me to rate his pain. A metallic voice overhead announces a MET call. And the ratchet sound of the IV pump continues on beside me.

The fluids fill my veins and I count down the minutes. The pain in my neck starts to fade. The abnormal beats in my heart don't reappear. There is no re-run of the jolts that left me gasping at home. The blown vein in my right arm hurts every time the blood pressure cuff inflates. Bruises are a given. And home is looking more and more inviting.

More discussions with my distant cardiologist. I can go home. Follow up tomorrow. Friendly nurse takes out cannulas and extricates the wires from my knotted up gown, before disappearing behind the blue curtain once more. We grab a copy of my bloods and I slowly redress. I pour myself into the chair and we open the curtain. The prison guards look slightly bemused at the woman in the vibrant pink dressing gown and sparkly red slippers who appears before them.

The nurse presses the button to unlock the door and we are allowed to leave.

The front desk is empty. The angry voice no longer there. There are others in the waiting room but in my exhaustion I couldn't tell if they were male or female. Young or old. I feel like wishing them luck. Hoping that the angry voice has gone home and someone new has taken over for the night.

The cool night air is freedom. The car park empty and silent. And I can breathe.

Back at home my shoulders relax. The relief is palpable. My son so used to my illness, simply asks if I had fun. I'm still exhausted. I still don't have answers. But more duct tape has been added to hold me together. A review of my bloods reveals that they aren't as normal as I was led to believe. I put them aside too tired to care. That's tomorrow's problem.

But I do make a mental note to only ever schedule heart problems, Monday to Friday. None of this inconvenient weekend business.


Don't forget to head on over here and donate to Dysautonomia Research here in Australia, at The Baker IDI. Lots of exciting research occurring currently and more projects on the way.


  1. Its just so ridiculous, almost like the little Britain comedy sketch "the computer says no". Im glad you eventually got the help you needed.

    1. Ah Carol. Love her. All I needed was for her to give me the cough at the end. :)

  2. I get so mad, SO mad, when I get the "the results were normal" speech only to later find out that, no, in fact they were NOT normal. Hopefully you get answers soon!

    1. It sucks doesn't it? I just got my hands on some results from my GI from a few years back and same deal. My fine results had red flags all over them. Grrrrr

  3. This sounds like my A&E last week well apart from the pink dressing gown and the red sparkly slippers lol. Hope u feel better soon (I know that's not possible having dysautonomia but I didnt know wot else to say) xxx rob

    1. Thanks Rob. Maybe try the pink dressing gown and red sparkly slippers next time, would be worth it for a laugh ;)

  4. So glad Mr Grumpy is there for you, to advocate for you, to make you laugh. I'm glad you're OK.

    1. Thanks Dorothy. I am very lucky to have him with me xx

  5. Sounds like last night for me, I also had some lovely neuro symptoms as well (raging migraine). My doctor was a horse's butt though, and refused to listen to me when I started to tell them what I need, and how a POTSie body isn't the same as a "regular" body, so my bloodwork may look great, but I'm still dehydrated. They stuck me four times for meds, bloodwork, and IV's, finally just throwing a tiny iv in my hand, then forcing magnesium through it (which hurts like the dickens). 11:30, I got home, one liter of fluids only, headache still a raging 10, throwing up my toenails.

    Most of the doctors at this one ER are really good. I just had to get the horses butt this time. Forget educating him, it was to no avail.

    1. Sorry you had to deal with that Becia. It's hard as there are good ER docs but if you are the patient who gets the crap one it makes the whole experience so hard. In this case at least my ER doc was willing to talk to my regular cardio and my regular cardio was great about me ringing on a Sunday. Hope you're picking up and feeling much better today xx

  6. I thought you had a paper thingie from the doctor now that said what to give you when you went in?

    1. I do for when I present with dehydration (has rates and volumes for IV saline and why I need it), but this time it was my heart and pacemaker and that threw them. I was dehydrated as well, which I knew going in, but wasn't worried about that for once. It was the extra beats throwing off my pacemaker, which meant it kept kicking in so it felt like a punch in the chest, plus pain up in my neck and I was getting accompanying disturbance in my head where I felt really wobbly (best word I can think of today) each time. Was a tad unpleasant. First time my heart has been a worry since the pacemaker. Really don't want to feel that again. Still recovering from it all 5 days later. Stupid disorder.


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