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.
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