reading matter

the Man has been staying up late, falling asleep early - and sometimes both on the same night. So the boys, wrapped around a large, sleeping adult, are rolling over and going back to sleep. Well, more than usual, anyway.

It makes for a pleasantly relaxing evening, though somewhat solitary.

In this little burst of time, I've been doing some reading. I branched out a bit with my blogs, reading some medical ones:

http://www.rangelmd.com/
and
http://feetfirst.blogspot.com/2006/09/glamour-of-medicine-few-days-ago-i.html
(scroll down a bit to read the post)
and this sweet blog
http://www.head-nurse.blogspot.com/

and some (paper) reading matter:

Dangerous Doses, by Katherine Eban.
I kept hoping that the book would be fiction. Alas, not so very much. Egan writes about the grey market spawned by the loosely supervised middlemen in the marketplace that takes our drugs from factory to pharmacy. As Americans, we pay top dollar for what we assume are the world's safest drugs, but Egan proves that our drugs are only as good as the people who sell them. And sell them. And sell them.

My son's clotting factor, for example, is heat and cold sensitive. What if it passed through the hands of a middle man who was not interested in maintaining the proper temperature? Protecting the vial from damage (and thereby keeping it sterile)? What if the vial was 'uplabeled,' so that a vial containing 500 units of clotting factor was relabeled to indicate that it contains 2000 units?

Egan writes a narrative so smooth that it seems fictional. Or maybe it's my own desire to stick my head in the sand that makes it all seem Grisham-eqsue. Faintly possible, clearly - hopefully - improbable.

But you betcha I'll be calling Wyeth tomorrow to see if they sell directly to pharmacies...one of the medicines that Egan tracks through theft and resale is NovoSeven, an absurdly expensive clotting factor for people who cannot use other (and slightly less absurdly expensive) clotting proteins.

but more fascinating than all of this has been the ongoing discussion with the Eldest. About organ donation.

No, really.

It all started with that desiccated bodies exhibit currently at the Museum of Science. I explained that the man on the poster (which is all around the area of the MOS), had decided that, when he left his body, it could be used to help people learn about bodies. The Eldest asked what other things one could do with their body, once you'd died. When I struggled a bit, he prompted me:

your friend Malka was sick and she died, and her body went to the memory place, right?

Right. Malka had died of cancer when the Toddles was about seven weeks old, and I remember the shock of that vital, vibrant woman, disappeared into a box. Or out of it. God, I miss her. I explained that Malka's body was sick and tired, and she'd left it behind. And then I said it:

but some people choose to give a present with their body, once they don't need it.

I reminded the Eldest of the little girl whose roommate we'd been in the hospital once. She'd come from South America with her mother, broke, and gotten a liver transplant. The Eldest knows about organs, and how each helps the body, and is especially fond of livers - they make clotting proteins, which is a popular move around here. (The standard question on the hemophilia e-boards: what would you rather have, a liver transplant and a lifetime of immune suppressant meds, or hemophilia, and a lifetime of clotting meds? Many of the hemo guys in my generation have Hep C, and some have had a liver transplant when the virus trashed their livers. So it's a pretty vivid question in the bleeding disorder community.)

He was fascinated. I explained that the Man and I are organ donors, should something happen to us, but we didn't think anything would. After all, I promised, I would try to always look for cars before crossing the street...

As it happens, organ donation was banned in Orthodox Judaism for a long time. Eventually, there was a shift in technology that, among other things, made organ donation a matter of saving a human life - something for which any halachik (Judaic law) rule could be broken. Or argued around. Thanks to technological advances in tracking, transportation, the rabbis can now argue that at any moment, somewhere in the world or country, someone's life is at risk for lack of an organ which could be provided to them. Furthermore, we can now fulfil halachik requirements for the donor to be dead, as defined by Judaic law, which is alternately defined as cessation of brain activity or heartbeat.

Israelis have begun to embrace the idea of organ donation, while the Americans have lagged behind. Either way, here is a link to this carefully written perspective to an article, as well as this article in the NYTimes, showing the halachik minds at work (note: you'll have to rotate the NYT article to see it right-side up - there's a little button on the toolbar to let you do it).

Having just read doulicia's post on bereavement, my feeling is simpler: I won't need my body once I'm gone. But maybe I could help someone who isn't done with theirs.

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today's quote: To err is human. To blame someone else for your problem, is strategic.
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