Why the Campaign for Living Kidney Donation is Bullshit … End
On the morning of February 15, 2010, 96 days after she called the transplant center, Dr. E.N Scott Samara picked up a scalpel and proceeded to remove Ronda Peterson’s left kidney.
She had met with four people, including her surgeon, for a total of about 90 minutes before the operation. She had no real grasp of what she was doing, except following an impulse to do a good thing, to be an instrument of God’s healing grace in this world.
She never doubted the motivation or sincerity of the medical personnel who were supposed to be looking out for her welfare. In a life that had had its ups and downs, this was one good and pure deed that she could own.
And it was all for nothing.
Ronda’s kidney was immediately rejected. They kept trying for months to save it, to make it work, but it really never had much of a chance, and they wound up taking Ronda’s kidney out of Evan and throwing it in the trash. This transaction was a crapshoot from the beginning. Ronda had a right to know that, but no one told her. Later, she found out that there were a lot of things she wasn’t told. She would not have gone forward if she had known even some of these things. Her doctors decided that she — who was risking her life and health — did not need to know about the 0–6 HLA match.
According to the rules — such as they are — Ronda Peterson had every right to know what the chances were that this transplant would succeed. “The transplantation team and the donor advocacy team need to indicate to the potential donor as clearly as possible the prospective recipient’s need, possible medical alternatives, and the chances for a successful outcome. The patient’s perceived need is important in the prospective donor’s risk-benefit calculus, but so is the patient’s probable outcome.”
“I don’t think there was any reason she needed to know that,” Samara said later. “I don’t think she had in mind that she was only going to give this kidney if she was a perfect 6 out of 6 match. There’s only so much that she’s going to be able to comprehend.” He was wrong, of course, about what Ronda had in mind — and how much she could comprehend.
She had been under the impression that she and Evan were a perfect match, something she repeated often to the transplant staff. And, in fact, her donated kidney eventually failed completely because Evan had developed something called BK virus, which, according to a report that Ronda later discovered, can develop as a result of HLA mismatching — especially in African Americans.
She began to comprehend just how much information had been withheld from her since the very beginning of this misadventure.
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“It was God who gave me a compassionate heart and love for others and my gift is that of a servant’s heart. I love to help others. I hate to see others hurting and I will do what I can to help another in need,” Ronda says. “I had complete trust in the surgeon and transplant team responsible for my care — I trusted them fully. I did not realize that there was so much that I did not know and was never educated or told about. I had no understanding of how my kidneys function, nephrons, GFR, and what our kidneys actually do for our body other than making pee. All I knew was that I only needed one kidney to live a normal life and that my recipient’s life would be saved if I did this.”
Scott Samara told her that her left adrenal gland had been bruised during the procedure, but that it would heal quickly and there would be no problems. Ronda found out during one of her post-donation trips to the emergency room that her left adrenal gland had been permanently damaged.
She now suffers from Addison’s disease as a direct result. She has to take steroids which, despite her best efforts, caused her to regain all the weight she had lost prior to donating. She has low levels of Vitamin D. She also suffers from metabolic imbalances which are difficult to treat and require constant monitoring and follow-up. Her thyroid condition has worsened and she has had to double that medication. She struggles with fatigue. She also struggles with depression and has been near suicide at times.
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Ronda is no longer friends with Evan. He is back on dialysis, and his odds for another transplant are very long indeed. Physically, emotionally and spiritually, Ronda has been nurturing a fragile recovery.
Dr. E.N. Scott Samara later spoke with admiration about Ronda’s decision to donate. “She came forth and put herself on the line for her fellow man. I would have a hard time doing that,” he said. Donating a kidney is something that he “probably wouldn’t even consider.”
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Afterword
“About 70 to 80 percent of kidney failure is preventable by eating well, staying fit with physical activity, avoiding salt, drinking water — simple things we know can improve our health in general.” — Multicultural Integrated Kidney Education Program President Cheryl Neal.
Dr. Mehmet OZ’s colleagues at Columbia University want his medical license revoked due to his “disdain for science.” He’d be leaving New York-Presbyterian Hospital’s Cardiovascular Institute Columbia with both kidneys and a fat pension.
Terry Watson, who was tricked into donating her kidney to a stranger, is doing well. Her sister, Kathy Wolstenholme, died in May of 2014.
As mentioned, two kideny donors died from procedure-related problems as this story was being researched and written. The most recent death occurred about two weeks ago when a young man who was donating to his father was killed during surgery. He left behind a wife, a daughter, and two sons. His last posting on Facebook, on April 15, was “Well, tomorrow’s the big day.”
One of his previous entries reads: “Note to self — never ever take life for granted”
The best source of information for those considering donating an organ is Living Donor 101, where “Absolutely No Hero Worship is Allowed.”
Originally published at scandalethics.com on January 29, 2018.
