And He Was in the Skeet Shooting Hall of Fame, Too

I don't know if it's my stage of life, or just life being life. But for most of 2019, I felt like I was overwhelmed by death.

Celebrities. Sports legends. Relatives. Close friends. Relatives of close friends. Almost every day, it seemed, I was saying goodbye to someone who occupied at least a small corner of my mind and heart. Have you ever felt that way?

A Wide-Screen Tribute to Morrie at a December NKFI Forum.

So rapidly were souls "leaving this Earth," as my mother used to say, that I didn't have time to mourn them individually. It was as if I were in a constant state of grieving. However, since we're in that annual period of "Remembering Those We Lost" in the previous year and starting anew, I didn't want the window to close without acknowledging one loss that hit me particularly hard: Morrie Funkhouser.

After all, how can you not remember a guy named Morrie Funkhouser?

Morrie –– or Morris E. Funkhouser II, if you please –– was one of the first people I met after I was encouraged to join the local transplant support group, hauntingly named "Second Chance," shortly after my kidney transplant in November 2011.

Now Frank Veach, the longtime leader of the group, is a delightfully engaging and salt-of-the-earth fellow, a bit of a goofball, difficult not to like. I accepted his welcome into the fold with gratitude.

However, if memory serves I was the only person of color in the group when I joined. (Dave Freeman and his wife Mara have since come on board to help even the odds.) I had only moved from Detroit to the middle of corn and soybean country a year or so before, and most of my time in my new prairie home was consumed by medical appointments, surgery and recuperation. I really didn't know the lay of my land very well.

I think most black people know that feeling of being the only in the room. Stranger in a strange land, I had no idea what to expect.

Then I see Morrie: older, weathered, a factory machinist all his life. The guy at the end of the bar. I stereotyped his gruff exterior the moment I saw him, I'm sure.

Morrie, in a Glamor Shot.

And I could not have been more wrong. In how many situations could an African American writer from Detroit and an instrument maker from central Illinois become chuckle buddies?

Morrie was warm, wonderful and wise. He was the longest surviving kidney transplant recipient in our little band, 27 years and counting before other causes took him from us last June at the age of 72. He was afflicted with polycystic kidney disease, a genetic disorder in which fluid-filled sacs, or cysts, grow in the kidneys and disrupt their ability to do their job in filtering waste products from the blood. About one in 1,000 people worldwide have the condition, including Morrie's son, Anthony, who inherited it.

In most kidney transplants, the failing kidneys are left inside the body because, hey, they still may have some function left, and what could it hurt? In Morrie's case, his cyst-covered kidneys became so huge and invasive –– nearly 13 pounds each –– that both organs had to be extracted.

He never complained, and almost never said no to an opportunity to serve, inform or assist in some organ donation drive or renal-related campaign on behalf of the National Kidney Foundation of Illinois (NKFI), Gift of Hope, or Illinois Secretary of State Jesse White's Life Goes On crusade.

I remember spending many delightful hours chatting with Morrie under a canopy or in a tent somewhere in the region, encouraging people to become donors and answering their questions as living examples of what transplants can mean to people's lives. He was an outstanding ambassador for the cause, and at an NKFI "Living With Kidney Disease" seminar last month in Champaign, a moment was set aside to honor his life and dedication. Class move.

My Friend, the Hall of Famer.

And yet, as is sadly the case with even our closest friends, there were several things about him I did not know until I read his obituary. For example, even though we talked about music, I had no idea he was a talented, longtime musician who played more than a quarter century in a band called The Variations. And he never once mentioned to me his gift for skeet shooting, a  passion that led to his induction into the Illinois Skeet Shooting Association Hall of Fame in 2011.

Glad he liked me; he probably could have picked me off at 1,000 feet.

He was blessed to find love again after his first wife, Ann, died in 2005. I did not know Ann, of course, but his second wife, Sandy, was something special. Bubbly, blonde and vivacious, she's the kind of person who brightens a room just by entering it.

She clearly loved Morrie very much and they planned to care for each other well into their golden years, a scenario that tragically was cut short far too soon. Morrie's health declined so rapidly that by the time I heard he was hospitalized and hurried home from my summer vacation, he was gone.

