Flying the Friendlier Skies

Jetting Down South to Orlando this week to attend and present at the 4th Annual Home Dialyzors United (HDU) "Meet Up and Conference," I couldn't help thinking about a similar flight I took in this direction several years ago. In Atlanta, a burly baggage handler at the Hartsfield-Jackson International Airport and I nearly came to blows in a tug-of-war over my "suspicious" suitcase.

Inside the menacing black bag was my trusty 27-pound Peritoneal Dialysis cycler, the Baxter HomeChoicePro. I had traveled extensively with it in the past and received not a peep of protest from airline personnel, and breezed it through security this time without a hitch.

As I was lumbering down the jetway to board this flight, however, Harry Knuckles in the blue coveralls gave my case the quick eyeball and deduced that it couldn't possibly fit in the overhead. He literally attempted to snatch it out of my hands as I passed by.

I yanked back. He pulled again. After several tense seconds I stared him in the eye.

"LOOK!" I yelled in his face. "What's in this case costs more than you and I make in a year! It is NOT leaving my sight! If it goes under the plane, I'm going under with it!"

Eventually, Magilla Gorilla relented. And a place was found onboard for my cycler.

Tragically, from what I've since come to understand, mine was not an unusual nor isolated experience. Hopefully, it's one that will not be repeated in the future, thanks to the aggressive lobbying of Home Dialyzors United.

This summer, HDU persuaded the U.S. Department of Transportation to issue an official guidance letter to the airline industry outlining the regulations to carry portable dialysis machines for passengers with disabilities – free of charge, of course.

By law, all U.S. air carriers are required to carry assistive devices for the disabled without charge. But previous regulations spoke primarily to such equipment as wheelchairs, oxygen units, canes and personal respirators. There was no specific mention of portable dialysis machines, which have become increasingly more common in recent years as more and more Americans with kidney failure opt to do dialysis at home – more than 40,000, according to best estimates.

"It's a huge victory for home dialyzors who have been discriminated against when traveling by air with their portable dialysis machines,” says Rich Berkowitz, founder and president of HDU. And he is one of them: His crusade began in January 2010 when, flying for the first time since going on home dialysis, he was denied permission to bring his portable equipment on board.

"I got into a huge fight with the [airline] managers, and finally ended up talking to a supervisor who let us put the machine on," Berkowitz recalls.

Here is something everyone who has ever met Rich Berkowitz knows well: Don't cheese him off, or give him a cause. The airline did both.

He filed a complaint with the Department of Transportation and sent an email to the CEO of American Airlines, with a copy of his DOT complaint attached. "So I got a call back," he says. "But American really ended up doing nothing." Rich began hearing similar complaints: one poor home hemodialysis patient had to miss his flight and return home when United refused to allow his life-preserving apparatus to fly with him. Another DOT complaint, another CEO communiqué.

Rich wrote an open letter to the airlines and posted it on his website, http://homedialyzorsunited.org/. But he didn't stop there. As founder of the Friends of the Congressional Kidney Caucus, Berkowitz has cultivated a few BFFs on Capitol Hill. He consulted each of them until he found one with a good hook into the DOT. And in June, an official revised set of assisted devices guidelines was announced that now includes portable dialysis machines. Since then, a foreign airline, the state-owned Caribbean Airlines Limited, has followed suit.

"Here's the thing," Rich says. "Forget about the fact that I did it. The fact is, somebody did it. Somebody took the initiative and was persistent enough to get this thing done. The message we have to get across to dialysis patients is, we can make change."

Rich Berkowitz

I was reminded of all this while soaking up knowledge at the HDU's annual showcase event this week. The nonprofit Home Dialyzors United is the only dialysis patient organization dedicated exclusively to home dialysis. The group is – oh, who am I fooling? The group is Richard Berkowitz.

He is the originator, guiding force and conscience of HDU. Rich is haggis on two legs: an acquired taste if ever there was one. Irascible, cynical, blunt, tenacious...the next words he minces with anyone will be his first. But his unbridled passion for home dialysis and kidney patients oozes through his every pore, and as the tale above demonstrates, he gets things done.

His two-and-a-half day conference was a true eye-opener. The location, the sumptuous Rosen Centre Hotel, was more resort than meeting place. Presenters included a psychologist from Denmark. The second HDU awards banquet featured the man generally considered the father of home dialysis, Dr. Christopher Blagg of Seattle, and honored Dr. Christopher Hoy, medical director of the Rubin Centers in Albany, NY, who championed the first home hemo program in New York.

