- Living Donors are People Too
In December 2007, my understated father looked at me across a kitchen of holiday leftovers and said “Well you know, your sister’s kidney isn’t very good1.”
I blinked as if gale force winds had assaulted my eyeballs. To unschooled ears, a statement this innocuous would’ve provoked only mild concern, but I knew better.
“What do we know?” I asked, swaying in my fuchsia stiletto boots. Had twenty–plus years of her reduced but stable kidney function finally loosened?
“They’re going to put her on the transplant list.”
I thought of her children, and how their mother’s death would reverberate throughout their entire lives. A trauma that severe was impossible to get over; the best they could ever hope for was to learn to live with it. I was seventeen years old and a high school senior when my mother died, which was over half my life ago. I knew what I was talking about.
During my evaluation, the Living Donor Coordinator told me, “We’ve never lost a donor,” instead of the truth that 4.4 living kidney donors die each year in the U.S. within 12 months of surgery. She said, “We’ve only had one complication,,” which I discovered later was not the whole truth, and she never outlined the possibilities of nerve damage, chylous ascites, hernia, or adrenal dysfunction. Her only reference to my life post–donation was to avoid NSAIDs and contact sports—forgetting the neprotoxicity of contrast dyes and chemotherapy, or the long–term risks of diabetes, hypertension, or cardiac disease.
I had no conversation about risks with my surgeon, and never signed a consent form in his presence. The day prior to my donation, I signed a generic consent for treatment while meeting with a physician’s assistant. I signed another consent form while lying on the gurney outside the operating room (sans glasses), and presented to me by a resident I had never met or seen before that day. A request of my medical records two years later revealed only the banal form, and it wasn’t signed by any official at the hospital. Meanwhile, the aforementioned resident authored the surgical notes, remarking that my assigned surgeon ‘was present’ during the operation. Considering I was undergoing a one–port nephrectomy, on which the first study had just been published, using my body for a practice field, especially without my permission, seemed a smidge unethical.
Less than 24–hours after the transplant, my sister was rushed back into surgery in search of a nonexistent blood clot. Each following day was questionable, the prognosis changing sometimes from hour to hour. Finally, only one week after my belly button was bisected and patched back together, my donated kidney, Trixie, was removed, and not because of rejection. I immediately called the Living Donor Coordinator, crying, and begged for an explanation. She offered me meaningless textbook platitudes and promised to call me back when she had some information.
I’m still waiting.
I slogged into my one–month check–up visibly depressed and morose. My surgeon entered the room, took my hand and said, “I’m sorry for what happened to your sister.” Not a single word of apology for what he did to me, or how my life was [End Page E9] irreparably changed. It was as if I had no identity, wants or needs outside of my sister’s fate. He didn’t even offer a mental health referral.
My abandonment worsened when I realized there were no nonprofit or community–based organizations for living donors. Everything was recipient–oriented. A local (Transplant Recipients International Organization) TRIO chapter president suggested I start my own support group. I envisioned the advertisement: Messed up living donor looking for other similarly messed up living donors to gather for commiseration in our messed up–ness. It would’ve been hilarious if it wasn’t so sad.
I grieved for the loss of my Trixie. I thought of her, bruised and bloody on a gleaming instrument tray, the ends of her vessels punctured and frayed from their scalpels and needles. I imagined her being carried to a...