I understand Sandy has since relocated out of state. Good for her, bad for us. I got to visit with her at his visitation, but she often accompanied Morrie to our monthly support meetings and I miss her. She is quite a lady.

Strangely, Funkhouser was the second "Maurice" who had a seminal impact on my life. The late Maury DeJonge (say "DeYoung") was a legendary political reporter for the Grand Rapids Press who later went on to become the county clerk for Kent County in West Michigan.

My first job out of college was at the Press, and I was given the desk directly across from his. He was a close personal friend of Gerald R. Ford, knew everything taking place in local government almost before it happened, and it was a revelation for this cub reporter to watch him work.

What a Handsome Young Morrie! 

For reasons I never understood, DeJonge took a liking to me and placed me under his wing. I'll never forget the day we were walking out of the newsroom together to our separate assignments and I happened to glance at the wall clock. "Looking at that clock?" he intoned. "Forget it. The news doesn't keep a 9-to-5 schedule."

I have been truly blessed. The Morrie the merrier, I guess.

We will gather in January for our next "Second Chance" group meeting, and undoubtedly we will miss Morrie again. I'm not certain when, or if, we will ever stop.

Memorial contributions may be made in Morrie Funkhouser's name to the Polycystic Kidney Foundation at https://pkdcure.org/tribute-donation, or at 1001 E. 101st Terrace, Suite 220, Kansas City, MO 64131.

Give the Gift of a Kidney This Holiday Season

Hey, 'tis the season of giving, right? And what better gift could one give to anybody than a better quality of life?

Or for that matter, life itself?

This could be an appeal to you, Dear Reader, to become an organ donor. But knowing you I'm sure you've done that already.

Instead, you may remember earlier this year I introduced you here to my dear friend Lana Schmidt, one of America's great kidney crusaders and a woman badly in need of a kidney herself. (Look up "Lana Needs Your Love...and a Little Bit of Your Money" from May 25 on this blog.)

In the 12 years since a rare disease called Goodpasture's syndrome robbed her of her kidney function, Lana has been on every form of dialysis known to man. And as anyone who's been through it will tell you, getting dialysis three or more times a week, every week, can exact a tremendous toll on one's body.

Lana Schmidt, on a Kidney Crusade.

Lana is prepared, mentally and emotionally, for the kidney transplant that will dramatically improve her day-to-day living. Physically? That's the catch. She has undergone so many blood transfusions over the years that the antibodies in her system likely will reject any foreign visitor like a healthy new kidney.

The good news: there is a surgeon at the University of Illinois Chicago, Dr. Enrico Benedetti, who is willing to perform Lana's transplant with the aid of a drug called Soliris. The drug, which will block the antibodies and should allow her body to accept the kidney, has been used successfully on highly sensitized transplant candidates in clinical trials. It's estimated that one out of every three dialysis patients are similarly sensitized to transplants and could benefit greatly from this drug.

The bad, really bad, disheartening news: It will cost approximately (deep breath here) $110,000 to administer the series of Soliris treatments Lana needs prior to her transplant, and Medicare won't cover the cost because it and the FDA have approved the drug only to treat rare blood and kidney diseases. Gack.

She has appealed to her congressman and other governmental officials – no help – and pleaded with the maker of Soliris, Alexion Pharmaceuticals, who says its hands are tied. They claim they can't give free patient support with their drug for uses other than those approved by the FDA. It's a kidney Catch-.22.

Now, this is one resourceful lady. It was Lana Schmidt who had the genius moment to reach out to the nursing program at her local college and solicit students to assist her with her home dialysis treatments, giving them hands-on experience while making her daily burden easier. But Lana has run out of bright ideas for this challenge.

Now she feels she has no other option than to raise the money herself, or give up any hope of a lifesaving transplant.

Lana says she needs to set up 501c(3) tax-exempt status to collect the funds, but even that process costs about $400 she doesn't have. (Being sick for a dozen years ain't cheap, folks.) If she can't find the money to file the paperwork herself, she's hoping that an existing nonprofit group – maybe one with pro-kidney leanings – might see fit to take on her short-term cause under its umbrella.

