Of Kin And Kidney Transplants: Living As My Sister’s Keeper
The surgery, this tragedy, didn’t just happen to her, it happened to me too. My beautiful belly button had transformed into Frankenstein’s monster.
My barrel-chested father cloaks importance with the phrase “Well, you know . . . ”
“Well, you know, we’re having the guest bedroom redone because the oak tree fell through the house.”
“Well, you know, your cousin was born with a vestigial tail.”
Like all well-conditioned animals, my siblings and I honor the subterfuge and react to his declarations with nonchalance.
“Well, you know,” he said on this particular occasion, placing a box of aluminum foil in a drawer, “Your sister’s kidney isn’t very good.”
I swayed in my fuchsia stiletto boots, my hand lightly resting on the sage green counter of my parents’ newly renovated kitchen. My sister’s renal function had been compromised but steady for at least a decade. No one, least of all her many physicians, knew what caused her disease.
“What do we know?” I asked.
“They’re sending her up to [unnamed world-renowned hospital]. They might put her on the transplant list.”
There are only a few situations where it’s acceptable to utter the F-Word in front of your parents. This was one of them.
Richard Herrick, delirious with pain, thrashed in his bed, biting a nurse and pulling out his catheter. His family, keeping vigil at his bedside, knew the restraints would prevent him from hurting himself or others, but would do nothing to prevent his death. As his doctors explained, only a new kidney could possibly do that.
One problem: a transplant had never been done successfully.
After returning home from my last two-kidneyed excursion, I brushed my teeth, and kicked my sandals into the corner of the bathroom. Then I slipped into the darkened bedroom and nudged my way across the floor, occupied by my two greyhounds, while pulling my cotton dress off over my head and flinging it in the general direction of the laundry basket.
Inelegantly, I crawled across the mattress and curled up behind my slumbering husband.
“Hey,” I whispered loudly near his ear.
“Hey,” I repeated, nudging his shoulder. “Psst. Hey.”
My pokes became a more insistent shake. One of the greyhounds snorted in annoyance.
“Babe. Hey. Wake up.”
Finally, he groaned and rolled onto his back, pulling me close to him, probably hoping I’d stop talking long enough to pass out. After a few seconds, I lifted my head and patted his chest with my open hand.
“Hey. Hey, I need to talk to you.”
He emitted a noise I interpreted as “Go on . . . ”
“You have to promise me something.”
I concentrated on each word, trying to sound serious despite my inebriation. He replied with something I heard as assent.
“You have to promise me that no matter how bad things get with my sister, you’ll tell me.”
He blinked at me, a lock of his dark blonde hair falling over his forehead when he shifted. “What?”
“I don’t want anyone acting like they need to protect me,” I said. “That’ll piss me off. Just tell me the truth, whatever happens.”
His hand covered mine as it rested on his bare chest.
“Alright,” he croaked, “I promise.”
A beat passed. I nodded, once. Then I curled up at his side, my left leg thrown over his and my head on his shoulder. And I fell asleep.
Richard Herrick scrawled a note to his identical twin the night before the transplant: “Get out of here and go home.”
In a return note, Ron told his dying brother, “I am here and I am going to stay.”
My parents, brother, brother-in-law, nieces, spouse, and best friend flooded the curtained cubicle. Their voices overlapped with exclamations and reassurances, both harmonious and incomprehensible to my anesthesia-affected brain. Their words disintegrated but their inflections warmed me.
“The surgeon said your kidney was perfect; pink and plump and raring to go,” someone said.
My father took me in his bearish embrace, his face wet with emotion. With clumsy paws he patted at me, as if checking a newborn for all relevant body parts.
“See Dad, we did it,” I said.
In 2004, living kidney donor Ron Herrick reflected on his decision. “We felt very strongly that it would work. Of course, it hadn’t been done before. But they knew their research.”
I moved tentatively, breathless from traversing the short distance from the bathroom to the living room. Cupping my bloated and bruised belly, I lowered myself to the sofa. I was barely settled before my phone rang. Dad’s words garbled and were barely comprehensible. My body jolted.
The kidney didn’t perfuse. Blood flowed in through the renal artery and out through the renal vein, but the tiny capillaries didn’t take nourishment back to the nephrons’ glomerulus. Seven days in, the transplant had failed.
“I’m sorry Chris.”
I gulped air, my vision blurring, a blackness spreading through my middle as if part of me was dying. Which it was.
“This isn’t your fault. You did everything you could, what no one else would do.”
“No one else could.” I minimized my actions, thinking of my parents’ age, and my siblings’ health, as if no one else in Mary’s extended family or friends had the capability.
“That’s not true,” he said.
My tears wouldn’t stop, I couldn’t breathe. Neither could he.
“I’ll finish up at the office, go home, and pick up Vi,” he said, referencing my stepmother. “If you and Paul want to drive to the hospital with us, we’ll pick you up.”
“I don’t think I have anything to wear,” I said.
“We don’t care what you wear.”
“No. Seriously, I can’t button my pants.”
“Just think about it, and call me back.”
“Okay, I love you.”
“I love you too.”
Almost the moment I hung up, before I had time to form a single complete thought, my phone rang again.
“Don’t go,” my other sister said in lieu of a greeting. “They need to concentrate on Mary. If you’re there, they’ll be worried about you too.”
Mary needed them more than I did, I reasoned. I was shattered, unable to stop crying, but I didn’t think it was fair or right to take the attention of my parents away from her. It was as if my family was only capable of loving and watching over one person at a time. As if my grief, my experience, wasn’t important.
