Two weeks ago I was at the dazzling new Ray and Joan Kroc Corps Community Center on Chicago's South Side for the National Kidney Foundation of Illinois (NKFI) annual World Kidney Day celebration, press conference and free health screenings. Joan Kroc, the late Mickey D matriarch, bequeathed more than a billion dollars (one for each burger sold, I reckon) for the construction of community centers in underserved neighborhoods through the Salvation Army, and Chicago's share of the money went to outstanding use for this sprawling, 167,000 square-foot multipurpose facility. It is nothing short of spectacular.
However, I'm told it's only been open less than a year. Please don't jack this place up, y'all.
The NKFI was hosting the day, which included appearances by Dr. LaMar Hasbrouck, a handsome young brother who's the new director of the Illinois Department of Public Health, and Jesse White, who's the old Illinois Secretary of State.
Hasbrouck laid out the basic statistics for the day, which are terrifying:
• At least 900,000 people in the state of Illinois alone are at risk for Chronic Kidney Disease (CKD), or kidney failure;
• Most of them, for the moment, are completely unaware of it;
• There are 50,000 people in the state on dialysis;
• 4,800 people are waiting for a lifesaving kidney transplant;
• Many won't find a matching donor in time;
• And African Americans are at three-and-a-half times greater risk for CKD than the rest of the population, at least in part because of our higher incidence of diabetes and high blood pressure.
Whoopee.
White came to promote the state's easy "first-person consent" organ and tissue donation registry, instituted because families so often are too distraught after the loss of a loved one to consider doling out their relative's body parts to others. This is an especially critical problem for black folks.
"Here in the African American community, we are 56 percent on the list for organs, however we participate at a level of 32 percent," White said. "It's kind of hard for you to go to Dominicks [a Chicago-area grocery chain] and buy 56 dollars worth of groceries and only have 32 dollars."
Obviously, then, many of the organs transplanted in African Americans come from Caucasians. Who'da thunk it? (Somewhere, a Klan wizard is crying.) However, "It's a known fact that your recovery is better, your life expectancy is longer, when [organs] come from the same racial group," White explained.
(This was my first time seeing White in person. He's a little fella, and arrived at the center flanked by two bodyguards. Why does a secretary of state need bodyguards? Disgruntled drivers who've waited too long at the DMV office out to get him?)
All this, however, is mere prelude to the story I want to tell you.
I've been asked to tell my kidney story many times at events such as these, and I think my tale pretty much has run its course. I'm getting a bit tired of hearing it myself. So for World Kidney Day, the NKFI asked a young man named Daniel Perez to present the patient side of the CKD heartbreak.
"My name is Daniel Perez, and I am on dialysis," he began. "I found out about my kidney issues a year or two ago, and I have been affected by it. It's very tough –"
And at that moment, Daniel Perez – this young, brawny, good-looking, outwardly confident Latino man – broke down and began to cry onstage.
The room fell silent.
So did I, but perhaps for a different reason. I knew precisely how Daniel had to be feeling.
It's virtually impossible to believe that your body, your wonderful, beautiful, protective body, is failing you from the inside out. You can't believe it. You don't want to believe it, no matter how long it's been since you've received the diagnosis or begun the dialysis drudgery. But then to try and tell a whole crowd of people about your condition...well, it can just become overwhelming.
Daniel recovered quickly, however, and in fine shape. "I always felt strong, always felt like I could do whatever anybody else could do, you know?" he said. "Never felt sick. But then I was told that my kidneys didn't work.
"I work, I hang out with friends, I have a beautiful wife. How could I be sick? But that just goes to show you, this is a disease that doesn't choose. It affects everyone. It doesn't matter who you are or what you do for a living. It's serious, sitting in dialysis for four hours with a needles shoved in my arm, cramping. You don't want to go through that. It's horrible."
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| Daniel Perez, Rebuilding His Life. |
"We can make a change, and it starts today," Daniel implored. "We're all here for a reason, so let's take action."
After the resounding applause subsided and the speeches had ended, I sought Daniel out. I wanted to hug him. I'm a hugger. Instead, considering what he'd just gone through, I reached out and shook his hand instead. Firmly.
I learned that Daniel, 34, is Chicago born and bred and works as the marketing and public relations manager for BUILD, a nonprofit whose aim is to target at-risk innercity Chicago kids and keep them away from the gang life. A brave, laudable goal, and Daniel strikes you immediately as the kind of hands-on, all-in guy who would be totally committed to the task. Which I'm sure makes his illness and the empty hours spent on dialysis all the more exasperating.
"Yeah, man, it's been the roughest year," he acknowledged. "But that's why I came here."
I talked to him, as I talk to all in-clinic dialysis patients, about PD (Peritoneal Dialysis) as an option. The ability to dialyze at home, unassisted, on my own schedule, was a major factor in helping me get through the long ordeal relatively sane. Daniel said he was presented with a variety of options when he was diagnosed, but chose conventional in-clinic hemodiaylsis because "he wanted to be near his nephrologist."
A little shellshocked, a lot confused and vulnerable, you want to be where the nurses and health professionals who know about CKD are. Completely understood. But he added that after more than a year on hemodialysis, he was open to considering other alternatives. Hemo doesn't equal happy.
Daniel said he also planned to add a health awareness component to his outreach efforts to young Chicagoans through BUILD. "When you have a healthy body, you have a healthy mind," he said.
Nobody knows that better than someone whose body suddenly isn't healthy. God bless you, Daniel.
