Friday, March 29, 2013

Tears for Fears – But the Best is Yet to Come

Before March and National Kidney Month slip away entirely, I have to share this story with you.

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.


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."

Daniel Perez, Rebuilding His Life.
He urged the audience to sign up at the event to become organ donors, to take full advantage of the free health screening opportunities, "and take brochures. Go back to your communities and spread the word. Let people know about CKD.

"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.

Tuesday, March 19, 2013

I'm Really in the Soup Now

Breaking into a new market, in a different state, is never an easy task. And although I've lived outside Chicago for nearly four years now, I will always be a Michiganian by birth and a Detroiter by heart.

As of this writing, however, I truly feel like I've been accepted in my home surroundings. In honor of National Kidney Month in March, I was invited to share my personal kidney khronicle in the March 13 edition of the Bean Soup Times, a beacon of information for Chicago's African American community for more than a decade!

My sincere thanks to Mr. Toure Muhammad, Bean Soup Times creator and publisher (not to mention comedian, broadcaster, communicator and PR professional), for his interest and allowing me to share his media platform. (Being described as an "Award-Winning Writer" in the headline doesn't hurt the old ego too much, either!)

As I mention in the article you're about to read, African Americans are experiencing end-stage renal disease (ESRD), or kidney failure in all its evil forms, at a rate three times higher than the rest of the U.S. population. So knowledge and awareness are especially crucial for black folks. If my story helps anyone reading it to take precautions – even just to monitor their blood pressure and keep it under control – I'm honored.

Here's the link to the Bean Soup post: The words in red are links to previous Just Kidneying blog entries to give their readers (and you) some deeper background into the journey.

Happy reading. Remember to caress your kidneys.

Saturday, March 9, 2013

Mr. Smith – uh, McFarlin – Goes to Washing – er, Springfield...Maybe

Now that World Kidney Month is officially in high gear, I'm thinking it could be the most appropriate time to share my big news: I have been appointed (hear the drum roll in your head) patient advocate board member of the ESRD (End-Stage Renal Disease) Advisory Committee for the State of Illinois!

The whole freakin' state! Chicago included!

I would like to thank the academy, the committee, my parents – I know you're looking down on me, Mom and Dad – my incredible wife, Karen; my family, and all the other little people like me who are affected by some form of kidney disease yet strive to maintain healthy, productive, positive lives!

I serve for you! I will be proud to represent your interests at the state capitol! On to Springfield, and victory!

OK, that's quite enough of that. The truth is, I have no idea what all this means.

Back in November I received an email from a pleasant woman at the Illinois Department of Public Health. Apparently all of this – the Just Kidneying blog, the appearances on behalf of the National Kidney Foundation of Illinois, the work with my NKFI chapter in Champaign-Urbana – placed me on the radar of some kidney koordinators at the state capitol. (The fact that my name was misspelled in the email suggested I hadn't become the talk of Springfield just yet.)

She wrote to gauge my interest in serving a three-year term on the ESRD board and sent along an application form to fill out, just to make sure I'm not a convicted criminal, a Republican or some other undesirable in Illinois. After I was vetted and approved a few weeks later, I received another email from another pleasant female bureaucrat with a note of congratulations and a downloadable, 40-page booklet entitled, "2013 ETHICS TRAINING for Appointees to State of Illinois Boards." It is required reading for everyone appointed to a state board, the email instructed, and I was to sign and return the last page verifying I had done so.

As I studied the document detailing what would be considered prohibited activities or conflicts of interest, and knowing my adopted state's "colorful" political history, I couldn't stop thinking, "Wonder if Rod Blagojevich and George Ryan ever signed off on one of these? Or read one, for that matter?"

But I'm now signed, sealed and delivered to the ESRD Advisory Committee, and rarin' to go. One of the major issues I want to address with the board, one we talk about often at my Champaign NKFI chapter, is access to care.

Where I live now, out on the high prairie, a lot of people with kidney failure live in rural areas and dialysis centers are in larger cities. Many live outside the range of bus service, and the sheer cost of gas for friends or relatives to drive them to dialysis and back (which is essential, because hemodialysis often leaves patients too weak to drive home on their own) can be prohibitive. There has to be a way to ensure everybody who needs dialysis can receive it despite $4 a gallon at the pump.

Only thing is, I'm rarin' to go but have no set destination. The committee has yet to call its first meeting of 2013, and there's no indication one is being scheduled for the immediate future.

So at the moment, I have a very impressive and important-sounding title with not the faintest clue of what I can accomplish with it. Does that make me like an ambassador?

Or better yet these days, like a member of Congress?