Thursday, August 16, 2012

Living organ donor narratives

Cristy Wright donated a kidney to her sister three years ago, and it went badly. Her sister was back in surgery within 24 hours of the operation, and within a week, the kidney--which she had affectionately nicknamed Trixie--had to be removed and thrown away. She sought support, but when she talked to her surgeon, he never acknowledged her loss or referred her for counseling. Her Living Donor Coordinator never returned her call.

Cristy feels betrayed by a medical system that should have been there to protect her. She never received adequate information about the risks of transplant surgery, even though she at one of the best hospitals in the country. She suffers from post-traumatic stress disorder. In an attempt to better inform other donors, she started the website (which offers useful, though IMO gratuitously negative, information about the risks of donation).

I came across Cristy's story in a recent symposium on first person narratives of living organ donation (though we've encountered each other before*) in the journal Narrative Inquiry in Bioethics (i.e. the editors compiled a number of first person narratives from living organ donors and published them all together in this issue of the journal). As I began reading about the donor's experiences, I was blown away by how negative they were. A brief litany of horrific experiences (far from exhaustive):
  • A 59-year old man donated a kidney to his 68-year-old husband, and then had to take care of him while they both were recovering from surgery. That is no mean feat, especially at their ages. At one point, they had to spend thousands of dollars out of pocket to purchase the drugs they both needed because there was some problem with their insurance.
  • A woman donated to her brother, but like Cristy's the transplant was unsuccessful and had to be removed within a week or surgery. She had been under the mistaken idea that her kidney would be able to be used for research, and was devastated to learn that it had to be thrown out.
  • A woman donated to a former lover and boss. Six months after surgery, when she went back to the transplant center to complain about her permanent nerve damage, she found out that 10% of their donors ended up with nerve damage like hers, and a few months later, they voluntarily shut down their transplant program because of "adverse events." She now suffers from chronic kidney disease and depression.
Who were these people, and how come I had never heard of them? I've talked to 9 other (living) kidney donors, and none of them had experiences anywhere near this bad. (And the living liver donation narratives were even worse, but I know far less about that...)