The event brought together some of the nation's most prominent nephrologists along with patients, nurses, care partners and renal professionals, to share information and support while achieving the one-on-one face time hectic schedules almost never allow. The "Meet Up" was a place to ask questions informally, share experiences, find hope. (Although I'm not quite sure about that name.)

It was an amazing gathering. I can't wait to go again next year.

But being a one-man band, even with the assistance and care of Rich's delightful wife, Karen, can exact a toll. Late on the first full day of the conference, Dr. Victor Gura, the internationally renowned UCLA nephrologist who invented the wearable artificial kidney, was wrapping up his presentation; Berkowitz, seated in his customary spot on the front row of the gallery and clearly exhausted from his organizational duties, had fallen fast asleep.

Gura couldn't resist: "If you'd like to see the slides from my talk again," he said, "I'm sure they'll be placed on the website by Rich – Rich! RICH!" Rich didn't move, until Karen walked up to gently embrace him awake.

Even then, Berkowitz could be surprisingly self-deprecating. The next day, introducing Gura for his second appearance, he said, "I'm sure everybody heard Dr. Gura's talk yesterday...but me."

Jimmy Cracked Crabs, and Learned About Care

Got an email from The Renal Network, the nonprofit dialysis monitoring group that made this an "award winning" blog and for whom I serve as patient representative for its "Network 10," covering the entire state of Illinois.

There's a national conference in Baltimore this September aimed at improving safety for dialysis patients, the message said, and would you like to attend as our guest on behalf of Network 10?

Swear to God, the first thing that leaped to my mind was, "Hmmm, crab cakes."

What the heck? Who am I, the black Homer Simpson?

But yes, of course! I shuffled a few meetings on my schedule and gladly agreed to go. Selfish motive: I've been invited to speak at another national convention in Orlando the following month about my experience as a kidney patient on Peritoneal Dialysis (or PD – more about that at a later date), and I hoped to pick up a few factoids or public speaking tips that might help my own presentation.

Well, I'm back from the convention – held at the worst hotel I've ever had the misfortune to inhabit, the Sheraton Baltimore City Center – and I'm so glad I went.

(Why is this Sheraton Baltimore the worst hotel in my history, you may ask? Thanks for caring! Let me give you just one example:

The morning of my checkout, preparing for a 15-hour travel grind from Baltimore to Detroit, I hopped into my shower only to discover it had no water. Not just no hot water: no water at all!

When I went down to the front desk to complain, the uncaring clerk slapped a piece of paper on the counter and pushed it toward me. The heading read, "Baltimore Water Restrictions." Apparently, the city was in the process of upgrading its water pipelines.

"It's the city's fault," the clerk said, looking at me like I should just understand.

Would you want to begin a grueling daylong journey without a hot shower? Would you pay $200 a night to stay in a hotel that couldn't provide one? Even Motel 6 can do that! I pitied the people who sat next to me on the flight home!)

I do love Baltimore, however. Went there years ago simply because it was a major American city I never had visited before, and set a goal to sample as many varieties of crab as I could. For five days I savored authentic Maryland crab broiled, baked, sautéed, fried, steamed and raw.

And crab balls.

All crustaceans that are weary and heavy laden with butter, come to me and I will dip you in tartar sauce. Seafood, eat food. I knew it was unlikely I could duplicate that bliss during the gaps in a day-and-a-half conference, but it wouldn't be for lack of effort.

Grand and glorious city, Baltimore. The Inner Harbor. Camden Yards. The National Aquarium. But I must say, they do drive kind of funny there.

Saw this on my walk back from dinner on my first night in town. I'm thinking the driver must have figured this was the real Grand Central and his car was a train.

My biggest takeaway from the conference – besides the crash and the crab cakes – is that nephrologists and other medical practitioners are just as concerned about patient safety as patients are, if not more so...and just as bewildered and uncertain about the best way to achieve it consistently.

Dubbed "Creating a Culture of Quality: The Critical Role of Communication in Improving ESRD (End-Stage Renal Disease) Patient Safety," the keynote speaker was Jonathan Blum, whose title is, "acting principal deputy administrator and director of the Center for Medicare Centers for Medicare and Medicaid Services (CMS)."

That's mouthful enough, but Mr. Blum could have stood at the podium and yodeled the lyrics to "Blurred Lines" and this audience would have hung on every word. That's because whether you're a dialysis patient, kidney transplant candidate, recipient or medical provider, you are intensely interested in the status of CMS because it provides so much financial assistance for renal patients who could not possibly shoulder all the costs of dialysis treatments and medications on their own.

