Friday, December 17, 2010

Who You Callin' Ugly?

The Decatur Ad Club, which I joined last year to increase my local business connections and get out of the basement occasionally, held its first "Ugly Sweater Christmas Party" this week. Because I wanted to be perceived as a participating member of my new group and share in the holiday spirit, I decided not only to attend, but to jump into the competition with both feet. Or sleeves.

I rummaged through three local thrift shops looking for potential knitted nightmares, but came up empty. (I subsequently learned that Ugly Christmas Sweater Parties have become such the rage that you need to start shopping for appropriate garments around Labor Day or pay outrageous last-minute desperation prices to online merchants. To my surprise, my dear friend Laura Foti Cohen has a Web site/blog devoted to ugly Yuletide sweaters and similar follies at hellishholidays.com.)

I shared my disappointment with The Wife upon returning home, and probably shouldn't have been surprised by her response. "Oh, honey, you don't need to go shopping for ugly sweaters," Karen cooed. "You already have at least one great candidate in your closet."

(As infuriating as it is to have your wife call out anything in your wardrobe as hideous, men take note: women will almost always think any clothes you bought without her guidance or held over from previous relationships are pitiful and offensive.)

She dashed into the closet and hauled out my "rainbow sweater," a multi-striped, hand-me-down crewneck I usually wear around the house for comfort's sake. "This is the one!" she declared, to my chagrin. Then she cheerfully set about making it even more gruesome, if that's possible.

She sewed a few old Christmas ornaments around the neck of the sweater, including a curiously effeminate little elf she said was one of her earliest childhood holiday decorations. Then, for the coup de grace, Karen attached a string of battery powered Christmas tree lights around the sweater's collar with a remote control switch that could conceal under my clothes to switch on, off or on flicker mode. (The preferred setting, of course.) I was girded for battle.

Because she'd now spent time and care in the preparation, Karen became invested. "I hope you do well, honey," she said, coupled with a facial expression that added, "Don't you dare come home without winning this thing."

The party-slash-contest was held in the library room of the Decatur Club, the city's hoity-toity downtown meeting address. I took a cautious look around the room. The competition was scattered about, and potentially formidable, but I felt confident I could compete. (Some of the challengers are pictured below.) I flipped the switch on my ring of necklace lights to "flicker."

Illinois Congressman Bobby Schilling, who was attending an affair next door, agreed to come over with two of his colleagues and serve as judge. He was wearing a Christmas tie that, had it been knitted and sprouted sleeves, easily could have given me a run for the money.

Schilling to me: "That is one damn ugly sweater."

Me to Schilling: "Thank you, Congressman. And the same to you."

Schilling and his associates conferred, votes were cast and – I WON! I WON! I received a small framed plaque that now holds a position of prominence on our mantle, a chocolate Santa (no jokes, please) that I gave to our 10-year-old, Emma, a PEZ dispenser (don't open it – collector's item, you know) and a miniature ugly sweater that supposedly doubles as a decorative bottle warmer.

Best of all, I got to feel a little bit closer to some people here in Decatur, my address now and for the foreseeable future, with the holiday spirit.

And I got to go home that night.


 I didn't think this one was particularly "ugly," just interesting. Or should I say, "festive"?

I thought this was my stiffest challenge, especially with the antler accents.

         Ladies and gennemen, THE WINNAH!

Friday, December 10, 2010

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.

Friday, December 3, 2010

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?

Monday, November 8, 2010

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.

Friday, November 5, 2010

Spreadin' the Good News

I arrived promptly at 8:45 a.m. to my DaVita clinic in downtown Decatur to begin my first day as a dialysis counselor. Yes, that's what I said. (Or rather, wrote.)

