Wednesday, November 21, 2012

Happy Birthday, Cheyenne! (and Me)

Surely some scalawag must be playing tricks with my calendar. It cannot possibly be one entire year since I was flat on my back in a hospital room at Barnes-Jewish Hospital in St. Louis, feeling like I had been sliced open from hip to hip (because I had) and giving thanks every moment for the numbing release of a morphine drip.

"If this is what a kidney transplant feels like," I remember thinking, "maybe dialysis wasn't so bad after all."

That, of course, was the drugs woofing. Cheyenne, the little kidney that can, has officially been inside me and functioning flawlessly for 12 months now, and we couldn't be happier together.

What's the symbol for a one-year anniversary? Paper? That's so passé. Let me write words on this computer screen instead to celebrate this mini-milestone and praise the miracles of modern medicine. 

Happy Birthday, Cheyenne! And by extension, because a transplant literally is the gift of a second chance at life, Happy, Happy 1st Birthday to me as well.

The months of wound care and recuperation, the constant doctor's visits, the adjustment to taking and coordinating an avalanche of new prescription drugs – it all feels like a hazy memory now, as if I was observing somebody else's life from afar. Everything has settled into a natural, comfortable daily routine (although I still can't remember how long to wait after taking my anti-rejection pills to eat; I really like eating).

The moral of Year One for me is that it always gets better. It may not become perfect, or even great – perfect or great for me would be an unscarred body and never having had Stage IV kidney failure in the first place – but it, whatever "it" is (life, relationships, job, finances) never remains the same. Sure, it may get worse for a time: the realization that my kidneys had shut down to the point I needed dialysis was one of the lowest moments of my life. But if you "wait on time," as my mother used to say, and trust your faith in God, your circumstances eventually will improve. Honest.

As you may know, I have been a strong supporter and advocate of the American Foundation for Suicide Prevention for many years, ever since the teenage son of dear friends took his own life inside their home. Nothing breaks my heart and shatters my soul more deeply than youth suicide: the kid who decides to end it all because Chloe broke up with him, not realizing a dozen more Chloes may come along before he becomes a man. If I could, I would reach out to every person whose psyche is in that much chaos, give him or her a big hug and just whisper, "Hang on. Please. It always gets better." I believe that to my core.

One more huge chunk of news: Because an experience like a kidney transplant gives one a startlingly clear vision of life and time and how precious both are, my adorable wife, Karen, and I have decided to mark Cheyenne's birthday by launching our own home-based business. We're blessed to both have jobs we enjoy, but money provides choices and ultimately we want the freedom to spend more time together and rejoice in each other's lives.

Besides, this is a company we're both incredibly excited about and have leapt into with all four feet. Rodan + Fields, the extremely smart Stanford dermatologists who created the phenomenally successful Proactiv solution, have developed a prestige skincare line to benefit women and men of every age and skin condition. And because the earliest advice I can remember my mother giving me was, "Moisturize," skin care has been a priority most of my life. And these are some of the best products I have found.

I hope you like them, too. Maybe you'll even join us on this incredible business journey. Tell you what: Check it all out at Karen's R+F Consultant Page. Take the "PerSKINality" test and see what condition your condition is in.

Then, let's talk.

Friday, November 16, 2012

Fat Man and Little Cheyenne

Cheyenne was feeling a bit grouchy not long ago. Nothing severe or particularly disabling, you understand – a twinge here, a dull ache there – but any time your live-in kidney shows the slightest signs of discontent, you tend to sit up and take notice.

She hasn't been inside me for a whole year yet! It's not even time to renew her lease!

Having someone else's organ sewn into your body, it seems to me, is like entertaining a long-term house guest: You want her to be happy and content in her surroundings, and if she is you almost tend to forget she's there. She becomes part of the family. But if you sense she's grumpy or suddenly not enjoying her stay, you rush to address her concerns. And so it was that I called to request an ASAP appointment with my very favorite nephrologist, the caring, grinning Egyptian, Dr. Attia.

A week or so later I was sitting in the lobby of the Carle Hospital wing in downtown Champaign where he practices. After having my weight and other vitals confirmed, I waited mere moments before Attia burst into the examination suite, an Omar Sharif lookalike, his perpetual smile beaming. "Jimmy, how are we doing?" he asked.

We sat side by side in front of the room's computer and reviewed my key statistics: blood pressure, protein, creatinine level, cholesterol. I don't ever remember hearing a physician using the word "perfect" to describe my body or health before, but Attia's glowing praise sent my heart into a happy dance. I take the care and comfort of Cheyenne very seriously, and I was delighted to see that my efforts were paying dividends.

