Christopher S.

Adult, Nephrotic Syndrome and End-Stage Renal Disease

My journey with kidney disease has been a long one full of trials and hope. I have lived through about every stage of kidney disease there is. Infancy, childhood, kidney transplant, adolescence, teenage, rejection, dialysis (both hemodialysis and peritoneal dialysis), transplant waitlist evaluation, being turned down, college, another evaluation, being turned down again, more college, another evaluation, being accepted for a transplant and being placed on the waitlist, graduating from college, working full time, trying to find a living donor, and more, waiting until I got an unexpected call in the middle of the night saying a new kidney was waiting for me at Emory. Now I am living with my second transplant.

I was diagnosed with Nephrotic Syndrome at about one year old. By the time I was seven, I had to receive a bilateral nephrectomy, and I was on hemodialysis for about six months until my mother donated a kidney. That kidney lasted almost 13 years, and probably would have lasted longer. It took nearly 15 years before I received my second transplant. It was so hard for me to get accepted for a second transplant because of what the social workers call “psychosocial adversity.” I was noncompliant with taking my medicine when I had my first transplant, and that caused rejection. When I was a teenager, I began abusing drugs and alcohol and not taking care of myself. I got to the point where I was more concerned with street drugs than the anti-rejection medications that I was supposed to take to keep my donated kidney functioning. I have to admit, the only thing that kept me from drinking until I passed out and abusing hard drugs was the fact that I only had one kidney.

By the time I was 19, I went into rejection and had to start hemodialysis. I still didn’t care. I used my disability as a shield from the law so I could keep getting high and breaking the law. For the first year and half to two years I was on dialysis, I was noncompliant with my treatment schedule and diet. That made it so much harder than it needed to be. It wasn’t until I had two very hard years on hemodialysis that my life changed after I had an encounter with Jesus Christ. When God saved me, I became the best hemodialysis patient I could be, and after a year I switched to peritoneal dialysis and began taking care of myself at home.

I was able to obtain my GED and enroll in college (even though I had dropped out of school in ninth grade), and I lived on campus and went to school full time while dialyzing every night and taking handfuls of medicine every day and at every meal. I was accepted to the transplant list at MUSC my senior year, and put on “non-active status” until I graduated. When I graduated from Bob Jones University, I had my case transferred to Emory University Hospital in Atlanta. I got a full time job and worked every day while dialyzing every night at home. It was about six years after I graduated from college that I got a call in the middle of the night saying a kidney was waiting for me, and to be at the transplant center within four hours.

My health has been excellent with no major setbacks. This past year and a half after my transplant has been one of the best I can remember. When I can, I volunteer with an addiction recovery ministry in my city that my church supports, and volunteer at a state prison near me also. I encourage all those men with my story, and tell them that all the hardships in our lives (even the ones that are self-inflicted) are serving a higher purpose, and they will turn out for our good depending on how we respond to them.

You may feel like you are hopeless and helpless because of your condition or that of your loved ones. I know that I felt that way many times, sometimes for months on end. I felt hopeless because I thought I was helpless! The fact is, you are not helpless. You can take responsibility and take control of your health.

Take control of your health with proper diet, sleep, and exercise. Always comply with what you are told by your doctors, nurses, dietitians, and social workers. You may not be able to control how well your kidneys function, but you can control what you eat and your fluid intake, as well as your sleep and exercise habits. Medical compliance along with a proper diet, exercise, and sleep pattern will make dialysis so much easier.