There are many many heroes in the transplant community. Right under donor families are the people impacted by organ donation who have dual roles: those who have received life and those who make it their life’s work to give back to the community through service. Ken Sutha, MD, PhD, has lived this life. He conveys a matter-of-factness and humility, yet he stands out as one of the most high-achieving people in the transplant community.
Ken works at Lucile Packard Hospital at Stanford in Palo Alto, California, where he is an Attending Physician in Pediatric Nephrology. He provides a broad spectrum of kidney care for children with a variety of
kidney diseases. He treats kids on dialysis and those before and after their kidney transplants. Ken’s warmth and gentleness charms even the most timid pediatric
patients. Ken also does research in dialysis devices that aim to monitor infection and teaches medical students and undergraduates. He treats patients ranging from newborns to those well into their twenties. He keenly understands the challenges of trying to grow up living
a normal life with kidney disease, because he was once one of those patients.
Raised in Jacksonville, Florida, to immigrant parents from Thailand, Ken was diagnosed with FSGS, or focal segmental glomerulosclerosis, when he was ten years old. FSGS slowly destroys the glomeruli, the part of the kidney that filters waste from the blood. He remembers a normal childhood marked only by taking medications and going to clinic visits. He felt fine as a teen and, like many patients with kidney disease, didn’t recognize the impact that this disease would have over time. So it was his mother, who was a physician, and
not his illness, that sparked his interest in medicine
Ken’s kidney disease did not impact his ambition, but it did direct it. It was during his college years when he learned that dialysis and transplantation were inevitable for his future. He studied biomedical engineering at Yale. He was curious about science and how research could impact health, so Ken decided to pursue an MD PhD program at Emory Medical School/Georgia Tech.
While in medical school, Ken developed end stage kidney disease and his life was altered when he started dialysis. He had to navigate the demands of his studies and rotations while also taking care of himself. In 2005, prior to needing dialysis, he was evaluated for a transplant. What helped Ken cope with this major surgery was meeting other young people online who had undergone a transplant. He admits, “Having kidney disease as a young person is a different experience than having it as an older person.” He was trying to build his life while his disease was setting limits on his life. Again, role models helped him persevere. He also volunteered at a summer camp for kids with kidney disease and kidney transplants, sponsored by the National Kidney Foundation, and educated people about
organ donation through Lifelink, Georgia’s Organ Procurement Organization. He met many kidney recipients who served as counselors and gave him hope for what life could look like after transplant. The camp was a formative experience for him to later become a pediatric nephrologist. And it was at the 2006 kidney camp that he first learned about the U.S. Transplant Games.
In April 2006, after 6 months officially listed for transplant, Ken received a living donor transplant from his 60-year-old father. As his only son, Ken’s dad was willing to do what it took to save his 24-year-old son’s life. Ken conveniently received his transplant during his
second year of medical school when all students were given some time off to study for board exams. He studied and passed his boards on time with a new kidney working beautifully inside of him. Thankfully, Ken’s dad recovered fully and has led a normal life with one
kidney.
Ken always admired the pool at Georgia Tech, site of the 1996 Atlanta Summer Olympics. After his recovery, Ken started to take up swimming as a way to stay in shape after his transplant. He knew his medication put him at a higher risk for cardiovascular disease and diabetes, so exercise would be a way for him to honor his dad’s gift of life. Growing up in Florida meant he spent a lot of time in the water but never considered himself an athlete. Ken joined a masters swimming club and learned to perfect his strokes. In 2008 and 2010, Ken competed as part of Team Georgia at the Transplant Games. He found the swim races fun and celebrated his health and fitness. He came home with a bundle of
medals.
