Improvement in my symptoms seemed to plateau as soon as my privigen infusions ended.
Apart from the obvious signs that I was out of danger; I continued being capable of breathing and swallowing fluids, the rest of my symptoms stubbornly remained.
I was visited by a team of neurologists the afternoon after my last IVIg, marking almost a full week in hospital. The team consisted of eight consultants.
I wondered what the noun was for a collective of neurologists!
A transfusion? A nervous system? A clot?
They ever so thoroughly put me through the usual fatigability tests and some new ones. It showed up my weak neck, useless hands, feeble legs and the return of my left eye droop. Not to mention (because it’s hard to mention much at all when speech is impossible) the lack of improvement with my voice, inability to puff out my cheeks or purse my lips.
They discussed options and possibilities. It was obviously good that the treatment had pulled me out of crisis. But it wasn’t enough. I wasn’t what they would consider to be stable yet. My condition still had the potential to deteriorate quickly again.
So apart from determining the next course of action, the neurologists suggested that my resistance to treatment might be due to either Thelma* and/or Ted* having grown, or there possibly being another antibody at work against me.
MuSK. Muscle specific kinase
The doctors wrre wondering if the acetylcholine receptor antibodies had a little help in trying to bring me down!
They concluded that they wanted to keep me in because I wasn’t medically fit for discharge. I was to have a repeat chest CT scan and the MuSK antibodies blood test. They also wanted to wait few days to see if there would be delayed improvements from the privigen.
Hanging around waiting for improvement wasn’t such a bleak prospect. I’d grown very fond of the other women in my bay, my ‘flatmates’. They were all much older than me. Most of them suffering with some form of dementia, which appeared to get worse at night for some unknown reason.
During drug administration rounds that evening, things got lively. The favourite of all my lovelies decided the nurses were trying to poison and steal from her. She demanded the police be summoned. The other lovely with more severe dementia joined in. It looked like they were going to stage a coup at one point, until second lovely calmed down after taking a sleeping pill. But lovely number one was on a mission by then. She beckoned me over to tell me she was listening to everything, she was storing it all away, and could I see the cats running all over the woman’s bed in the corner? Then, up she got, accusing the staff of keeping her prisoner in ‘their house’, she insisted she was going home to work in her garden. They chased her around some, trying and failing to persuade her back into bed. Their primary concern was that she might fall over again. It was a serious fall that had landed her in hospital with broken ribs, concussion and stitches all over her head. Finally they convinced her to sit and work on a puzzle with an HCA through most of the night.
At 5am she got restless again, grabbed a zimmer frame and started racing around as fast as she could, in and out of every room and bay. She wanted the attention of ‘a man’, possibly a policeman she thought was outside. So she frantically tapped at every single window.
Eventually as breakfast time came around, the staff got hold of her family, who arrived, looked after and supported her. She seemed much better during daylight, though extremely tired.
That afternoon, another lovely who seemed to be very ill, but recovering took a bad turn.
After lunch and chatting, most would nap, only waking when obs were done or visitors arrived.
The HCA doing obs that afternoon was a student. She tried to rouse our lovely flatmate in the corner. She was unresponsive. Our HCA sounded the alarm. Nurses came running. They shouted for the doctors who were on the ward. After grabbing resuscitation equipment they swooshed her curtains round. The rest of us sat in our beds and listened as they tried to save her. After well over half an hour of hearing the machines bleeping with repeated attempts to bring her back, they called her time of death. Renal failure.
Sadness hung oppressively over the room. I’d chatted to her after lunch. Her family had all been visiting, happily huddled together around her bed earlier. I don’t think her death was expected despite her illness.
Life moved so fast. Everything could change in a instant. Literally.
My resolve to resist myasthenia rather than it resist treatment, stood up and curtsied.
As far as my will to conquer was concerned, I was already winning.
For readers who haven’t checked out my previous blog posts…
*Thelma is the name I gave my thymus gland
**Ted is my thymoma