Call me sensitive about such things.
Back in the ’90s, when my wife and I belonged to a Boston tennis club, we got together with the rest of the membership for a round-robin mixed doubles tournament and brunch. Lovely occasion, lots of fun, and as we sat around the table after playing and eating, the discussion turned to issues of the day, one of which was health care.
A young man across from me said, “I’m a surgeon, and I certainly think it’s within bounds for me to refuse to provide my services to certain people. For example, smokers.”
I was smoking an after-meal pipe.
“I have a kidney transplant,” I said. “It’s lasted thirteen years. It’s given me a new life. I have a wife and a son. Would you deny me that chance if you were the transplant surgeon?”
The young man had the grace to withdraw his gambit, in an embarrassed way. It was clear to the whole table full of people — without rancor, too; things were nicer ten years ago — that confronting a real person was a whole different thing than talking about a medical abstraction.
YOU COULD MAKE THE ARGUMENT that I have been on life support for 30 years.
My native kidneys failed in 1975. I spent the next six years on hemodialysis, a process so ill understood by the general public even today that I should explain it.
Hemo (or “blood”) dialysis, “the kidney machine” as most people half-comprehend it, removes blood from the body through one tube, connected to an artery, runs it through a filter, then returns it to the body through another tube, connected to a vein. The machine itself holds the filter, the pump, and the filtration fluid and circulating system, and routes the blood through the mechanism.
A patient spends three sessions a week on hemodialysis, each session lasting (then) four or five hours (nowadays, three). In between, he watches his diet carefully, far more carefully than any would-be weight-loser does, for a variety of nutrient contents and for overall fluid intake.
Dialysis might have been denied me back then, it was still so new and scarce. “If your kidneys had failed two or three years earlier,” one of my doctor pals told me, “you would have been dead. We would have taken a look at you, single guy, drug abuser, rock and roll musician, and said, ‘No way. We need these machines for parents with kids.'”
There are more than 80,000 people on dialysis in the U.S. at any one time. On life support?
EVERY YEAR, ABOUT A FIFTH of the people on dialysis get a kidney transplant, as I did in 1981. When a transplant works, it works spectacularly and instantly, as mine did. For 22 years, except for the pills I took and the doctor visits I made, I did not know there was anything different about me.
Of course there was. Suppose my supply of immunosuppressants had been interrupted by a political upheaval. Suppose prednisone had been banned by the FDA. Suppose I had found myself lost on a camping trip. This is not quite so far-fetched a hazard as it sounds. Humorist Lewis Grizzard died because the transplanted pig valve in his heart got infected while he was in Russia, away from the care that he needed, and needed fast.
Nonetheless, you don’t risk much if you don’t presume to a globe-trotting lifestyle. Is this life support, however distantly? The transplant will fail some day, almost certainly. Without readily available, highly sophisticated medical intervention, a transplant recipient will die if something suddenly goes wrong. It definitely can.
THAT TWO-DECADE KIDNEY FAILED, and then another transplant failed in two years, and here I am again using hemodialysis. (I will transition in about a month to a form of home dialysis called peritoneal dialysis.) There are some pains and drawbacks associated with hemo, but you deal with more boredom than agony. But, take my word for it, dialysis makes you feel a whole lot better than you feel in late-stage renal failure.
As my second transplant failed this time, I came very near giving up. I did not realize — really did not know until now — how thoroughly sick I had gotten, over how long a period. My health had declined steadily for almost four years, nearly two at the end of the first transplant, and throughout the two years of the second transplant, which never really kicked in the way it should have.
So here I am in Terri Schiavo days, and you will forgive me if in this whole intense storm I feel a whole lot more like a target than an advocate. With every dialysis treatment, I feel better, and I am grateful to be restored to my family in better shape than I have been for a long time.
Am I on life support? I suppose I am. Long before the Schiavo case broke on the national scene, when I felt at my worst, as I thumbed through a file on my desk, I found the health-care proxy I had signed before my second transplant. A health-care proxy is of course not a living will. Nonetheless, moved by some impulse I did not then understand, I tore it up. I find myself quite reluctant to sign another.
Lawrence Henry writes every week from North Andover, Massachusetts.