My lovely and dynamic new dialysis nurse, Leigh Ann Michael – I know, I've been changing dialysis nurses faster than Illinois changes politicians, but more on that later – is on a mission to get more patients to consider Peritoneal Dialysis (PD), the type of therapy I use and recommend. According to some statistics, less than 10 percent of all dialysis patients are even aware that the PD alternative exists, and Leigh Ann asked if I would join her for a morning walkaround in the hemodialysis clinic to talk to the patients one on one about their treatment options. Leigh Anne said I look so good and relatively healthy for a guy with Stage IV kidney failure, she wanted me to accompany her as Exhibit A on the potential benefits of PD.

I was the demonstration model.

Shawn Steele, a rakish young sales guy from Baxter Healthcare's renal division in St. Louis, drove in with a dialysis cycler machine identical to the one I use (see photo) along with accompanying bags of dialysis solution and other accessories. If you're going to do show and tell, you need to have something to show – besides me, of course. Shawn wrestles alligators in Florida for fun and has photos to prove it, so I felt pretty certain patients would hang on his every word no matter what he brought with him.

   The Baxter "Home Choice" Automated PD System (aka, "The Cycler")

However, Shawn chose to stay in the background and do his PD evangelizing from the lobby while Leigh Ann and I strolled the clinic. Shawn kept referring to me as "our superstar," and while I couldn't help but agree with him, I knew what he really meant. When you're trying to persuade anybody to consider a major change in something as personal as medical care, it helps to have someone who's actually living with the same condition to provide some first-person testimony.

Since all but one of the dozen patients in the clinic that morning were African American (a sad reality), I remarked, only half kidding, "It is a good thing I'm going along with Leigh Ann. Anytime black folks see a white person pushing a cart, smiling and stopping to talk to us, we know they're trying to sell us something. Our first response is to say no."

Unfortunately, even with my "superstar" assistance, that's pretty much the way it went in the clinic that day.

Having thoroughly researched my options at the beginning, I chose PD because of the independence and feeling of self control it offers. Yes, it's a daily procedure being attached to the cycler for eight hours at a stretch as opposed to going into a clinic three times a week for hemodialysis, but knowing myself as I do, I knew two things would happen if I was on hemo:

1. I would be late for at least one appointment a week and either miss my treatment or have it delayed.

2. The thought of having a big needle stuck in my vein and seeing my blood sucked out, cleansed and put back in my body three times a week would cause me to either throw up or pass out. Probably both. At once.

With PD I dialyze when I want – overnight while I sleep, if I prefer – without needles, leaving home or suffering the wild swings of energy and mood that accompany hemodialysis. I realize some patients simply may be too weak or sick to manage dialysis on their  own, but I think many people who are familiar with PD prefer hemodialysis (and I'll probably get in trouble for saying this) because they're either scared or lazy. PD requires maintaining an inventory of supplies and setting up and tearing down the cycler every day. It's way easier just to show up at a clinic, settle into a padded reclining chair and let nurses and technicians do all the work. Plus, some patients fear they'll do something wrong on their own during the PD treatment, contract an infection and wind up much worse than they already are.

Among the patients Leigh Ann and I spoke to, the word "infection" seemed to be repeated like a codeword meaning, "Not interested; leave me alone."

"Wouldn't you prefer to do dialysis without needles?" I would ask. "At home? On your own schedule? Without having to come into the clinic?"

"Infection," came the reply.

"Yes," I answered, "infection is always a possibility. It is with hemodialysis, too. But as long as you don't blow into your catheter tube, let your dog lick it or do something else incredibly dumb, your chances of infection are not that great."

Didn't seem to make a dent in the patients' decisions. In hindsight, I think we might have been much better off talking to the hemo patients individually, before they began their treatment, instead of all together in the clinic. These people usually have the same appointment times and get to know each other over the months. I don't think any of them wanted to be viewed as breaking away from the herd, or leaving the old gang behind.

The saddest case for me was a gentleman who said he had been on PD but had to have his catheter removed. He couldn't have it implanted again because scar tissue prevented the procedure. "I hate hemo," he said. "I miss PD every day. I'd go back on it tomorrow if I could."

