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.

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".

L'chaim: To Life!

By Karen McFarlin
Jim asked me if I would serve as guest blogger today to share the details of our Great Adventure while he continues to try and sneak a peek at his incision. I'm honored, and happy to oblige.
I thought it might be interesting to offer you a timeline of our last 10 wild, wooly, dramatic days.


Tuesday, Nov. 8: My Mom leaves on a dream trip to China. Jim and I move in with Dad to help out with the Wonder Twins, Madison and Emma.

Wednesday: Jim drives to Deerfield, Ill., for three days to give one-man speaking presentations for the company that makes his dialysis supplies.

Saturday: Jim and I, Wonder Twins in tow, drive to Grand Haven, Mich., where we were blessed to attend the wedding of possibly the most beatific couple ever, Andrew & Kathryn Huhn. Ah, young love.

Sunday: I wake up with a sore throat. We drive home with the Wonder Twins, plus six brand-spankin’-new goldfish (originally the wedding reception table decorations, rescued by Jim at the twins’ pleading). I was swayed by the refrains of “Poor, poor Roddy, flushed down his own potty” from that unforgettable film Flushed Away.

Monday: My sore throat morphs into full-blown stomach flu. Five goldfish remain. (R.I.P., Winston.)  Jim drives back home to receive the monthly delivery of dialysis supplies. (If only we could back up that truck now!)

Wednesday, Nov. 16: Mom returns from China. Aunt Marcia arrives for a holiday visit from Ketchikan, Alaska. I emerge from the sick bed.  Four goldfish remain. (R.I.P., fish whose name changed too many times to recall.)

Thursday, November 17: Jim and I finally drive home to Champaign in separate cars after being on the road for nine straight days. Jim goes to Da Vita Dialysis for his monthly checkup with his nephrologist, Dr. Attia, who registers surprise that we haven’t received another kidney call. (This is called foreshadowing.) Exhausted and a bit grumpy, Jim returns to the apartment and ignores his phone when it flashes, “Unknown Caller.” When my phone rings moments later, I answer it. Trish, the kidney transplant coordinator from Barnes-Jewish Hospital, is on the other end. I rush into the living room and Jim is now parked in the bathroom. The call of the lifetime…nearly missed because of a bowel movement. Jim finishes his business – verrry slowly in my opinion – and returns Trish’s call at approximately 3 PM.

3 PM:  Barnes has located a kidney for Jim, and he’s the primary recipient. How soon can we get to St. Louis? “Four hours,” we declare, totally guessing. We praise God that our bags are still packed and in the car from Decatur trip.

3:15: I frantically coordinate logistics with my office. I am scheduled to make two major presentations the next day in Kankakee, Ill., at an all-staff retreat. My brain is stuck in quicksand and cannot find words that I desperately need, such as table, keys and phone.

4:15 – 7:30: We leave Champaign and race to St. Louis. I am furiously making notes and tweaking my presentations to send to my boss. We finally see the Gateway Arch rising over the Mighty Mississippi. In my transplant-addled state, I blurt out, “Honey – the Golden Gate Arch!” and immediately realize that I have mashed up McDonald’s, the Golden Gate Bridge and the Gateway Arch. We laugh and burn off some tension.

7:30: Arrive at Barnes-Jewish Hospital. Wait in Admissions.

8 PM: Admitted. Quickly become concerned that the wheelchair guy, who works here, can’t find the elevator to the 16th floor. I Impatiently show him to the elevator, which is a single turn from where we started. Wonder, fleetingly, if I really might have control issues.

8:05: No rooms at the inn. Miraculously, Barnes received SIX donor kidneys on Nov. 18! Primary and backup recipients for each kidney have filled all available rooms on the 16th (renal) floor. We spend the next 14 hours in a holding room designed for quick assessments with three beds and sliding curtains between them (stable and manger, anyone?). Frustrated that no one is telling us anything, but tempering the frustration with thankfulness. We discuss at length how this time feels different from the non-starter last June. We consider how so many details, great and minute, have worked out this week and conclude this is God’s handiwork at its finest. We start to allow ourselves to hope.

8:05 PM – 10:30 AM: Restless hours. Heavy Facebooking and texting. Little sleep. No food or drink for Jim. Purposely ask family not to drive to St. Louis until we have a surgery time.

