On the second last day in March, I headed to my GP’s surgery, explained to the doctor that I believed my symptoms were heading towards crisis point, and I thought I might need to be admitted to hospital, possibly for treatment. I’d never met this particular doctor. Before developing myasthenia, I hardly ever had reason to visit a doctor. I asked if he’d ever treated a patient with myasthenia; my new stock question of any medical professional. He said he had, once, but not as a GP.
He listened to me, then asked when I hadvmy next appointment with my neurologist. I told him it was in four days. He informed me that as I was under the care of neurology, and I had an appointment very soon, he thought I should wait.
I told him again that I thought I should really go to hospital, and asked him to read the last letter Dr D sent, the one that detailed how I would be able to have IViG or plasma exchange at short notice if my condition deteriorated. After reading, he asked me if I would like him to call the hospital. With relief, I said yes.
After calling through to emergency admissions and having a short discussion with the medical registrar, my GP told me I was to go straight to the emergency assessment ward at the hospital, and gave me a letter to take.
I tentatively walked the short distance back to work and let my colleagues know that I was going to hospital to get checked out. My husband couldn’t get to me immediately, so called his father to collect me and drive me there. In the car, as I started explaining what wa happening, my speech started to get really garbled. Every breath was arduous, so I gave up talking and rested my head back to take the strain from my neck.
I was ushered to a bay in the emergency assessment ward, and a nurse came to do my initial obs. He triesld to insert a cannula into my hand. On his third attempt, he gave up and announced that this was a first;
I’ve never inserted a needle into someone before and not been able to draw even a drop if blood!
I looked at my hand and could make out three pinprick holes, none of which were bleeding. He fetched a clinical skills technician who managef to find a vein in my hand that didn’t collapse, and I soon had a cannula securely positioned.
The nurse did obs and everything seem normal. He weighed me. I had been weighed exactly week before when I saw the surgeon, so I knew I had lost half a stone since then.
An on call doctor arrived. And another. Then another. They were fascinated to see a patient with myasthenia gravis. I started to feel like a freak show. They asked me lots of questions;
- When was I diagnosed?
- How long before that did I become ill?
- What were my symptoms?
- What medication was I taking?
As I tried to answer everything, it got harder and harder to speak. I showed them my health passport. It seemed to me they were simply satisfying their curiosity; none of them knew what steps to take, how to treat me. They finished by telling me that they were going to bleep the on call neurologist consultant to come and see me.
My husband arrived to take over and my father in law left. I guessed he was a little bit freaked out. He’d known me for twenty years and never seen me in anything like such a state!
I was moved to a short stay assessment ward to wait for the specialist. It was slightly more comfortable, but very noisy and hectic. I’d actually been on this ward almost three years earlier when my lung collapsed.
Later that afternoon a neurologist came to see me. He did the usual fatigability tests, listened to my voice get less comprehensible the more I tried to tell him what had been happening. He said IVIg (intravenous immunoglobulin) treatment neede to start as soon as possible, and assuring me I was going to be alright he headed off to arrange it to start that evening.
The ward got even more lively. In a side room a male patient, whom I assumed has mental health issues, kicked off. We heard furniture smash and saw security and police officers running. The nurses shut us in our bay. Afterwards, a teenage girl and young woman in my bay were more interested in chatting up the security guards for the rest of the night than they were in the Jeremy Kyle Show style events. My husband was quite reluctant to leave me and stayed long past the end of visiting hours. They couldn’t throw him out on time anyway, as we were all pretty much still barricaded in at that point! He finally left, practically pleading with me to try and get some rest. We both knew how critical sleep was for helping relieve my symptoms.
Much later, just before midnight, a nurse came along with equipment and immunoglobulin to start my treatment. She gave me the information leaflet to read.
She explained that the privigen infusion had to be started slowly and then increased incrementally as soon as they were sure I wasn’t going to have a reaction to it. Loading it up and priming the pump, she got it going and walked away.
Lying down slightly propped up by pillows I started reading the leaflet.
Within a minute or so I started to feel quite odd. A sort of cold sensation in the middle of my chest slowly blossomed out, and then…. nothing.
**Out of what seemed like a bizarre dream I woke up, my legs twitching as if I was having a convulsion. I managed to hit the alarm. Two nurses came running and stopped the infusion immediately. They checked out the pump and mentioned it had been running for nine minutes.
I told them I thought I’d lost consciousness and that I must have been out for at least five minutes, probably longer. They checked my obs, which were fine, but refused to restart the infusion. They bleeped the on call registrar to come and see me.
The doctor arrived at 3.30am and after hooking me up so they could monitor my heartrate continuously and my blood pressure at quarter hour intervals, she began running the infusion again. This time they watched. Me and the machines.
Again, within a minute or so the uncomfortable cold sensation in my chest was back. I told them that I had exactly the same feeling as when I’d passed out the first time. They manoeuvred my bed flat and told me to breathe deeply. Not to panic. Just breathe.
I was trying. I really was.
It passed. After the longest couple of minutes the awful feeling in my chest left me. The doctor told me that this was because my heartrate had come back up.
As the privigen had started to work it’s way through my bloodstream to my heart, my pulse had plummeted from around 80 to 40 b.p.m.
The doctor waited a while then explained that I was ‘primed’ and she thought I wouldn’t react like that again. The nurses were to continue slowly increasing the speed every half hour, and check my blood pressure every quarter of an hour. The heartrate monitor had to stay on all night.
It still ran quite slowly. I didn’t sleep much, with the blood pressure cuff inflating tightly every fifteen minutes. The privigen was a gloopy, bubbly concoction and towards the end kept getting stuck, setting alarms off on the machine. Morning came, the nurses did their rounds, completed handover to the day shift, and the third bottle was still going into my vein.
When, for what seemed like the tenth time the alarm on my pump sounded again, the sixteen year old girl in the bed next to me jumped up. She was all dressed in outdoor clothes waiting to go home as she’d been discharged. She walked over to me and asked what was in my drip, because it looked different to the bags of saline she and everyone else with a drip had. I told her it was immunoglobulin. She reached out and started pressing buttons on my pump. I nearly shrieked at her,
What are you doing?
I had already pressed my alarm and was waiting for a nurse to arrive. As soon as one walked in I called her over. This coincided with my husband arriving. I told them what had happened.
I couldn’t stay on this ward. It was making me worse. I hadn’t slept. A child just tried to reset the infusion that I had a reaction to last night. I wanted to see someone from neurology today.
**Please be reassured that I had a rare reaction to IVIg, this is very unlikely to happen to you! I would urge you to insist a medical professional remain with you for a while if you are having your first infusion as a precaution though. And I was absolutely fine afterwards, carrying on and completing the course of treatment.