"But Doc," I countered, "if all that's true, why do I keep getting these occasional twitches around the transplant site, and the feeling like something is pressing on the kidney?"

At that point he explained something I'd never thought about before, but that makes complete sense: Surgeons cannot reconnect nerve endings when they transplant an organ. It would be impossible to do so, even if they could keep you in the operating room for a month or two. So Cheyenne literally feels no pain.

Attia then looked at me, flashed a knowing smile and returned my attention to the computer screen. He pointed to a line of numbers on my chart that he had neglected to mention previously.

It was labeled, "Weight."

He said, "From the time of your transplant last November, you have gained 16 pounds! What you're feeling may be your increased weight pushing against the kidney."

In other words (he didn't actually say this, but he might as well have), "If you weren't so FAT, Mr. Piggy-Wiggy, maybe you wouldn't be feeling anything at all! Your poor little kidney needs room to operate, Chubbins! Just because a transplant allows you to greatly expand your food choices doesn't mean you have to eat everything in sight!"


As it so happens, my amazing and admirable bride, Karen, recently embarked on a medically-supervised weight loss program called Ideal Protein. I don't think she would mind my telling you that she has lost more than 30 pounds in less than two months! I am so very proud of her.

I'm not saying I plan to lose weight by osmosis, just by being in her presence. But we have been eating much smaller, healthier portions around the house lately, and if I can avoid sneaking off to Steak 'n Shake when she's at work I may drop some poundage in spite of myself.

Hang on, Cheyenne! The cavalry's on the way! Breathe, girl, breathe!

Monday, November 5, 2012

Standing on the Shoulders of Heroes

I was in Indianapolis last week at the headquarters of The Renal Network, Inc., where I am proud to sit on the organization's Patient Leadership Committee for Network 10, representing the state of Illinois.

I like this group a lot because, while this was just my second meeting, many of the members have been on the committee for years and have developed an easy affability with each other. They laugh and poke fun, but when we get down to business their familiarity allows them to speak candidly and tackle issues with lively exchanges of viewpoints.

We discussed a broad range of topics. (The last time I sat on a patient advisory committee and wrote anything about its meetings in Just Kidneying I was kicked off the committee, so let me just say the discussions were fruitful.) But the most fascinating highlight of the day for me was a newspaper brought in by a fellow member from Ohio.

The following article appeared in the Dayton Daily News on Nov. 1. I'm so happy someone thought it worthy to acknowledge Clark Beck's milestone. The lead is buried a bit because the rest of his life is so interesting, but the headline suggests the amazing fact: At 83, Beck may be the oldest living recipient of a single kidney transplant.

He's had his kidney for 40 years! What an inspiration! And when you consider that kidney transplants weren't even attempted in the U.S. until the 1950s, and how crude and perilous those operations were compared to the smooth, almost-commonplace procedures of today – well, Clark Beck is just a walking, talking miracle. Not to mention a pioneer, on many levels.

I'm doing what I'm doing today because of people like him. I hope to meet my new hero someday soon and shake his hand. But for now, let me shut up and allow you to meet him.

By Debbie Juniewicz
Contributing Writer

Clark Beck didn’t set out to be a pioneer – just a student.

But after Purdue University told the young black man that “your people cannot be engineers,” he continued on. With transcript in hand, he tried the University of Cincinnati the next day.

“The dean looked at my transcript and told me, ‘You’re going to catch hell from both sides of the desk,’” Beck said. “There was only one other black student in the engineering school at the time.”

The Harrison Township (Ohio) man was ready for the challenge and enrolled in the university’s College of Engineering and Applied Science in 1951. He earned a bachelor’s degree in engineering and later a master’s degree in aerospace engineering.

His challenges weren’t limited to getting an education. He started to develop serious health problems in the 1970s.

“I had a rough time when I was in school. I didn’t have enough money to eat well or take care of myself,” he said. “I got sick, and the strep throat settled in my kidneys. I didn’t know at the time the damage it did.”

When doctors told him he needed a transplant, Beck’s first option was to see if any of his three siblings were a match. They weren’t, and Beck was actually happy because he didn’t want to take one of their kidneys, he said.

Beck, who was working as an engineer at Wright-Patterson Air Force Base and teaching at Central State University, continued dialysis and waited for a kidney to become available. He almost missed his chance, however, on a late fall afternoon almost a year after he discovered he needed a transplant.

Beck went out early on a Saturday morning with his surveying class and missed the phone call alerting him that a kidney had been recovered from a deceased donor that morning. He didn’t get the message until Saturday night.

“The doctor told me that the kidney had a 50 percent chance of lasting six months,” he said.