10:30: Nurses come in and say we’re going. NOW. Panic begins. Alert parents to mobilize. I stash our worldly goods in a wheelchair and sprint after Jim’s gurney. We rush down to the surgical prep area. The joint is packed and jumpin’. We meet the transplant team together and learn for the first time that the cross-matching is good and Jim is getting a new kidney. We leave nothing unsaid between us and pray together. And then Jim was gone.

12 noon: In the surgical waiting room alone. Massive Facebooking and texting. Prayers pouring out on Jim’s behalf, literally from around the world. I remember that this vast family of faith will uphold us, that God is always faithful, and I relax a little.

12:30: Mandi calls from the operating room. Jim is under. Let the transplant begin! Finally eat lunch in the cafeteria.

1:30: Parents arrive.

2:30:  Mandi calls from the operating room. Nearly finished. Smooth sailing, no transfusions needed.  Flooded with relief. Reality starts to dawn.

3:00: Our pastor, Tony Caffey, his lovely wife, Sanja, and their ridiculously darling son, Alastair, join us from Arthur, Ill. Alastair and I play Angry Birds with a vengeance. This sweet boy distracts me as time passes slowly.

3:30: Dr. Wellen, the transplant surgeon, calls. Jim McFarlin has a perfect little kidney inside him. Going into post-op. Much rejoicing. Many tears. Prayers of thanksgiving. More Angry Birds.

4:30: BUZZ! McFarlin, party of two – Your husband is ready. Tony and I visit with Jim for five glorious minutes! Unbridled joy.

4:35: Return to surgery waiting room. Circle of prayer. Wrapped the donor’s family in prayer and cried for their loss.

5:45:  BUZZ! Mom and I get five more minutes with Jim.

6:30: Quick dinner in cafeteria with Mom and Dad while we wait for Jim to arrive on the 16th floor.

7:45: HALLELUJAH! Jim is settled into his room and is groggy, but lucid. No pain! We spend the rest of the evening pretty much just looking at Jim. My parents eventually leave to enjoy the gracious hospitality of dear friends Eric and Cheryl Schweitzer. I spend the night with Jim, watching him and offering prayers of thanksgiving.

Conclusion: Our new day has dawned and we cannot wait to dash off to parts unknown at a moment’s notice, unfettered by a cycler, heavy solution bags and all the dialysis accoutrements. One day in the future, we hope to have contact with the family of our donor. But today, we want to thank all our friends and family – and many unknown, yet interested strangers – for the prayers, love and support. We could literally feel your arms around us. We love you all.

Psalm 27:13-14 says: I would have lost heart, unless I had believed that I would see the goodness of the LORD in the land of the living. Wait on the LORD; Be of good courage, and He shall strengthen your heart; wait, I say, on the LORD!

Promise fulfilled.

P.S: Goldfish total unknown.

Don't Badmouth the Blessing

Any fool knows better than to look a free horse in the choppers or belittle any blessing, no matter how great or small. But I'm not just any fool.

I'm speeding toward Barnes-Jewish Hospital in St. Louis again as I write this, trying hard to feel more excited and appreciative about The Second Calling.

First, however, I think I need a nap.

The transplant office at Barnes-Jewish called around 3:30 p.m. on Thursday the 17th. They have a cadaver kidney that looks to be a blood and tissue-type match for mine, and I am the primary recipient. How fast can you get to St. Louis? the transplant nurse asked, excitedly.

It's about a three-hour drive from Champaign to St. Louis. And the good news was, we didn't even have to pack our bags. Karen's suitcase, in fact, was still in her car.

We had been on the road and away from home for nine consecutive days. Mostly we were helping my father-in-law, Larry, care for the tempestuous twins, Madison and Emma, while my mother-in-law, Linda, took a well-deserved, once-in-a-lifetime week's trip to China. In the interim, I traveled to Deerfield, Ill., north of Chicago, to deliver two patient presentations at the company that manufactures my dialysis supplies, and Karen and I took the twins with us to West Michigan to attend the wedding of our great good friends Gayle and Walker Parmelee's wonderful daughter, Kate, to the equally wonderful Andy Huhn. (Congratulations, kids.)

In my spare moments, I was ghostwriting one book and editing another. I was homesick and exhausted when we stumbled into our apartment Thursday afternoon. I had just dragged my suitcase over the threshold, willing to trade all my riches for a hot shower, a change of clothes and the chance to sleep in my own bed again.

