Welcome to the family – CVID?!

Wow, I have had one of those weeks. No – not one of those weeks where you mess everything up at work, then drunkenly message boys you should not be drunkenly messaging before eating a whole pizza and a box of donuts (I can do this and I am not even ashamed). No, not that type. I’ve had the other type of those weeks, the type you didn’t see coming that flips everything you thought you knew upside down and then some.

It started out innocently enough. Some tingling in my hands and feet, only transient, nothing more than a sensation. Gradually the tingling grew so intense in my hands that by Wednesday evening I was incapacitated. It was 7pm and I still hadn’t finished at work, but I literally could not type. My hands looked like something out of a horror movie – they had keeled over so my fingers were tight within the ball of my fist with just my index fingers sticking out like claws. Henceforth they will be known as claw hands.

Claw hands
Freaky paralysed claw hands

No matter how hard I tried, stretching my claw hands out was almost impossible. I finished up at work by jabbing at the keyboard with my 2 pointers, and somehow made it to dinner with friends, which was obviously a disaster waiting to happen.

“Don’t worry about me”, I said, holding up my claw hands to my friends. “Think I’m having an MS relapse, will deal with it tomorrow,” as I pored over the menu. I settled on a wrap, realising I wouldn’t be able to use cutlery and a wrap seemed like the claw-friendliest option. How wrong I was. I quickly gave up eating and my friends agreed we needed to call it a night. I was trying not to freak out but who was I kidding – I was definitely a little bit freaking out. I’d never experienced these symptoms in my hands before and knew at worst I’d just need some steroids, but was unprepared for how uncomfortable the sensation was.

ANYWAY, I somehow managed to sleep the claw hands off! I went and saw my neuro first thing the next morning who told me that because the claw hands were no more, I obviously wasn’t having a relapse but more likely my MS was just flaring as I had a bit of a chest infection. He wasn’t too worried and just said I needed rest and to let my infection clear up, so I went ahead and had surgery for my precancer that afternoon as planned and spent the rest of the day in a fentanyl-and-endone-induced haze.

But then the haze ended, and Friday saw the return of the claw hands. By this point I was also experiencing bizarre sensations in my legs, had intense pins and needles in my face and was losing sensation in my arms. After an awfully sleepless Friday night consisting mainly of pacing around the house trying to stretch out my spasming muscles and raiding the kitchen of all the snacks to distract myself from the discomfort (verdict: 3am Easy Mac makes extreme leg cramping less uncomfortable by 20%), I decided on Saturday morning that it was probably time to go to hospital.

So I rocked up to Monash around 10am and told the emergency nurse the deal. “Hi, my name’s Morgan and I have MS. I seem to be having a relapse <holds up claw hands>, can you just pop a line in me and give me some methylpred?”

HAHA thank God I’m not a doctor. No-one gave me the steroids I was pleading for, instead taking my bloods and discovering that my symptoms were being caused by an extreme electrolyte imbalance (should have drunk more Gatorade). And from there it all happened pretty quickly.

The emergency staff decided my condition was too much of an emergency for me to stay in emergency (yes, you read that correctly!), and they rushed me to the resuscitation bay, literally so I’d be in the right place if they needed to resuscitate me. Turns out they weren’t too worried about my claw hands as such, but having a potassium level as dangerously low as mine meant I was at risk of going into cardiac arrest.

Obviously this was all freaking the HELL out of me and I begged to be sedated, so a valium and 20 minutes later and I started to have quite a pleasant time 😎  By this point I had a line in both my arms delivering potassium and magnesium into my blood stream, and I was being fed potassium and magnesium liquid solution as well as supplements. After a couple of hours of this I was deemed stable (enough), and transferred to the ICU.

Just having a bloody great time in the ICU
Just having a bloody great time in the ICU

As the name suggests, the ICU is intense. I seemed to be the only conscious patient in the ICU, and the amount of care I was receiving was confronting because was I really that sick?? My first night was really scary, obviously because I didn’t understand what was happening to my body but also because the nurses and doctors were watching me like a hawk and I wasn’t even allowed to sit up in bed without a risk assessment. I was permanently hooked up to an ECG machine measuring for arrhythmia which meant trying to sleep with 12 leads on my chest getting tangled every time I rolled over. I also still had a cannula in each arm receiving non-stop electrolytes, but the ICU doctors decided that this wasn’t enough and that they should put in a central line into my neck or collarbone to get more meds into me faster, and save my smaller veins from potassium burn (because goddamn potassium infusions actually REALLY hurt). I laughed/cried/recoiled my neck so much at this suggestion that they agreed they could insert a PICC line into my arm instead, which was still pretty bloody scary.