Blum declared that Medicare is spending "much less than any other avenue of the health care delivery system" and that CMS is "producing more value, higher quality and lower costs to taxpayers and beneficiaries. It is possible to improve overall benefits...while costs are going down."

That's such good news that I was hoping he wasn't just delivering happy talk to an audience eager to hear it. Then again, as far as I know Blum isn't running for office, so I'll take that positive outlook at face value for now.

I was so impressed by Dr. Richard Formica Jr. (pronounced exactly the way you wouldn't think), associate professor of medicine and surgery at Yale University, who shared the results of Yale research that shows major disparities and barriers exist in access to kidney transplants, then discussed his university's approach to solving those problems.

According to Formica, such factors as education (or lack of it), socioeconomic status, race, obesity, even gender (males over females) can play a role in one's placement on a transplant list. Once you're on the list, he said, everyone is equal, but prior to that being poor, or black, can make a difference. As he continued speaking, it sounded as if being African American was such a roadblock to receiving a new kidney that I leaned over to my friend Jim Dineen, representing Network 9, and whispered, "How the heck did I ever get a transplant?"

However, as is so often the case, it was the personal stories from patients, regular folks who have faced extraordinary medical challenges and stared them down, that left the greatest impact.

I was fascinated by the poise, polished thoughts and communication skills of Virna Elly, the ESRD patient representative for Network 5 (the home team, representing Maryland, Virginia, West Virginia and D.C.), who has been a diabetic for 33 years, an ESRD patient for 13 and has battled hypertension, hyperthyroidism and cataracts. "I've been sick longer than I've been alive," she quipped, though she soon will celebrate eight years with a successful kidney/pancreas transplant.

Elly posited the unique theory that to truly understand the kidney patient experience, one shouldn't visit dialysis centers or waiting rooms – go to support and advocacy groups, filled with people who are actively involved in gaining knowledge and insight about their illness. "If you really want to know about alcoholics," she reasoned, "don't go to the bar. Go to AA."

Yet, the superstar of these sessions for me was the delightfully homespun Maggie Carey, chair of the Patient Advisory Committee for Network 11 (Mich., Minn., N.D., S.D., Wis.) and the second of four family generations to be afflicted with polycystic kidney disease.

"I watched my mother die on dialysis," said Maggie, who soon will celebrate 17 years with her kidney transplant, remembering her abject fear of going on Peritoneal Dialysis – or any form of dialysis, for that matter. "My nurse said, 'Oh, honey, you can do it. My father does it, and he's 90. And blind.'"

Maggie contended there are three basic questions every patient diagnosed with kidney disease asks:

"Am I going to die?"

"Am I going to look silly while I die?"

"How much is it going to hurt?"

I, of course, would add the fourth, and most important question of all:

"Will I still be able to eat crab cakes?"

(For information on the "Creating a Culture of Quality" conference itself, including all presentation slides displayed at the event, go to esrdnetworks.org and click "Quality Conference September 2013" on the left-hand side.)

Walking in the Motor City, Hoping for a Lift – Come Join Me Saturday!

The facts are these: African Americans, who seem to fall victim to every illness from diabetes to high blood pressure at a far greater rate than the rest of the population, make up the majority of people on waiting lists for organ transplants.

However, although black folks need more organs, we donate fewer after we die. A lot fewer. And nearly every medical study you'll see says an organ from a donor of the same racial or ethnic group has a much better chance of being transplanted successfully and overcoming rejection.

C'mon, brothers and sisters, step up! Do you really want some middle-aged white woman's kidney rumbling around inside you?

(Whaddaya think? "White woman" reference too much? Over the top?)

I'm in Detroit this weekend, making an 800-mile round trip from my current home to my favorite city because this is an issue I care about passionately. I was so blessed: I received my donor kidney from a young African American girl, and some doctors say I'm doing better today than I ever did with my own kidneys. She literally saved my life.

You could save some lives, too.

This Saturday, July 27, I'll be speaking – and walking – at the 16th annual LIFE Walk on Belle Isle, sponsored by the Detroit chapter of  MOTTEP (the Minority Organ Tissue Transplant Education Program). The event features a 5K and 10K run in addition to a 5K walk (my mind and heart say "run," but my knees are holding them both hostage in favor of "walk.") The real purpose, however, is to heighten awareness about the critical need for more minorities to consider organ donation.

