HAPPY NEW YEAR, CHEYENNE! (Sorry About Missing Your Birthday)

You know that feeling that washes over you when you are shocked and embarrassed at the same moment?

It happened to me last month as the result of a single, four-word midday text from my amazing Bewee (Best Wife Ever), Karen.

"Happy Transplant Day, Darling!" it read.

Holy dialysis, Batman.

November marked the fourth anniversary of the organ transplant that undeniably saved my life, the introduction of a kidney that was described as "near perfect" by the surgeon who performed the operation on my failing body.

It was donated by a six-year-old girl – or more accurately, her parents, after their child suffered a brain aneurysm one horrific day and died on her school playground. Karen and I dubbed the kidney Cheyenne, reminiscent of a Western hero who gallops onto the scene in the darkest hour and saves the day, as a tribute to her and the unbelievable display of benevolence by her parents in the face of devastating grief.

And until I saw Karen's text message, I'd completely forgotten. Cheyenne's tenth birthday, her fourth inside of me, a true modern-day miracle if ever there was, and the anniversary just slipped my mind.

What does that say about me?

This is the photo I posted on Facebook that week to observe #TBT, or Throwback Thursday:

It's one of the last pictures of me with the two most important people in my life. It was taken at the going-away party for my mother, Caribell, and father, the original "Mac" McFarlin, from the retirement home where they lived for several years before moving home to Georgia and, eventually, going home.

Had I been thinking or retained even an ounce of memory, however, this is the personal history photo I should have displayed:

It's one of the first pictures taken of me and the lovely Bewee in the recovery area of Barnes-Jewish Hospital in St. Louis after I emerged from the dense fog of anesthesia with a nearly-new little transplanted kidney. (Did you know that if a child's organ is sewn into an adult body it will increase in size by itself to accommodate the needs of its larger host? Somebody try to tell me there's no God!)

Yet now, four years later and feeling great, with outstanding monthly lab results and an unrestricted diet, I seem to have kicked my kid kidney to the curb emotionally.

Am I ungrateful? Unappreciative? Have I begun taking my unbelievable blessing for granted?

Actually, I think it's just the opposite.

Ever since my 2011 transplant, and the arduous recovery and constant monitoring that followed, I believe my life dialed up to a sharper focus. I was so happy to be off years of daily dialysis, and I heard myself being thankful for what may seem like the smallest things – even going to the bathroom to pee, knowing that there are so many patients on dialysis who cannot.

I remember reading that Jack Benny, the late, great comedian of the '40s-'60s, used to drive his friends crazy extolling the wonders of the most mundane life events. "You know," Benny would enthuse, "that may have been the greatest ham sandwich I have ever tasted. The ham was sliced just right. And the cheese! My goodness!" That's how I felt, and still feel today: everything is a wonder.

The sky is a little bluer, the air just a bit sweeter. And as I weave through the renal community and meet so many people who are desperate for a kidney transplant or faring poorly on dialysis, my blessings leap into focus once again.

Whenever Cheyenne causes me a bit of sharp or prolonged pain – she's only 10, after all, and adopted, so she does become defiant from time to time (fellow transplant survivors, does this happen to you?) – I'm reminded that her stay is not guaranteed, or necessarily permanent. For any reason, or no reason at all, she could decide one day to reject me and just stop working.

So while I may not think about my transplant as much as I did three or four years ago, I do think about it every single day, whether gobbling down my handfuls of pills, monitoring my vital signs or remembering to squeeze in some exercise. However, as in most relationships, it's not enough to just think about how much your beloved means to you. You've got to express it as well.

Hey, I'm really forgetful, and I am sorry.

Happy Belated Birthday, Cheyenne. And Happy New Year, too.

The Parable of the Party

Bewee, Birthday Girl

After months of preparation and a final 24 hours that felt like my stomach had rented a room in my throat, I pulled off my first surprise birthday party last weekend. My amazing spouse, Bewee (a contraction for "Best Wife Ever;" her parents named her Karen), turns 50 this year, and I felt such a half-century milestone deserved special recognition.

So earlier this summer I arranged a conference call between her mother, who lives about an hour away, and her sister in Nashville. The most important question I had for them was, if I do this, will Karen (a) never speak to me again (b) kick me out of our home or (c) seek to have me killed. Assured that my life was in no eminent danger, I solicited them as co-conspirators for advice on the date, location, guest list and other essential details.

Little yappy dog

Originally my mother-in-law graciously consented to have the affair at their home – which, since it once had been Karen's home, too, seemed fitting in a full-circle kind of way. But the more I thought about it the worse that idea seemed: the house sits in a pleasant but isolated suburb, their little yappy dog, Sophie, would bark herself into a coronary at all the invading strangers, and there is no parking to be had. If I could connive Karen into driving to her parents' home on a Saturday night, the sight of 30 cars wedged up and down the street might just tip her off.

Even though Karen and I live in a resort-style complex, the thought of using the property's clubhouse within walking distance from our front door never occurred to me. Hey, I don't get out of the house much around here! Praise God my frantic, breathless call to the clubhouse manager less than two weeks before the event was met with compassion rather than cackling: in the middle of wedding season, end-of-summer bashes and countless other reasons for the room to be booked, yes, the clubhouse was available for the night of Aug. 23.

Whew.

Then the real work began. Buying the decorations. Selecting the menu. Defining the guest list. At night, while Bewee was asleep. I would sneak onto her iPad and pore over her Facebook friends and Words With Friends opponents to make sure there were no obvious invitees I was forgetting. I sent out invitations and followup messages via Facebook, text and email so as to leave no paper trail. Some of those who could not attend were encouraged to call in on FaceTime or Skype at a predetermined time to deliver their birthday wishes in person.

(BTW, I had no idea how difficult it is to provide a final head count to the caterer. You know not everybody who RSVPs is going to show up, some people will show up who didn't confirm, some folks are not going to eat at all, and others can eat enough for two or three! I have a whole new respect for party planners!)

Then there was the cake. After being totally shunned by one bakery department I won't bother to mention (although it was located in a county market), God led me across the street to a Schnucks grocery store, a big chain in the Midwest. There I found a young, enthusiastic artist-slash-cake decorator who totally got my sense of humor and made my wild suggestions even better.

I figured the most memorable event of Karen's 50th year – other than the surprise party, of course – was the mishap she suffered last April when she tripped over the hose while pumping gas (don't ask), fell on the concrete and broke her left arm in three places. The accident required a subsequent operation to insert a metal plate and nine screws into her damaged wing.

How about a cake showing her left arm with the stitches? Giving the "thumb's up" sign? Holding balloons? Do you think that's too over the top?

I don't know – what do you think?

The hardest part of all, though, was simply keeping the secret. I value Bewee's opinion so highly that I frequently had to catch myself before asking her a question about the planning. "Hey, honey, how many people do you think – oops! Never mind."