She has even developed a text-message marketing campaign she calls "Tag, You're It!" to help spread the word about organ donation in general and her plight in particular (I told you she was resourceful). She hopes it might catch viral fire in the same way The Ice Bucket Challenge became a worldwide phenomenon earlier this year for ALS.

What she needs now, Lana figures, is to attract the interest of someone like Illinois Secretary of State Jesse White, a longtime advocate and spokesman for organ donation, or an organization such as the National Kidney Foundation of Illinois or Gift of Hope to partner with her in the effort. Whaddaya think? Anybody out there know somebody who knows somebody who might get involved?

Look at it this way: If Lana could get 10,000 people to donate $11 each, she could reach her goal. It's not impossible, or insurmountable. Even raising the 400 bucks to file the 501c(3) would be a great help.

For more information about Lana, or to make a donation, visit her website at www.lanakidneytransplant.com. She's an amazing lady, and she can use our help.


And While We're Thinking About Others: When you hit your knees tonight, I'd like to ask you to ask God to bless two other good people as well.

One is my dear friend Dave, whom I've never met. He's the cousin of one of my former editors, he lives in Idaho and we are brothers through bad kidneys who "met" by this blog.

He's been on in-center dialysis many years, and last week the technicians told him they could not perform his regular treatment: his veins have built up so much scar tissue from frequent injections that they could not gain access.

If you want to terrify someone who needs dialysis three times a week in order to live, that could do it.

Ultimately, a doctor performed an angioplasty on two spots in his shoulder and ordered special balloons that he'll place into Dave's veins in an attempt to open them up. If that fails, they may have to insert a stint. Either way, it's scary business and something no dialysis patient should have to face on top of all his other challenges. Pray for him, please.

Lisa Goich Andreadis.

Also ask for healing for another wonderful (and very funny) friend, Lisa Goich Andreadis. Lisa, whom I got to know well when we were regulars on the same Detroit radio show some years back, is a former standup comedian who also knows well life's serious side: her next book, "14 Days – A Memoir," the poignant story of the last two weeks Lisa spent with her mother prior to her death, is due out next Christmas, 2015.

Some strange malady has been affecting Lisa for well over a month. She's been sick every day. And on her last frantic trip to the ER for assistance – well, let's just say she encountered a level of cruelty and degradation no sick person ever should have to face from a staff of self-proclaimed medical healers.

I won't go into details here – not my place, not my case – but if she ever writes about it I certainly will reprint it here. For now, please just pray she gets well very soon. The world needs a healthy Lisa.

Swinging a Gulbis Against Kidney Disease

I never learned to play golf. I think that's a shame now, because as my male friends and I grow grayer the golf course could become a common ground, a place where we all could wear incredibly gaudy clothing and boast about how virile and good looking we used to be.

Besides, they have those cool little motorized carts.

I tried to play a couple of times. Spent so much time slogging through the trees that I contracted poison ivy on both ankles. I felt like the leader of a rescue party for lost balls. I was the Bogeyman. The fairway was a rumor. And don't even talk to me about putting!

If I could play, though, this is definitely an event I'd throw my clubs in the trunk for. Especially since it's for such a great cause.

Next Monday, July 28, my friends at the National Kidney Foundation of Illinois (NKFI) are hosting the 10th annual edition of one of their most successful fundraisers, the Middle Market Open™Golf Tournament. It will be held at the Olympia Fields Country Club south of Chicago, home to the 2003 U.S. Open and future home of the 2015 U.S. Amateur Championship.

LPGA Tour Glamour Girl Natalie Gulbis (Getty Images)

Since the event began in 2005, the tournament has raised more than $3.5 million to benefit the NKFI's crusade for kidney disease prevention and awareness. As you've read here countless times, one out of every nine adults in America is living with some form of kidney disease – and most of them don't know it. The NKFI has been fighting the brave fight to correct that frightening statistic for a half century – in fact, this is the 50th anniversary of their official charter – and they are worthy of support.

Hoping to surpass the $4 million mark in total earnings with this summer's tournament, organizers are pulling out all the stops. Sure, there are trips for two to Pebble Beach and Las Vegas, including lessons at the Butch Harmon School of Golf, but lots of golf tournaments offer prizes.