As if to prove my group-think theory, while we were struggling in the clinic, Shawn was making converts in the lobby. Two people, a man and a woman, both said they wanted to switch to PD and asked what their next step should be. The man was a street hustler who sold purses and other women's accessories from the trunk of his Cadillac. His third weekly hemo appointment fell on Saturdays, he said, "and it messes with my hustle."

Two out of 14 patients sold. Not great, but not bad. I was so overjoyed, I went out to the parking lot with my man and bought a handbag for Karen from his trunk. It's a red Jimmy Choo original. Really, it is. She loves it, too.

Friday, October 29, 2010

Regaining My Religion

I have grown lazy. Well, maybe not lazy so much as complacent.

Where my daily Peritoneal Dialysis (PD) sessions are concerned, anytime a person does the same thing seven days a week for the better part of a year, it's way too easy to start cutting corners. Maybe I don't do the full-out, 45-second, official DaVita Hand Wash every time before beginning my fluid exchange (see "Washing My Hands of Everything" from last February), or wear a surgical mask when I want to begin dialyzing quickly. Hey, what's wrong with just holding your breath, huh?

Well, I received a double-barreled dose of reality and reprimand today during my monthly checkup in Champaign with my kidney specialist, Dr. Abdel-Moneim Attia. We went over my bloodwork results for the previous month and Dr. Attia beamed at how well I continue to respond to my PD regimen. All my significant markers – calcium, potassium, phosphorous, albumin – are at or above their recommended levels. My mountain of medications are in no need of adjustment. "You are doing very good," the doctor praised in his warm accent. "There is nothing I need to do for you."

Or so we thought. Since this appointment basically had turned into a conversation, my lips got loose and I let it slip that I'm probably not as cautious or meticulous about my dialysis preparation as I was when I first started. Got skill and experience now, you know.

Dr. Attia looked at me aghast. He then commenced to regale me with Halloween weekend horror stories about patients who were doing spectacularly on PD until they got cocky and stopped washing their hands or using surgical masks and hand sanitizer while preparing to dialyze. "There are more germs on your hands than anywhere else on your body," he chided, "and you're using them to prepare solution that will go inside of you."

That does sound right, I thought sheepishly.

It only takes one nasty microorganism to get inside your peritoneal lining, he warned, and within five hours you've got a million of his cousins bouncing around your belly. Excruciating stomach pain, vomiting and diarrhea typically follow with peritonitis, he said; the infection won't kill you, but you'll wish it would.

And danger can come from the unlikeliest of sources, Attia added. He had one patient, a young woman who lived alone, who was performing splendidly on PD until she decided she needed a companion. She got a kitten. "The cat chewed through the tubing, and its germs got into the solution," he said. He shook his head. "And she was doing so well...."

"All right! I get it! I won't be sloppy again!" I squealed. The good doctor had worn me down. When you've got a catheter embedded inside you, tales of how it can go bad and force you to adopt the dreaded vampire-blood-sucking hemodialysis instead are scarier than any ghost stories I'm likely to hear this Halloween. Or ever.

I'm wearing my surgical mask while I write this. Don't want to accidentally breathe on my hands while I'm typing, since I'll be doing my daily exchange soon. Don't worry, I'll become less militant in a few weeks or so, but I have no intention of backsliding again. Like the U.S. Marines, when it comes to dialysis exchanges Semper fidelis will be my motto from now on.

Always faithful.

Tuesday, August 31, 2010

Could This Be Called a Cat-astrophe?

I've just returned from a successful and intense week in Detroit, a trip that included discussions on ghostwriting a new book, interviews with the cast of the ABC fall cop drama Detroit 1-8-7 and spending quality time with my writing mentor over a lunch of fried chicken. For some reason, however, every day in was in Motown, I couldn't seem to get Carolyn Krieger-Cohen out of my mind.

You may remember Carolyn from previous episodes. (If not, you can glance through my November 2009 entry "Detroit" here.) She is the extremely gifted and dynamic PR professional who owns CKC Public Relations in West Bloomfield, Mich., a Detroit suburb. I've known her since she did promotions for local radio stations in the '80s while I covered radio for The Detroit News, and we've maintained a wonderful friendship over the years.