To pull off the ruse, Karen's mother called her several days earlier and said she and Dad wanted to take us to a favorite restaurant, The Beach House, for her birthday. Karen leaped at the invitation. Days later Mom called again to confirm the reservation time – exactly one hour later than the start of the party, to ensure we would leave home on time.

As we're driving out of the complex, I come up with a good cockamamie story. "OH! Drat!" I exclaim. "I'm sorry, honey. I totally forgot. They want me to drop off my key to the fitness center this weekend at the clubhouse because they're changing the locks. It will just take a second." 

Bewee grumbled, but agreed. I must say, the funniest moment of the evening for me was watching my father-in-law and Karen's teenage sister, Emma, scramble over each other to get back inside the clubhouse when they spotted our car approaching.

I ran inside, made sure everyone was prepared, then ran back outside. "Honey, get out of the car for a second, please," I said. "You've got to see this!"

"We're going to be late," she muttered. "Why couldn't you have done this earlier in the day?"

Seconds later, she realized what was going on and responded just the way I had predicted. First shock, then self-consciousness, delight – and a jolt of reality.

"Does this mean," she asked, "we're not going to The Beach House?"

That may have been the only flaw in an otherwise joyous, memorable evening.

 

*          *          *

Now I told you all that to tell you this.

I was bitterly disappointed not to have a party for my 60th birthday a year ago. I told Karen as much. I realize that logistically, geographically, it would have been a near-impossible task to pull off satisfactorily. But who cares? It was my BIRTHDAY! The sixtieth! And after receiving a successful kidney transplant two years before, effectively cheating misery and death while prolonging my life, I believed something verrrry special was in order.

I held onto that bitterness and disappointment for some time, I'm embarrassed to admit. And maybe a therapist might determine the real reason I wanted to throw a party for Karen was some twisted form of passive-aggressive behavior. Whatever.

Here's what I know for certain: The whole process of arranging her surprise, right down to the tiniest detail, gave me so much more pure joy than I ever expected. I really got into it, and all the stress and clandestine work became labors of love.

I enjoyed planning Bewee's bash far more than I would have reveled in having a party of my own. Who knew? That Jesus guy, He really knew. In Acts 20:35, He tells us that it is more blessed to give than to receive.

In a society seemingly gone mad with receivers, that's a bit of wisdom always worth remembering.

Happy Birthday, Bewee.

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.

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."

A Time of Thanksgiving

Now, let's see: What's different in my life today from one week ago?

• I have a third working, perky little kidney inside of me. Contrary to what most people think, nothing is typically removed from one's body when you have a kidney transplant. Surgeons simply add the donor kidney to the two you already have, and eventually (just like in business) the new guy gains strength and starts taking over. More accurately, the procedure should be called a kidney implant.

• The proverbial racehorse has got nothing on me. I am turning urination into an art form. As kidneys fail, often they lose the ability to manufacture the urine that flushes waste products from your body; in fact, doctors tell me one way they check to see that a new kidney is functioning properly is how quickly it begins to produce urine on its own. Well, since I never stopped peeing regularly, it's like my bladder has become turbocharged. I'm going at least once an hour; I feel like I'm constantly either thinking about going, going, coming back from going or trying not to go on myself. This eventually will taper off, but right now the new member of the body is obviously just showing off. Whiz kid.

• I have two tubes sticking out of my body instead of one. In addition to "YouTube," my PD dialysis catheter and constant companion the last two years, I also now have what's called a Jackson-Pratt, or "JP" catheter, to pull the excess drainage from my incision into a bulb pinned to my clothing to speed the healing process. Eventually both catheters will be removed from my midsection, but the "JP" won't get yanked until its daily fluid output is less than 0.5 percent. Right now it's at 4.0. Grrrr.

• I am now diabetic. At least, temporarily. Because the steroids used during the transplant played hanky-panky with my blood sugar levels, I now have what is called "steroid induced diabetes." I received my own blood glucose monitor, test strips and instruction session at Barnes-Jewish Hospital in St. Louis, and until my levels drop and stabilize I have to test myself in the morning, nighttime and before every meal, just like my wife, Karen, who suffers from the more permanent brand of diabetes. Oh, we're just poking ourselves now all over the house! You know, the family that pricks together, sticks together.

• I am in considerable pain, although amazingly far less than I anticipated. I think I may have written in a previous post that surgeons say the transplant operation generally consists of a small, hardly noticeable incision on the right side of the abdomen where the new kidney is neatly tucked in. They lie. They cut me like I was being dressed for the butcher's window, including a hip-to-hip slice beneath my waistline that's being held together with staples. I couldn't help but mention this discrepancy to my transplant surgeon, Dr. Jason Wellen, the surgical director of kidney transplantation at Barnes-Jewish – or, as one of my pre-op nurses described him, "Our golden boy of kidneys." "Hey, you're a big fellow," Dr. Wellen explained. "We had to go deep to make sure those blood vessels were tied off properly." I knew there'd come a day I'd regret being this tall.

• My daily pill regimen has increased to more than 30, almost twice as many as when I was on Peritoneal Dialysis. It's necessitated a slight change in my pillbox carrying case: old one on the left, new one on the right.

The majority are new drugs for anti-rejection or to suppress my immune system, which I will have to take for the life of my transplant. (Hopefully, the rest of my life.) But there currently are also some really outstanding pain medications, and I can completely understand how someone undergoing major surgery could get hooked on pain pills and not want to stop taking them. They make the pain just faaade awaaayyy...zzzzzz.


• I have an even deeper admiration and adoration, if that's possible, for my incomparable wife, Karen, who will put her life and career on hold for the next several weeks to take an extended FMLA leave so that she can care for my needs. I can't drive for at least two weeks, so she will be ferrying me to my followup appointments in St. Louis and in Champaign, along with doing all the cooking and the housework I usually take upon myself. And all with a smile on her lips and a song of compassion in her heart. (At least, for now!) How lucky can one guy be? I am so looking forward to hanging out with my best friend every day in these days to come and just enjoying each other's company as my health and strength continue to improve.

• Thankfulness. I don't think I've ever been more humble, thankful or appreciative than I am this holiday season. When you hear phrases like "golden boy" and "you got a dream kidney," you begin to realize that everything fell into place through the power and grace of God. All the prayers, all the friends, all the health care professionals, the surgical team: I could be saying "thank you so much" for the rest of my life.

So I'd better start now. To all of you: Thank you so much. Happy Thanksgiving.

Tat's My Wife

WARNING: This blog entry may make tears flow from your eyes, clog your nose with mucus, and leave you honking and weeping like a blubbering idiot. At least, it did for me. You may be different. Just in case, you may wish to read this in a dark room by yourself. 


