Five Quarts_ A Personal and Natural History of Blood - Bill Hayes [87]
The transfusion isn’t cold, Cindy explained. It’s not the body slam of chemotherapy or the head rush of too much caffeine. Nor does it hurt, which made sense once she’d said it. This was replacement therapy, after all—simply adding something the blood is missing. But there are risks. “With any blood product you can always have a reaction,” Carrie had told me earlier as she checked Cindy’s blood pressure and temperature. While donated blood is now elaborately screened and tested for hepatitis and HIV, for instance, sometimes a bug or bacterium can slip through. Unlike other blood products, cryo cannot be heat-treated or “washed,” to borrow the nurse’s word. Though a safe, genetically engineered factor I concentrate is manufactured overseas, it has not been approved by the FDA and therefore cannot be legally obtained in this country.
“I would love to have the concentrate,” Cindy mused, easily envisioning how it would simplify her life. “I could do it at home. I could treat prophylactically much more efficiently. I could travel!” As she sees it, however, the reality is that the profit potential just isn’t great enough for an American pharmaceutical company to create a comparable product. There may be as few as seven “factor I’s” in the United States, according to one statistic. Hence cryo, the standard treatment, which, as Cindy wryly put it, is “cutting edge, 1972.”
I can’t imagine anyone more deserving of greater simplicity in her life than Cindy. But it may not be in the cards. On top of the fibrinogen deficiency, she has an unrelated clotting disorder. This means that, while she has to infuse once weekly to, in essence, thicken her blood, she must also take medicine twice daily to thin it. In addition, and unrelated to these blood disorders or to HIV or HCV, she has a rare neurological disease, transverse myelitis (TM), a condition similar to multiple sclerosis. I don’t think there’s a satisfying expletive that sums up having five life-threatening illnesses.
“My system doesn’t know if it’s coming or going some days,” Cindy added. In fact, her medical history is so complicated that she carries with her at all times a single document that spells out the entirety of her conditions. “Here, I’ll show you.” She pulled her wallet from her purse and removed a fold of paper. Regardless of the emergency, she noted, “The first thing a provider wants to know is, who’s going to pay for this? So that’s at the top.” Underneath this insurance info was a summary of her medical history, single-spaced. On the flip side: the names and numbers of her various doctors as well as a listing of her many meds. “The day you don’t feel good is not the day you want to be explaining all this.”
Cindy also carries a MedicAlert card—call the number and you’ll get her health history over the phone in a choice of languages. “And for airports, I’ve got this,” another ATM-like card. “It says that I’m bionic.”
“Bionic? You mean, from your brace?” A metal brace provided support for her lower right leg, weakened by the TM.
No, Cindy answered with a laugh. To control leg spasms, she had to have a catheter implanted in her spine to deliver antispasmodic medicine automatically. “Very cool! But now I beep in metal detectors.”
Next, Cindy handed me a letter from her doctor, its edges showing signs of frequent use. Unlike the densely typed medical history, this page consisted of a single brief paragraph. “To whom it may concern,” it read. “Miss Neveu is very knowledgeable about her symptoms and the care required to treat her disorder.” In case of an emergency, “PLEASE LISTEN TO THIS PATIENT.”
“That sure says a lot