A Father’s Journey, A Daughter’s Path

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“This experience has inspired me to continue my path in medicine, striving to improve the lives of patients like my father, whose battle with kidney disease has taught me more about life, health, and the gift of organ donation than I could have imagined.”

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A Childhood Witness to Kidney Disease

In 2003, my 41-year-old father lay on the operating table, terrified as he prepared for his first deceased donor kidney transplant. Just hours earlier, while sitting down for dinner, the surgeon had called to say a kidney was available—and it was a match. The lights in the operating room were blinding as the anesthesiologist placed the cold mask over his face. My father took a deep breath, feeling his eyes grow heavy. The surgery lasted well into the early morning, marking the culmination of a long journey with kidney failure.

Four years earlier, during a vacation in the U.S., my father had noticed blood in his urine. What seemed like a small issue quickly escalated into a nightmare. He was diagnosed with acute kidney failure, likely caused by IgM nephropathy, a rare autoimmune disorder. At the same time, my mother was battling stage 2 breast cancer, and their plans to move back home to Taiwan for work were abruptly canceled. In the years that followed, my father was in and out of the hospital, eventually beginning peritoneal dialysis. As a child, I remember helping him prepare the dialysate bags at home as he hooked himself up to various machines. There were moments of crisis, such as when he developed peritonitis during a family vacation, only rushing to the hospital when the pain became unbearable. 

Despite all of this, my parents shielded my brother and me from the extent of their respective illnesses. In Chinese culture, there’s a strong tradition of protecting loved ones from the harsh realities of illness, both to preserve dignity and to avoid unnecessary worry. Because of this, my father never asked any of his seven siblings to be tested as potential kidney donors, and none of them volunteered. After years of waiting, he finally received a deceased donor kidney, but complications soon followed. He developed ureteral stenosis, which required additional surgeries for stent placement, and an experimental immunosuppressive drug caused toxicity to the new kidney. Nine years later, the transplant failed due to chronic rejection, and my father found himself back on dialysis.

This time, dialysis was more challenging. Peritoneal dialysis was no longer an option due to his history of infections, forcing him to begin hemodialysis via a surgically created AV fistula in the arm—a more restrictive process that required visits to a dialysis center three times a week. By this point, I was in college, and I began to fully grasp the emotional and physical toll his illness had taken on him and limited his ability to work. I watched him navigate those days with patience, but I also saw the exhaustion, the frustration, and the unspoken grief of his former self. I vividly remember driving him to and from dialysis, watching him sit tethered to a machine that filtered his blood and kept him alive.In 2015, after another long wait, my father received his second deceased donor kidney transplant. Fortunately, this second transplant has functioned well for nearly a decade. But the reality is that kidney transplants usually last 10–15 years, and my father will likely need another transplant or return to dialysis someday. As I reflect on my father’s journey with kidney disease, I’m often faced with the profound question: as his daughter, would I give my own kidney? The answer feels deeply personal and complex.

From Family Life to the Operating Table

As a fourth-year medical student, I had the privilege of doing an away rotation in transplant surgery where I scrubbed in on several kidney and liver transplant surgeries. On my first day, I watched a young woman with kidney failure from type 1 diabetes receive a kidney from her childhood best friend. They rolled into the operating room together, wearing matching shirts with their faces on them. I marveled at the precision of the surgeons as they carefully dissected the donor’s kidney free from its surrounding fat, identified the ureter, and clamped and cut the renal artery. A second surgeon prepared the kidney for transplant on the back table while the first surgeon closed the donor’s abdomen. Every second mattered and every move was carefully coordinated. In the next room, the recipient’s team prepared to open the patient. I watched in awe as the surgeons performed the anastomosis, connecting the donor kidney’s renal vessels to the recipient’s iliac vessels with nearly invisible sutures. When it was time to close, I was given the honor of closing skin. As I placed the last suture, I realized that I had just participated in a transformative, life-changing procedure.

Over the next few weeks, I observed several living kidney transplants—between siblings, spouses, and even strangers. One morning, I watched as a kidney donor tearfully shook the surgeon’s hand, calling him a hero after receiving news that his brother’s surgery had gone well. The surgeon, with grace and humility, returned the compliment, telling the donor that he, too, was a hero. Despite the life-changing nature of the surgery for the recipient, donors often are discharged the day after surgery and have a relatively quick recovery. 

As I participated on the transplant team’s daily rounds, I gained a deeper understanding of the multifaceted nature of kidney and liver transplantation, and the medical, social, and emotional complexities that are so intertwined in chronic health conditions. I sat in consultations with patients newly diagnosed with kidney failure, helping them understand their options and prognosis. I also observed the challenges of post-transplant care—dealing with complications like infection, bleeding, medication intolerance, and organ rejection, as well as the harsh realities of being on the transplant waiting list. As of 2024, more than 90,000 people in the U.S. are on the kidney transplant waiting list, but only about 27,759 receive a transplant each year, with just 7,000 coming from living donors. The number of people waiting for a kidney is growing, and kidney failure now increases at a rate of 5-7 percent annually. Although dialysis extends life expectancy, it has its own risks, and a kidney transplant improves survival chances by 60 percent. In New England, the waitlist time for a kidney can be up to 6–8 years. Nearly 20 percent of deceased donor kidneys are discarded due to a variety of reasons, including organ incompatibility, damage during procurement, extended cold ischemia time, and logistical issues. 

A New Perspective on Health Care: Race and Economics

During my rotation, I also saw how kidney failure, like many health conditions, and its treatment disproportionately affect people of color. I remember sitting with a nephrologist and her African American patient as she explained that the patient’s eGFR, calculated using a race-inclusive formula, was higher than it would be with a race-neutral formula. This documentation of the difference was necessary for her to move up on the kidney transplant list. This racial bias in the eGFR equation often overestimated kidney function in African American patients, leading to delayed diagnosis of kidney failure and subsequently delayed treatment. It was only removed as recently as 2021, and yet it continues to have long standing impact on patients today.

Another aspect of health care I have grown to appreciate during my training is the complicated role that medical insurance coverage and federal health policy play in patient care. In the U.S., 90 percent of people with kidney failure rely on Medicare to help cover the high costs of dialysis, hospital stays, and post-transplant care. This support was a lifeline for my family as we navigated my father’s treatments. Despite this, the cost of care for kidney failure patients continues to grow. While kidney failure patients make up just 1 percent of the Medicare population, they account for 7 percent of the Medicare budget. 

This experience—both personal and academic—has shaped my understanding of kidney failure, transplantation, and the remarkable resilience of those affected by it. It has inspired me to continue my path in medicine, striving to improve the lives of patients like my father, whose battle with kidney disease has taught me more about life, health, and the gift of organ donation than I could have imagined. His journey has shown me that, despite the pain and sometimes all-consuming aspect of chronic illness, there is also an immense capacity for hope, resilience, and transformation—both for those undergoing treatment and for the loved ones supporting them.

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