Ah, but not every tournament offers a special guest like Natalie Gulbis. Or as we like to call her, "all the stops."

Gulbis, an LPGA veteran, is the consensus sex kitten of the women's tour. She was on the second season of Celebrity Apprentice, hosted a talk show on the Golf Channel, produced her own racy calendar and appeared in a Sports Illustrated swimsuit issue wearing nothing but body paint.

On second thought, maybe I'll be attending this tournament with or without clubs.

Proceeds raised from the Middle Market Open will go toward the NKFI's essential kidney disease prevention and education programs like the KidneyMobile®, which conducts free kidney screenings across the state of Illinois. Left untreated, kidney disease can lead to kidney failure and, eventually, to dialysis or a transplant in order to survive.

Every year, kidney disease kills over 90,000 people – more than breast and prostate cancer combined.

Katten Muchin Rosenman LLP and BMO Harris Bank, supporters of the tournament for many years, are the 2014 co-event sponsors.

There's still time to get involved. For more information about the Middle Market Open Golf Tournament, visit www.nkfi.org or call (312) 321-1500. 

FORE! 

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.

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!

One Is the Giddiest Number

Spent one full day this week under the sheltering shadow of the Gateway Arch, receiving my quarterly kidney checkup at my transplant center, Barnes-Jewish Hospital in St. Louis.

Now, I think I'm doing extremely well. All my vital signs appear normal (I take them myself every day), I'm in no pain to speak of (well, not around the transplant site, anyway), and my urine is generally clean and pure. (Sorry: TMI?) But this week's medical inspection confirmed my beliefs far beyond my wildest expectations.

The incredibly fetching LPN, Skye Smith, carefully reviewed all my significant test results and gave Karen and me three pieces of very good news. One, my blood work has been coming back so consistently within accepted ranges that I may now push back my blood tests from every Monday to every other week. My battered and beleaguered veins breathe a sigh of "Thank you."

Two, from now on my quarterly trek to St. Louis can become a semi-annual journey.  In fact, Skye suggested, if we prefer we can check in with my in-city kidney specialist, Dr. Abdel Moneim Attia, every six months and only make the drive to Missouri once a year! All the hotels and restaurants in St. Louis are breathing a groan of, "Awww, we'll miss all that money."

The third item, however, was most astonishing to me. My level of creatinine – possibly the body's best barometer of kidney function, a range that should fall between 0.9-1.3 for a healthy man of my age, a number that soared past 4.0 at the height of my kidney failure – is now standing at 1.0! Unbelievable! Hallelujah!

With God, my friends and neighbors, all things are possible.

My Cheyenne, which Detroit News columnist Neal Rubin referred to recently as "the world's most famous aftermarket kidney," is kicking some serious booty. I belong to the local support group chapter of the National Kidney Foundation of Illinois, and at most of our monthly meetings the members, almost all of whom are dialysis patients or transplant recipients, discuss their creatinine levels like they were comparing golf scores.

Can't wait till our next meeting. I don't know their numbers, but I'm betting my 1.0 will make me the medalist for this round.

Walkin' It Like I Talk It

As a lifelong Detroit Lions fan (yes, I knew true suffering long before contracting kidney disease) I never dreamed I'd ever write these words, but I can't wait to set foot on the green grass of Chicago's Soldier Field this Sunday.

EXTREMELY busy week for my alter ego as Kid Kidney. First, on Thursday, I'll be up north in Deerfield, Ill., at the headquarters of the healthcare giant that manufactured my dialysis supplies. (I dare not ever whisper their name on these pages again; I won't bore you with the details except to say, there are lawyers circling in cyberspace.)

I'm delighted to lend my in-person support and say a few syllables at the kickoff event for the company's African American Business Resource Group (BRG), a new unit tasked with increasing awareness and education about diseases that affect the black community disproportionately. It's a commendable effort, and much needed.

On Friday I'll be in Columbus, Ohio, attending my first meeting as a member of the Patient Leadership Committee for the Renal Network, Inc., a position I was proud to accept after that organization honored me with its Robert Felter Memorial Award last year.

