Survivor On the Margins: Historic UCSF Transplant Patient and His Pioneering Surgeon
Survivor on the Margins
Richard’s transplant was performed by the renowned surgeon Samuel Lee Kountz, MD, a world leader in transplant surgery. After performing the first successful non-twin kidney transplant while training at Stanford University, Dr. Kountz came to UCSF in 1967 and ultimately built UCSF’s program into one of the largest and most respected kidney transplant programs worldwide. One quarter of all kidney transplants in the U.S. were performed at UCSF under his supervision, and before his death in 1981, he had personally led over 500 of these operations.
But what struck me most were his quotes that emphasized the ‘human aspects’ of transplant medicine and the personal transitions a transplant catalyzes. In anticipation of the 1972 International Congress of the Transplantation Society, for which he served as President, Dr. Kountz announced, “What we want to do is document the non-scientific aspects of transplants from the patient’s viewpoint. Kidney transplants have been so successful that now they can be documented and patients can tell what it has meant to them, their families, and their lives.”
I thought of Dr. Kountz’s words as I spoke with Richard, whose transplant is undoubtedly a medical success. Before his transplant, he explains, “I was crying, peeing the bed, guessing I’m dying. And I could hear them talking, the nephrologist telling my parents, ‘The urine's backed up into his kidneys, his kidneys are destroyed, he's gonna die. I'm surprised he's not dead yet.’ All of a sudden, my mother's having seven weeks of testing.” His mother, Richard soon learned, was being tested to determine whether she could serve as his kidney donor. She could.
Immediately after the transplant, Richard remembers a striking change. “The kidney started working right when they put it in. I woke up with all this energy that I'd never had before. Because all you do when you have renal failure is sleep. You're tired and run down. When I awoke after the transplant, I could hear people in the operating room saying, ‘What an amazing transplant’. I woke up and I felt so… not powerful exactly. But felt so alive. Now I'm suddenly a kid at 11, 12 years old. I'm riding my bicycle, I'm going out in the sun, I'm being with my buddies. I'm feeling really alive.”
That was one of many transitions Richard experienced when he returned home after the surgery. He explains, “When you leave the hospital world here—cartoons, food, doctors, nurses paying attention to you—you go back to 'the root of awakening,' I call it. Trying to be a ten year-old kid, but you feel like you're going on 30. You grow up really fast.”
His parents were only beginning to grapple with post-transplant life. “There's a lot of heartache with parents that have sick kids. I'm getting better. But my mom was the donor, so she was still in pain and recovering.” Already poor before Richard’s healthcare needs and struggling to pay for follow-up visits after the surgery, his parents began fighting over money. When his father started beating his mother, Richard found himself in the middle, trying to explain to doctors why his mother was black and blue, and ultimately taking beatings himself to protect her. “I held it, I took care of it, somehow some way.” By his mid-teens, Richard’s parents had divorced, and Richard began living at a children’s home in Gilroy.
To manage his pain, he explains, “I found this magical thing called drinking. I drank myself out of a will, lost everything, lost almost everybody that I really wanted to love. I don't know how I kept the organ. Some would say you really don't deserve to be here today. True.”
After working briefly for NASA as a machinist at Moffett Field in Mountain View, Richard suffered his first epileptic seizure and stopped working. He moved to Indiana for several years, but returned to San Francisco in 1994 when he learned that a brain surgery might cure him of epilepsy.
He began working at the Fillmore Auditorium and the Warfield Theater. Even with the job, though, it became increasingly challenging to afford housing in the City. “The longest I lived in one place was about six years before being priced out in 2005 when rents more than doubled,” says Richard. First moving from the Inner Sunset to the Henry Hotel at 6th and Mission, Richard later found other temporary housing in the Tenderloin and China Town. Now, he uses Social Security checks to stay at Motel 6, and sleeps there until his money for the month runs out. “I’m still on the streets,” he says. “And I am trying to understand what's happened, because it feels like another failure in my life. I've always been the one that's persistent and believes I'm gonna make it and I'm gonna get through it. But it’s been a long time, way too long. I know it’s not my fault but it’s becoming painful.”
“My personal prayer—in soul and body and heart—is that if you have the time, you gotta make sure that the people who work at the hospital know that you're really grateful to be alive."
Talking to Richard, our conversation cycles through the same themes. In one moment he expresses immense gratitude for the hospital, the doctors, and the staff at UCSF. “My personal prayer—in soul and body and heart—is that if you have the time, you gotta make sure that the people who work at the hospital know that you're really grateful to be alive. You realize wow, the guy that I saw walking around in the blue uniform makes the bed go up and down. Wow, that guy makes my room clean so I don't get an infection or lose my organ. Wow that's the anesthesiologist. That’s the nurse, who is running intensive care units where a patient's hooked up to so many machines. The people that are polishing the floors and getting the operating rooms ready for you or me when we're having major surgeries. People that don't get to be recognized but they make a really big impact. I'm really grateful for them.”
In the next moment, he talks of lost opportunities, of botched possibility. He repeatedly mentions how he doesn’t feel like the model transplant patient, and asks me rhetorically, “How is it that the junkyard dog’s still living?”
But I feel stuck on the counterpoints: Richard hasn’t used drugs or alcohol since quitting 34 years ago. He traveled to San Francisco alone when he needed surgery for his epilepsy, and recovered with little help from family or friends. I sense that he is still searching for a sense of purpose, and sometimes ponders the meaning behind the transplant. “I know I could make a difference. I know I can make a difference because I've been the poor, uneducated patient. I've been epileptic guy. I've been the drunk. I've been the drug addict. I've been the homeless guy.”
I see someone, too, who craves to be seen for his role as a patient in UCSF’s transplant history, yet equally longs to be seen and heard as someone beyond his health conditions. “I'm not just a patient,” he emphasizes. “I have feelings. I like to eat food, I love to walk, I like to take pictures. I love music, I love beautiful, classic cars. I love dressing up nice.”
Just as Richard circles around these themes, I circle around the question of how to measure the success of his historic transplant. Dr. Kountz understood the importance of tracking patients’ post-operative experiences to see the effects of organ transplantation beyond pure physiology. He may have been ahead of his time for placing such emphasis on the social, financial, and personal effects that transplant surgery could have on a patient. And I can’t help but hold two feelings at once: that UCSF has served Richard well, and that the institution, the City of San Francisco, and I as a future physician owe him more.
Background for This Story
This article is reprinted courtesy of the UCSF School of Medicine (SOM) and the author Kacey Berry, a 1st year medical student. Kacey became intrigued by the presence of Richard Schielke on the Parnassus campus and soon learned he was a kidney transplant patient, an historic one, having received his donor organ nearly 47 years ago in 1971. His doctor turned out to be a renowned African-American transplant surgeon, Samuel Lee Kountz, MD, a pioneer in the field.
Dr. Kountz' life as a surgeon was previously highlighted and chronicled by Kelsi Evans in a February 2017 post on the "Brought to Light blog". Kelsi, a project archivist at the UCSF Library, penned the story in honor of Black History Month. The blog is part of the Archives & Special Collections, an invaluable resource for aspiring medical student-cum-authors like Kacey Berry. The stories of Richard Schielke and his trailblazing surgeon, Dr. Kountz, leave an indelible imprint, enriching the history of both the Department of Surgery and the Division of Transplant Surgery. Kacey has given readers a window into the past, insight into Richard's endurance despite significant obstacles, and perspective into the work of Dr. Kountz, viewed against the backdrop of the era in which he practiced, making his achievements all the more remarkable.