Michael Thu Dec 29 00:51:08 2005
Re: Real life update, or, fun with kidneys
> i'm so sorry, michael.
Thanks to both of you faceless Internet people (actually, of course, you do have faces, because I drew them, so there.)
> if he's asymptomatic (aside from the high protein thing) - how worried are
> the doctors?
Depends on the doctor. As (we're discovering) is often the case. But we've seen doctors on this in Indiana, Hungary, and Puerto Rico. In Ponce last April, "a biopsy is mandatory!" accompanied by a worried look, but in San Juan last month, eh, not so much. The Hungarian said that after a biopsy there would be about a 2% chance that there would be a treatable diagnosis, and our man in San Juan concurs with that. The difference being that the Hungarian wanted a biopsy to satisfy his own curiosity (well, it *is* a research clinic), but the San Juan doctor doesn't.
Meanwhile, the nephrologists at Riley Children's Hospital in Indianapolis say that he would now qualify for referral, and (all else equal) a biopsy would be probable. This on relay from our old pediatrician in Bloomington, after several calls from Budapest.
> this is one of those things that make me wonder how well
> kidney function has been described
Actually, they know a lot about how they work. What they don't know much about is how they break.
> i don't know, for example, if my
> doctor has ever screened my urine for protein levels - because i have no
> symptoms.
If you've had urinalysis for anything recently, your protein will have been screened. It's on the standard dipstick (of which we have a bottle, just for our own relaxation; actually, last time we checked his urine with a stick, it registered normal protein, but the sticks aren't terribly accurate; they're really just for a stab-in-the-dark screen.)
Typical symptoms of renal failure are edema (water retention) in the face and legs and elsewhere (like around the heart, killing you), high blood pressure, and ahem that's just about it for external indications. Blood workups pin it down better.
> maybe the natural range is greater than they realize.
Well, kind of. There *are* people whose protein is normally high. This is "benign proteinuria", which is actually his only formal diagnosis so far. Trouble is, it doesn't normally occur in six-year-olds. So the current nephrologist figures it's probably something more serious. But, as he says, it's just plain too early to tell, and so in three months we'll look again. And again and again until it goes away or something worse happens.
That's the suckage of it, you see.
> i will be optimistic for you.
Oh, I'm all kinds of optimistic, long term. There are three promising lines of research I found on one Google-and-reading session. Stem cells seem to magically promote kidney regeneration, there is a bone regeneration protein which also stimulates the kidneys, and I forget the third one (it's been a few weeks). And then of course there's the whole long-term work on just plain growing new organs in situ with stem cells. That will happen, of course.
So there's very little chance this will actually kill him. The scary part is that if all research ceased, it *would* be what would probably kill him. Fortunately, it doesn't. Ever.
> i know they are working
> on some new treatments to try to prevent rejection of a new organ without
> the patient having to be on anti-rejection drugs for their whole life.
Oh, now that's already nice, actually. If you didn't reject the transplanted kidney, it'd already be a significant step in the right direction. Cool.
> they've actually done it on a couple of people.
*Very* good news. We have a friend currently on dialysis after rejecting one kidney (a physicist in Florida) and it would be nice if his next kidney would last him a little longer. Nine years isn't very long. He is getting quite the collection of kidneys, though.
> (although in this case, i'll hope they can come up
> with something less drastic than an organ transplant...like, an
> understanding of what, exactly, is going on.)
Unfortunately, that seems not to be moving very quickly (depending on what it is, of course). There are a couple of different things this *could* be, and none of them is all that well understood. And all the kidney conditions are descriptive, very few say anything about the actual causes, because they're so poorly understood. (With some exceptions -- there are cases where your own immunoglobulins clog your kidney, for instance, as is the case for our physicist friend. So they know what the problem is with the kidney in his case, they just can't fix it or know what made his immune system turn out exactly the wrong size immunoglobulins. Right now it just seems idiosyncratic, which the immune system is good at.)
> so don't
> worry about venting - it does help. and we'll hope our good wishes help a
> little too.
Good wishes and piles of hard currency. Nothing like financial crisis to spice up your worries about child mortality. But I digress.
Seriously, I had a couple of serious slumps in 2005, and the rest of the year was stellar. If I could just eliminate the slumps and tone down the stellarity, I might have just a stable income in 2006. It could happen.
And the whole translation thing is seeming to stabilize lately. More agency contacts, more return business, and I'm getting better at the actual translation as well. So that's good.
I do have some plans for Toonbot-oriented development at some point, and they're starting to make some sense. So all hope is not lost for the Jihad. You're a patient crew to start with (you have to be) so I won't exhort yet more patience, but thanks for being there for so many years. You guys are great.
| 
