We got the bad news by telephone at about 5:30 last Monday, barely 40 hours before I was supposed to check into the hospital to have a kidney transplant, donated by my sister, Michele. Michele picked up the call downstairs and shortly afterward I picked up the phone on the second floor.
I heard Michele say, “If you’re calling this late, it isn’t good news, is it?”
And Dr. Mulgaonkar said, “No, it’s not good news.”
A final round of blood-matching tests had shown my blood creating positive antibodies to Michele’s tissues. A transplant would have rejected, and rejected fast. Some rejection episodes can be turned around by medical intervention — indeed, a rejection crisis in the first 90 days after transplant is reasonably routine — but this transplant promised repeated such episodes.
I was folding and putting away clean laundry at the time. I hung up the phone. Before enlightenment, you chop wood and fetch water. After enlightenment, you chop wood and fetch water. I headed upstairs with a load of clean underwear and socks. As I turned away from the chest of drawers, my sister flung herself into my arms and clung to me hard, sobbing and sobbing.
Our first thought, as Michele finally dried her eyes, was that we had to call our mother, who was going to get on a plane in California that night. And then we had to tell my wife, Sally, to spare her having the news broken to her in front of two little boys, Bud, 7, and Joe, 2.
“I’m coming anyway,” Mom said, when we called her. And of course that was the right thing to do. We needed her for the help and the planned celebration; we could not now leave her out of the disappointment.
Sally, who worries (“Somebody has to do it”), initially found all her fears confirmed (“It ain’t over till the last urethra is connected”), but then pulled together, as we all did, and we soldiered on. When the transplant was still on, I had told Michele and Sally, “We’re so lucky, to be able to do this wonderful thing together. We’re going to look back on this and remember it as one of the best times of our lives.”
That’s still true.
Here are the technicalities. Kidney transplant has been overshadowed in the U.S. by the more dramatic and higher-profile heart, liver, and lung transplants. Oscar Robertson donated a kidney to his daughter. Mickey Mantle got a liver transplant while he was dying of cancer. Who do we remember?
Transplanting kidneys, while not quite as pro forma as dropping a new transmission into your car, is highly reliable nowadays. Back in 1981, when I first did it, the odds were about 50/50 that a cadaver transplant (harvesting a kidney from an accident victim) would last for a year, with slightly better odds for a kidney from a live related donor. Those odds are up in the 80 and 90 percent range today, with greatly improved immunosuppressant drugs and more genetic knowledge available for matching up tissues with tissues.
In addition, non-related live donor transplants — from friends, spouses, co-workers, even total strangers — are now common and quite successful. My blood type is O positive. If your blood type is O positive and you’re under 55, think about it.
Or think about it for anybody. At St. Barnabas Hospital, where my transplant was scheduled, another operation was slated involving a kidney donated by a state Supreme Court justice — to a total stranger.
Kidneys are in short supply, with thousands of people waiting for transplants. They are in short supply only because of this country’s policy about organ donation. We require a positive prior assent — that sticker you’re asked to put on your driver’s license that tells medical people, “Yes, you can take my organs for transplant if I die in an accident.” In other countries, positive assent is presumed, and you must exercise your right to say no. In Belgium, where that policy prevails, live transplants are virtually unknown, because there are plenty of cadaver kidneys to go around.
Those of us with failing kidneys, or who live on dialysis, don’t present quite the appeal of a child wracked by leukemia, who needs a bone marrow transplant in a last desperate measure to live. “I can’t believe it,” some people have said to me. “You look just fine.” But the stakes are exactly the same — life itself, ultimately.
And, as for the difference between life on dialysis and life with a transplant, imagine having to choose between a sophisticated motorized wheelchair or being able to walk and run.
Now we wait. And there are positive prospects. Ordinarily, I could expect to put in a year to 18 months waiting for a transplant in the crowded Northeast. Other regions — Wisconsin and Florida have been mentioned — move faster. And some transplant facilities will allow a mismatched donor, like my sister or my wife, to donate a kidney to their program — it’ll fit somebody, after all, probably right away. Then I would be bumped to the head of the waiting list for my blood group for the next cadaveric transplant. That might reduce the wait to a matter of weeks.
It’s been tougher on my wife, my sister, and my mother than it has on me. Like a parent watching his kid play tennis, the onlookers can’t really do anything, though they desperately want to — except keep their fears under control. I had my cry, sobbing and bellering “Why me?” against the injustice of the universe, a long, long time ago, when my original kidneys first failed.
All I was ever worried about this time was whether the ICU’s televisions got ESPN, so I could watch the British Open. What I do now is avoid, one moment at a time, picking up the first regretful or sorrowful or self-pitying thought. Like an alcoholic avoiding a drink, I know those thoughts can kill. So one “If only” at a time, I simply do not allow myself to start to think that way.
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