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Nephrotic Syndrome

Christopher S.

Adults

My journey with kidney disease has been a long one, full of trials and hope. And I have lived through almost every stage of kidney disease there is. I was diagnosed with Nephrotic Syndrome at about one year old. By the time I turned seven, I had to undergo a bilateral nephrectomy, and I was on hemodialysis for about six months until my mother donated a kidney. That kidney lasted almost 13 years. It took nearly 15 years before I received my second transplant. The process of being accepted for a second transplant was challenging due to what social workers termed “psychosocial adversity.” My noncompliance with medication during my first transplant resulted in rejection. In my teenage years, I struggled with substance abuse and neglecting self-care, prioritizing street drugs over the essential anti-rejection medications for my donated kidney. The fact that I only had one kidney prevented me from drinking excessively and abusing hard drugs.

At 19, I went into rejection and had to start hemodialysis. Still, I remained indifferent. I used my disability as a shield from the law, enabling me to continue engaging in destructive behavior. For the initial one and a half to two years on dialysis, I was noncompliant with my treatment schedule and diet, making the process unnecessarily difficult. It wasn’t until I experienced a profound encounter with Jesus Christ that my life took a positive turn. After this spiritual awakening, I became a committed hemodialysis patient, and after a year, I switched to peritoneal dialysis, taking care of myself at home. I earned my GED, enrolled in college, lived on campus full time, and maintained my dialysis routine every night, taking multiple medications daily. I was accepted to the transplant list at MUSC during my senior year and placed on “non-active status” until graduation. Upon graduating from Bob Jones University, I transferred my case to Emory University Hospital in Atlanta, secured a full-time job, and worked diligently while continuing nightly dialysis at home. Approximately six years after graduating, I received a call in the middle of the night, notifying me that a kidney was waiting, and I needed to be at the transplant center within four hours.

This active involvement has significantly contributed to maintaining my healthcare by emphasizing personal responsibility, securing gainful employment, and fostering connections within my church and community.

My health has been excellent with no major setbacks the year and a half after my transplant. During this time, I have actively volunteered with an addiction recovery ministry in my city, supported by my church, and volunteered at a nearby state prison. I share my story with fellow men, emphasizing that all the hardships in our lives, even those self-inflicted, serve a higher purpose and can turn out for our good depending on how we respond to them. In the initial years post-transplant, as my visits to the nephrologist decreased, I took the initiative to familiarize myself with understanding my blood work levels. I learned to adjust my diet and water intake to keep these levels within the proper range. This involved scrutinizing my lab results and asking my doctors specific questions such as, “What does this test mean and what does it measure?” “Why might this level change from my previous results?” and “What steps can I take in terms of diet, water intake, sleep, and exercise to maintain the level within the desired range?” To comprehend my lab results, I had to pose specific questions and utilize additional resources provided by my healthcare teams.

As of 2024, it has been seven years from my second kidney transplant. During these past seven years, I have not encountered any major setbacks. I remain committed to maintaining a healthy lifestyle by focusing on proper nutrition, staying hydrated, ensuring adequate sleep, and engaging in both my job and regular exercise. I diligently adhere to my prescribed medications, including oral pills and a monthly infusion of anti-rejection medication. Additionally, I stay on track with my nephrologist appointments, seeing my local nephrologist every six months and my transplant nephrologist once a year. This active involvement has significantly contributed to maintaining my healthcare by emphasizing personal responsibility, securing gainful employment, and fostering connections within my church and community.

For those feeling hopeless and helpless due to their condition or that of their loved ones, I understand those emotions, having experienced them for extended periods. Feeling hopeless often stems from a perception of helplessness. However, it’s crucial to recognize that you are not helpless. You can take responsibility and control of your health. Seize control of your health through proper diet, sleep, and exercise. Always adhere to the advice given by your doctors, nurses, dietitians, and social workers. While you may not be able to control the function of your kidneys entirely, you can manage your diet, fluid intake, sleep, and exercise habits. Medical compliance, coupled with a proper diet, exercise, and sleep pattern, will significantly ease the challenges of dialysis. Thank you NephCure for the opportunity to share my story!

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