Then the phone call came. Don't tell me God has no sense of humor.

Now I'm in Barnes-Jewish, waiting to hear if the surgery will be a go or no-go. As we've mentioned previously in these pages, about a dozen things have to go exactly right before a transplant can take place, and medical people always err on the side of caution.

So I've been trying to catch some sleep overnight on a hospital bed (HAHAHAHAHA!) and thinking that if the surgery does go off Friday morning, it'll be at least another week before my head hits a familiar pillow again.

I am thankful for this, really I am. Had the call come one day later, after I'd had a chance to swap out my dirty underwear, I'm certain I would have been ecstatic. This is an event that will affect the rest of my life, but ironically it's a lot like death – it comes when it comes, and you're never quite ready when it arrives, wishing you had just one more day.

Let's just praise God and pass the scalpel, shall we? I'll keep you posted.

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.

Shelter From the Storm

What I'm feeling is something close to survivor guilt. I'm sitting on the king-sized bed in my room at the majestic Four Seasons in Westlake Village, Calif., a room with a chandelier and a mini-bar. I'm scheduled to speak here Thursday morning to offer a "patient perspective" (read: provide the morning entertainment) for Baxter Healthcare's annual national sales convention.

Baxter flew me out to LA and is putting me up at the Four Seasons for two days to give a 15-minute presentation. God bless America.

But back home on the prairie of central Illinois, weathergeddon has arrived. Sleet. Ice. Snow. All together and in various combinations. We're expecting the locusts and frogs by Friday. Chicago is anticipating at least two feet of snow, much of which will be covering my new black 2011 Camaro (love that car) when I return. That's if I can return.

The airports aren't flying. The roads are shut down. The Midwest is closed for the week, frozen into suspended animation. The University of Illinois, where The Wife works, has closed all three of its statewide campuses for the first time in 100 years. This is serious.

I feel like I should be united with my family, battling shoulder to shoulder against the cruel elements, the sporadic power outages, the bone-chilling cold and paralyzing ice. Then I stroll down the richly appointed hallway to the elevator and down to the sushi bar at Onyx, a restaurant in the Four Seasons, where I order a "Hawaiian Volcano," possibly the best thing I've ever put into my mouth, and I break into bursts of uncontrolled giggling. Decatur, Ill., seems very far away.

The "Hawaiian Volcano" sushi roll at Onyx in the Four Seasons Westlake Village, Calif., maybe the single best thing I've ever tasted.

I came so close to not making it here at all. When the dire weather predictions began filtering through last weekend and Wednesday, the day I originally was scheduled to fly out of O'Hare, was targeted as the day all heck would break loose, my family encouraged me to get out of the house and drive to Chicago as early as I could on Monday. (They said it was because of the oncoming storm, but now that I think about it....) The people at Baxter's travel department, so incredibly helpful, understood my concern and paid the change fee to book me on an flight early Tuesday morning.

Which, of course, I missed.

I stayed at a Holiday Inn Express near the airport, but missed my shuttle ride by seconds. By the time I got to O'Hare 30 minutes later, the best United could do was put me on standby for the next flight at 10:30 a.m. I had a little breakfast, went to the gate and waited. And prayed. And hoped.

The 10:30 flight, the update screens said, was completely sold out, and I was seventh on the standby list. Passengers were rushing the gate like U.S. Embassy workers getting out of Egypt. In my mind, I was contemplating the best place to have lunch at the airport.

Then, at the very last moment, I heard, "Passenger McFarlin!" I grabbed that boarding pass like it was a winning lottery ticket and dashed to the last seat on the 747. God is good, all the time. I was meant to be here, I guess. I swear I could see the storm clouds moving in as our plane was climbing above them.

I don't necessarily feel pressure, but I'm thinking I need to be really good Thursday morning to justify Baxter bringing me here and out of the frozen tundra. I'm going to try very hard not to giggle.

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.

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.

Driving to be the Best

Learning the ordering process with "Lori from Arthur, Ill.," my monthly connection to Baxter and the best customer service rep ever.

I got to see George's locker.

Of the mountain of wonderful memories I have from my two-day visit to the Baxter Healthcare Corp. in Waukegan, Ill., in May with Karen (more about this later), one of the moments that made me giddiest was sitting in the staging area where George, my Baxter delivery driver, receives his marching orders before delivering lifesaving supplies to his regular customers. Like me.

