I arrived at the neuro critical care unit late in the afternoon.
The women in my new bay were a different kind of ill to the lovelies I’d left behind. Some of them were neurosurgical patients. These were warrior women; survivors of burst brain aneurysms. A couple had neuromuscular diseases, like me.
Nobody came to ‘check me in’, so I unpacked, settled down and ate the soup I was given. No pureed food was on offer yet. My husband and daughter visited and found me unexpectedly emotional. I hadn’t realised how unnerved I was about being moved so far from home, and the impending new treatment. I was uncharacteristically quiet after my family left. Until the smiley woman from the bed in the opposite corner stopped by my bed to introduce herself on the way back from the bathroom. Telling me her name and that she was awaiting tests and diagnosis, she asked mine. I was surprised when she told me her sister had myasthenia. She was only the 4th person I’d met who had heard of it. She was a real sweetheart, reaching out and asking if she could hug me. I nearly cried.
I was able to stay positive as long as nobody felt sorry for me.
The next morning a neurological team came to see me. These were doctors who were very accustomed to seeing patients with MG. I was not one of the three or four per year that my local hospital was used to.
After the usual assessment, the professor told me they wanted to try and fit me in for a course of plasmapheresis (plasma exchange or PLEX) that week, starting Thursday. Had it not been for the Easter bank holiday weekend approaching, they would’ve waited until the following week.
A short while later he came back and confirmed PLEX would start the next day. He explained I would have a central line inserted that afternoon.
I didn’t know much about this treatment, other than it was considered to be the premium fix for MG.
My husband arrived just before the porter, to take me to Vascular Access Services to have the procedure. All I knew was that I would have a line inserted into either my arm or my neck. I was beginning to understand this wasn’t going to be a straightforward cannula.
The lead nurse introduced herself and told me I was to have something they called a ‘niagara‘ line inserted into a vein in my neck, under local anaesthetic. She introduced another nurse who was training as a vascular nurse. She asked if I would allow her to perform the procedure, supervised and monitored, of course. I agreed and signed the consent form.
I took deep breaths as they wheeled me in to start the procedure. Still on my hospital bed, they manoeuvred it until my head was lower than my feet and scanned the big vein in my neck. A nurse held my hand and told me to squeeze as much as I liked, as the other nurse applied stinging antiseptic solution followed by a sharp scratch as she injected me with anaesthetic. I focused as intently as I could on the nurse holding my hand and kept as still as possible.
It was hard to breath steadily and try not to freak the fuck out, while trying not to quiver or move at all!
I felt the pressure on my neck and then the pop as my skin and vein were penetrated. I couldn’t quite describe the feeling of the catheter being pushed down inside my vein, and further down into my chest. It didn’t hurt exactly, but it wasn’t a comfortable sensation, and I had to resist the urge to squirm away from it. Once in position it had to be secured. The nurse warned me again it would sting a bit as she punctured my skin around the fresh wound, to stitch the catheter in place. I think some tears leaked a bit at that point, or my eyes watered. I wasn’t aware I was crying, until the nurse holding my hand dabbed at my face with a tissue. During the entire operation I did what I usually do; talked. I asked my trainee vascular Nurse E where she was from, as I thought I recognised a Spanish accent. She confirmed, and better still, she originated from my favourite Spanish city. We chatted about the sights, which successfully distracted me from the task at hand.
It was all over in thirty minutes. It seemed to last for hours!
Back in recovery, my husband was chatting to an elderly woman who was alone and very frightened. I couldn’t speak terribly well, the anxiety and mestinon wearing off made my speech really unintelligible. So I asked my husband to ask where she was having her line inserted. She said her arm. I tried to tell her it wasn’t that bad, I had one in my neck, and I was fine, see! My husband had to translate.
Nurse E came to see how I was. I told her she had done a fantastic job and I’d recommend her. She leaned down, took my hand and kissed my cheek.
Once she’d had an x-ray of my chest done to check the position of the line, I was collected to go back to my ward. I hadn’t realised until that point, that the catheter went all the way down close to my heart.
The next day two apheresis nurses arrived at my bedside.
I found the equipment and process both fascinating and horrifying all at once.
They were going to connect the taps of my catheter up to their machine, with all it’s bottles of human albumin solution (HAS), anti-clotting potion and calcium, and suck my entire volume of blood out of me in less than two hours.
They had to pump anti-clotting stuff into me so my blood didn’t clog up the tubes. The process of extracting my plasma depleted my blood of all calcium, so they had to put some back. And the HAS simply replaced the volume of plasma that was removed while my body made more.
It was unexpectedly painless. I didn’t feel anything at all. I’d imagined I would be able to feel something, but no, it was totally innocous.
The time passed, my blood recycled, whizzing around in the centrifuge at 3,000 r.p.m. and my plasma filled up the big rectangular bag hanging from the machine.
When it was over, the nurses warned me that my blood pressure, as well as my calcium could be low, and that I should be careful when I first got up after resting. And to eat plenty of cheese and yogurt.
I waited an hour before venturing to the toilet. I sat up and waited a minute, then stood beside my bed for another minute. My husband held onto my arm and off I went. Everything was good until I stood up after going to the loo. I suddenly felt sick, very sick. I sat on one of the chairs by a sink, and dropped my head. I felt hot and clammy, dizzy and faint. My husband got a nurse but I couldn’t get up. They had to wheelchair me back to bed. Even then I couldn’t make it the step from chair to bed. After an anti-nausea injection straight into my neck catheter, and another five minutes of deep breathing, I made it into bed. My obs showed I was hypotensive. I’d always had quite low blood pressure, but this was a bit more extreme.
After a nap though, I felt good. Better than I’d felt in a long time. I could actually speak more than a couple of sentences without my voice distorting.
The magical blood washing machine was miraculous. Even if there were some negatives, I was amazed at the difference already.
Four more PLEX treatments to go. I couldn’t wait for the results.