As I sit here in the hospital, hooked up to an intravenous infusion…the last of five I have since the Monday before Christmas, I’m reflecting on my sudden change of status from ‘medical researcher’ to ‘patient’ with my dealings with sundry colleagues in my Dept (Med School) and the local collaborative Hospital.
The back story of this ‘sudden event’ in my life was I had a shunt from behind in my car at the end of Nov, just after my trips to the Gold Coast, to be a key note speaker at QUT IHBIinspires student conference, and to Canberra to participate in the AAS SAGE gender equality conference.
I had an instant headache, minor neck soreness…took 2 paracetamol & got over it. Within 30 hours, I had suffered acute demyelination of my optic nerves resulting in homonymous hemianopia (perhaps completely independent of minor head trauma from car accident). So spent my 40th birthday in early Dec semi blind…and not in a good way! After a couple of trips to the Ophthalmologist…who took 9 days to refer me for an MRI…as she didn’t have time to do the Vision field test at the first appt, I then had to wait 8 more days before they stuck me in the MRI tube…by which time my vision had returned 90% so I could drive myself to my scan.
On the day, I made gallows humour jokes with MRI techs about going in the tube for whiplash and coming out with a brain tumour. After they made me go back through with contrast…immediately, bumping their list, I knew something was up…(and was no longer laughing). I went to pay and the notes were marked ‘urgent’ and the admin lady didn’t know the code for what the MRI folk saw. I found out the next day (when I got results at the GPs) it was suspected tumefactive MS…she’d never seen it before, as too rare?
As they had sent me home from my MRI with my CD of 313 images the day before…and I had already seen the large lesion for myself on the on the contrast scans. Had sent the series that looked dodgy, via twitter DM to a mate who is a consultant specialist in Geelong (who offered to have a crack at rudimentary Dx). He called old MS lesion or scarring on the scary looking white patch on the scan. So…I was braced for impact when I got the full annotated MRI result from the GP the next day (Sunday before Christmas)
At 9 am Monday 22nd Dec, I emailed the referral letter directly to my chosen specialist….The head of the Clinical School at work, with whom I sit on several committees. He rang me that arvo, told me to get to the day unit immediately as he had arranged his Registrar to start mainlining a broad spectrum anti inflammatory (corticosteroid) into me as needed 3 days IV…and we had only 3 days left before Christmas. So I spent parts of the next 3 days, fielding shocked looks & urgent questions from my pharmacy & ID colleagues, who run the day unit. (No such thing as medical privacy when you work in a small regional Med School and collaborate with many clinicians at the Hospital!)
I managed to make the Med school end of year staff BBQ, with the IV line hanging out of my arm, to which one jolly japster (who shall remand nameless, to protect reputation) remarked, ‘Well, you’ll be able to mainline gin, now!’ << very tempting!
I didn't really sleep for a week over Xmas/New year….I've definitely had better festive seasons! I've spent a lot of time, talking my 3yo off the ledge, as she freaked out when I showed her the MRI pictures…she was convinced she didn't want a brain, as they appeared to be too much trouble (Epic SciComm fail there, Mummy!) My 7yo son thinks I really am Queen of the Zombies now, as I have empirical evidence for bits missing from my brain. I've also had IV iron x2 and IM B12 but my VitD levels are nearly double the recommended 50 units… 86! My proudest recent achievement…! Due to my love of (unhealthy) levels of sun exposure.
I was excited and humbled by the out pouring of support I received from my friends and followers on Twitter, many who came to support me 'in real life' over my time at home, adjusting to the prospect of having a condition (as yet to be fully diagnosed) that may be progressive, chronic and perhaps in time, send me functionally blind.
At the moment, I'm awaiting further tests: A lumbar puncture to confirm or deny presence of oligoclonal bands in CSF (15th Jan) and further (stronger) MRI (20th Jan) to see if IV & oral steroid (course finished 2nd Jan) has changed the lesion at all..and to check my whole spine for other lesions. These should then enable a step closer to a diagnosis, allowing for more nuanced anti inflammatory treatments, such as humanised monoclonal antibodies, that block the Individual inflammatory mediators (cytokines) or the molecules that T cells use ( alpha 4 integrin) to stop them crossing the blood brain barrier, to launch an cytotoxic autoimmune attack. But my serum also needs to make a trip to Germany, to check for John Cunningham Virus antibodies….and a positive result would rule out the use of the integrin blocker mAb…due to a nastier secondary side effect leading to other major immune defects.
But back to work on Monday, where I have to deliver a new unit for my course, that I was supposed to be writing in Dec/Jan/Feb…but I've lost 3 weeks of work time due to blindness. I'm hoping I can make a case for employing a casual academic to help me out in the next 6 months as I am unsure that I will be able to work at the same level of intensity as before. We shall see….!
(Thanks to @ad_mico for the idea for the title)