Beck’s doctor might have underestimated a bit. The 83-year-old celebrated the 40th anniversary of his transplant Monday. It is a significant milestone as Beck is considered to be among the longest living survivors in the world with a functioning kidney, according to the United Network for Organ Sharing.

But with Beck, it’s about more than quantity – it’s the quality of life that matters.

“Any chance he has to make a difference, he takes it,” said Cathi Arends of Life Connection Ohio. “Whether it’s mentoring a young person or giving someone who needs a transplant hope, he is there for them. One of the things he frequently says is that he wanted to make the most of his second chance, and he has done just that.”

Beck founded the Wright STEPP program at Wright State University in 1987. The Science, Technology and Engineering Preparatory Program was designed to enhance the development and education of youth underrepresented in the fields of engineering, math and science.

Beyond the classroom, Beck had a 31-year career at Wright-Patterson and was the first black president of the Dayton Engineers Club. He is a Donate Life Ambassador for Life Connection of Ohio and serves on several community boards.

“He is our voice in the community, and we are so glad to have him working with us,” Arends said.

And Beck is happy to have the opportunity – just like he was when he was given the opportunity by the University of Cincinnati more than six decades ago.

“I was definitely a pioneer in many ways, and I’m proud of that,” he said.

Reprinted by permission. Contact this contributing writer at

Wednesday, October 3, 2012

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 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.

Wednesday, August 29, 2012

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:


"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....

Saturday, July 28, 2012

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.

Monday, June 18, 2012

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,, 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!

Monday, June 4, 2012

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, 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."

Thursday, May 10, 2012

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.

Sunday, April 1, 2012

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".

Friday, March 2, 2012

Now It's REALLY an Award-Winning Blog

The FedEx driver scared the boogaloo out of me the other morning, banging on our front door to drop off a package. Now, I'm accustomed to receiving overnight deliveries – usually DVDs to review in my capacity as a television critic – but since I was deep in thought and less than three feet from the door at the moment, I had to swallow hard to get my heart out of my throat and back to its normal location.

Ah, but this particular package was no skinny disk or press kit. It was way too heavy, and felt kinda wooden. To my great surprise, it was a plaque!

It's not every day you receive an award via FedEx (well, maybe you do, but I live a fairly humdrum existence), so I ripped the packaging apart like a 6-year-old on Christmas morning. It was my 2011 Robert Felter Memorial Award from the Renal Network, Inc., which I proudly announced last June in a post titled "This Award-Winning Blog."

The inscription reads the award "Is Proudly Presented to JIM McFARLIN (hey, that's the way it looks!) For Working on Behalf of Kidney Patients."

Aw, shucks.

As I've noted before, I'm certain the award wasn't bestowed solely because of this "Just Kidneying" blog. I've made numerous speaking engagements the past few years on behalf of Peritoneal Dialysis, kidney disease prevention and organ donation, including an appearance before the Michigan Legislature, and visited dialysis clinics to talk to patients one-on-one and lend encouragement. I'm contributing editor for the "Live Now: Rethink Kidney Disease" website, and I've written articles for HOUR Detroit magazine and several other publications concerning Chronic Kidney Disease (CKD).

But virtually none of those things would have happened had it not been for "Just Kidneying," which brought my CKD and my feelings about it to the attention of decision makers, dialysis clinic personnel and convention planners in many places. So, just like at the Oscars, I accept this award on behalf of my blog. I'm extremely honored to receive it.

I didn't expect it to arrive in a plain white FedEx envelope, however. Initially I was told the Robert Felter (I think I'll call it "The Bobby") would be presented in a semi-formal dinner ceremony, most likely somewhere near the Renal Network's regional headquarters in Indianapolis. But the congratulatory letter that accompanied the plaque regretfully informed me "that the organization with whom we were collaborating on the patient meeting was not able to secure the necessary funding. Thus, there was not a Network-sponsored patient meeting."

That's the kind of award ceremony I would get: a package dropped at my doorstep.

Dang. I was actually looking forward to that rubber chicken.

Saturday, February 4, 2012

Liquid Courage, or The Rinse Cycle

Last month we celebrated the life and legacy of that immortal American and civil rights icon Dr. Martin Luther King Jr. by purchasing a gleaming white new Speed Queen washer and dryer at a local appliance store in Champaign. Gotta love those MLK Day sales!

Because I have taken on the role of househusband during my two years of dialysis treatments and subsequent kidney transplant, Karen's excitement over our new acquisition made me feel a little like a character out of The Help: "Look, Jimmy, we bought you a brand-new washer and dryer so you can do more loads of wash for us than ev-ah!"

