You know, it occurs to me, courtesy of a Twitter convo, that many of my posts about Ms T's condition have been a little tangential. I've talked about the life we live, and occasionally named the condition or the treatments, but I haven't set down the basics.
So with her permission, I'll put this down so that I have a background to link to when someone asks.
It's an extravagantly-named condition: “Atypical necrotising vasculitis polyarteritis nodosa of the medium and large arteries”. If you're of a medical bent, you'll notice something about that. Every noun and adjective names symptoms and what those symptoms affect, rather than naming a disease.
So let's call the disease “immune system disorder”. In short, whenever Ms T's immune system is sufficiently active, it attacks “medium and large arteries”. It's like you had a kidney transplant and your immune system was attacking the invading kidney – except, of course, that Ms T's arteries are her own.
There aren't so many large arteries left to choose from. Her coronary arteries are just fine, heaven knows how. For the rest? Here's a list.
Right carotid artery – gone. She lives because a bunch of capillaries her body built around the blockage supply the right side of her brain, at about 10-20 percent of normal capacity.
Anterior cerebral artery – gone. If anything blocks one side of her brain, there's no backup supply. She will die fast.
Right renal artery – gone. There's a small collateral blood supply that leaves her with about 25 percent of the right kidney.
Various medium arteries in her right arm and leg – gone. You can't take Ms T's blood pressure on the right, it doesn't register.
Celiac artery – gone and replaced. This was the artery that told us something was wrong, because her stomach and liver failed. That got her to hospital, weighing a little over 30 kg, with broken ribs from falls (I was suspected as a wife-beater until she was conscious enough to defend me!), and toxemia.
Which is why she'd lost nearly every spare kilogram. In our years together, she has been known to complain about her breasts, which are normally a 12DD burden that gives her back pain, but when her body was consuming itself, that extra fat probably kept her alive, since they shrunk to skin-over-ribs.
The only way to deal with Ms T's condition is to shut down her immune system. That means chemotherapy, and the chemical that works best is called cyclophosphamide, and I've documented its effects on this blog here and here, at least, so I won't reiterate it. And it's carcinogenic, which is a nice thing to live with.
Right now? Things are stable. Once, we believed in remission; no more. But we're doing okay, and as I said, the purpose of this post is as a 1.01 for people who need to know the background.
And to everyone who's also on chemo, our thoughts are with you.