My first day with any new group scares up memories of my first day in high school, college, or any new job. Please, Lord, don't let me say or do anything stupid.

Oh, but Sunday! Sunday, that should be my funday. That's the morning I will join more than 1,500 fellow kidney disease conquerors and the people who love them on the Soldier Field Great Lawn to participate in the 13th Annual Gift of Life Walk, Run and Roll along the shores of Lake Michigan.

It's especially poignant for me because little more than three years ago, due to the gout in both feet brought on by my kidney disease, I could barely walk or stand without assistance. Sunday, I'm looking forward to tackling the whole Gift of Life route with long, purposeful strides. Hallelujah!

The National Kidney Foundation of Illinois (NKFI), which stages the free event, has asked me to say a few words before the walkers, runners and rollers hit the streets. I'm excited to do so, although I know I'm almost certain to be upstaged: The speakers also will include an adorable 4-year-old named Izabelle Cary, who was born with only one kidney and has had to undergo dialysis most of her life.

I learned it from my years in the newspaper business: put a cute kid or a fuzzy puppy on the front page, and that's all anybody's going to talk about!

Hey, I'm not afraid of a little (no pun intended) competition! I'm showing up at 9 a.m. regardless! If you're in the Chicagoland area Sunday, you should join us. NKFI is a marvelous organization, and all funds raised will go to programs designed to prevent kidney disease and make life better for the individuals and families already affected by it.

You can pre-register or help raise funds at the website, www.firstgiving.com/nkfi, or contact the beautiful Devon Albert, NKFI's special events coordinator, for more information at (312) 321-1500.

Hope to see you there. Kid Kidney rides again! Hi-Yo, Cheyenne! Awaaay!

On the Kidney Kampaign

Just finished a big week on the kidney beat. On Tuesday I was in Waukegan, Ill., home of Baxter Healthcare, where I sit on the company's Patient Advisory Committee team (PACt), to attend one of our quarterly meetings. Then, as luck and good scheduling would have it, on Thursday I stopped in Chicago while on my way home to Champaign to make a presentation to the board of directors for the National Kidney Foundation of Illinois (NKFI).

Even more good timing: Karen, my angel of mercy, happened to have business in Chicago at the same time. So we used the once-grand, now-scruffy Blackstone Hotel in the Loop as our home base for the week. It even allowed Karen the opportunity to join me for the NKFI appearance.

At the Baxter confab, representatives from the company's various renal divisions come to our committee (numbering about 20 on this occasion) to get our reaction to proposed new products, changes to existing products, and to pick our brains about how we use Baxter's goods in the real world. These are scientists, corporate doctors and manufacturers who almost never come in contact with an actual breathing patient.

I've been sworn to secrecy about revealing details from these sessions under threat of slow, lingering death. The Baxter PR honchos get quite skittish knowing there's a former journalist in the room who has a blog read by people concerned with kidney matters. But I think I've been pretty good about keeping their confidences so far.

So far.

In this get-together we met Dr. Cory Sise, a nephrologist and leader on Baxter's medical team, who had her worst fear confirmed by the PACt people: Those product information sheets she and her people spend hours revising and rewording so they're completely accurate and useful?

Nobody reads them.

For me, the keenest insights from these meetings come not from the Baxter executives but from my fellow patients. On this trip, I learned that some people, in order to warm their bags of manual dialysis solution before inserting the fluid into their abdomens, actually stick the bags in the microwave! Yow! I guess if it starts boiling, you should take it out, eh?

The recommended method is to lay the bags on a heating pad so that they warm slowly and thoroughly. Problem is, if you forget and leave them on too long, it can have the same effect as nuking them. Imagine molten lava roaring through a catheter and filling your innards. Burn, baby, burn.

Hearing the other patients' startling admissions prompted me to confess my own preferred means of bag warming: hot water. I go to the bathroom, fill the sink and submerge the bag for three minutes or so. Slow, even warmth. I've learned over the years that the dialysis solution doesn't need to be piping hot; it just needs to be warmer than I am. Inserting liquid inside you that's too cold can be just as painful as solution that's scorching: Yow!

I was afraid to tell any health care professional about the hot water before, for fear they wouldn't approve. These meetings can be so liberating!