You would really like my wife, Karen. Practically everyone who knows her does. She is genuinely one of the sweetest people I have ever met, not to mention kind, funny, smart, spiritual and practical. Real pretty, too. It's as if God grabbed a golden ray of sunshine and placed it in her soul.

                                                                             This is Karen.

She is a mature, responsible woman who is just slightly older than 21, a longtime executive at the University of Illinois. Which is why her recent declaration shocked the pu-pu platter out of me.

"I want to get a tattoo," she announced.

"I beg your pardon," I replied, certain she must have said something about Hervé Villechaize on Fantasy Island.


"I'm going to get a tattoo." She went on to explain that she'd secretly always wanted one and decided the time had come today.

"But what kind of design do you have in mind?" asked I.

You may remember back in June when I was in Barnes-Jewish Hospital in St. Louis and minutes away from receiving a kidney transplant but got false-alarmed instead? (If you don't, and want to experience that heartwarming feeling for yourself, you can read the blog entry here.) At that time, our 11-year-old, Madison (who now, thanks to adoption, is also my sister-in-law), took it upon herself to create a work of art to brighten my hospital room, complete with an appropriate Bible verse:

The verse is Psalm 73:26. It reads, "My health may fail, and my spirit may grow weak, but God remains the strength of my heart. He is mine forever."

We all were moved by Maddie's gesture, but apparently no one was more affected than Karen.

"I want that Bible verse on my wrist," Karen said, "with a drawing of a small kidney above it."

"The whole verse?" I asked, incredulous.

"No, silly. Just the book and the chapter."

"Wow," I replied. "Maddie's drawing meant that much to you?"

Karen's eyes glistened, with that look that says, "You don't get it, do you?"

"I've always wanted a tattoo," she said softly. "There's just never been anything in my life so important to me that I wanted it on my body permanently."

Aw, shucks.

After a bit of research, Karen decided to have the deed performed at the 217 Tattoo Co. next to the U of I campus. (After all, what better place to get your first tattoo these days than near a university?) I didn't get the sense that her tattoo artist was a Biblical scholar, but he was very kind and understanding.

I had planned to take photos of the inking as it was unfolding, but I found myself just holding her other hand during the process, expressing concern and offering support. "Does it hurt? Does it hurt?" I kept asking. She kept assuring me that she was doing fine, Karen came through the affair like a tattoo veteran – better than I did, in fact.

And here is the result:

Karen and the artist debated tiny details, like whether it should be "Psalm" or Ps." (more work, less confusion), or if there should be a line through the "7". But the finished product seemed to delight everyone involved, no one more than Karen.

Now that it's had some time to settle in, some people have guessed the drawing is a little bean, even a small brown penis. But Karen and I know better. And long after I finally receive my kidney transplant, we will have a special bond to share for all time.

Oh, what a lucky man I am.

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!




 

It's the Pits

Admit it, guys: sometimes, when you're all alone in the bathroom getting ready to go somewhere and you suddenly realize you're out of deodorant, don't you sneak into the medicine cabinet and "borrow" a swipe of your lady's pit juice?

Well, I did one recent morning, and I must say I was shocked by what I found.

In my rush to leave the house I crept furtively onto Karen's side of the bathroom, slipped open her toiletries compartment and grabbed her Dry Idea antiperspirant. Dry Idea, as I'm sure you know, is perceived as a women's product, but SLAP! SPLOOSH! A quick stroke on each armpit, return it to its exact place on the shelf, close the door and no one will be any the wiser.

While placing it back in the cabinet, however, I happened to turn the container around and glance at its ingredients.

Here's what I saw:

In case you can't read the sentence smack in the middle of the label, it reads, "Ask a doctor before use if you have kidney disease."

Say WHA?

I can see consulting your nephrologist if you've been recruited to compete in a beer-drinking contest, or if you're thinking of going on that all-banana diet. But what kidney patient would ever think of asking a doctor's advice on what kind of deodorant to use?

I have scoured the Interweb trying to find information on why Dry Idea is the enemy of anyone with Chronic Kidney Disease. Nuthin'.

I am dying of curiosity. If anybody knows why this particular brand of stink pretty is Kryptonite to weak kidneys, please enlighten me.

In the meantime, this chance incident serves as a reminder to me to always read the product labels. On everything. It's a practice that's especially important when one's system is weakened by illness or disease.

Dry Idea's advertising slogan used to be, "Never let them see you sweat."

No kidding.

Just Kidneying – For Real

The chief transplant surgeon swept into my room at Barnes-Jewish Hospital in St. Louis, seemingly pulling the entire medical staff of the hospital behind him. lnterns, his surgical team, associates, student fellows – it was the "white coat swarm" that my nurse, Renee, warned me would be coming into my room to stare at me for a while.

But they were more than an hour late in their appointed rounds, which should have told me something.

The surgeon fixed his eyes and set his jaw. "I'm afraid it's bad news," he said solemnly.

Another doctor proceeded to give us the details: the kidney that had been designated for me, the one that prompted Karen and me to toss our clothes in a bag and race 200 miles to St. Louis at a moment's notice on a Sunday afternoon, the one that kept me overnight in a hospital though I wasn't sick, the one that necessitated a chest X-ray, EKG, blood screenings and a battery of other tests to make sure I was healthy enough to receive it – that kidney wasn't coming.

In keeping with the arcane rules and protocols of organ donation, at the last nanosecond another hospital in the region stepped up to claim the kidney for a patient whose condition was far more dire than mine. The doctor said a lot of other things, most of them apologetic, but I became lost in my own thoughts after that. The next thing I remember hearing was the chief surgeon saying, "You can get dressed now," before the swarm drifted back out of my room.

That's it. False alarm. So sorry. Just kidneying.

How ironic.

I was disappointed, of course, and very weary after a night of being poked, prodded and roused from my sleep every few hours on those wonderful hospital beds. The drive back from St. Louis seemed to take days. But I was neither upset nor discouraged. This revived relationship I have with Jesus Christ has given me an amazing sense of calm in matters such as these. It must be what the Bible means by "peace that passes all understanding." God knew this wasn't the right kidney for me, even though all the outward signs suggested it. When the perfect organ for me comes around, He will handle all the paperwork. God is in complete control.

What this experience showed me was the incredible fragility of this organ donation process. If an organ becomes available and if it's undamaged; if it's an acceptable blood and tissue match; if the potential recipient can get to the hospital in time; if he or she doesn't have a low-grade fever, undetected infection or some other physical impediment to surgery. Even then, there are no guarantees the transplant will actually take place. So many things have to go exactly right. It's a life lottery.


What saddens me most is not that I missed out on the transplant. It's that so many other people, who had offered up so many prayers, positive thoughts and good wishes, seemed more disappointed than I was. I'm told my father-in-law cried openly when he heard a matching kidney had been found. Larry is my personal version of John Wayne; he's not a cry-at-the-drop-of-a-puppy kind of guy.