I hear the goal of Saturday's get-together is to sign up 250 new organ donors. What? I think we can do at least twice  that, even though many of those who will attend the LIFE Walk already may have committed to donation. I say 500 new donors! Hey, why not think big?

I'll be joined by some local TV celebs from Channel 7 (WXYZ), meteorologist Keenan Smith and news anchor Glenda Lewis. And I understand that Glenda's mom, Detroit television legend Diana Lewis, may show up as well. (Can't wait to give her a big hug!) And my old friend (whom I haven't seen in years – some friend I am), former U.S. Attorney Jeffrey Collins, will serve as the official Run Marshal.

If you're anywhere near Metro Detroit, come and join me Saturday if you can. Registration opens at 7:30 a.m., the run begins at 8:30 and the walk commences at 9. My goal: To touch your heart and conscience, bring a tear to your eye and make you knock other people over in your rush to sign up as an organ donor.

I promise you three things: It won't hurt when they harvest your organs for donation. You could help eight people or more live fuller, happier lives as your legacy.

And no matter where you end up going, you won't need your body after you leave.

'Hot in Cleveland' Is Hot for Donors

Here's a great reason to watch the TV Land sitcom Hot in Cleveland this week, besides the irrepressible Betty White and the extraordinarily fine Valerie Bertinelli, who I had a major crush on when I was a kid and she was on One Day at a Time especially because I knew she grew up in suburban Detroit not far from where I lived and....

Malick, Leeves, Bertinelli and White, 'Hot in Cleveland'

Oops. Went off the grid there for a moment. Sorry.

In a first-of-its kind partnership, TV Land and Hot in Cleveland are teaming with the nonprofit organ donation website MatchingDonors.com to raise awareness of the crucial need for organ donors with this week's episode Wednesday (7.17) at 10 p.m. EST. In the storyline, legendary soap opera star Victoria Chase (Wendie Malick, who I had a major crush on...oh, never mind) makes the life-altering decision to donate one of her kidneys to a desperately ill young girl.

You'll laugh, you'll cry, you'll be moved, I suspect.

MatchingDonor.com claims to be the most successful nonprofit agency targeted to "finding living altruistic organ donors for patients needing transplants," receiving more than 1.5 million hits to its website every month.

"We are proud to partner with TV Land," says MatchingDonor founder and CEO Paul Dooley. "Their unselfish efforts in promoting organ donor awareness will directly result in saving lives."

As someone whose life was saved by a successful kidney transplant Nov. 18, 2011, you can bet I'm eager to see this episode. My donated kidney wants to watch, too.

I've been telling her about Valerie and Wendie.

EVERYTHING You Wanted to Know About Transplants – But Didn't Know You Wanted to Ask

Most people know that the wonderful comedian George Lopez received a kidney transplant in 2005, and got the donor organ from his wife, Ann. But did you know he wanted absolutely no part of becoming what he calls "the poster boy for kidney disease?"

George Lopez (Gavin Bond/TBS)

"I just wanted to get in, get out and get on with my life," Lopez admits. "But...I decided that I could not turn my back on the message of organ donation, of prevention, and of taking an interest in your health and the health of your family."

What changed his mind? I found out – and you can, too – in the weekend edition of USA Today last week, which featured a Media Planet section entirely devoted to issues surrounding organ transplantation in America.

Beyond what's billed as Lopez's first-ever interview about his transplant, there are stories on:

• How medical and technological advancements are helping to lessen the time spent on the waiting list for a replacement organ;

• A discussion on the future of transplantation with three celebrated medical experts;

• An article on the financial burdens and realities following an organ transplant;

• A first-person feature on snowboarder Chris Klug, who continued to excel at his sport despite a liver transplant, and much more.

It's a truly impressive – and unexpected – collection of stories regarding one of the topics nearest to my heart. (Or more accurately, my kidney.)

Among the things I think I already knew but are always worth repeating are:

• More than 118,000 Americans are waiting for an organ transplant right now;

• Many of them will wait five years or more for the opportunity to receive a replacement organ;

• Thousands of them will die every year as the gap between the need for organs and the number of organs available continues to widen.

And something I didn't know: 40 percent of all transplanted lungs are rejected.

Yow.

This section from Media Planet, an independent content provider, is really worth diving into if you want to know more about the present and future of transplantation. I'm so glad "Sidney Kidney" turned me on to it. (If you don't know, I can't help you.)

You can read the section HERE.

