The Journey We Take Alone: Part Eight

By Alexander "Sandy" Prisant

By age 20 I had already been married two years. I was at the university and working in journalism. All full-time. Why was I cramming in so much, so fast? From the beginning had my subconscious been telling me “you don’t know how much time you have?”

For decades, the importance of the kidney was wildly underrated. The National Kidney Foundation used to have a campaign theme: “It’s Not Just Another Disease. It’s the Fourth Major Cause of Death in the United States.” Over the years, medicine had found that the organ handled scores of functions, many of them life critical: from tirelessly filtering poisons out of our blood to promoting red blood cell generation. The kidney even impacts our physical growth. Having only 40% kidney function from birth produced a body, in my case, that was not quite right—sturdy legs supporting a frail torso. That left me chronically short of natural muscle, causing the usual problems for any schoolboy. Nonetheless, Dr. Swick would have been shocked to see me playing varsity soccer and baseball.

My adolescence had been fairly uneventful. For a while, the family and I almost believed I was becoming normal. Then at 16, I got my first kidney infection. There was some fever and a little discomfort. It was easily treated by a nephrologist who concluded his examination with an almost offhand remark: “you’ll probably need an operation when you’re about 50.” Somehow this man was seeing 33 years into the future. He was talking about an operation that did not yet exist—a kidney transplant. And he turned out to be right.

But that one incident was quickly forgotten as I moved through my teens. With work, university and a loving wife, sleep for me was as optional as for any 20-year-old. The crushing fatigue of advanced kidney disease can take decades to develop. But the consequences of chronic renal failure were already appearing. Before I could vote, I’d already developed high blood pressure—a quarter century sooner than most people did, but a common situation for kidney kids.

At first I was on three or four pills a day. That grew to more than a dozen; it’s been an evolving pharmaceutical cornucopia everyday since, as new symptoms appeared and new frontline drugs came along to counter them. “Everyday since” now comes to almost 17,000 days and counting.

Poor kidney function means all your organs are trying to survive and work with poor body chemistry. Every day. The effects can range from coronary artery disease to diabetes to stroke.

One afternoon when I was nearing 30, my mother was passing by a bathroom at the family home that was a magnet for all four of us--as boys, then men. I had carelessly left my pill bag open on the bathroom counter. She looked at the bottles and blister packs and slumped onto the toilet seat. My mother was a loving person, but she didn’t wear her heart on her sleeve. I can only remember her crying twice; once when she phoned me, in shock, to bemoan the slaughter of Martin Luther King. The second time was when she sat in that powder room, looking at the mountain of meds keeping me going.

Now I’m up to 18 pills a day, but it’s like anything you do every day; it becomes as routine as pulling on your socks. I’ve learned that these things often seem more horrific to observers than patients. As I’m tossing a dozen pills down with a single gulp of water, I’m thinking about sports, business or dinner. Mostly, it’s loved ones, not patients, who are left in tears.

Because there has never been any other life but this one, uncertainty and mortality have always been too close to be feared. But with few overt symptoms and no pain for decades (making kidney disease more insidious), I’ve still had all the normal ambitions; to ponder what I could achieve and what adventures might lie before me. I’ve been fortunate to work for governments and the Vatican and to tackle challenging projects on four continents.

And possibly more easily than some, the medical reality deep inside has helped me to do what all of us are always urged to do—to live in the present. To feel the moment. Every day.

Writer Sandy Prisant is a survivor. His story, "The Journey We Take Alone," which began on MyStoryLives in March, tells the tale of a person who has lived with a serious kidney disease all his life. Part Seven appeared on May 31, 2011, and there are links in that post to all previous installments. At this moment, Sandy is waiting for a heart and kidney transplant, and he is in good spirits!