My wife's BFF took the day off from work and drove to St. Louis to be at the bedside with Karen. My in-laws showed up to lend their support, bringing the twins with them. Madison, who really is becoming a talented young artist, used the trip to create paintings to adorn my hospital room, including one with a Bible verse she selected herself. We taped it to the front door of my room.

The passage is from Psalms 73. It reads, "My health may fail, and my spirit may grow weak, but God remains the strength of my heart; He is mine forever."

My pastor, Tony Caffey, and his wife, Sanja, drove in from distant Arthur, Ill., arriving about 90 seconds after we heard the unfortunate news. The gang truly was all here, and ready to rejoice. Their joy, alas, was short-circuited. So we all gathered in a circle and prayed instead.

So many of you put forward so much love, prayer and support on my behalf, I could actually feel it in my room at Barnes-Jewish. It's a phenomenal feeling to be cared about that deeply. Thank you. Thank you so very much.

The good news is, this call means I am at the top of the transplant list. I was told there have been instances where patients have been called in four or five times before they actually receive the transplant. (Oh, Lord, tell me that's not going to happen!)

I'm going to keep praying. You keep praying, too. Together we'll get through all this. And someday, after I've had a healthy replacement kidney for years and am doing better than any of us thought possible, we'll look back on these days and laughhhhh.

The Kidney Call Comes

I wasn't ready.

My best friend since kindergarten, Walker Parmelee, told me not long ago that no one is ever ready when the call comes that potentially could change the rest of your life. It's like the Bible says in Matthew 25, "Watch therefore, for ye know neither the day nor the hour...."

Our day was Sunday, June 19. Father's Day. Four days after my 5*th birthday. The same week the State of Illinois was ordered to extend, rather than totally revise, existing health care benefits for its employees – including Karen, whose medical coverage I am under. I should have known this would be the time God might choose.

The hour was 2:30 p.m., after Karen and I had returned home from church at Harvest Bible Chapel. Ironically, my phone rang just as I was sitting down to a delightful home-cooked lunch, and I opted to let it go to voicemail.

Moments later, it rang again. Now I'm getting a bit peevish. "Which one of my idiot friends can't figure out that if I don't pick up the phone, I don't want to talk right now?" I carped, my thoughts in the form of a mutter.

The ringing eventually ended on that call, too. Then Karen's cell phone sprang to life. She at least had the motivation to get up and look at the number.

"Do we know anyone in the 314 area code?" she asked.

"That's St. Louis," I said. Home of Barnes-Jewish Hospital, my kidney transplant headquarters.

My blood ran cold.

She put the phone on speaker and we talked to a very nice transplant coordinator named Trish. She said a potential kidney donor match had been located for me: a 54-year-old woman (whoo-HOO! Younger than me!) who died within the past 24 hours and is a solid blood and tissue match.

That's the way it often is in the transplant biz, tragically. Someone's got to die for the gift of life to be bestowed.

The hangup in this case: no one knows anything about the lady's medical history.

Surgeons will perform a biopsy on the kidney to see if there's anything wrong with it internally, but until the results of that test come back and doctors are satisfied that it's damage- and disease-free, we're in a bit of limbo. What's more, because of the questionable origin of the organ, I'm told I can say "No, I don't think so" right until they wheel me into the OR without penalty of losing my place on the donor list.

Pressure? What pressure?

It isn't that I'm not thrilled about the prospect of a kidney transplant, although on the three-hour drive to St. Louis I could feel myself growing quiet and sullen. The closer we got to the Gateway Arch, the harder it was for me to catch my breath. At one point I thought I was hyperventilating.

It's hard to explain. As much as I try to put my faith in God for all things, I think it was just the fear of the unknown that was sending my mind into the funk tank. I'm doing all right on Peritoneal Dialysis – better than all right, actually, I'm doing great – and even though I may not stay that way forever and a transplant is far and away the best alternative long term, I always have had a very tough time adjusting to change.

It's amazing to me how many questions and "what ifs," serious and silly, come to mind at a time like this:

What if there are complications in the surgery?

What if my body rejects this lady's little kidney?

Will I miss dialysis?

What will I do with all that extra time and medical supplies once I'm off dialysis?

How will I respond to the anti-rejection drugs?

Will I ever be able to eat sushi, or raw anything, again for fear of infection?

Will I have to wear a mask in public?

You can drive yourself cuckoo-for-Cocoa-Puffs if you let your mind run free with all those "what ifs." Enough already. I'm much calmer now. Once we got to the hospital, got checked in and they started running diagnostic tests on me, I felt much better. Whatever's going to happen now is going to happen. It never was in my hands in the first place.

Right after my EKG was completed, out of the blue, a member of the church I belong to 180 miles away strolled into my hospital room. Dick Elder's wife, Kathy, is also a patient in this massive medical complex – and, as it turns out, in the room one floor above mine.

Small world, schmall world: you'll never convince me that's a coincidence.

Then the hospital technician, as she was drawing my blood, suddenly began softly praying aloud for my health and safety. "If it's for you, it's going to happen," she said, laying a hand on my wrist. "The Lord knows what's best for you. We ask you, dear Lord, to put this man's health in your hands."

Powerful stuff, this kidney transplant. Amen.

Giving Me the Finger

WHAT THE HECK IS THIS?

Not long ago I woke up to find the ring finger of my right hand bent back like a brown "C," as if it was pointing back at me, or preparing to flick something away. Even worse, it was locked in that position. And it hurt! I grabbed it with my other hand and tried to straighten it out. After hearing a small but audible "click," it was back in its normal position.

Now it's happening to the same digit dozens of times each day. Since I use that finger, along with its nine close friends, to do important things like write, make money and deliver these messages to you, this is no minor inconvenience.

It's an incredibly weird feeling when a part of your body doesn't respond to your mental commands. When it locks, I stare at my finger  and think, "Bend! BEND! I, your master, ORDER you to return to your regular place!"

Nuthin'.

Like I did when I learned I had kidney failure, my first move was to the World Wide Interweb to do some fast, intense medical research. What I have is actually quite common, Google tells me. O, fortunate me.

It's called "trigger finger," or stenosing tenosynovitis. We'll just stick with "trigger finger." And according to the American Academy of Orthopaedic Surgeons Web site, even with all the advances in modern medicine nobody seems to know exactly what causes it. Marvelous.

Here's what the orthopods do know:

• It happens when the flexor tendon, which controls the movement of your fingers and thumbs, becomes irritated or actually gets caught for a moment on a tiny nodule growing in the sheath that keeps the tendon in place.

• It is more common in women than men. (Lucky, lucky me.)

• It  occurs most frequently in people between 40 and 60. (Check.)

• It is more common in people who have certain medical conditions, lilke rheumatoid arthritis or diabetes. (Wait a minute: I've got diabetes, too?)

(Oh, no. It's probably the kidney thing. Never mind.)

