Bright Lights, Big Kidney

Ladies and germs, little Cheyenne and I have officially made the Big Time.

About a month ago I received an out-of-the-blue email from the National Kidney Foundation – not just a state chapter, if you please, but the honest-to-renal, based-in-New-York, National Kidney Foundation headquarters. Folks there had read my piece in the Huffington Post, which led them to this dear ol' JK blog, which led them to invite me to contribute an article to their "Staying Healthy" blog.

(Imagine face filled with warm glow of pride and humility here.)

As it so happened, I had just returned from the annual American Association of Kidney Patients (AAKP) convention in Atlanta. And while I hadn't gotten around to writing about the event for Just Kidneying (what a sloth I am), I came home from Hot'lanta with at least one moment worth sharing.

While the Foundation wouldn't let me mention the AAKP by name or initials (professional rivalry, I'm betting), they would let me share my observations. You can read them right here, on the NKF "Staying Healthy" blog site.

Needless to say, I am so honored to be asked to write on a worldwide forum to help fellow kidney patients. Deep thanks to Ellie Schlam and all the fine staffers at the National Kidney Foundation.

In other news, the NKF is launching a new quarterly lifestyle magazine targeted to people on dialysis. The free publication, entitled "Kidney Living," will be distributed  beginning in November. You can sign up online at www.kidney.org/kidneyliving to receive it.

And guess which freelance writer will be stepping up and waving his hand furiously to write for this new magazine? 

Once again, the concept of kidney failure as potential revenue stream emerges. Life is so weird.

Missed Her, My Sister

This is how God works: Of all the copies of HOUR Detroit magazine Jacqui Thomas could have picked up that day to peruse – and they usually stack pretty high in beauty salons and doctor's waiting rooms, which is where I'm convinced most Detroiters actually read the thing – she happened to grab the May 2012 edition.

She really didn't want it. "Is this all you have?" she asked her stylist before going under the dryer. "Yeah, that's it," the hairdresser apologized.

She flipped casually through the pages until she stumbled upon a story titled "Dramatic Journey," the first-person account of my kidney transplant, accompanied by a full-page shot of my big mugging grin. She read it. Jacqui was delighted, then relieved, then, slowly, enraged. She leaped on Facebook as soon as she could find a keyboard, determined to track me down and get some questions answered.

You see, Jacqui Thomas is my biological sister.

And we hadn't spoken in nearly 30 years.

A little backstory might be needed here. (Ya think?) I was adopted by a wonderful older couple in Spring Lake, Mich., virtually when I was still in the womb. My equally wonderful mother, Josephine, lived in nearby Muskegon. She already had two children, was trying to scrape by as a single mother, and was pregnant with me.

The absolute last thing she needed was one more mouth to fill. The McFarlins, H.G. ("Mac") and Caribell, agreed to make me their son almost sight unseen.

They were as wise as they were big-hearted. To make sure I never anguished over the question "Where did I come from?" and because we lived so close, my parents made certain I knew about my birth family as soon as I could comprehend the dynamic. We often shared Thanksgivings and Christmases together. Every summer, Jacqui would spend part of her vacation at my house or I would visit hers. We grew up together, albeit by long distance.

To further the irony, both Jacqui and I eventually settled in Detroit. We lived no more than 10 miles apart. I was writing for one of the city's major daily newspapers, The Detroit News. I won't go into detail about the factors that caused us to be estranged, except to say that working for a big-city paper can give the impression that one has more influence, income or connections than they actually do. Whatever the reasons, the most important takeaway here is that I was wrong.

Allow me to repeat that: I WAS WRONG. Nothing, or no one, should come between you and your blood. Life's too short. I was petty, I was hurtful, I clung to my ill feelings like a rescue inhaler. How foolish. Please, if you are holding any animosity toward a relative, stop it. Just quit.

