The night of my 1st plasma exchange, my heartrate soared. I was alarmed to see it flash up 127 when my obs were taken that evening. No matter how still and calm I tried to be, how much I meditated, it wouldn’t drop below 110.
My 2nd plasma exchange (PLEX) was done by a different nurse. It was Good Friday, so I supposed she had drawn the short straw. She told me she was a Buddhist and didn’t ‘do’ Easter.
Nurse S insisted I was flat throughout the procedure, as I was still verging on being tachycardic that morning following the previous day’s initial PLEX. With my usually low blood pressure being lower than normal, she was cautious.
But we chatted and laughed regardless, she even offered to take photos for me when I told her I was writing a blog! I was fascinated by the procedure and she had years of experience in pheresis. I quizzed her about how often they did PLEX for myasthenic patients, how long the effects lasted, and more. Being a neuroscience centre, they saw a lot more people like me than an average hospital. I found this kind of reassuring, not having to explain what was wrong with me and how it affected me. It made me feel more normal! The neuro nurses on my ward all knew what myasthenia was, and were all aware of the myriad implications.
This round passed without drama, afterwards I ate my pureed dinner and asked for an anti-nausea injection as soon as I started to feel queasy.
The next morning, day 3 of PLEX, Nurse S arrived a little later than before. She told me it was because my morning blood tests showed my clotting factors were too low and she’d had to collect fresh frozen plasma (FFP) to add to the mix. She also said that my pulse remaining consistently high showed I was having an adverse reaction to the treatment, but this was easily resolved by administering an antihistamine. So after I took the extra calcium and antihistamine tablets, she loaded up the machine, laid my bed flat and off we went.
It passed quickly, and thanks to the antihistamine I felt a whole lot better afterwards. No nausea, and although I was still tachycardic, my pulse didn’t get above 115.
I had a rest day on Easter Sunday. It was a sunny day, and I was excited to have some family visit. Of course, my husband came every day, but it was long way from home so I didn’t see as many people as I had when resident at my town hospital. They grabbed a wheelchair on their way up to the ward and took me off for coffee outside. What bliss! To sit in the fresh air with the sun shining. I’d been in hospital for over two weeks by then. I even tried some solid food, nibbling at a soft cake and washing it down with coffee. It was the first time I’d eaten real food in more than three weeks.
Eating that cake I noticed something.
A while previously, over a year before the onset of my acute myasthenia symptoms, I’d developed a taste disorder, specifically Dysgeusia. I realised after baking a 21st birthday cake for my best friend’s son, that sweet things no longer tasted sweet. I had hoped it was temporary. I had a voracious sweet tooth and wasn’t ready to embrace giving it up!
After a few weeks of experimenting, I discovered that chocolate/caramel spectrum flavours were distinctly salty, but anything fruity was just sour.
I never saw my GP about it, thinking it would just return to normal in time. Every other week I would try something sweet, and be disappointed when it tasted awful. Eventually I gave up sugar completely, and convinced myself it was OK because I was healthier.
But that soft cake from the coffee shop tasted sweet. The PLEX treatment had restored my sense of taste! I hadn’t considered it might be related to myasthenia, but it seemed too much of a coincidence. I made a mental note to talk to Dr D about it.
Easter Monday came around, and with it my 4th treatment. I was feeling so much stronger, my speech was virtually normal and my hands worked again. I had high hopes for being allowed home that week.
My pre breakfast obs showed a worryingly low blood pressure of 80/45. Rather than doze off for another hour, the nurse said I had to sit up and drink a jug of water (increasing fluid volume = increasing blood pressure). The Speech and Language Therapist (SALT) had detailed in her swallow assessment that I wasn’t to lie down for thirty minutes after eating or drinking in case I aspirated anything into my lungs. When the pheresis nurse arrived, he said that as well as the antihistamine, calcium and the usual accompaniments, he was going to push 500ml of saline into me very quickly at the start of the procedure. The extra IV fluid and salt pushed in that fast, would in normal circumstances cause high blood pressure, but as PLEX had caused mine to drop, all it would do was give me a head start.
It all went well, my blood pressure remained my normal low rather than scary low. By the end, the only notable downside was that I was on the verge of wetting myself!
PLEX finale day arrived. It went without a hitch, but I felt debilitated afterwards. I fell asleep as soon as I’d eaten my pureed dinner.
When I woke up though, I felt incredible, in comparison with the way I’d felt for the last six months at least.
I had another swallow assessment plus the neuros coming to see me the next day.
Maybe I would finally be going home.