• It may occur after heavy hand use or activities that strain the hand. (You mean, like typing millions of words over a 35-year career?)

Fortunately, a woman at our church, Theresa Miller, is a well-known physical therapist in the area. Unfortunately, she couldn't hold out much hope.

There is no "cure" for stenosing tenosynovitis, Theresa told me, and the best treatments are rest, perhaps some heat, and anti-inflammatory medicines. Occasionally a doctor will inject a steroid medication DIRECTLY INTO THE FINGER to help relieve the pain. (I'll need a moment here.)

As a last resort, surgery may be recommended to prevent permanent stiffness. In any case, the options don't sound particularly sunny.

Karen has become very adept at massaging the sides of my finger in just the right places when it locks to ease it pack to full extension. Theresa suggested a special finger splint to aid in the resting process, and I'll likely pick one up the next time I'm near a medical supply outlet. So in the future, if you should read anything I write that suddenly starts missing all its "Ls" and "Os," it's probably because I'm trying to finish my w rk whi e wearing the sp int.

Jimmy Springs a Leak

Why they waited until the day of their mutual birthdays to decide they had to buy presents for each other, I'll never understand. But the twins, Madison and Emma, pleaded with me to drive them to the mall on a recent Friday after school. Happily, in January I bought a 2011 black Chevy Camaro (feel free to oooh and aaah below) because I decided to fully enjoy my only midlife crisis, so I'm pretty excited to drive anybody anywhere these days.

The girls love to shriek and cavort from its back seat over the sheer power of the Camaro's mighty V6 engine – which, come to think of it, may have been the reason they waited until they were sure I would be the one to ferry them in my "rocket car," as they call it. They have even bestowed it with a nickname: 'Black Betty." I'm thinking seriously of getting a vanity license plate for it this summer that will simply read, "BAMALAM." Those who get it will get it.

Happy Black Man With Snappy Black Car  

Anyway, we're in Decatur motoring down Martin Luther King Boulevard en route to the mall (why do bad things always seem to happen on MLK?) when I decide to call The Wife on my Droid and let her know where I'm headed.

"Gadzooks!" (or something like that) I think to myself. "My phone is wet! How can that be?"

Then, in fast order, I realize the right side of my jeans, my leather jacket and, yes, my underwear are soaking through, too. I pull back my jacket and unleash a spout of liquid shooting straight up into the air – all over the interior of my brand-new beautiful car. Worse, that liquid was quickly identified as warm body juice; the joint where my catheter connects to its external tubing had cracked, and the dialysis fluid that should have been circulating around my peritoneal cavity was suddenly circulating around my Camaro.

As the girls squealed and pointed, I grabbed the leak with one hand and steered the car into a church lot, no easy feat when you're driving a stick shift. I put the rocket car in park, leaped from the vehicle and attempted to cap my gusher. The twins, trying to be extremely helpful, grabbed everything they could find to stuff the leak: used paper tissues on the floorboard, a dirty rag on the backseat. I think I even remember seeing an old PayDay wrapper in all the confusion.

Praise God we were less than a mile from my DaVita dialysis clinic. Doubled over like a gunshot victim in a TV show and working my car's clutch with whichever foot was closest, we sputtered into the DaVita parking lot. It was nearly 5 o'clock on a Friday, but I prayed someone would still be there who could help.

Prayer answered. There has been considerable flux and turnover among the Peritoneal Dialysis nurses in Decatur, and Karey was virtually a PD rookie, but she happily agreed to give my catheter repair a try. While she called Champaign for advice and inspiration, I waited anxiously. When you have a manmade hole in your body with a tube hanging out of it, you are repeatedly warned that infection is a constant danger. Peritonitis. Can be fatal if unchecked, you're cautioned. And we've just slapped every filthy thing we could find on top of it to stem the tide. We did everything short of blow on the tube to hold the water back! If the catheter gets infected, or needs to be removed, my days on PD could be over.

Emma and Madison, for their part, were wonderful, supportive and encouraging. It took nearly an hour for the emergency patching to be completed, and the girls busied themselves by watching TV in the clinic lobby, talking up patients coming in for their treatments, and taking a semi-guided tour of the facility. (That is, peeking in the open doors.)

Madison and Emma, Acting a Fool at the DaVita Dialysis Clinic   

"Jim," Madison enthused, "this is the best birthday ever!"

I'm sure Maddie doesn't know the meaning of hyperbole yet, but for some reason I had a hard time believing that.

Finally the leak was sealed, temporarily; I had to journey to Champaign the following Monday for the permanent fix. As she was putting on her best finishing touches, Karey asked, "Why didn't you use your clamp?"

"What clamp?"

"Do you have a little white clamp they gave you to tie off the fluid line in case of emergencies?"

Sheepishly, I reached into my jeans pocket and pulled out the small pillbox I carry to hold my mealtime medication. I opened it. Yep, there it is, all right. A little white clamp. Good thing I have that, in case of emergencies. Hey, I could use some emergency training!

As we walked back to the car, I heard a small, tentative voice behind me.

"Jim," Emma asked, "can we still go to the mall?"

What could I say? They had done so well, been so helpful, reassuring and patient. Off we went to the mall.

"But remember, ladies, my underwear is still soaking wet!" I announced. "So please shop as quickly as you can!"

Ever try to make two 11-year-old girls shop quickly?

Ever go through a mall walking like John Wayne?

P.S.: The Wife watched me the entire weekend like I was planning an escape, looking for any hint of fever or discomfort, but I came through with flying colors. No peritonitis. No infection. God is good. All the time.

Flashes From the Frontline

The Wife says I write these blog entries way too long. They're not even blog posts anymore, she claims; they've become "blarticles," a term I hope she copyrights before it becomes all the rage in cyberland.

"They don't all have to be complete, touching essays," Karen says. "Some of them can be just paragraphs." You think she'd know me by now, wouldn't you? I gots a lot to say! And, unlike writing for other publications and their editors, here no one can tell me when to stop! Whoo-HOO!

Still, I believe Karen may have a point, possibly. Maybe. A little. So today I'm going to briefly (I hope) mention a few topics I think are worth sharing with you in bullet-point fashion.

• Happy(?) Anniversary: December marks one year since I started on PD, Peritoneal Dialysis. So far, I'm feeling fine. Hallelujah!

• It's Alive! Alive!: Baxter Healthcare, the Illinois-based colossus that manufactures and supplies my dialysis materials, has just launched a new consumer Web site called Live Now: Rethink Kidney Disease. According to its home page, Live Now is "a movement to start living on your terms, with hope, optimism and strength. Kidney disease doesn't define your life – you do. It's time to get up, get out and live for today."

I am proud to say I was asked to serve as a contributing editor on this breakthrough project. The marketing folks at Baxter knew I was a professional writer (in the sense I can actually find people willing to pay me money to write stuff) and that I travel quite a bit for work while maintaining my Peritoneal Dialysis (PD) routine on the road, so they recruited me to create the main articles for the site.