Oh, joy.

Truth to tell, I love doing laundry. There's a certain zen tranquility for me in making dirty things clean again and folding them with the precision of origami. What I didn't love even a tiny bit was schlepping pounds of clothes to the laundromat every couple of weeks, hoarding quarters and surrounded by strange smelly people.

But the laundromat was a necessity, because (and here's the tie-in to my kidneys, in case you were wondering) up until the transplant, we had to use the utility room in our apartment to hold all the cases of my dialysis solution.

In the way that life works, two days before we received "the call" that a donor kidney was available for me, the company that made my dialysis supplies dropped off its monthly shipment of 32 boxes of Peritoneal Dialysis fluid, about 2x2 feet each, with two five-liter bags of liquid in each box. I had used exactly one case before the transplant team called.

When we returned from Barnes-Jewish Hospital in St. Louis with my gleaming new kidney, we called the dialysis company and explained the situation.

"I'm sorry, sir, but we can't take the cases back."

"But they're unopened. Maybe someone else could use them."

"I'm sorry, but there's the possibility of contamination."

"Contamination? The boxes have the original factory tape on them! The bags of fluid are sealed in a second plastic bag to keep them secure! How on earth could they get contaminated?"

I'm sorry, sir, but that's our policy."

Somebody please, tell me again why the cost of health care in America is so high?

We called my dialysis nurses at DaVita Champaign. Same story. I never fashioned myself as the sadistic poisoner of Peritoneal Dialysis bags, but I must look that way to a sizable group of people. We're still looking for takers for the drainage bags, extension tubes and other paraphernalia that accompany the PD process. No questions asked. Just come get 'em! We'll even deliver!

So, discouraged by having no other option, Karen and I staged our own Seven Percent Solution at our kitchen sink: the Great Dialysis Juice Dump. Each of us armed with a tiny Olfa Touch-Knife (that I extolled in a December 2010 blog titled "Flashes From the Frontline"), we attacked the cases – slicing open the cardboard boxes, flattening them, cutting open the hard plastic coverings and piercing each five-liter bag, letting the dialysis liquid goosh into the sink. What emotional release!

It was a true team effort; even with both of us working shoulder-to-shoulder and focused on the task, the process took almost two hours to complete.

We ended up with a stack of cardboard boxes nearly three feet high and an overflowing pile of plastic bags. Being the dedicated recycler I am, I personally carried every box and bag outside to the nearest appropriate bin.

Karen applauded my effort.

We were both tremendously saddened to destroy so much lifesaving fluid in such a wasteful manner. However, in a very real way, our new washer and dryer represent far more than timesaving appliances that allow Jimmy to do more loads more often. They stand as constant reminders that the Peritoneal Dialysis that required their space and dominated so much of our daily lives is no more. Hallelujah!

All because of a new appliance of mine that's washing my blood every second. Oh, what a lucky man am I.

Monday, January 2, 2012

Direct to Video

I'm certain that some of you have seen this, but I'm just as sure that many of you have not, and it really should be added to the JK – Just Kidneying archives for posterity's sake if nothing else.

On the morning of Friday, Nov. 18, 2011 – a date that will live in happy history for me as the date of my kidney transplant – I was lying on a gurney in a pre-op area of Barnes-Jewish Hospital in St. Louis, flying high on that happy juice they pump into you to "relax" you prior to surgery, when my artificial bliss was interrupted by a complete stranger. 

Unbeknownst to me, the Just Kidneying blog had become very popular in certain sections of Barnes-Jewish, including the hospital's public relations department. My unknown visitor was a PR person for the hospital who had heard I was in the complex for my operation and wanted to interview me for the Barnes-Jewish transplantation blog, "The Rare Gift"

Now? Right this very second? 

Karen, who was interviewed for the video clip as well, had spent the night before with me in this cramped room, losing sleep with nervous anticipation, and like me had not enjoyed the benefit of hot water, deodorant or a mirror. At that moment, I gained an inkling of how celebrities must feel when they are asked for autographs or photos at the most inconvenient times. 

But I have become such an advocate for transplantation, the Barnes-Jewish team and organ donation, I hardly could refuse such a request. 

This was the result:

Needless to say, I think I've been better! 

But as you know, all's well that ends well, and given how the surgery turned out it's been a long time since I've been any better than this.

Postscript: As we begin 2012 together, this post marks my 100th blog entry since I began Just Kidneying in September 2009. Pretty amazing for someone who never had any intention of ever writing a blog. As Bartles & Jaymes (remember them?) used to say on those wine-cooler TV commercials, "Thank you for your continued support."