braaaaaains

   Y'all are adorable.

   No, Ze Brain is not supposed to look like that.

   I'm pretty sure I've mentioned Hotter having had a stroke at some point before, but yeah. After his organ transplants, he ended up with a condition called polycythemia, in which too much of one's blood-volume is comprised of red blood cells. Polycythemia can be caused by lots of scary-assed things, but in Hotter's case seems to have been related to the transplants, or at least his transplant team sees it a lot. Something about erythropoietin (the hormone that spurrs one's bone marrow to produce erythrocytes, i.e. red blood cells) being produced by the kidneys and him having more of those than the average bear (counting native ones and the donor one he has three, although if his native kidneys wanted to get off their asses and DO something, it'd be nice if they'd, oh, LOWER HIS CREATININE instead of perform some kind of blood-doping black magic that almost killed him--this just goes to show you that Hotter is perverse to the very CORE).

   So anyway, if you've ever roasted a turkey CORRECTLY, i.e. in broth into which you've chopped a lot of carrots, celery, onion, and garlic, you'll know that when you go to baste the bird it can be tricky because of all the lumps that'll block the flow of broth into the baster, and Hotter's brain did one of THOSE numbers, and whereas this situation is a pain in the ass around Thanksgiving when it happens in the roasting pan, when it happens in the major arteries of the brain that's a stroke, and the brain doesn't like oxygen deprivation so the hunk of Hotter's brain that didn't have blood flow while there was a clot just upped and died and was replaced by fluid (the black part of the scan), and the part that had blood in it where blood didn't belong after the clot BLEW and the hemmorhaging began got scarred (the white part of the scan), and the brain doesn't like scarring either so now dude has complex focal seizures from time to time, which are not awesome.

   To stop the seizures, Hotter takes a hefty dose of an anticonvulsant drug, which is monitored by his neurologist. Anticonvulsants are less a cure for seizures and more a pharmaceutical game of "would you rather," especially when someone has as many OTHER things wrong with them as Hotter does and as many OTHER drugs at play for those. Would you rather...have grand mal seizures during which you lose consciousness and stop breathing...or run a small risk of ALL OF YOUR SKIN FALLING OFF, have lots of wee LITTLE seizures (myoclonic jerks) instead, and also have eleventy-seven OTHER unpleasant side effects if your levels are too high, including things like dizziness, loss of balance, confusion, memory and cognitive problems, mood swings, and apparently some bad things that can happen to your vagina if you have one, which fortunately for MANY reasons, Hotter does not. Apparently if the levels get TOO high the drug he's on can even CAUSE seizures of the sort Hotter is taking it to prevent. Anticonvulsants are actually pretty shitty drugs, and it's better to just not need them in the first place.

   Those of you who have been playing along at home will recall that a couple of years ago Hotter started having breakthrough seizures, so they upped his seizure meds at that time, since his levels were on the lower side and there was room to go up. Since then, though, Hotter's renal function has taken a (small) hit, which alters your metabolism of...things...and also he has developed some pretty major GI issues and lost thirty pounds. Which brought his anticonvulsant levels from "on the higher side, but well-tolerated and no seizures so WIN" into the "here is where you have every known symptom of another pending major stroke and/or a couple of degenerative neurological things that end in death" range. I did consider that perhaps Hotter's altered bodyweight had resulted in minor toxicity of one of his bazillion or so medications, but given that none of them are NEW and it was ONLY thirty pounds, major badness seemed a lot more likely, hence the Unbloggability.

   So the current plan is the drop the anticonvulsant dosage, give things a week or two, and reassess. If there are no breakthrough seizures and the scary symptoms go away, we declare victory and erect a small, tasteful shrine to Hotter's neurologist in the living room, just some oranges and incense, nothing too crazy. If there are breakthrough seizures or the scary symptoms stay the same or get worse, we go back to the neurologist for a drug change and possibly some more testing. And either way, we both take a moment to remember how very precious it is that Hotter is even alive to HAVE problems like unpleasant side effects and a wife who devoutly wishes he'd not be an occasional arsehole and also put the GOT-DAMN butter back into the refrigerator after he's done with it, which was a lot of what motivated the neurologist to show us both the scans yesterday. Because he's really "quite remarkable," as the neurologist gushed several times during the appointment yesterday, and "it's a wonderful world we live in."

 

P.S. Hotter no longer has polycythemia. For a while he had to go and get bled periodically, while he waited for a drug that artificially induces anemia to take effect, and then it did, and then it started working TOO well so they stopped it and the polycythemia never came back. Whether this indicates that his native kidneys finally fucked off and died the REST of the way, or is just a stroke of luck...is kind of anyone's guess. But they check his H&H every time they check any of the other umpteen levels and measures of function, so if it comes back it'll hopefully be caught before it causes anything ELSE bad to happen.

Comments

[Lala]

coolio, I feel like I just did rounds

[Celeste]

Thanks for the explanation. Perhaps he & my son can form a club - based on MRIs my little guy should be non-verbal with significant cp, instead he's a rambunctious first grader who will never be an Olympian but is pretty active, reads everything. & likes to do his big sisters math homework. At the neurologist a few weeks ago, there was a resident who came in, chatted with my son, then asked him where his brother was (he doesn't have one) & fell off his chair when he discovered that this was the kid who matched the scans. Anyhow, my point is that our brains are amazing, & drs really only know a little about how it works ;). Good luck with the new meds routine.

[Becca]

still, i don't feel like his brain has been a very good sport about this whole thing...i'm mean dying at the sight of blood, come on!!!;)

[K]

Celeste's comment made me a bit weepy as does Hotter's ability to be freaking BIONIC.

Heavens alive.

[Kali]

I feel significantly smarter than I did before I read this. Yay Hotter's bizarre brain!

Can I please say, though, that this makes me more concerned about the fact that I'm on anticonvulsants for mood control??

[winecat]

Thank you Dr. Mfamama. I feel as if I just did 3 rounds with a medical professional! My hubby years of major medical issues and came through the other side just fine, we call him the miracle man. Sounds like Hotter and Celeste's son are in the same category.

[Hotter]

@Becca Hahahaha!

@Kali If I remember correctly the anticonvulsants I'm on was originally used prinarily for mood stablizing

[Kali]

Hotter! I love it when you come and say hi. Though your comment on the anticonvulsants still fail at reassuring me. :P Maybe I should stop putting off the blood tests to check their levels after all.

[MFA Mama]

*puffs up and turn sideways for maximum scare-value* Y'THINK?

Sent from The Precious

[Kali]

I have a needle phobia!! And my increasingly poor memory and worsening word salad is just a poorly timed coincidence, duh. At least I'm not having vagina issues??

[krlr]

I love you because I am fairly certain you're the only person ever to compare a stroke to basting a turkey.
Also, this reminds me of that dance ICU & neo-natal docs do, trying to keep all systems in balance & dancing on the head of a pin. I forget sometimes what an art medicine can be. So much study & toil & science - and then, hopefully, if we're lucky, just a little bit of magic.

[MFA Mama]

<3

Sent from The Precious