I wrote pieces on traveling with PD, working full-time while on PD and (heh, heh) maintaining intimacy while on PD. (I consulted with Karen for the last one. Thankfully, she agreed it was possible!) The theme of the articles, and the site itself, is, "Yes! Yes! Whatever you did before you contracted kidney disease you still can do while on dialysis!"

The funny part was, when I got the assignment I approached it very seriously. I did my research, compared other articles on the subjects and wrote my first drafts in a very straightforward, scholarly manner. I'd forgotten that the people at Baxter read this blog, too. "There's something wrong with this," they said upon receiving the first draft. "It's not...funny enough! It needs more Jim in it! Are you all right?"

"You mean, you want it goofier?" I asked, incredulous.

"YES! We want you to write it like you write Just Kidneying!"

And so I did. Or tried to, anyway. You can be the judge. I thought about reprinting the articles here, but I'm sure my new clients at Baxter would rather I send you to their site. It's www.livenow.info.

I'm on Board With This: The miracle of the Just Kidneying blog continues. I have been asked to volunteer to sit on PACt, the Patient Advisory Committee for Baxter Healthcare. (I have no idea what the little "t" stands for.)

That sentence construction is correct: "asked to volunteer." Apparently, the way it works is, Baxter can't reach out and solicit people to join their advisory group. Looks a bit suspicious, like they're stacking the deck in their favor. But if you express some interest and tell Baxter, "Hey, I've got some opinions (I am a critic, after all), and I want to join your board!" then they can extend an invitation to become a member.

As I understand it, representatives from the R&D (research and development) and marketing departments will give presentations on their newest endeavors, and we get to provide input about how far off base they are. As a living, breathing dialysis patient, I hope to provide some real-life insights about how practical their innovations really are. The next meeting is in March 2011.

If you're a dialysis patient (or even if you're not) and would like to add your voice, shoot me a message; I will try to let you know what the bigdomes at Baxter are thinking and solicit your feedback. Think of me as your union rep!

In Praise of the Olfa Touch-Knife: Several months before I started PD, Karen and I were shopping at a Michigan outlet mall and on a whim we bought two Olfa Touch-Knives at the checkout table. They are marvelous little devices, about an inch-and-a-half wide with a retractable blade as sharp as an editor's pen.

                      
They also provide the only real enjoyment I derive from this tedious dialysis process – slicing open the drainage bags after a fluid transfer and watching the liquid gush into the sink or toilet like a waterfall. It's exhilarating!

Sadly, during one of our recent road trips, I lost one of our knives. Crap! I went on the Olfa Web site, but they want you to buy like 100 or more to get an online discount. I only want one or two. So if you spot an Olfa Touch-Knife at any checkout counter or housewares store in the near future, buy a couple for me or let me know where you found them.

Cut me in, so to speak.

The Toughest Decision

I was in the middle of a deliciously hot shower not long ago, singing lustily to some bygone '80s hit (probably by The GAP Band), when my mother-in-law came into the bathroom and thrust her cell phone behind the curtain.

She dropped a bomb on me, baby.

"You MUST take this phone call!" she announced.

"Uh, I'm kinda wet, soapy and naked at the moment," I replied. "This can't wait five minutes for me to dry off?"

"NO!" Mother-in-Law declared. "You have to take it RIGHT NOW!"

I understood the reason for her urgency moments after I took the receiver. My wife, Karen, was on the other end. The transplant office at Barnes-Jewish Hospital in St. Louis, where my kidney case is located, called her when they couldn't find me. And how could they? I was singing in the shower!

The hospital had located a replacement kidney for me.

My eyes began stinging, and not because soap was dripping into them. Apparently, a gentleman from Detroit whom I had never met (and whose name won't be repeated here out of respect to his family), upon learning of his terminal illness, designated in his will that I was to receive one of his kidneys.

I've wracked my brain ever since trying to recall any part of my past where his name might be familiar, but come up empty. I can only assume he may have read my medical confessional in HOUR Detroit magazine a year or so ago, or somehow became aware of this blog. However it happened, the thought that a complete stranger personally chose me to receive a life-giving organ upon his death is beyond humbling. It's overwhelming. Praise God.

Since Karen was still in her office, she set up a three-way conference call between her, the transplant coordinator and me. The coordinator explained that the kidney being donated to me fell under what they call the "extended criteria" category. It was a match, but the donor was eight years older, suffered from hypertension (high blood pressure) and had a history of smoking in his past.

"Geez," I thought, "this sounds like my own kidneys, only with more mileage."

If I wanted the kidney, they would start to make arrangements for the transplant operation straightaway. If I decided not to take it, there would be no harm, no foul for me because of the condition of the organ; I would simply be placed back on the transplant waiting list. Whatever I decided, I had to give my answer immediately, if not sooner. The kidney was being harvested, and if I didn't want it, someone else could benefit from the transplant.

I asked the coordinator if we could have a little time to make our decision, and she agreed. (And it is our decision, by the way; the entire family lives with kidney disease, suffers through a transplant operation and assists in the recovery. Everybody gets a vote in this election.) Take as long as you like, she said. You can have a couple of hours.

I thought I had agonized over other major decisions in my life, but they were easy-peasy-lemon-squeezy compared to this. I tried to contact my kidney specialist, Dr. Attia, for a second opinion but couldn't reach him. Karen and I talked intensely, and my mother-in-law had a few more words of wisdom for me once I was out of the shower.

We prayed. We discussed. We debated. Then we prayed and discussed and debated some more. Ultimately, the verdict would be mine.

Two dizzying hours later, I had made up my mind. My decision might have been different if I was in worse condition, or if I wasn't coping so well on Peritoneal Dialysis. But somebody else might need that kidney more desperately right now, and I could afford to wait for a younger, healthier, more ideal organ to come along.

I called the transplant coordinator back and politely said thanks, but no thanks.

It was a gut-wrenching call to make. I felt as if I was slapping a dead man in the face, spitting on his final wishes. Think about his family, Karen offered. They've probably gone through so much already with his illness and death, and rejecting his kidney is almost like you're rejecting him, and the rest of them as well.

Thanks, honey. That helps a lot.

For what it was worth, at my next scheduled appointment with Dr. Attia we discussed my decision at great length. He agreed with my thought process. If some surgeon is going to cut you open and stick a foreign object inside you, he said, do it once, do it right, and do it with the best organ you can find.

Which doesn't mean I don't think about that man I never met and his amazingly selfless offer every day. Did I insult his memory? Did I make the right choice? Who can say for sure?

And what if that perfect kidney never comes along?