                                                                        Carolyn and me.

I thought my preoccupation might be due to the fact that we missed connecting with each other during my previous trip to Detroit, or because her office is less than four miles from the West Bloomfield condo where I reside when I'm working in town. Whatever the reason, despite my vacuum-packed schedule, I kept having the overwhelming sense that I needed to see Carolyn in person before I left the city.

Finally, I could stand it no longer. On the morning I was leaving to drive back to Illinois, I called her office.

She answered her own phone on the first ring, which should have told me fates were at work.

"It's Carolyn."
"Are you in this morning?"
"Yes."
"Are you free?"
"Who is this?"
"It's McFarlin. I have to see you before I leave town."
"Yes, you do. And I know why."

Oooo-weeee-ooooh.

Let me mention right here that Carolyn Krieger-Cohen is one of the most...oh...transcendental people I've ever met. She claims to communicate with the dead, one of her more prominent clients is the acclaimed psychic Rebecca Rosen, who does the same, and Carolyn possesses a calming and intuitive spirit. She just seems to know things.

I arrive at her office, beaming and breathless, 10 minutes later and leap into the chair opposite her desk. "I know why you've been thinking about me," she announced.

"This is the weirdest thing, and you probably won't believe it. But just this week, my cat was diagnosed...with chronic kidney disease."

I didn't know whether to laugh out loud or express somber sympathy for a beloved family pet. So my mouth compromised by dropping open.

She explained that the aging house feline, Jaac, had been acting strangely and urinating constantly, so it was rushed to the vet hospital. "And $3,000 later," she said, it was determined that kitty's kidneys were starting to go.

"Can cats undergo dialysis?" I asked.

Not exactly, Carolyn replied, but she and her husband, Jason, were instructed to give the cat injections of liquid solution on a regular basis to balance its rapid loss of fluids. Holding down your dear house cat so you can stick needles into it? "It didn't go too well," Carolyn deadpanned. "We had to go back to the clinic so the vet could do it."

Well, that just seems silly. Couldn't they just install a cat-heter?

Friday, July 2, 2010

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.

 

Saturday, June 5, 2010

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.

Friday, May 28, 2010

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.

Tuesday, May 4, 2010

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.

Monday, April 19, 2010

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.

Tuesday, April 13, 2010

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?


Tuesday, March 30, 2010

Diane, We Hardly Knew Ye

My beloved dialysis nurse, Diane King, has been trying to reach me all week. We've been playing telephone tag, deluxe edition. I naturally assumed she was calling to congratulate me on my recent lab results. My potassium levels were deemed "Very Good," and I received the coveted gold star for my outstanding phosphorus report!

If only that was the news Diane had called to discuss.

"I just wanted to let you know that I'm leaving DaVita," she announced, in her ever-cheerful lilt.

Gasp.

"And Illinois."

WHAT?

HORRORS!

Clearly I was not hearing the words I was hearing. My own personal AWWOE (Angel Who Walks On Earth), the woman who literally took me by the hand and taught me how to dialyze myself, who came to my home to prepare me for the process – who has drawn my blood and analyzed my urine, for goodness sakes (and there aren't many ways you can get more personal than that!) – my lifesaver woman is announcing that she's leaving me – uh, leaving town?

Say it ain't so, Lady Di!

                                             Diane and me, in happier times.

It's so.

Her husband, a minister, is semi-retired, which allows the couple some geographic flexibility. Diane has found a job with a home Peritoneal Dialysis (PD) firm in Modesto, Calif., where she can be nearer to their son, who's also a minister, and her baby granddaughter. Awwww. How can anybody be upset about that?

Well....

Suddenly (so as to date myself), my mind cues up the lyrics of To Sir, With Love. "A friend who taught me right from wrong, and weak from strong/That's a lot to learn....." Although I guess in this version, I would be playing the part of handsome young Sidney Poitier and Diane would be warbling as Lulu. She's a lulu, all right.