The NKFI board of directors retreat (no campfire songs or s'mores, much to my chagrin) was staged in the magnificent Merchandise Mart, and I was invited to give my first-person saga of living with chronic kidney disease and dialysis. Many thanks to Kate O'Connor, CEO of the Foundation, for extending the invitation, and to communications director Anne Black for her gracious assistance on site.

This is a song-and-dance I've performed many times before, as you know, and that might have been the problem. I was not as good as I should have been with my presentation. I'm my own worst critic, of course, but I felt I've been much better in past appearances. However, I learned two important things from the experience.

One, even though it's my own story and I've told it countless times, there is no substitute for rehearsal. ("Excuse me, sir, how do I get to Carnegie Hall from here?" the tourist asked. "Practice, practice, practice," the native replied.) Because I was pulled out of the Baxter PACt meeting briefly Tuesday to share my dialysis "testimony" with new sales reps, I thought that single run-through would be sufficient. It wasn't. I didn't have a clear Point A-to-Point B monologue, and I don't think I articulated it well.

I was delighted that the first followup question in the Q&A portion of my presentation went to Karen. But I think that speaks volumes as to how effective I was that day.

I think I also may have had an internal distraction. The gentleman who preceded me at the NKFI retreat, Baxter renal economic consultant Joe Connor, gave a very long and complex fiscal analysis filled with PowerPoint charts and graphs. It elicited numerous questions from the board members, and it was impossible to judge how long his Q&A session might last.

That was a dilemma, because I had to go to the bathroom! And I was certain that the moment I slipped out to find one, Connor would end his remarks and I would be MIA. So I stayed in my seat, my knees locked tight. I have no doubt my bladder predicament affected my concentration.

So that's the second thing I learned on this journey: When you're getting ready to speak in public and your nerves are running high, go potty before you really need to!

Yow!




 

Brace(let) Yourself

Well, I received my shiny new medical ID bracelet in the mail last week, and it's a beaut. Sweet.

It occurred to me that if I was going to be spouting off about kidneys all the time like this, it might be a good idea to become semi-legit. So I sent in an application and donation to the National Kidney Foundation of Illinois, and in return the foundation sent me a spiffy silver medic alert bracelet with a red hexagon in the center and that snake wrapped around a stick, so in case I get bonked on the head or become otherwise unable to communicate everybody around me will know I'm not what you'd call 100 percent healthy.

On the back of the bracelet there's room for five tiny lines of engraved text. I consulted with my AWWOE (Angel Who Walks On Earth), DaVita dialysis nurse Diane King, to determine what those lines should say.

We agreed upon my name (although I probably could have figured that out on my own);

 Jim McFarlin 

my treatment;

Peritoneal Dialysis

the name of my nephrologist (though his full name, Abdel-Moneim Attia, is too long to fit on one line so we decided to shorten it to            

Dr. Abdel Attia     

I hope they can find him in a pinch);

his phone number, unnecessary here;          

217-DIA-LSIS

and my only known allergy.                             

Penicillin 

    

I now have four bracelets on my right wrist. I'm starting to feel like a Jamaican. In addition to the new silver lifesaver, I have the brown beaded bracelet with the butterfly in the center that our 10-year-old, Madison, made for me early in our relationship. I can't imagine taking that off anytime soon; maybe when she gets married. And yes, real men can wear butterflies.

Then there's the bright blue-and-green rubber bracelet I wear from AFSP, the American Foundation for Suicide Prevention (http://www.afsp.org). It's a cause I support and a bracelet I wear on behalf of Jake Kaidan, a beautiful and engaging teen who took his own life four years ago, devastating his mother and my dear friend Lisa Johnson and her husband, Frank. I don't think there's anything that affects me more deeply or intensely than teen suicide. What an incredibly tragic waste.

And there's the simple green plastic strand I wear because Madison thought it matched the color of the AFSP band. I use it to remind me to stay green (I'm a committed – some might say fanatical – recycler) and to make more green stuff any way I can. Wouldn't it be funny if emergency medical people couldn't find the medic alert bracelet amid all the other bangles? 

Hey, wait! That wouldn't be funny at all!