Having a PICC line inserted was like being awake for a full-blown surgery (definitely an exaggeration but felt like it at the time). I had 5 scrubbed-in doctors and nurses hovering over me, a local anaesthetic (although I begged to be put to sleep), more valium (thank God), an ultrasound of the veins in my arm and an x-ray to make sure that the line they inserted in my ARM had been pushed sufficiently far in enough and was positioned above a vein in my HEART.

~ PONDERINGS

  1. Science is amazing.
  2. How did they put a line in my arm and push it along far enough/in the right angle to lead into my heart?
  3. I AM SO GROSSED OUT BY THIS.
Just practising my casual 'there's a PICC line going into my freaking heart from my elbow but I'm not even bothered' stance. Accessories: IV pole (kindly on loan from Monash Hospital)
Just practising my casual ‘there’s a PICC line going into my freaking heart from my elbow but I’m not even bothered’ stance. Accessories: Bag of potassium & IV pole (kindly on loan from Monash Hospital)

In the ICU I was woken every hour or so so that the nurses could take my bloods, check my obs and hook me up to fresh bags of electrolytes. The worst part of this was that I was receiving regular updates on my electrolyte levels, and despite doing nothing besides lying in bed receiving bag after bag, my levels would get to a satisfactory point and then drop. Once again, my body had decided it hated me and was attacking itself. My immune system was destroying my electrolytes.

After 2 nights in the ICU, I was finally well enough to be transferred to a ward and spent another 3 nights being monitored in a gen med bed. Throughout this time I had a zillion blood tests, neuro exams and interviews from med students because they’d heard I had an “interesting history”. Ha. But finally, the immunology team came to see me.

~ THE ANSWERS

I had the head of the immunology department on my case, as well as about 5 doctors underneath her trying to unravel the mystery that is ME. And it looks like we might have got somewhere! I have long suspected that I have a severely abnormal and defective immune system (obviously, since I have MS). But the way that my body has reacted to immunotherapy has stumped my specialists for years, and other people with MS who obviously also have faulty immune systems do not have the same complications that I do.

The immunology team think I have CVID (Common Variable Immune Deficiency) – which despite the name is not that common – Mr Google tells me the incidence is between 1:10,000 and 1:50,000. And this explains A LOT. It explains my predisposition to autoimmune disease, it explains why I have had unprecedented life-threatening side effects to immunotherapy and it explains why I am so frequently sick. And the great news is that it can be treated – the immunologists said they treat CVID with monthly immunoglobulin transfusions. Obviously I am not thrilled about becoming dependent on live blood products for the rest of my life, but I AM excited about the prospect of improving my immune system. Apparently correcting my immune system will also mean that we can target my MS more aggressively, so it sounds like a bit of a win/win.

I went through the photos on my phone and realised I took a bunch of selfies in the ICU when I was on valium... Millennials are so vain.
I went through the photos on my phone and realised I took a bunch of selfies in the ICU after a strong dose of valium… Millennials are so vain am I right?

So as you can imagine, I have spent most of the last week absolutely loathing my own body, being disgusted and ashamed of it to the point that I have felt physically sick. Frustrated beyond belief that these are the cards I’ve been dealt, and that I will never know a life without being sick. But today I feel strong and am looking at my body with a newfound respect. The shit my body has had to endure over the last couple of years has been awful, but it has always bounced back. For this reason, I thought I should end this post with some gratitude:

  • I am grateful that I wasn’t having an MS relapse. A relapse would have meant a much longer recovery time, likely permanent damage to my Central Nervous System and a reminder that my disease is progressing.
  • I am grateful that I can continue with Zinbryta.
  • I am grateful that we are one step closer to solving my immune problems and that it can be treated.
  • I am grateful for the incredible medical team at Monash who fix me up each time.
  • I am grateful for my family and friends who sat by my bedside and listened to me complain and brought me my favourite foods.
  • I am grateful for the friends I have made through Mosaic Avenue and for their messages of support.
  • I am grateful for my own resilience and know that I will be laughing this off in a week and planning my next adventure.

Love Morgan xx

One thought on “Welcome to the family – CVID?!

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