Because Richard Herrick’s doctors left his natural kidneys in place, the disease that caused his original renal failure spread to his transplanted kidney. He died eight years after the transplant.
With my forehead cradled in my hand and my tears leaving dark spots on the upholstery, I called the Transplant Coordinator, my first and only contact at the hospital.
The coordinator, who had white-blonde hair, translucent skin, and a soft demeanor, had guided me through the evaluation labyrinth. She scheduled my appointments, answered my questions, and reassured me of the hospital’s alleged one and only living donor complication (years later, I discovered this).
“They’re removing my kidney from my sister,” I told her, my voice obscured with snot and grief.
Shock, sympathy, disbelief, even anger — these were the possible replies I expected. Instead, her tone was devoid of emotion, and her mouth full of platitudes.
“I don’t know anything about this, so I’m going to call around,” she said. “I’ll let you know what I find out.”
Minty relief washed over me. She would help me make sense of all of this.
To this day, I’m still waiting for that phone call.
Prospective kidney donor Ron Herrick asked his medical team if the hospital would be responsible for his health care since they were exposing him to unknown risks. His surgeon, Dr. Harrison, replied, “Of course not,” immediately followed by, “Ronald, do you think anyone in this room would ever refuse you care if you needed help?”
Ron then realized that his future health care depended upon his doctors’ ethical, rather than legal, sense of responsibility.
I could find no hospital-sponsored support groups, no non-profit organizations, and only one email list-serv to support living kidney donors like myself. (How was that possible when 6,000 people donate kidneys every year? I thought).
I subscribed and lurked, reading living donors’ experiences with nerve damage, fatigue, chronic pain, or post-donation low kidney function, always accompanied by their transplant center’s abandonment. Then I watched these same stories get minimized or dismissed by other living donors. The wounded living donor simply chose the wrong transplant center or the wrong surgeon, they insisted indignantly. It must be your fault somehow. Otherwise, the same thing could happen to them.
As a last resort, I emailed the administrator of a local chapter for a national organization dedicated to local transplant recipients and their families. I explained my situation.
His response: “Maybe you should start your own group.”
In my mind, I saw the Craigslist ad:
Messed up living kidney donor looking for less dysfunctional living donors to help with feelings of utter failure and abject despair.
I might have laughed if I could’ve summoned the energy.
“The important question would seem to be whether we as physicians have the right to put the healthy twin under the pressure of being asked whether he is willing to make this sacrifice. I do not feel that we have this right in view of the potential danger to the healthy twin as well as the uncertainty of the outcome for this patient.”
- Henry M. Fox, Chief of Psychiatry, in the book Surgery of the Soul
I returned to the hospital for my one-month follow-up. My surgeon entered, approaching the examination table from the right. He grasped my limp hand in his, resting his other on my shoulder. With meaningful eye contact, he said, “I’m very sorry about what happened with your sister.”
It was the first time that someone, anyone from the hospital had acknowledged and/or expressed remorse for anything. The cinch around my ribs loosened.
But of course, it wasn’t as if he had apologized for what he’d done to me.
More than 35 years after the Herrick transplant, Brigham Hospital Chief Dr. Francis D. Moore wrote that as a result of the living kidney donation, the assumption that physicians would first “do no harm” would forever be challenged.
Dr. Joseph Murray won a Nobel Prize for his role in the Herrick transplant. In 2002, when he was told that living kidney donors exceeded deceased kidney donors in the U.S. for the first time, he immediately expressed concern about the risk to the living donor.
While the world lauded my bloody offering, the transplant system that benefited and profited from my sacrifice had no comprehensive living donor follow-up. I also had no idea about some of the facts I’d later come to discover — like the fact that four living kidney donors die every year in the U.S. within 12 months of donating, or that thousands of kidney donors experience complications, depression, anxiety, grief, or even PTSD.
It took nearly a year of weekly sessions with a PTSD-specialized psychologist to accept that, despite the transplant industry’s vocabulary of the “recipient-donor pair,” I was a separate individual who deserved the same protection and respect as my sister. The surgery, this tragedy, didn’t just happen to her, it happened to me too.
“Why can’t you just let it go?” my recipient-sister asked when I tried to explain.
I was dumbstruck, scenes from the past year of my life shredded in the tornado of those seven words. Because I had tried to heal her, my bodily integrity was gone. My sense of security in the world was eradicated. My future health was unknown. My beautiful belly button had transformed into Frankenstein’s monster.
Still, the maelstrom in my head made it impossible to gather the letters and punctuation necessary to express any of it.
“Because they lied to me,” was all I managed, and the rest of our conversation became indistinguishable white noise.
Living kidney donor Ron Herrick suffered a stroke in 2002, and underwent angioplasty to repair circulation in his heart. His kidney function decreased until he was forced to visit the hospital three times a week for dialysis. He died in December of 2010 shortly after heart surgery.
According to one prospective study, living kidney donors show evidence of 37 different cardiovascular changes only 12 months post-donation, including those associated with heart disease.
Compared to a well-matched control group, living kidney donors have an 8–11x increased risk of kidney failure.
At a recent symposium, Dr. Dorry Segev admitted, “We still have very little understanding of the medical risks” of living kidney donation.
Transplant centers are not required to disclose any of this during the informed consent process.
Fifty-six years after the first successful human organ transplant, Ron Herrick’s older brother, Van, attended his funeral.