Shared Family Experiences with Kidney Disease

No parent ever envisions a future where their child must face the same health battles that once defined their own lives. Yet, here we are, my son Quenton and I, bound by a shared struggle with CKD. Much like narratives such as From Son to Father, the Gift of Kidney and the Gift of Life at Mount Sinai,1 our story is a testament to the resilience that can emerge when families confront life's toughest challenges. Inspired by that account, we embrace the reality that kidney disease often spans generations, touching fathers and sons in uniquely transformative ways. Our experiences resonate with thousands of families who find strength in vulnerability and purpose in advocacy. By weaving our journey with these broader narratives, we hope to validate every reader who has faced similar trials and remind them that they are not alone. The Father: Patrick's Journey My path with kidney disease began long before Quenton's first diagnosis, woven through years of managing type 2 diabetes. In 2013, after routine care with my endocrinologist, I awoke to the news that I had advanced to stage 3b CKD, a progression that would eventually lead to ESKD, with only 30%–35% kidney function remaining. That December, I began peritoneal dialysis, a change that forced me to confront the precarious balance between hope and despair. On April 21, 2017, I underwent a kidney transplant. When the new organ failed to function immediately, I faced delayed graft function and required bedside hemodialysis every other day. I endured a blood clot in my neck, hemorrhaging that necessitated additional surgery, and finally a laparoscopic procedure to aid internal drainage. Hospitalized for 33 days with four major surgeries and rigorous rehabilitation, I held onto hope until my transplanted kidney sprang to life on day 47. These trials steeled my resolve. As I navigated recovery, I turned to mental health resources and clinical research to cope. Much like the advice in the National Kidney Foundation's Helping Children Adjust When a Parent Has Kidney Failure,2 we learned the value of open communication and mutual support within our family. Sharing my fears and progress with Quenton not only strengthened our bond but also helped us manage the emotional toll of chronic illness. Since the transplant, my activism has expanded to mental health, healing language, digital tools, artificial intelligence, and cardiovascular-kidney metabolic health. For instance, I used health literacy educational materials and an artificial intelligence-powered chatbot to deliver tailored educational modules to patients who are comfortable with artificial intelligence, thereby improving their understanding of treatment options and boosting engagement. Each of these areas played a role in my journey, whether through a supportive application, a meaningful conversation with a counselor, within kidney disease–related support groups, or breakthroughs in research. Eight years posttransplant, I look back on both trials and triumphs and find that resilience often grows from the soil of shared struggle. The Son: Quenton's Journey My kidney journey began in September 2020 with a hospitalization for fluid buildup and severe hypertension. Those complications escalated into congestive heart failure and a diagnosis of stage 3 CKD. Reflecting now, I realize that I had missed the warning signs, unaware of the subtle ways my body was pleading for attention. The first weeks were grueling: 2 months confined to bed with an indwelling urinary catheter and potent diuretics just to shed excess fluid. Breathing became easier over time, and after a week of rehab, I relearned how to walk and care for myself. However, before I could fully reclaim my strength, coronavirus disease 2019 ravaged my weakened system, triggering pneumonia, critical cardiac issues, and a final diagnosis of ESKD. Placed immediately on in-center hemodialysis three times a week, I also faced a staggering weight loss of 320 pounds. A genetic test revealed that I carry the G2 apolipoprotein L1 (APOL1) risk allele associated with FSGS. APOL1 variants are more common among people of African descent and have been linked to an increased risk of certain kidney conditions. Unsure how to proceed, I called my dad, a member of the Community Advisory Council on the APOL1 Long-Term Kidney Transplantation Outcomes study. Together, we delved into research and found that individuals living with APOL1 variants often feel isolated, as if they are stranded alone on an island. That realization ignited my passion for advocacy. I resolved to lend my voice to innovative clinical research aimed at targeted therapies for rare forms of kidney disease. In alignment with Florida Kidney's Adjusting Your Family When You Have CKD,3 I have seen how shared hardship can foster stronger bonds and collective healing. By openly discussing genetic risk and treatment options, I hope to break down isolation and bring others into a community of support. On May 19, 2025, I underwent bariatric surgery to improve my chances of making the active transplant wait list. My recovery included multiple emergency room visits and hospital admissions for postoperative complications, but I remain optimistic and mission focused on receiving a new kidney soon. Beyond the physical toll, my experiences have fueled my commitment to mental health advocacy, kidney disease awareness, and policy reform to expand transplant access. Through sharing my story, I aim to support others navigating similar challenges and drive meaningful change in health care. Lessons Learned and a Call to Action Our stories are not just accounts of struggle but beacons of hope for anyone confronting kidney disease. As a father, witnessing Quenton endure hardships I once faced deepens my commitment to personal healing and broader advocacy. We often encounter disjointed care coordination between nephrologists and mental health providers, long wait times for transplant evaluations, and limited access to patient navigators—gaps that clinicians and researchers must address. Our journey also underscores the importance of equitable access to genetic testing and transplant pathways, particularly for underserved populations. As Black patients, we are acutely aware of racial disparities in nephrology, including higher CKD prevalence, late diagnosis, lack of access to health literacy, and lower transplant rates among Black communities. Addressing these systemic barriers is essential to fulfilling our call to action. Our shared journey underscores that kidney disease is not a solitary battle but a familial one. By embracing challenging experiences and applying strategies such as open communication, mutual support, and innovative digital tools, we can inspire meaningful change in health care and build stronger, more supportive family networks. We share our story with one message: you are not alone. With courage, informed advocacy, and community support, it is possible to redefine what life with this disease looks like. In writing this article, Quenton and I honor our past, confront the present, and inspire future change. Our experiences remind us that although kidney disease may alter the course of our lives, it does not determine our destiny. We learn, fight, and foster communities prioritizing health, equity, and heart.