Funny, You Don't Look (Barnes) Jewish

I have a deep, abiding affection for Barnes-Jewish Hospital in St. Louis. I imagine I always will. It's hard for me not to think of that sprawling medical complex in the shadow of the Gateway Arch as the place that saved my life.

B-J was, and still is, my kidney transplant center. My wife and I chose it over hospitals in Chicago and other cities for many reasons: its sterling reputation and record for successful transplants primarily, but also because we figured it would be easier and cheaper to get in and out of St. Louis for our many medical appointments and eventual surgery. And, although this is impossible to quantify, we thought the people in the St.L might be nicer and more accommodating as well.

Dr. Jason Wellen, right, and Happy Patient

Like I said, we can't tell if that's true for certain. But after our experience there, we suspect it might be. Surely Dr. Jason Wellen, the Barnes-Jewish surgeon who performed my operation,
is the kind of standup guy you'd love to have a beer with – if, of course, you could drink beer right after having a transplant.

So when Barnes-Jewish senior media relations coordinator Anne Bassett and her department asked me if I would contribute a guest blog to the hospital's website in honor of April as National Donate Life Month, what was I going to say? "Hold up, let me think about it?"

I don't know if other transplant recipients are as passionate about increasing the ranks of organ donors as I've become, but by the same token I can't imagine how they couldn't be. A successful transplant is more than even the "gift of life:" it's a life utterly reborn.

And like I say in my post on the Barnes-Jewish website, which I do hope you'll read by clicking here, it's a cause I feel so strongly about – especially for people of color – that I was willing to endure frostbite and the potential loss of body parts earlier this month to sign up potential donors.

My sincere thanks to Anne Bassett and all the extraordinary people at Barnes-Jewish Hospital for the opportunity to invade their online space. They may be residents of the heartland, but they do mighty fine with other organs, too.

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.

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."

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.

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: http://bit.ly/WEexln. 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.

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?

Kidneys On Patrol

March, as every man, woman and child in America knows, is National Kidney Month.

The renal version of Mardi Gras, the Super Bowl and Independence Day, all rolled into a giant kidney-shaped ball.

Whoopee!

For some reason, I'm even more excited about this year's festival of function – highlighted by World Kidney Day Thursday, March 14 – than usual. So I'm getting an early jump on things. Maybe it's because I feel I've become more immersed in the kidney community in Illinois, the state where I live, than ever.

And one of the coolest things about NKFI, the National Kidney Foundation of Illinois, is its funding and perpetuation of the KidneyMobile, a fully equipped van that circles the state providing information about kidney disease and free screenings of blood sugar, blood pressure and urinalysis. People who get tested also have the opportunity to meet with a healthcare professional to review their results and discuss next steps.

And believe you me, when it comes to your kidneys, knowledge truly is power!

Here's a closer look at the KidneyMobile, thanks to this new NKFI video:

If you're in the Chicago area, I'll be joining in the World Kidney Day celebration on Thursday, March 14 at the Ray and Joan Kroc Community Center, 1250 West 119th Street. The event begins with a press conference at 10 a.m. at which Illinois Secretary of State Jesse White and several other Windy City bigwigs will speak, followed at 10:30 by five hours of free screenings for anybody willing to sit down and get tested. 

It's a big day for kidneys all over the earth!

For more information on World Kidney Day, check out this web page from the National Kidney Foundation. For more information on the Chicago festivities, call NKFI at (312) 321-1500.

Happy Peeing, Everyone!

Goodbye, My Kidney Cousin

My dear friend Karen Dumas was the first to let me know. She and I had just shared breakfast that Friday morning, lamenting the post-New Year winter doldrums of January and the difficulty of getting your emotions jump-started and your life's goals in proper focus. So she must have known how I'd respond to the news.

She sent a text message that afternoon. Four words were all that was needed.

Gift of Life Organization

"Hugh Grannum has passed."

They hit me like four sledgehammer blows to the chest.

Hugh Parker Grannum, you see, besides being an award-winning, legendary, trailblazing photojournalist at the Detroit Free Press for more than 37 years prior to his retirement in 2007, felt to me like my kindred spirit because we shared an intimate connection:

We both contracted kidney failure at about the same time, and were on waiting lists for a transplant simultaneously, albeit in different states.

Hugh, 72, was at the Free Press long before I started writing for the rival Detroit News, and he remained there long after I left. We weren't exactly what you'd call bosom buddies during those years, but we knew of each other and were cordial whenever our paths would cross. (Bitter competition between the two daily papers in those days often hampered close friendships.)

