The universe is made of stories, not atoms.
— Muriel Rukeyser
On October 9, 1996, I gave my brother Robin a kidney. Twenty years of diabetes had worn out his renal system. Several months of research and soul-searching led to my decision. In the process, I learned about strengths in myself and my family, and about the great need in many homes for rescue from kidney failure. Time and again, people I spoke with recounted stories of loved ones who had suffered and sometimes died. I couldn’t let this happen to my brother. Robin had written me the year before from his home in Windham, New Hampshire. He had just completed a battery of tests to get on the New England Kidney Transplant list. He was already three months into peritoneal dialysis: 45-minute sessions four times a day to eliminate wastes from his body. Although he never asked for help, and didn’t like the thought of surgery himself, I offered to donate one of my kidneys. My mother, father, and younger brother were also finding out whether
they were suitable candidates.
During the next several months, I went through tissue typing, crossmatching and antibody screening, urine tests and x-rays to make sure this could work, that I wouldn’t give Robin some strange disease, and that I could undergo surgery with minimal risk to myself. By the end, I was the most poked and prodded healthy person I knew. I also met Tom, a donor, who lifted his shirt so I could see his scar. It wasn’t as bad as I thought it would be: thin as a strand of yarn, nine inches long, midway between ribcage and hip bone.
My mother, anxious to help, was deemed too slight in weight to risk undergoing surgery and had too small a kidney to make the effort worthwhile. My father, at 69, though willing to the very end and healthy in every way, was considered at the cut-off age for donations. My other brother, as sole supporter of a larger family than mine, seemed less optimal. We were all half-matches during tissue typing — 3 out of 6 — offering partial compatibility with my brother’s immune system. Antirejection drugs would make up the difference.
“You’re the best candidate,” I was told in May. Gulping, I said, “Okay.” Something I was theoretically willing to do was suddenly a reality. Explaining my decision to family and friends, I was touched by the expressions of love and concern. I heard things that sometimes aren’t spoken until someone’s funeral, and I wasn’t even dead yet! Some said I was a hero, reminding me of Emerson’s statement, “A hero is no braver than an ordinary man, but he is braver five minutes longer.”
The true hero was my brother, who had been braver twenty years longer. Because of low blood sugar problems, he had totalled a car twice and been taken out of work in an ambulance a couple of times. About his dialysis he said, “I always thought that I could use that time to get something done. But I felt so tired, so drained, that I could never do anything useful.” Having never been to war or played professional sports, I felt this was my one chance to be brave, to be part of a heroic moment, to participate in a miracle. As Aristotle said, “We become brave by doing brave things.”
During this period, Cathy Pratt, the transplant coordinator at Dartmouth-Hitchcock Medical Center in Lebanon, New Hampshire, was like a best friend. I could ask her any question and I was free, right up to the surgery, to change my mind. Along the way, I pondered many things:
Could a kidney from a cadaver work just as well? Would a donation from my dad work out, with a second kidney from me later if problems arose? How would my two small children react to the news? Would the recovery be difficult during such a busy time in my life?
Through it all, my wife Burchell was a wealth of understanding. Her brother had also been living with diabetes the past twenty years. In fact, on February 26, 1997, in a separate act of courage, she donated a kidney to her brother. With all the preparation and recovery of two surgeries in six months, we dubbed this,The Year of the Transplant.
Live kidney transplants average 13 years, while those from a cadaver average eight. Those five extra years seemed a precious gift to a father of four sons. Living related donation would mean closer tissue matching and a higher success rate. Because we’d be in adjoining surgical suites, the time the kidney was without a blood supply, the ischemic time, would be greatly reduced. Finally, by scheduling the surgery we could gather the needed support and go into it emotionally and psychologically prepared.
Outside of calls to Cathy, I explored the Internet. I read first-hand accounts of organ donation and listened in on the back and forth of an online newsgroup. I learned that the operation would be less risky than an appendectomy, a hernia repair, or a gall bladder removal. As for life with just one kidney, after a six-week recovery period, everything would be back to normal. The remaining kidney knows immediately that it’s going solo and takes on 70 percent of the work of cleansing the body. Gradually, it grows and does 80 percent. Since kidney function above 25 percent is considered normal, there’s a broad range. As Jeff Punch, a transplant surgeon and principle author of the TransWeb site, says, “It is as if we are born with a spare.'” Or, put more simply by my friend Jean’s fiver-year-old daughter, “He’s giving some of his healthiness to his brother.” It was true: I had health enough to share.