I'm not sure why, but something about being in his "office," so to speak, made me somehow feel more connected to this burly, friendly fellow who arrives each month like clockwork, artfully dodges the low hanging wires on our street as he backs his ginormous semi-truck down to my house, carts dolly after dolly filled with dialysis equipment into our basement, then disappears until the following month.

George is like my Lone Ranger of healthcare. "Who was that fast man?" I think to myself after he departs. "And I wanted to thank him."

Being so near his locker, I was tempted to slip a note inside it, like we used to do in fourth grade.

Dear George,

Do you like me?    [ ] Yes       [ ] No           Pick one

Do you like delivering supplies to my home?   [ ] Yes      [ ] No

When I saw George during last month's delivery, he told me he almost never goes into his locker. So I probably never would have known if he likes me or not. Note to self: Don't follow your impulses.

My introduction to the giant molecule sculpture in the lobby of Baxter's corporate headquarters in Deerfield, Ill. Did you know this thing spins?


I have met so many amazing, fascinating people on this journey since my kidneys started heading south. There's Lori, the Baxter customer service rep who hails from Arthur, Ill., near my current residence in Decatur, and most often takes my monthly supply order. She is so personable yet professional, and we've become such tight phone pals that I literally shrieked with joy and raced to hug her when we finally met in person during my presentation to the Baxter corporate staff. And Trisha Daab, the senior marketing manager for Baxter's renal division who, with Yvette Derbas, arranged all the details of our trip and made the experience both memorable and thoroughly enjoyable. Karen and I have a "couple's crush" on Trisha. What a dynamo.  

There's Dave, a retired telephone repairman from a tiny town in Idaho. We've never met, but we keep in touch quite often through this blog and Facebook. He's been on Peritoneal Dialysis about a year longer than I and has really struggled with it. I hope we're providing mutual support to each other; I know he's been an inspiration to me. (You hang in there, Dave; we're gonna get through this together; you're in my prayers every day.)

But one of the people who has rocked my world the most is Mr. Paul Collins, who recently celebrated his 17th year as a Baxter delivery driver from his base in the Dallas-Fort Worth area. Like Dave, Paul and I have never laid eyes on each other, but he is a walking encyclopedia on dialysis supplies, equipment and kidney disease, and volunteered to share his wisdom with me. I don't know it for a fact, but I suspect Paul may have been the one to recommend this Just Kidneying blog to Baxter and set the wheels in motion for my visit to corporate headquarters.

Thinking inside the box during a tour of Baxter's packaging and testing labs.

Paul is a warm and wonderful fellow. I envision him like Tom Bodett, the author and hotel radio pitchman, but over the years thousands of patients have left the light on for him. He wanted to be a schoolteacher before his brother, also a Baxter driver, introduced him to the business. "I thought, 'I'll do that for a year or two, you know," he reflects with a laugh. Instead, he's spent his career teaching people how to use the equipment that can improve and save their lives, which is probably more significant.

He is the only driver in his region and knows every dialysis nurse in the area, so by the time he delivers to first-time patients he's been talked about so highly that he arrives like an old family friend. "All the levels of dealing with any tragedy in your life, there's denial and anger and so forth," he says. "When we show up for the first time, we never know what stage the individual's going to be in. Some people, they go to the doctor not knowing there was anything seriously wrong with them and they're on dialysis two days later, so it's hitting them like a ton of bricks."

Paul sees people in all stages of health, and because kidney failure is so often linked with diabetes or other serious illnesses, he often reminds me that "if you have to lose your kidneys, losing them over high blood pressure is a good way to do it." In other words, I'm in pretty good shape, relatively speaking.

He keeps in touch with his patients long after they receive their kidney transplants. Paul has great stories to tell about patients who invite him to stay for dinner, or his customer who worked for the mob, or the husband he caught in flagrante delicto with the family maid while delivering his dialysis solution. "I got a huge tip," he says, laughing. But the most amazing gift he was offered, he never accepted.

"There was a guy I delivered to, a real rough character, who would take his horse out and just stay in the mountains camping for two, three months at a time," Paul recalls. "Suddenly, he's on dialysis and stuck in the house, not really fitting in with the rest of society. 