But oh, how I admired his work! Hugh's photos consistently captured the essence of humanity, grace and quiet strength. As noted in his obituary, which you can read here, he was extremely mindful to shoot his subjects with dignity, especially African Americans, knowing it may be the only time in their lives they were photographed by a professional. I have worked with a number of very fine photographers over my career, but I always wished Hugh could have embellished one of my stories with his singular magic.

Hugh Grannum just radiated cool. The late, fabled Detroit Mayor Coleman Young, who generally despised anybody who even appeared to have a media connection, maintained an open-door policy with Hugh. Nattily dressed, thoroughly professional, devoted to his art, he was every inch a role model, and after his kidneys began heading south our mutual admiration deepened.

Because of the close timing of our end-stage renal diagnoses and the fact we were both creative black men who worked for Detroit newspapers, our illnesses became closely intertwined. We often were mentioned in the same sentence; the great Freep columnist Rochelle Riley wrote about our mutual transplant needs. I recall one "friendraiser" benefit in Detroit that was held on behalf of us both. Mutual friends would keep me aware of his condition, and I'm certain they did the same with Hugh.


He received his transplant first, in 2010. I sent him a congratulatory card and effusive online best wishes. When I got my Cheyenne in November 2011, I received the same in return. We began speaking on the phone semi-regularly, just checking in and offering encouragement. Then last winter, we finally coordinated my travel plans and his hectic post-retirement schedule in order to meet for dinner.

Hugh, his delightful wife Carolyn and I met at Slows, Detroit's hottest barbeque joint, on a snowy, windy night. He was wearing a jaunty winter cap (oh, he could wear some hats) and his stylish little round glasses. We talked and laughed for hours, comparing transplant waiting list stories, hospital tales, surgery sagas and medication inventories. It was a magical, cosmic kind of evening. It's not because he's gone now that I'm saying this, but it was a night I will never forget.

There was a lot more wrong with Hugh than kidney miseries. He was afflicted with leukemia and, like me, still waged a constant battle against hypertension. Yet he seemed so upbeat, so happy, so...healthy that night, so positive in looking forward to his future with Carolyn and his lovely daughter, Blake.

A lot of people say, "I can't believe he's gone," when someone close to them dies, but in this case I mean it. In a very real sense, losing Hugh is like losing a part of my body, a slice of my history. Admittedly, it's a stunning, slap-in-the-face reminder of my own fragility and mortality. Hugh was literally my brother under the skin, and we both had the scars to prove it.

I can't imagine ever forgetting you, my friend. Hugh Grannum and I will be forever joined at the renal artery. Godspeed to you, man, and deepest sympathies to your family and your many, many friends who will remember you long and fondly.

Again, for more about Hugh, here is the obituary from his newspaper home, the Detroit Free Press.

New Year, New Life

It's been all the talk around where I live. Or maybe because people know about my medical situation, they've been racing up to tell me about it.

Shortly before Christmas, a man strolled into a suburban Chicago hospital and announced that he wanted to donate one of his kidneys. Not to anyone in particular, he explained; he just felt compelled to give a special Christmas "gift of life" to somebody.

After running the customary battery of tests (physical, not psychological), it was determined that his kidneys were a match for a 60-year-old wife, mother and grandmother from Burbank, Ill., who had been on dialysis for six years while waiting for a transplant donor.

Six years.

Six years of energy- and body-sapping dialysis, every week after exhausting week. Six years of waiting for a matching organ, hoping for the phone to ring with "the call," praying for deliverance. A six-year sentence, six years of a life not being fully lived.

What an indescribably amazing present.

Now, I'm not suggesting that you run out and do the same (Lord knows I can't), but you may be surprised to know that this type of altruism is not as unusual as you might think. According to UNOS (the United Network for Organ Sharing), more than 6,000 living, breathing people donate an organ for transplantation every year, and one out of four of them have no biological connection to the recipient.

Still, to just walk into a hospital and volunteer to give up a part of your body....

The woman in Burbank referred to her donor as "my angel," and she's probably not far from wrong. What a phenomenal way for her – for both of them, actually – to ring in the New Year!

So let me end this meditation the way I end many of my speaking engagements: Please consider organ donation. Just consider it. As of this writing more than 74,000 people are on the active national waiting list for an organ transplant, and hundreds die every year still waiting.

Make the notation on your driver's license. Let your family and friends know of your intentions. Once you're gone, you won't need them. Honest. Trust me. The Walking Dead is just a TV series. It's not real.

And as for donating an organ while you're still living, hey – as gifts go, it beats the heck out of a Kindle.