At any rate, this incredible, wild kidney ride I've been on since 2008 has produced yet another positive outcome. Jacqui dispatched an impassioned private message to my Facebook account, expressing pain and indignation that I didn't even bother to ask if she would donate a kidney to me. "I never thought you disliked me or the family so much you would never contact us to see if we were a match," she wrote. "Come on! Do you really hate us that much?"

Actually, the thought did cross my mind numerous times while I was on the transplant waiting list. But I kept imagining how that conversation would go:

"Hello?"

"Jacqui? Hey, sis, it's me, Jimmy!"

"Jimmy? I haven't heard from you in years! How are you?"

"Funny you should ask. I know we haven't spoken since the '80s, sis, but do you happen to have any spare organs lying around?"

Pride goeth before a transplant. But that blessed occurrence, the fateful flipping of a city magazine, was the catalyst that inspired a reunion.

My sister, Jacqui Thomas, and me. I'm on the left.

We met one bright Saturday morning in Detroit at what locals call "Anita Baker's restaurant," the IHOP near downtown. It had been so long that I wondered if I'd recognize her, and apparently Jacqui had the same concern: my friend John Mason, the media personality and PA voice of the Detroit Pistons, was sitting in a booth by the door. Jacqui took a long, hard stare into his face before spotting me deeper in the restaurant.

Our conversation was fast, light and surprisingly warm. I think both of us subconsciously had decided to put the past behind us and begin afresh. What a great day!

Thanks to my crappy kidneys, I have a sister again. And a brother, Lionel, too, if I can manage to journey to West Michigan and reconnect with him. What's more, I discovered that through Jacqui alone I have two nieces and two nephews who have 17 kids between them!

If it's God's will that I ever need another transplant....

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!

Maybe the Greatest Thing Ever Invented

My blood tests this morning to monitor my kidney function went like every other blood sample sucked out of me every week for the past six months – that is, until the supervising nurse spied the green bracelet with the medical symbol on my right wrist. "What is that?" she asked.

What, indeed. I have been meaning to tell you about my Care Medical History Bracelet for the longest time, but it has grown so comfortable on my body that I'd all but forgotten about it until the nurse roused my memory.

Shortly after my kidney transplant last November, my magnificent wife, Karen, realizing that my list of medical advisories, medications and other vital information suddenly increased a dozenfold, went online to http://medicalhistorybracelet.com/, found this brilliantly simple little band and gave it to me as a gift.

The Care device is the next generation, 21st century edition of the medic alert bracelet. It fastens securely around your wrist, but when you pull it apart – Voila! A computer flash drive is contained within.

Plug it into your home computer and, with the aid of some pre-loaded software, you can input every bit of essential information about yourself and your medical condition – medicines, dosages, blood type, primary physicians and specialists, emergency contacts. There's even a place to download a photo to prove it really is you wearing your bracelet.

So if you are involved in a major calamity or trip over a chair in your office and knock yourself loopy, everything any emergency medical technician would need to know about your health is available to them via their nearest computer without you having to mumble a word. And the information is easily updated, making Care a huge upgrade over the traditional engraved alert bracelet.

It only costs about $30, and takes no more than an hour or so to fill in the necessary blanks. (If you've been careful to compile all your data in advance, that is.) In a perfect world, I'm thinking, every man, woman and child would have one of these bad boys strapped on tight. Next step: Computer chips implanted in your ear, just like your Cockapoo!

The Care website says the bracelet is waterproof, but I take it off when I bathe anyway. Can't be too careful where metal and water are concerned. Two drawbacks, though. Far as I can tell, the flash drive software is readable on both Macs and PCs, but you can only input data on a PC. So if you're an Apple addict (like me), you'll probably have to borrow a PC from somebody to create your profile.

Second, and more critical, as my supervising nurse noted today, YOU CANNOT LOSE THIS THING. More than wearing your heart on your sleeve, with Care you literally are wearing your life on your wrist. And since there's apparently no way to lock the flash drive's info (nor would you really want to), the Care Medical History Bracelet could be an identity thief's wet dream.