It's Not Kidney Disease, It's the Lions

There is a small part of me that knows I'm sick, but generally I feel so good and have adapted so well to dialysis (knock on wood) that I rarely tend to think about it. God is good, all the time. However, it's a comforting feeling to know that should I ever really fall ill in public, there are still caring people in the world that might rush to my aid.

Sunday afternoon Karen and I were shopping at the Nordstrom store in the giant Woodfield Mall outside Chicago. (Ah, Nordstrom: Like so many things in life, I didn't realize how much I appreciated it until it was gone, after I moved to a city that didn't have one.) I was browsing through the men's department while watching pro football updates through the NFL Red Zone app on my Droid cell phone.

(Now let me interject right here that, after years of insisting my cell phone needn't do anything more exotic than send and receive calls, I was given a Droid recently by my wonderful wife when she upgraded to a new model. (Growing up as an only child, this may have been my first hand-me-down ever.) How could I have been so wrong? I am proud to declare that I am a Luddite no longer. This Droid is the best invention since peanut butter cups. With the Red Zone app I can watch NFL game action in real time on my telephone. I feel like Dick Tracy with a two-way wrist radio. My mother, if she were still alive, might faint dead away over these technological marvels we now take for granted.)

While looking over white Oxford shirts – no wardrobe can ever have enough – I was monitoring the Detroit Lions game at home against the powerful New York Jets. I am a foolhardy Detroit sports fanatic, as you may know. And though every Lions fan knows better than to invest too much passion or emotion in the outcome of their games, the team has been playing better of late. They held a 10-point lead over the Jets with mere minutes to play.

I kept shopping and checking the score, back and forth. Nice price on these chinos. The Jets have tied the score! Do you have this shirt in extra jumbo? They're going into overtime! Oh, the Nordstrom shoe department is so wonderful! And the Jets storm back to win the game on a field goal in OT!

I was momentarily crestfallen. Dagnab it, those Lions did it to me again! I emitted an audible groan and slumped against a rack of sale slacks.

In the blink of an eye, a dark-haired young saleswoman was at my side. (It was Nordstrom, after all.)

"Sir, are you all right?" she asked, breathless.

"No, I'm not," I replied.

"Should we get you somebody?"

"Yes. Maybe a better defensive backfield."

"What?"

"My team just lost in overtime."

A nervous laugh leaped from her lips, a combination of relief and confusion. Then her eyes narrowed, and a shot of anger flashed.

"You mean this is all because your football team lost a game?" she asked.

I straightened up and looked at her with calm resignation.

"Obviously, miss," I said, "you have never been a sports fan."

Go Lions.

Blogged Down

I truly enjoy this time I spend with you here, tossing some junk philosophy about life and chronicling my journey from lousy kidneys through dialysis and, hopefully one day, an organ transplant. Not only has the process been surprisingly cathartic for me, but I'm often told this blog has given comfort and entertainment to many, while providing me with contacts and opportunities I can't imagine having received any other way.

You'd never guess the depth of my pleasure from the frequency of my postings, though, wouldja?

I look back at how often I've contributed a new entry to Just Kidneying – two in April, two more in May, a grand total of one last month – and I'm embarrassed. It's not for lack of material. I have so many stories I have yet to tell you: my remarkable visit and experience at the Baxter Healthcare headquarters in Waukegan, Ill.,; my all-day medical endurance test at Barnes-Jewish Hospital in St. Louis to be evaluated as a kidney transplant candidate; even my observations on the mechanical dialysis cycler that has been my daily companion, home and away, for the past six months.

It's not for lack of passion, either. The heart is willing, but the fingertips are weak. Here's the problem: I write for a living. It's pretty much all I do, seven days a week. (Freelance writers, I have discovered, are afforded neither days off, overtime, sick days, vacations or any other compensation demanded by the modern American worker.) 

I write for four publications pretty much full-time, and I'm working on a new book. Karen (aka The Wife) is quite favorably disposed to the concept of me receiving checks in the mail for sitting around on my butt all day in front of a laptop ("Any windows today?" she will cheerfully inquire, referring to the long business envelopes with the clear windows in front, frequently denoting payment inside), and if I'm not writin', fish ain't bitin'. 

I have known many people in my professional career who literally live to write. If they weren't working for the newspaper or magazine that employed them, they were crafting poetry or maintaining a journal or writing letters or composing grocery lists. OH, how I envied them! Ever since my first job out of college at The Grand Rapids Press in Grand Rapids, Mich., I have written to live. I write something, somebody somewhere pays me. If I wasn't on assignment, I would much rather be watching a ballgame on TV, going to a movie, sticking needles under my fingernails – anything but continuing to write for the pure joy of composition. Blecch.

When I made the decision two years ago to step out on my own and become a full-time freelance writer, I prayed that God would guide me and help keep work coming my way. Boy, can God provide and answer prayer! If anything, my biggest problem has been too much work; at any given time I usually have three or more stories in progress at once. I could use a nap. 

In the past seven days, for example, I've finished a four-figure assignment on a custom publication for a national advertising agency, completed my regular TV column for The Metro Times in Detroit (you can read a sample here if you're interested) and began working on a feature story for HOUR Detroit magazine. (Though I no longer live there, Detroit is still the primary source of my freelance income, for which I am extremely grateful.)

So I have to prioritize. And as much psychic satisfaction and creative fulfillment as I derive from Just Kidneying, it doesn't pay the car note. I'm still trying to figure out a way to integrate writing this blog more regularly in between all the paying gigs, and I will. Because I want to. But in the meantime, hang in there with me, will you? I miss you when we don't talk more often. And I can't wait to tell you the story about St. Looie.

 

It Really Was Diff'rent Strokes

Gary Coleman died today, and if you haven't said, "What'choo talkin' 'bout, Willis?" at least once in his honor, you just don't care.

                        Gary Coleman, Feb. 8, 1968 - May 28, 2010

It was an "intracranial hemorrhage" that ultimately claimed him at the tender age of 42, but if you can believe all the tabloid reports and your own eyes, life hadn't been a painless experience for Coleman in quite some time. I met him, briefly, many years ago; he was pleasant and seemed gracious enough, but you couldn't escape noticing the incredible sadness in his eyes.

You may also know that Gary Coleman fought a lifelong battle with kidney disease. He suffered from a condition known as focal segmental glomerulosclerosis, the illness that ultimately stunted his growth at 4-feet-8 and resulted in two kidney transplants during his life. At one point, it is said he needed four dialysis treatments a day in order to survive.

I guess I'm feeling particularly close to him today because of that. And I'm so very thankful that kidney care and dialysis technology has advanced so far in such a short time. I'm sure Coleman endured pain and misery that I can't possibly imagine because the science wasn't in existence to treat him better just a few decades ago.

This could be why some friends who haven't seen me in a while find it difficult to suppress their shock when they discover that I still look relatively healthy. Mentally, they may be using Gary Coleman as their template. I have a tremendous support network, from my wife, Karen, and my family, to the doctors at Carle Clinic and my amazing nurses at DaVita, all working to keep me looking and feeling this well.