"After several months he got real comfortable with me, and he let me know he was a hitman. That’s what he’d done his entire life. He had cancer, and the doctors only gave him a few months to live. He liked me so much, he offered to take care of anybody I needed taken care of. He said, 'I don’t have anything to lose. Even if I get caught, I’m getting ready to die.' So he was ready to kill somebody for me. Gives you kind of a warm fuzzy feeling." 

Now that's what I call customer satisfaction. Imagine if somebody had done something to really cheese off Paul during that time.

Like sticking some stupid note in his locker, for instance.

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.

The Fool on the (Capitol) Hill

I cannot tell you what a thrill and honor it was to return to my home state of Michigan last week and speak at the State Capitol in Lansing as part of the annual Diabetes and Kidney Day ceremonies Wednesday, April 28. Many and sincere thanks to Sally Joy (isn't that a great name?), public policy consultant for the National Kidney Foundation of Michigan, who extended the invitation, and to all those who worked so tirelessly to make the day of advocacy and awareness such a ringing success.

I must admit, I was a bit off my game for this event. I have gained so much weight over the past year, a combination of bloat from my Peritoneal Dialysis fluid exchanges and not being able to exercise as I'd like because of post-gout weakness in my feet, that I discovered my favorite suits no longer fit. I have always been a firm believer that clothes make the man and bolster one's confidence for public speaking. On this day they made me less like Cary Grant and more like Oliver Hardy.

In the main this is a day for spirited and heartfelt lobbying. Michigan residents who suffer from diabetes- or kidney-related illnesses and the people who work on their behalf go face-to-face with state senators and representatives to plead for no further budget cuts in programs that improve prevention and management of these terrible diseases. Everybody knows the state of Michigan is flat busted, and every lobby has its own ox to gore, but state funding for kidney and diabetes programs has been cut from $4 million last year to $2.5 million this year, with further cuts proposed. We would like someone else's ox gored, please.

Another topic of great concern is passage of Michigan House Bill 4878, the Care for Students with Diabetes Act. Children with diabetes require management of their condition 24-7, yet Michigan has the second-worst ratio of school nurses to students in America. Parents of kids with diabetes told alarming stories of having to move their children to different schools and make frequent trips from their workplace daily because of teachers and administrators who wouldn't accept the responsibility of caring for their kids and wouldn't let the kids manage their blood glucose level themselves. Bill 4878 would ensure that students who are capable of self-managing their diabetes be allowed to do so and demand that someone on every school's staff be trained in providing routine diabetes care, but to date the bill hasn't received so much as a hearing in the legislature.

Geez. It's for the kids. Write your representative and politely ask, "Whuzzup wit dat?"

The great irony to me is not that I was in Michigan advocating support for diabetics and fellow kidney sufferers even though I no longer live in Michigan. The irony is that I might still be living in Michigan if my wife Karen's superior health insurance hadn't prompted me to relocate to Illinois for coverage. When Sally Joy read my first-person story, "Best Foot Forward" in HOUR Detroit magazine, she invited me to speak despite my Land of Lincoln mailing address. While in Lansing, I sat next to a Grand Rapids attorney, Greg Prasher, who kept saying I looked familiar. Turns out he was the catcher for the softball team I played on when I worked for the Grand Rapids Press 30 years ago. More irony, "small world" variety.

I won't bore you with the entire transcript of my talk – I'm not sure I'd want to read it again myself – but I will say this is the first time I've been to Lansing without catching so much as a glimpse of Sparty. I remember my first visit here several years ago, working on a cover story for the Eastern Michigan University alumni magazine about state legislators who were EMU grads. I stepped inside the Rotunda, pushed the elevator button to go upstairs for my first interview, the doors opened and – there, standing inside the elevator in full green-and-white battle regalia, was Sparty! What does one say to a college mascot in an elevator, anyway? I do remember he wasn't much of a conversationalist.

Some excerpts from my Lansing remarks:

"I drove the 400 miles from central Illinois to be here with you today because Sally is very persuasive, and because I feel that passionately and that strongly about what you're doing here today."

"It's not easy to walk up to a state senator or representative, no matter how passionate you might feel about an issue and say, 'HEY! I want to talk to you about this! Diabetes and renal failure are important, and we're not spending enough on education or awareness or prevention to impact our population.' But you have done it. You've come here today, you've grabbed them by the collar, you looked them in the eye and you told them what you had to tell them. You should give yourselves a round of applause."

