Defending my life

I nearly died.

Several times.

That I am alive to write such words—any words—explains my nearly unfathomable loyalty to the women and men of the University of Washington Medical Center's organ transplant program. They saved my life, and have since kept me alive and in (mostly) relatively good health. Their handiwork is close to my heart.

About 10 inches south.

My story is important to me, but it's nearly routine for practitioners of advanced high-tech medicine who perform these procedures that extend lives and often offer a good quality of life to those saved. But: They're frighteningly expensive; they are as seemingly random (in a perverse way) as the death penalty in selecting who gets the chance to live; and they operate independently of the resource needs of simpler, preventive public health programs that, if applied around the world, could save millions of lives each year.

My involvement began just over 10 years ago, when a nephrologist (kidney specialist) with the bedside manner of a gargoyle sat at her desk, eyes fixed absently on some point high on the opposite wall, and casually told me that I was likely to be dead in a year or two or three. This same reputable but inaccessible doctor proceeded to ignore me over the next two years, damn near ensuring the accuracy of her prediction. All the while, my condition steadily worsened, and my insurance company balked over the necessity and expense of a simultaneous transplant of two organs: a kidney and a pancreas. Due to a congressional oddity, Medicare covers kidney transplants, but at the time it wouldn't cover the pancreas—and neither would my insurers, because they considered the procedure "experimental." I needed both organs to live.

In September 1993, I lapsed briefly into a coma and then began dialysis treatments for my failed kidneys. For five hours a day, three days a week, a needle the size of a pencil transported my blood through an artificial kidney machine, filtering out the impurities.

Some people's bodies cope well with dialysis; as with most Type I diabetics, mine did not. I wound up with seven or eight surgeries to repair and/or unclot the artificial blood vessel in my right arm used for the dialysis procedure. After a month, increasingly erratic blood sugars put me in the hospital again. I could no longer work at my part-time job as a community activist. On November 12, I started convulsing while dancing at a party and was out of it again for a couple of days. Two weeks later, my then-wife Kiyoko found me passed out in the shower, and she and a group of friends I will never forget (Vivien, Gavin, Carolyn, Ellen, Scott, Lisa, and Lance, among others) stood watch as I lay in a coma for several days.

Once I emerged from the medication-induced hallucinogenic hell that followed, we changed doctors, and UWMC got serious about taking the only course of action likely to work. With better medical care, my condition was poor but more stable. The insurance company finally, reluctantly, agreed to save my life. In June, I got a pager, for use when compatible organs were found. Every few weeks, someone would call a wrong number, and I'd damn near have a heart attack. Then, on the evening of December 16, 1994, the pager went off for real. In only six months, they'd found a "match," from an 18-year-old man (bless him) killed in an auto accident in Portland. It was four months before my insurance would expire due to Kiyoko's having been laid off. I had just turned 35.

The 10-hour surgery the next morning proved successful. It also represented a lifelong commitment on my behalf by UWMC's doctors. Like the staff at most transplant programs, they don't like to see their patients die after so much time and effort, and so, even though I can't really afford it, they continue to be aggressive in my care. In six years, I've had a stroke, a possible rejection episode, two bouts with double pneumonia, a nasty (and potentially life-threatening) cryptococcal fungal infection, and taken over $100,000 in immunosuppressant drugs. That's pretty good; I know K-P patients who've had a much rougher go. Not everyone lives. For the decade, I've resulted in around a million dollars in health care expenses billed to insurance. I am the insurance industry's worst nightmare. I lived.

By acting to save myself, I took advantage of a global health care system that, in the name of profitability, intentionally fails far more people than it saves. How many more people would now be alive if the million dollars spent on one person—me—had instead been spent on medical vouchers in Lake City? Or vaccines in Chad, or water filters in Tanzania, or a health clinic on a Lakota reservation? Dozens? Hundreds? Thousands? Each year, that question becomes more urgent, as thousands of beneficiaries of new treatments—transplants, protease inhibitors, fancy new tests—not only live when we wouldn't have 20 or even five years ago, but proceed to require expensive health care treatments for as long as we remain alive.