We're not all that different, Mr. Coleman and me: both African American, both adopted, precocious kids born in the Midwest. I'm older, but we're of a generation. But life's a funny ol' dog, ain't it? I realize that Coleman's lot in life could just as easily have been mine. Diff'rent strokes, you know?

Rest well, Gary.

But What a Face

I cannot stop chuckling over the unbelievable irony of the past few months. Thanks almost entirely to the unseen exposure of this blog, I have been offered some amazing opportunities that never would have occurred were it not for my crappy kidneys. Who knew that another small burst of quasi-celebrity would come my way in the midst of my midlife crisis, all because of Stage IV kidney failure?

In a few weeks, I will be testifying before the Michigan Legislature at the state capital in Lansing, putting a personal face on the topic of "Chronic Diseases in High-Risk African American Populations" for the National Kidney Foundation of Michigan's annual Diabetes and Kidney Day. I've pretty much polished the outline of what I'm going to say.

"I'm sick! Support us sick people with greater funding!"

The irony here is not so much that I don't live in Michigan any longer, although that is pretty funny; this speaking engagement was offered and agreed to some time before my move to central Illinois. The irony to me is that I could not have a kidney transplant performed in the state of Michigan now even if I wanted to. My current health insurance won't cover it. That's a point I'll be certain to mention during my little chat.

Then in early May, I have been asked by the folks at Baxter Healthcare Corp., the company that manufactures and delivers my dialysis supplies, to be the guest speaker at their quarterly employee meetings in northern Illinois, read a few entries from this blog and leave 'em with a little snappy patter. Guess campaigning for an invitation really works sometimes, eh? (See the "Cancel the Tour Guide" entry of Feb. 10.)

Baxter is really doing this first class. They offered to pick me and my Karen up in a company car and drive us to the meeting, put us up in a hotel the night before and pick up the tab for dinner after the event. Pretty snazzy. Originally, when they extended the invitation, I thought it was going to be sitting around with a handful of workers in the Baxter coffee room and engaging in some clever small talk. "Oh, no," explained Trisha, the Baxter senior marketing manager. "This is the quarterly employee meeting. There'll be hundreds of people there, the corporate executives, teleconferencing...."

Oh.

My patter had better be snappier than I thought.

But the real kicker of late is my selection as the "Male Face of Kidney Disease" for DaVita, owners of the dialysis centers that coordinate my care. DaVita launched a new Web site a month or so ago on behalf of their awareness-raising Kidney Run/Walk events across the country. They wanted to humanize the affair and selected three women with kidney disease to tell their stories in the online forum. Apparently, they were having trouble finding a man to help balance the presentation.

"Would you mind if we told your story on the site?' the DaVita marketing people asked me. Again, they never would have known that I, my crumbling kidneys, YouTube or my Little Home on the Prairie even existed if it were not for someone turning someone at DaVita headquarters onto "Just Kidneying." What a world, this Internet!

So I'm on the site, putting my manly face and personal story on the cause and effect of kidney failure. You can see the page here. When I informed my Facebook friends, always a supportive bunch, some suggested it was way better than being the Male Face of Incontinence, or Erectile Dysfunction. Jimmy Doom, a Detroit actor, writer and one of my favorite people, opined that as long as the role didn't involve wearing a mascot's costume, how bad could it be?

Others have suggested that maybe I should find a mascot's uniform. Hey, what are they saying about my face? If I can find a getup in the shape of a kidney, I'll let you know.

A Moment In Time on a Winter's Night

A few weeks ago Karen and I had occasion to drive down the street and past the modern brick building where my DaVita dialysis clinic is housed. I didn't think my grumble was audible, but wives hear everything.

"What's wrong?" she asked.

"Oh, I don't know," I said, the softness of my voice surprising even me. "I'm just thinking about DaVita." More likely, I was thinking about the specter of yet another training session in my immediate future, this one to learn how to move from manual at-home Peritoneal Dialysis to a "cycler," an intricate, elaborate machine that will do much of the kidney assist work for me over an eight-hour period.

"What does DaVita mean to you?"

Long silence. "Weakness. Sickness. Total change of life. Mortality." Without even realizing it, I had lapsed into a ripple of depression.

"I choose not to think of it that way," Karen replied. "I prefer to think of information. And hope.

"And life."

She looked at me, the way your spouse looks at you when she or he realizes they've just created a memory. She reached over and touched my hand.

We drove on into the dark night, but the streetlights seemed to glow a little brighter.

Dialysis Boot Camp

I've driven past DaVita dialysis centers ever since I can remember, but began eyeing them more warily once the diagnosis of my crappy kidneys was confirmed. I think I may even have started slowing down to take a closer look as I passed them. I liken it to driving by the cemetery where your plot is located: you know you're going to end up there eventually, but you're in no particular hurry to visit.

Nothing I imagined about what goes on inside those places, however, could have prepared me for the experience of what I lovingly term "Dialysis Boot Camp."

Because I chose the option of Peritoneal Dialysis (PD), which is self-administered at home instead of at a clinic, my DaVita nurse Diane King wanted to make absolutely certain I could perform the procedure on my own before giving her consent. So for the better part of an entire work week in December – from 9 a.m. to mid-afternoon Monday through Wednesday, a day off Thursday to stop my head from spinning from the overload of information and training, then a four-hour "final exam" Friday at our home – this sweet little woman who had guided me gently through the stages of my renal disease suddenly turned into a drill instructor. She became Sgt. Carter to my Gomer Pyle.

"I've been told I can be a little demanding in these sessions," Diane said softly on the first day. No kidding! It was like going to a job again! No, worse: It was like cramming for a master's degree in Dialysis in one week. She even gave quizzes!

Over and over again she drilled me on the steps involved in dispensing PD: Sanitizing the worktable; the seven essential items required to begin (bag of solution, thermometer, plastic clamps, mask, hand sanitizer, new end caps for my catheter, paper towels); inspecting the solution; preparing the bag; hand washing and sanitizing; connecting and disconnecting the bag of solution to my catheter.

We learned the difference between "sterile" and "clean." Every time I thought I was getting the hang of things, there were new details to absorb. My wife, Karen, and my mother-in-law, Linda, patiently sat through the entire ordeal with me. Whenever I felt as if my eyes were about to glaze over, I looked at Karen, who reassured me with her warm smile and compassionate eyes.

We created a "cheat sheet" so we can review the steps in case we forget something. And on "final exam" Friday, Diane visited our little house on the prairie, inspected the lighting, layout and area where the PD would be performed, and deemed us worthy to fly solo. I've been proud and happy to pass a lot of tests in my lifetime, but few that were actually a matter of life itself.

I can dialyze myself now, thank you. Let the cleansing process begin!