But the positives far outweigh the negatives, in my view. You just need to take extreme care with Care. And like the infomercials say, "Makes a great gift."

Facebook Goes Organ-ic

Oh, what an historic start to May 2012 this has been!

Not because it was my first sober Cinco de Mayo in memory. It's because last week, through the massive social media miracle of Facebook, Mark Zuckerberg and his dorky disciples in Silicon Valley made the world a better place by making it easier for millions of people to register as organ donors.

Can I get a big, resounding "YAY!" on this?

The news broke wide on May Day, prompting one of those "D-uh!" moments for most of us. Of course! How obvious! How did we not think of this ourselves? 

Facebook is the driving Internet power connecting countless masses of us on a daily (some would say a moment-by-moment) basis. Every day more than 18 people still die waiting for a matching donor organ that is never located. (Which, by my precise calculations, is exactly 18 people too many.) Maybe one reason more organs aren't available is that more people don't realize how dire the crisis is or how to register as a donor. 

Pairing the need with a vast network of potential givers. It's a match made in cyberspace heaven. 

Even though I registered as a donor years ago in my native Michigan, long before I ever dreamed I would actually need one of the little buggers myself, I registered again through Facebook for my current residence in Illinois primarily to see how simple the process was. And let me tell you, it is easy-peasy-lemon-squeezy.

Just go to your Facebook Timeline – I know you still don't like it but it's here to stay, so get over it – and under your disarmingly cute profile picture click on the words, "Life Event." That will take you to a drop-down menu of five items; slide down to the one reading "Health & Wellness," scroll over those words and the FIRST ITEM you should see at the top of the list to your right will read "Organ Donor."

Click on "Organ Donor," take about 33 seconds to register your intention to donate in your state of residence through Donate Life America, and your organs are officially up for grabs. It doesn't hurt. In fact, it may make you feel much better. 

You can proudly boast on your Facebook Timeline that you now are a registered organ donor (I did), or keep the information just between you and Donate Life America. The choice is yours.

Did Facebook do this to make itself look a little more human and humanitarian in advance of its humungous IPO this month? Did Zuckerberg's longtime girlfriend Priscilla Chan, a med student, apply gentle persuasion to get him to consider such a compassionate act?

You know what? To the next patient withering from organ failure and nearly out of hope who hears his or her doctor say, "We've found a matching donor for you" because of Facebook's remarkable reach, I don't think the motive will matter one teeny bit.

Learning to Share

Getting the news that you have a serious, potentially fatal illness – like Stage IV kidney failure, for instance – can be a senses-shattering event. I remember when I was hearing about my Chronic Kidney Disease (CKD) diagnosis for the first time, there was a moment where the doctor's voice morphed into the teacher from the Charlie Brown cartoons: "Bwah-BWAH-bwah-BWAH-bwah-BWAH."

The initial reaction for most of us, I believe, is to want to internalize and hold all the scary details inside. Still, once you come to grips with the reality of your situation, you've got to tell somebody about it. For comfort, for advice, for the illusion of control – if nothing else, so that someone will know what's happening to you and where to look should you drop off the grid for a few days.

Despite what you read in this blog, I find it hard to talk about myself and my illness. Maybe you would, too. Recently I was asked by the "Live Now: Rethink Kidney Disease" website, for which I am proud to serve as contributing editor, to write a piece offering suggestions on how to share the facts about your CKD with others. I'm guessing some of the advice could translate to any other disease, or simply to bad news in general.

I would reprint the piece here in its entirety, but then you probably wouldn't visit the "Live Now" site and they would stop paying me. Hey, Mama didn't raise no fool!

So here is the link to the article, and I hope you find something of value in it. I even interviewed other people for their insights, so it's not only me babbling. The piece is called, appropriately, "Telling Others About Your Chronic Kidney Disease".