My Double Lung Transplant

Wednesday, August 25, 2010

More medical crap

Why is it that the most stressful part of medical appointments isn't the appointment itself, it's how you'll get there?

I havent really mentioned this aspect of myself before, so I will elaborate now.

I get IVs every 4 weeks - everyone knows that - because I was born with no immune system (ADA SCID it's called). I have been getting these IVs since I was 5 years old. How it works (more or less) is basically this way: you donate blood, and they put it in the bloody spinny thing that separates plasma and crap from other crap and single out the crap that I need - the immune system crap, the T and B cells. I get the the immune system T and B crap. And no, it doesn't look like blood, it's clear, and I do find a grotesque sense of joy as I watch it infuse into me. And yes I can feel it, because it's cold.


Finally, after the last 20 years of IVs, shitty veins, and finally a port, they've invented a new way of getting the stuff (IVIG): instead of IVs every month, they have managed to make it available in self injection form. HURRAY. This stuff is called vivaglobin and you can learn about it (and watch an incredibly long video) here:

So my immunologist has been suggesting that I try this little ditty out for the last year, but since I was fresh out of transplant last year, it kind've wasn't the right time to introduce something else into my system just yet, seeing as I was still mastering my new meds and the like. Well now, a year out, i felt it was ok to venture into a new world and will be giving it a go.

So i got a call from a chick named Loris this morning, informing me of my training session on Monday Sept 13th at 9am. A 4 hour one. And i need to go to my local hosp and or blood bank the day before and bring with me 3 vials of vivaglobin. How big they'll be I don't know, but luckily for me I have a knack for massive purses so i'm sure my trusty red purse will be sufficient enough to cart around these gems. But here's the kicker: how the fuck do i get there? This appointment isn't at TGH or Sick Kids, or Princess Margaret, which are all across the street from one another, and a block away from the bus station. It's not at Toronto Western which is across the city but accessible through the TGH (free!)shuttle bus system. It's at Toronto East, a land I have never been to. I've googled, and can get there by street car, which I've never taken, or Subway, which my friend tells me "if u get on the yellow line up to bloor younge station, then go east on the green line to coxwell station then ur just a couple blocks down from the hospital" because that doesn't thoroughly confuse me enough.

Did i mention that this appointment is at 9am?! and i'd have to fuck around on the subway system pretty much an hour before that? This means I'd have to catch the 6:30am bus to get into TO at 8am.

Or, I could take a cab, if i wanted to pay $50.

Or I could drive, and risk getting lost, getting off on the wrong exit, getting stuck in traffic, screaming, crying, and being scared because I've only ever driven to TO ONCE in my life b/c i depend on the bus.

I'm sure by Sept 13th i'll have this sorted out. But for now: seriously?!

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