Going to A&E scared me. Partly because I couldn’t speak properly, so making myself understood was challenging. But mostly because I was unlikely to be treated by doctors or nurses who had any experience of myasthenia, and probably might not even have heard of it. When life depends on fast, appropriate action, and not being given any of a long list of contraindicated drugs, that’s a scary prospect.
I was fortunate to be seen very quickly, due to a relative who worked in A&E having phoned ahead and briefed the receptionist. I waited a few hours with my dad before being moved into the emergency assessment area to wait for them to decide what to do with me. My husband arrived shortly after I’d been moved.
My alarm went off to remind me to take my next dose of mestinon. I’d forgotten to bring my pill cutter. So I popped it into my mouth and took a sip of water. And another.
It was stuck.
At the back of my throat. Right at the point where it could go either way, either down my esophagus or trachea. And I didn’t have enough control or strength in my throat muscles to cough it up.
Don’t panic. Don’t PANIC. DON’T PANIC!!!
I told my husband to get someone. That they might need to suction it out of my throat.
I tried to calmly sip water, but couldn’t dislodge the pill. I coughed and felt it move slightly, but in the wrong direction. I asked my dad to tell them to hurry. Two nurses rushed up with my husband. Unconcerned, they told me to stay calm, I simply needed to cough it up.
I gagged, sipped water, gagged some more and it finally started to edge down my esophagus.
Off the nurses went, emergency over. I sat there crying.
An on call doctor came to see me. He decided to admit me, and told me I had to have a nasogastric tube (NG tube) inserted to safely give me my meds. He also changed my steroid delivery from pills to intravenous.
I was certain nobody would be able to get an NG tube into me. Twice before experienced nurses hadn’t been able to. But I was quite willing for them to try. The thought of choking on my pills again, or worse, being unable to take them at all, was far more frightening than having this tube poked up my nose and down my throat. To my surprise, it went in fairly easily. I gagged a bit as it was pushed down into my stomach, and my eyes watered, but it was in and I was relieved.
Afterwards they moved me to the ward I’d spent time on before, to await the arrival of my neurologist the next morning.
My spirometry readings were low. Not quite bad enough to require ventilation though, to my relief.
Dr D came to see me. He asked what had happened. I’d been so much better when he’d seen me before discharge only a week earlier. Had I been taking my medication properly?
I take my meds religiously. I keep a diary. I have alarms to make sure I take every dose on time. This hasn’t happened because of anything I have or haven’t done.
So he ordered another round of IVIg to get me out of crisis. Again. I hoped it might do more to help, although it hadn’t last time. He was perturbed to see I was on IV steroids. He checked my drug chart, wanting to know who had decided to change my meds. He wasn’t at all happy and ordered it be changed back, with a calculation to work out how short of my daily dose I was once it was converted. It turned out that what I’d had was only 3/4 of my regular dose. In addition, Dr D ordered another CT scan of my chest to see if there were any changes to Thelma and Ted.
Immunoglobulin round two commenced with no drama. But the ward sister decided to move me from the bay at the end of the ward to the one closest to the nurses. Because they had to constantly feed drugs into my NG tube as well as monitor my fluids drip, IV feed and IVIg.
I asked for pain relief that evening for the headache I had from the IVIg. The nurse got some liquid paracetamol to syringe into my tube. I’d sort of become used to the feeling of liquid running down the back of my throat via the tube by this time, and ignored the urge to unnecessarily swallow. I was messing about on my phone at the time, so when the thick, gloopy paracetamol syrup started to fill up my throat, I sat bolt upright and doubled over coughing and choking. The nurse stopped immediately, eyes wide open, and asked me;
Could you taste that? What just happened?
I told her I could taste it, and it had somehow come out of the tube and into my throat. She reached up to touch the tube where it snaked out of my nose, and it fell out. It had somehow unravelled itself from down in my stomach and uninserted itself.
She said I had to have a new tube inserted straight away. I was due my mestinon, and at this stage, while they were trying to get. control of my symptoms, it was vital my drugs were administered precisely on time.
This ridiculously small problem pushed me over the edge. All day I’d been putting a mask on and pretending the damned tube didn’t bother me, when really I could feel it at the back of my throat constantly. It irritated my nose making it permanently run like a dripping tap. My eyes stung all day.
That night my bedtime spirometry FVC reading was 1.30.
No! Being ventilated while conscious was the last indignity. The final failure. Not being able to write, speak, hold my head up, swallow…. all chipped away at my sense of survival. But, breathing? Kind of vital. Immediately so. A person could go days without food. Even a while being deprived of water. Inhaling and exhaling I couldn’t do without. Not at all.
As the nurse disappeared to alert the on call doctor, I remembered querying whether I’d been topped up to my full dose of steroids earlier. Not being able to self administer my meds made me feel less in control of my situation than I was comfortable with. I asked the nurse to check again when she returned to pump my mestinon into my feeding tube.
It hadn’t happened. I was running light on steroids. She quickly fed them to me. I lay propped up, willing my breathing back to a semblance of non-critical.
For the third time in a month, I narrowly escaped being ventilated. My body flirted with a catastrophic inability to function and pull back from the brink far too regularly.
Why was I bouncing from crisis to crisis with barely any respite?