My life with kidney failure

Abstract

Creatinine. Cree-AT-tin-een. I never heard the word before in my life. Sounded like a French village. But I knew it was important, because of the solemn look my doctor gave me as he studied my lab tests following a routine checkup and intoned, “Your creatinine is elevated. I'd like to refer you to a kidney specialist.” That, coupled with unusually high amounts of protein in my urine, was enough to cause him concern. At first, I didn't see a problem. This is a good thing, right? We all need protein, and I've got so much I'm peeing it away! When he failed to share my sense of humor, I knew something serious was afoot. That was June 2001—around my birthday, as I recall—and my life has not been my own for a single day since. Normal levels of creatinine, the waste molecule that serves as a barometer of kidney function, should be between 0.9 and 1.3 mg/dL for a man in his 40s. Mine was at 1.5 mg/dL, and rising like flood waters. Eight years later, despite the valiant efforts of my physician and two nephrologists, a torrent of pills, regular exercise, and a restrictive new diet (the pro-kidney diet: whatever you used to like, don't eat that any more), by December 2009 I was being prepped for surgery to implant a catheter in my midsection so I could begin daily home continuous ambulatory peritoneal dialysis (CAPD) treatments for my endstage renal failure. And can we call this illness something else, please? “Endstage” sounds so … final. People frequently ask me, “What's it like living with kidney failure?” To which I typically respond, “I'd really much rather you live with it. This sucks!” I am serving the bitter punishment for being an African-American male with decades of wildly unchecked hypertension. And although a driver for Baxter Healthcare, the company that supplies my dialysis equipment, reminds me that since kidney disease and diabetes often go hand in hand, I'm lucky to “only” have stage IV renal failure, it's difficult to think of this as good fortune. I believe I've gone through all of Kübler-Ross's five stages [of grief] by now, and have settled into acceptance. At Stage 5, I'm told, one should begin reviewing legal documents and contacting florists, so maybe I am pretty lucky at that. But before we could control it with medication, the inability of my kidneys to filter my blood triggered a three-month bout of severe gout in both feet, pain so excruciating that I frequently crawled around the floor of my home rather than even thinking of standing up or using my walker. Can we call this illness something else, please? “End-stage” sounds so … final. Kidney disease and the resulting dialysis has altered every facet of my life: the way I eat, the way I bathe, the way I dress, even the way I sleep. I opted for peritoneal dialysis over other forms because, as a writer, I'm usually at home anyway, and still have the energy and capacity to perform the treatment on my own. But I still resent having to load my cycler every day—no days off—making sure I block out the eight hours needed each day for treatment, and then dismantling the equipment only to repeat the process again tomorrow. However, once my initial anger subsided and reason reigned, I vowed to learn as much as I could about my new enemy. Knowledge is power, and I wanted to be Superman. I read everything I could find on kidneys and renal disease. Acting on my training as a reporter, I took a digital voice recorder to every appointment with a medical professional and asked permission to tape our meeting. (I highly recommend this. You're in shock immediately after a serious diagnosis, and doctors start to sound like grownups talking to Charlie Brown; taping the sessions allows you to review details at your convenience.) I began my first-ever blog, “JK— Just Kidneying,” to chronicle my journey and help me make sense of it all. Amazingly, that blog has led to print and online stories about my condition, speaking engagements, and a network of supporters and fellow patients who say they draw strength from my words. I have been blessed with outstanding, amazing dialysis nurses, and am constantly reminded of what the love of a wonderful wife, my Karen, and a steadfast family can mean. I am patiently awaiting a kidney transplant, no matter how long it takes. I don't know why God chose me for this mission, but I can see His plan taking shape. Who knew having rotten kidneys could touch so many hearts?