"I have learned so much today. I have been inspired. I feel like the man with no shoes. It's pretty easy to get down about your condition and feel sorry for yourself, until you hear some of the stories of overcoming and triumph today from people who have endured so much more than you have."

"Having this disease impacts every facet of your life. It has changed the way I eat, the way I bathe, the way I dress, even the way I sleep."

Speaking of eating, I couldn't resist the opportunity to include a playful, impromptu jab at my hosts after walking through the lunch buffet line at the House Office Building. "I couldn't help but think, 'My dialysis nurse would have a heart attack if she saw me here!'" I told the audience, many of whom knew where I was going. "All this cheese and tomatoes and spinach salad and black beans and lunch meat, all these things I'm not supposed to eat. You know, there is a pro-kidney diet, and I explain it to people like this: Anything you used to like...you can't eat that anymore. I did, however, enjoy the onions and green peppers."

I got a laugh, but I also overheard Sally Joy talking to the head of the dining service after the event and suggesting that in future Diabetes and Kidney Days, they may want to review the menu a bit more carefully.

That was the greatest irony of all.

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.

Going Through the Change

Be it underwear, socks or dialysis nurses, I am highly resistant to change. So it was a morning of great trepidation and personal upheaval recently when two events that signaled a major transition in my life occurred back to back: Diane King, my beloved kidney counselor, confidant and guide, agreed to meet me for a farewell cup of coffee the hour before I was scheduled to be examined by her replacement, a nurse named "Mar."

"Mar?" Sounds like something you do to a coffee table, not to a patient.

Anyway, Diane and her husband, Bruce, were packing their lives into a U-Haul and preparing to move to California and an uncertain future. (She told me the State of California had not yet accepted her license to practice nursing, so she wasn't sure when she might begin working there.) Yet she still made the time to drive downtown and meet with one of her patients at his insistence just so he could officially say goodbye, which should tell you all you need to know about the kind of person Diane King is.

She arrived at the coffee shop on Main Street with Bruce in tow. What an adorable little couple they are! They're the same height, they've begun to resemble each other the way married couples do after years together – they even sound the same! Ah, love.

Because I have referred to her often as my AWWOE (Angel Who Walks On Earth), I thought it fitting to buy her the gift of a small ceramic angel, holding a small circular sign reading "Thank You," as a token of my deep appreciation. I know, it'll just take up space and gather dust on her new office desk, but it's far more practical for California than the full-length mink coat I wanted to buy her.

      Diane opens the wrapped Haines and Essick gift box as Bruce looks on.

Angelic couple say hello to their little friend.

Then they said goodbye to their other one. We spent a delightful hour together. I'll never forget Diane. She taught me how to take care of myself and guided me through the emotional upheaval of dealing with this miserable disease. Then, with a lump in my throat and fear in my heart, I drove my Chevy at a snail's pace through the downtown streets to the DaVita office for my first examination by "Mar."

Mar. 

"Mar," as it turns out, is short for Marion. As you can see, she's quite attractive, and she retains the slightest hint of an accent from her native Germany. (Much to my disappointment, she does not wear a monocle.) 

"I need to tell you right up front," I said upon our introduction, "I'm sure you're a very nice person and an experienced, talented nurse. But it may take me a while to warm up to you because I was very close to the person you're replacing and...I'm...just going to need some time."

(In my mind, the pipe organ is reaching a dramatic crescendo.)

Mar was extremely understanding, kind and efficient. However, she may not be Diane's permanent replacement: she explained that her home office is in Springfield, and she's filling in at the Decatur office until a new nurse can be hired. (If you're looking for a fulfilling career, there is an ongoing shortage of dialysis nurses. The job features great one-on-one contact and the opportunity to teach and make a real difference in the lives of patients as well as their families.)

So for the moment, at least, my new full-time kidney confidant has yet to be determined. Maybe it'll be Mar. I hope so. But maybe not. No one knows for certain.

Change, they say, is good. What do they know?

'Cathy' Was Too Easy

Funny thing about a dialysis catheter: Once you get used to it, grow accustomed to the sight of a plastic tube sticking out of your belly like a garden snake and the ritual of taping it against your body every day, having one becomes second nature.

