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was also a buoy during some rocky emotional times. In the same spirit, she’s now mentoring a fourteen-year-old fellow factor I in Ohio, keeping in touch through e-mail and phone calls. Further, Cindy sees it as part of her role with the Web site to facilitate a mentor matchmaking of sorts. “Usually I’m able to link people pretty well. If you contact me and say, ‘I have factor VII deficiency, I want to talk to somebody,’ I’ll make a couple of calls and get you connected with another woman who has your disorder.” She’ll make sure, too, that you receive written information and, if need be, a referral to an accredited hemophilia treatment center.

“That’s the biggest problem with the rare disorders,” she continued. They’re often not seen as falling under the umbrella of hemophilia, so these patients don’t get referred to the best treatment. Sad but true, “There are all these independent docs out there winging it on old, old information.” Cindy told me about a fifty-year-old factor I with whom she’d spoken not long ago. “She was only being treated with plasma, not cryo—very inefficient, because you’re getting a lot less of the clotting factor and a lot more volume.” Though Cindy has grumbled about how dated her cryo infusions are, this woman’s care was cutting edge, 1940.

“That’s like going to your AIDS doctor and only getting a prescription for AZT instead of a multidrug cocktail,” I observed.

“Yeah, it’s pretty scary.”

The amount of misinformation is sometimes daunting, Cindy acknowledged. Not long ago, for instance, she had to swoop in and set straight a nice woman from Maine who, for reasons unknown, believed that bleeds “were only serious if they occurred below the knees!” Cindy actually went and met this woman and her husband in person. She arrived at the restaurant they’d chosen to witness the husband rearranging all the furniture in the waiting area, so that his wife’s knees would not be imperiled.

At this point, although Cindy’s stories hadn’t run out, her cryo had. Carrie returned and removed the empty pouch as Cindy, like the patient schoolteacher she used to be, provided a careful narration of what followed: “Now she’s going to flush the line with saline to clear it, then put in a little heparin—that’s an anticoagulant—to keep the port from getting clotted.” Carrie then unplugged the plastic tubing, bandaged the tiny hole, and Cindy was free. “If everything goes right, if I don’t fall or something,” she said matter-of-factly, “I won’t need to come back here till next Monday.” And with that, we said quick goodbyes. It was 11:30 A.M. and Cindy Neveu had much more to fit into her superhuman day.

ELEVEN

Blood Drive

IN A BODY AT REST, A SINGLE BLOOD CELL COMPLETES A full circuit of the circulatory system in just about thirty seconds. Blood bursts from the heart at its top speed, around one mile per hour, and shoots through the tough plumbing of the arteries outward to the body’s extremes. On its return, venous blood—now depleted and slogging waste—often must work against gravity and, at best, will only reach half its starting speed. In other words, the second half of the trip is more arduous than the first, which I suppose could be said of life as well.

At an approximate rate of one million per year, my blood’s clocked just over forty-three million circuits and, barring catastrophe, I anticipate another forty million or so. Long-livedness runs in my family, though I can expect the expected “infirmities of old age,” as my eighty-seven-year-old great-grandma Bridget’s obituary described her last years. Already though, as all people do, I’ve outlived my blood many times over. I contain, for instance, no red cell older than four months, no platelet over ten days. Some of my white cells survive less than six hours. Other blood cells are longer-lived, it is true. The lymphocytes called memory cells, for example, are ferried about the circulatory system for decades. But these, too, eventually fail. Such deaths go unnoticed by me but not by my body. Individual blood cells are constantly being replenished or replaced