Horace Henriques, the transplant surgeon, is as skillful with his choice of words as he is with his hands. When I met him the day before surgery, he put me right at ease. He told me of his plan to make an incision along the line of my left ribcage, thereby avoiding my stomach muscles and making recovery faster. I asked him if he listened to music while operating. He said he didn’t, but if he did it would probably be something by Pink Floyd. Since 1992, when Dr. Henriques performed New Hampshire’s first kidney transplant, he had done around 120 such procedures prior to my visit.
Dr. Henriques had a fairly easy time with me, since I’m thin and long-waisted. But it’s harder to take a kidney out than to put it into its new location. My brother kept both his kidneys, functioning at 17 percent, in addition to the new organ that was placed in his pelvic area.
Around 10:30 that Wednesday morning, Dr. Henriques began suturing my kidney into my
brother, attaching the blood vessels to their new sites in the retroperitoneum. As the clamps were removed, the organ turned from a cool gray to warm pink, and urine immediately started coming out of the dangling ureter. After a year and a half of dialysis, with a backlog of waste products to filter from his body, Robin’s new kidney went right to work.
While still at the hospital, late at night after my parents and wife left, my brother would pop his head in and visit with me. In fact, during our brief stay we spent more time together than in the past 20 years. We spoke of how much we meant to each other. I felt as though I’d gotten my brother back from the rigors of diabetes, fatherhood, and years of full time work. Having entered the hospital too weak to walk his dog, falling listless as they drew his blood, he now looked as though he was ready to bound outdoors the day after surgery.
After leaving the hospital, I stretched out in a chaise lounge on the porch of a friend’s house in Quechee, watched the sun come up, and was overwhelmed by the feeling of being alive, of having done a wonderful thing, of how precious we all are. I closed my eyes and saw a white light with two kidney-shaped objects inside, revolving around. As they were gradually absorbed into the one light, I had the realization that we are all of one light, light sharing with light.
Five weeks later, already back to riding my bike to work, I started having lapses where I forgot I ever had major surgery. The scar is snake-like, a sigmoid or s-shaped incision seven inches long. Aside from recovering from the anesthesia, I regained my good health quickly. As for my brother, he recovered well and had almost more energy than he knew what to do with.
As each six month period passed without a rejection episode, confidence grew. Dr. Henriques told me, after six months without a rejection, Robin was looking at another twenty years with my kidney.
After the first year, he could now hope for another forty years of use. The oldest kidney transplant still in use dates back to 1963 and is going strong. But as I said to Robin, “I’ve got to stop calling it my kidney. It’s yours. I obviously don’t need it anymore. You can keep it.”
Going through this process was not without stress. It’s on a par with getting married or having a child. It spans the emotional gamut, taps all your energy and provides you with a story for the rest of your life. My spouse, as primary support, learned some important lessons. She was unprepared for how emotionally draining it would be. Not physically hard, it was nevertheless empathically exhausting. She had helped her best friend give birth the week before; helping me recuperate was more tiring. She and my sister-in-law drew strength from each other and grew close.
How did we broach the topic with our children? We never hid the fact that their uncles are diabetic. We visited the hospital and played at the playground to give them a positive image of where we’d be. Open communication, rather than a sudden announcement, led Cornelia, at age 7, to figure it out on her own. Sam, age 3, had a harder time. Beforehand, he watched a Curious George video about going to the hospital and we read him a book about the body. Afterward, he still acted out.
He had tantrums. The more I returned to normal routines, the better he got. Just to sit in my lap and to get “big, hard hugs” was reassuring that Daddy would indeed be okay.
Beyond family, our church community was a help, bringing hot dinners, raking leaves, walking with me, and keeping me company. Cards arrived, routine perhaps for the sender but very meaningful for the receiver. I felt cared for, helped along, nurtured.
The chances of being a donor are 17 out of a million. The experience of having a kidney lifted from my body and brought to life in my brother is the closest I will ever come to giving birth. I cherished the opportunity to make a tangible difference in someone’s life. As Robin said, “It’s hard to express in words how thankful I am. The difference is that now I have hope.”