By 2013, Ken was finishing his PhD and graduating from medical school. He studied stem cells for bone regeneration. His life was full of demands, responsibilities and opportunities. Yet as a transplant patient, Ken also had to manage the roller coaster of immunosuppression drug levels while battling Epstein Barr Virus and Cytomegalovirus. He shared, “I tried to be the best steward of my transplant and take care of my kidney.” This challenge of tinkering with drug levels to allow his body to fight off the infections opened up
the chance of rejection. Over time, he also admits to experiencing some complacency and was not as regimented with his medication. From this combination of factors, slowly his creatinine climbed, and his kidney was again failing. Though he felt guilty for disappointing his father and not honoring his gift as much as he could have, he also knew that some of this was out of his control. Ken shared, “Transplanted organs don’t last forever, and rejection is part of the process. These were the cards I was dealt. I’m grateful for the best ten
years of my life that I had with my dad’s kidney.”
By 2015, Ken got listed for another kidney transplant and started dialysis in 2016. After three years of residency in Seattle, he pursued a nephrology fellowship at Lucile Packard Children’s Hospital in California. As a busy doctor, he chose peritoneal dialysis which he
could manage at home while maintaining his normal work schedule. Ken had to face a long waiting list and was dual listed in Washington and California. He conjured up his courage to advertise on Facebook and get the word out that he was looking for a kidney donor while also raising awareness about kidney disease and organ donation in general. He was shocked that people he never expected, including strangers, came forward to offer him a kidney. But no living donor match was found.
Ken tried to live the best life he could while waiting. In Seattle, he endured two “dry runs” - getting the call but leaving the hospital
without a transplant. He continued to swim. He joined Team NorCal and looked forward to the Utah Transplant Games. Thankfully, a deceased donor kidney came up for Ken after two years on the waiting list in Seattle. He flew to Seattle and his parents flew out to be his caregivers. He lived in the Transplant House and had three months to spend quality time with his parents. Though Ken missed the 2018 Games, his teammates cheered him on in his recovery.
Ken felt normal about six weeks post-transplant. After three months, he wrote a letter to his donor family but has not heard back. He knows nothing about the donor but is grateful every day that his kidney is working so well. As an attending physician, Ken continues to be a steward of his second gifted kidney by balancing his health needs and work demands. He is working remotely during COVID as much as possible. Ken joked that his life as a transplant patient has prepared him to practice good hygiene during this pandemic. He gladly received
a COVID vaccine and states, “I accept the level of risk working in the hospital when I have to care for patients, because I’m doing something good for others.” He also focuses on research, which gives him flexibility and a better schedule. He is currently trying to grow kidney
tissue in a dish, with a long-term goal of growing other organs.
Thankfully, Ken’s colleagues and directors are extremely supportive of him as a successful physician. Over his development as a doctor, Ken grappled with how much to disclose about his illness when he applied to medical school or when he worked as a training physician. He
chose when to tell or not tell his colleagues about his dialysis and when he got a transplant. Ken thoughtfully shared, “With a chronic illness, it’s easy to fall back on the success narrative of ‘overcoming’ a disease. I know that transplant is not a cure, but a continuing
process of living with a chronic illness.” As a young doctor, he also wanted to hit the marks he aimed for, to prove himself and not be defined by his disease or transplant. “It required self-awareness for me to be realistic and to see the limitations I had,” he added.
Ken reflected, “It’s an incredible privilege to be on both sides of the kidney transplant experience. My own experience helps me empathize with patients and recognize what they are going through. They are not alone in this, nor am I.”
He also encourages any transplant recipient who is interested in a career in medicine to follow their passion. “It is doable. Go for it!,” he said with a chuckle. And Ken continues to value the importance of having peer support in his transplant journey. He is part of a WhatsApp group of physicians who are also transplant recipients.
Ken’s gratitude for his support system is another reason why Ken advocates for peer support among anyone who is on dialysis or waiting for a transplant. He encourages people to lean on their friends and family and to find a support system in the transplant community. “There are so many people eager, open and willing to help you get through this experience.” Indeed, there is much generosity in the transplant community.
Helpful people like to help people. Dr. Sutha is truly a role model for so many. His life highlights that organ donors don’t just save the life of the recipient. His two donors have allowed him to care for and save so many others.