Awkward customer

I can’t breath very well. I can’t swallow anything. I can’t speak.

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I was visited by three neurologists who examined me, going through the usual myasthenia fatigability tests. When they found out that I was unable to swallow much soup, fluids and was having difficulty taking my meds, they said I needed a nasogastric tube. This would enable the nurses to get nutrition and drugs into me.

As they left, they assertively told the ward staff that I was under their care now, that they must get an NG tube in me, and if my breathing deteriorated further they were to call the critical care team.

A nurse arrived to insert the feeding tube. Assuring me that it was an uncomfortable procedure rather than painful, she started poking it up my nostril. I was quite calm, following her instructions to try to swallow as she attempted to manoeuvre it up and over, down my throat. Only, it wouldn’t go. She tried again. Then she tried the other nostril. Finally attempting the first again before giving up. Bemused, she told me she was going to find someone who was a bit of an expert at it to have a go.

Along came a confident nurse from the stroke ward. Smiling at me, she said she inserted NG tubes every day and had never failed. My husband and best friend watched in horrified fascination as she too tried and failed to get this tube into me. Finally, she gave up because my nose was starting to bleed and hurt slightly.

My visitors thought I was brave. Really I was just desperate. I needed that tube so I could take mestinon and steroids. How the hell was this crisis to be averted if I couldn’t even do that?

I was given a saline/dextrose drip to counter the dehydration, and IV vitamins, but was still having issues taking my meds. The nurse said if I still couldn’t swallow by Monday they were going to try once more with x-ray so they could see what the obstruction was. If that failed I would have to have a tube inserted directly into my stomach.

Later that evening I was moved to a neuro ward, the last day of March and my second in hospital. My next IVIg infusion had been postponed until the next day, as the first hadn’t actually finished until well into that day.

I slept slightly better, and woke up Saturday morning to my 7am alarm telling me to take my first dose of mestinon. I’d been really struggling to get the meds down, even when I chopped them into quarters with my pill cutter. 

I choked and spluttered with each tiny fragment and sip of water. My nose and the back of my throat burned from aspirating water. In the end, I chewed the final piece and let it dissolve in my mouth. 

I couldn’t even swallow my own saliva. My mouth was filling up and my throat was frozen. 

I made my way across the room to the toilet very slowly. I had to stop a couple of times because I was so breathless.

Back in bed I sat up trying to breathe more deeply. I couldn’t catch my breath. I replied to a message from my husband asking how I was, telling him I couldn’t breathe properly. I could barely get my mestinon down.

He asked if I’d told the nurses;

I can’t tell them. I can’t speak at all! Please come now, I need help.

I had a flash of inspiration as I waited for him to arrive, and tapped out a message on my phone.

I can’t breath very well. I can’t swallow anything. I can’t speak.

I pressed my alarm and showed it to the nurse who arrived. He grabbed a machine to do obs, but didn’t seem overly concerned. My husband walked in and I had to really try not to cry with utter relief. Crying would produce more saliva that I couldn’t swallow.

I was getting worse. I typed another message for my husband;

I need the critical care team.

He told the nurse, who still didn’t seem to understand the urgency. 

So my husband walked off to find someone who would. He came back with a ward sister who told the nurses to bleep the critical care team for me. Finally things started happening. A critical care nurse arrived. She calmly reassured me that whatever needed to happen, would happen, then went to read my notes. 

My nurses came back more hurriedly with a spirometry device to measure my breathing. I’m informed that an FVC measurement of less than 1.5 would require me to be ventilated.

I breathed into it. It measured 1.56

They started setting up my second IVIg infusion. I was also brought a tub of jelly and a pill crusher. I had twelve small steroid tablets that I needed to try and get down. My husband mashed them into powder and mixed them into the jelly. I started eating it in tiny bits. It took me just over three hours to eat the whole tub. After every small spoonful my mouth filled with saliva again. I had to wait until it stopped before the next small bite.

I started to feel ever so slightly better a few hours into the privigen infusion. My hourly spirometry tests improved a little, just enough to take me out of the danger zone. I was able to talk again. Not so that anyone could understand me, but I could make noise at least!

The next day however (Sunday), there was little improvement. I spent most of the day stuffing tissue in my mouth to soak up my saliva. 

I could not even swallow my own spit

I reached a whole new level of desperately frightened. My spirometry tests only just staying above dangerous after my 3rd privigen infusion. Every single mestinon tablet I took had to be dissolved in my dry mouth in tiny pieces over the course of thirty minutes or so.

My worst fear was being intubated while awake. Now I was also fearful of possibly having a tube inserted straight into my stomach.

Nothing so far had been straightforward.

My veins collapsed when they tried to cannulate me.

I had a severe, rare reaction to IVIg.

The nurses couldn’t get an NG tube into me.

What else could go wrong?

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