It's like having a sidekick. Or better yet, a secret weapon. Once a day I unleash it from its hidden location, attach it to a source of power and rejuvenation (in this case, the peritoneal dialysis solution), open the valve and let the healing waters surge through my body. I suppose I should shout something dramatic when the connection takes place, like Billy Batson yelling "Shazam!" when he transformed into Captain Marvel. I can hear it now: "Time... to...DIALYZE!"

So one night at the dinner table, the girls, Emma and Madison, suggest we give it a name. (How do these mealtime conversations start, anyway?) We do some preliminary brainstorming. "Cathy the Catheter" was quickly rejected: too easy, and I didn't think my wife, Karen, would appreciate the name of another woman literally attached to me.

We tried variations of "Man Cub," Karen's pet name for me. (Long story.) Nothing clicked. Maybe some species of snake? I was partial to "Black Mamba" myself, but was fearful of being mistaken for Kobe Bryant.

Several other proposals failed to produce that "Aha!" moment, so I took the request to the people. That is, the 500 or so people who are brave enough to admit to being my friends on my Facebook page.

I received more than a dozen excellent name suggestions – many of which I cannot repeat here in polite company – but one stood out from the rest. Because of my many years as a television critic (a function I still perform for The Metro Times in Detroit; you can read a column here), and because a catheter is such a personal, individual device, it was voted that its name should be:

YouTube.

So YouTube it will be, now and henceforth. I'm expecting a call from the attorneys any day now. I guess you could call it "cath-arsis."

Or not.

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!

I'm Beautiful, Inside and Out

Recently Karen and I returned to Carle Hospital in Urbana, IL, for a followup visit with Dr. Michael Neuwirth, the brilliant surgeon who performed the catheter insertion for my dialysis. I know he must be brilliant because every health care professional I've met with since the operation – and I've met with a mess of 'em – refers to him and his work in hushed tones of reverence. That makes for one contented patient.

Actually, I didn't meet with Dr. Neuwirth in person (brilliant people are often busy, too), but with his physician's assistant, who asked to remain nameless here for professional reasons. Henceforth we will call her Unidentified Physician's Assistant, or UPA, which is not to be confused with "Yooper," the slang term for a native of Michigan's Upper Peninsula. Which, as it just so happened, is where the UPA was from.

The UPA was extremely pleased to see that, as she told us, my surgical wound showed no evidence of dehiscence, which from this point on will be our Word for the Day.

(de • his • cence, (de-HISS-cents), n.: a bursting or splitting along natural or sutured lines; a splitting open. Separation of the layers of a surgical wound. "We may have to suture him again, Al; the blood indicates his incision is showing signs of dehiscence.")

She didn't stop there, however. UPA went on to gush over how beautifully the edges of the incision were coming together, and that the healing process looked "awesome." By my count, she used the word "beautiful" or a variation seven times during our brief visit, along with "awesome," "perfect" and "excellent" once each.

Well, let me tell you, it's been a very long time since any person of the female persuasion looked at me and said "beautiful" that many times, even if it was in regards to the two-inch slit in my belly.

Leaving the hospital that day, I kept hearing the voice of Natalie Wood in West Side Story sounding in my head: "I feel pretty, oh so pretty, I feel pretty and witty...." UPA made me so proud, I could have just dehissed.

The 1.5, 2.5 and 4.25 Percent Solutions

Earlier this week – even earlier than promised, actually, and how often does that happen these days? – a blue-and-white Baxter delivery truck about the length of Toledo pulled up in front of our little house on the prairie and dropped off my first supply of "Dianeal, Low Calcium, Peritoneal Dialysis Solution with 1.5% Dextrose" (let's just call that PDS for short) I'll be using for my manual daily dialysis exchanges that begin this month.


Baxter, I'm sure you don't know, is "a worldwide leader in providing lifesaving products and services for patients who suffer from kidney failure." I know this because Baxter told me so on its self-produced instructional video, "Going Home With Confidence." The Baxter delivery driver could not have been friendlier or more informative, which is important when some burly trucker you've never seen before wheels into your house with 13 cases of sugar-water-in-a-bag.

(The video says to make sure you check the driver's identification before letting him into your home; I think an 80-foot tractor trailer pulling up to your front door with "BAXTER" emblazoned across the side would be a pretty strong hint that the guy's legit.)

And yes, I said 13 cases of solution – which, since my dialysis cycle is beginning in the middle of a month, is only a partial shipment! The driver told me a typical delivery in months to come should average as many as 30 cases! Thankfully, we have a small nook just inside our front door and next to the fireplace that I cleared out beforehand to make room. But imagine trying to find space in your place to accommodate 30 new packing boxes of anything.

                   What 13 cases of dialysis solution looks like in a corner.


Each case contains a half-dozen bags of fluid, 2,000 millileters apiece, about the length of a football and as heavy as a half-gallon of milk. Every bag is encased in a larger plastic bag for protection and includes its own pair of connecting tubes (one for fluid in, one for fluid out) and drainage bag for the liquid's final resting place. It's a modern miracle of in-home medical technology.


Not all the bags are mixed with 1.5 percent dextrose. Some have 2.5 percent, others as high as 4.25 percent. My nephrologist, Dr. Attia, will determine which concentration is best for me as my condition changes. As the manual exchange program calls for pouring in and draining out four of these puppies a day, the supply is likely to disappear quickly.

                                     The bag inside the bag.


Here's the kicker for me: the DaVita office arranged for the first home delivery, but I have to schedule every subsequent shipment myself. That will mean calling Baxter at least two weeks before I need supplies, making an order and keeping a running inventory so I know what I have in stock and what I need to request. Any lawyer, accountant or tax preparer I've ever had in my life is laughing uncontrollably right now over the idea of me keeping accurate records of anything.


I think the empty bag isn't the only thing that will be draining.

A Precious Gift, A Sacred Trust

On Monday I had a long introductory phone conversation with Diane Herche (pronounced Herky), the dialysis coordinator for our insurance carrier, Health Alliance. (And may I say here that I think Herche is one of the coolest surnames I've heard in an eon. I'm strongly considering changing my name to Jimmy Herche.) She is not to be confused with my dialysis nurse at DaVita, Diane King. I'm beginning to think everybody in the kidney game has to be named Diane.

My wonderful wife, Karen, has done a phenomenal job taking the point to coordinate our coverage, satisfy co-pays and ask questions of the appropriate people when we get lost in the insurance jungle, but this was my first time actually speaking to our carrier's representative voice to voice.

Diane is an extremely engaging woman and our conversation soon danced into a variety of kidney-transplant related subjects. With Health Alliance's approval, last week I called Barnes-Jewish Hospital in St. Louis, one of the Midwest's leading transplant centers, and said, "I want to be considered for a kidney transplant, please." (I was told I had to call Barnes personally and make my request with precisely those words in order for their evaluation process to begin. It's like a game show: "Oh, we're sorry, Mr. McFarlin, you didn't phrase your application in the proper form. What do we have as his consolation prize, Johnny? A can of kidney beans! Thanks for playing! And who's our next lucky recipient?")

We have to make sure that Health Alliance is on board with our decisions at every turn. As I explained to Diane, the reason I had to remove myself from the transplant waiting list in Michigan is that my previous carrier refused to pay for the monthly blood screenings that are required to remain under consideration for a donor organ once I moved out of state, and the cost was too prohibitive – more than $300 a month, as I recall – to foot the bill ourselves.

I told her I wanted to ensure that Health Alliance would pay for the blood tests, do whatever they could to help me get my accrued time on the Michigan waiting list transferred to Illinois and approve all the costs of a potential transplant at Barnes even though the hospital is out of state. Her confident voice and obvious experience with the system quickly reassured me that everything would be all right whenever a donor kidney becomes available – possibly within 1-2 years, as opposed to the 4-5 years estimated for Michigan. Amazing how states without motorcycle helmet laws have shorter waiting periods!

What struck me most about our telephone chat, however, was Diane's closing comments about aftercare following a transplant. She stressed that everything I'm doing now – taking my medications religiously, limiting my diet, keeping regular appointments with my specialists – becomes even more imperative after I receive a new kidney.

After all, she noted, while a replacement kidney isn't a cure for kidney disease, it is a gift of life and improved health. They could have given the kidney to any suitable donor, she said; when my time comes at the top of the list, my transplant team wants to know that they've made the right decision and I will respect and maintain the organ I receive.

I never thought about the process quite that way before. When I'm chosen – if I'm chosen – a lot of people will be expecting me to protect their investment in my health. Part of another person's body is going to be entrusted inside me to prolong my life. It's an honor, a privilege – and one huge responsibility.