Diane tells me her position as my primary dialysis nurse will be taken by some German woman. I tell her I will try to keep an open mind and not be frightened.

"The hardest thing is going to be leaving all my patients," Diane says.

No, Diane. The hardest thing will be us patients going on without you. Godspeed.

Tuesday, March 2, 2010

Brace(let) Yourself

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

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

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

We agreed upon my name (although I probably could have figured that out on my own);
 Jim McFarlin 
my treatment;
Peritoneal Dialysis

the name of my nephrologist (though his full name, Abdel-Moneim Attia, is too long to fit on one line so we decided to shorten it to            
Dr. Abdel Attia     
I hope they can find him in a pinch);

his phone number, unnecessary here;          
217-DIA-LSIS

and my only known allergy.                             
Penicillin 

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

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

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

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

Wednesday, February 24, 2010

'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.

Wednesday, February 10, 2010

Cancel the Tour Guide

I called the Baxter 800 number this week to place my monthly order for dialysis solution and supplies. One of the many new hats one wears as a kidney dialysis patient is shipping and receiving clerk.

Baxter provides you with a handy-dandy order pad, and every month you're supposed to do an inventory count of the cases of "Low Calcium Peritoneal Dialysis Solution With 1.5% Dextrose" and related equipment (like tubes, bags, masks, catheter caps) you have on hand, estimate how many more you'll need over the next 30 days, then phone in your order to Baxter.

I have determined that I am horrible at this. It's really hard to look at 30 cases of anything stacked up against a wall in your home, then call somebody and exclaim, "What the heck – send me 30 more!" But because it takes about two weeks for Baxter to process the order and get that mile-long delivery truck of theirs to your door, you have to think in abstract terms of what won't be there in two weeks, not what you see with your lyin' eyes.

Fortunately, the Baxter operators who take your order have gone through this process a few times before – in the previous 15 minutes, most likely – and are unfailingly helpful, cheerful and experienced. (I know that sounds like a commercial for Baxter, but it's true; believe me, if I ever have to deal with some stereotypical order-processing doodyhead, I will tell you about it.)

At any rate, as I'm going over the supplies in house to confirm this month's order, I glance at the words printed in the corner of one of the boxes: "Baxter Healthcare Corporation, Deerfield, IL."

Deerfield! I'm living currently in Decatur, Ill. Geobytes.com says the two cities are only 170 miles apart! (Out here on the prairie, people drive 100-plus miles between towns like they were going to the corner store for a cherry slush.) Maybe I can wangle a tour of Baxter headquarters! Suddenly I have visions of giant vats of "Low Calcium Peritoneal Dialysis Solution" being squeezed into the plastic bags I use when it's time for my kidneys' daily rinse cycle, and sterile tubes carefully being connected to the bags by happy, mask-wearing employees. Look! They're whistling while they work!

The next sound you hear is my thought balloon being popped. "Oh, we don't produce any of the materials here," the cheerful operator informs me. "We just take our customers' orders in this location."

Drat. They probably don't even wear masks while they do it. I'd still like to take a Baxter tour someday, but rows of operators chatting on headsets is not quite the impressive vision I had imagined. As long as I don't find out someday that the solution that rumbles around in my body isn't being manufactured in China or Uzbekistan, I'll still be pretty geeked for a day trip to Deerfield. Did you know the Irish settlers originally wanted to name the village "Erin," but lost out to the "Deerfield" faction by four votes?

No, I didn't think you did.

Friday, February 5, 2010

Washing My Hands of Everything

From the very beginning of this dialysis dance, one is taught that cleanliness is next to healthiness. You quickly learn the difference between "clean" and "sterile." (You can achieve the first; try never to mess up the second.)

The one teaching that stays with you throughout the entire process, however, is what is known as "The DaVita Hand Wash." I assume this means that DaVita invented this particular style of hand sanitizing. Otherwise, why would they put their name on it? DaVita is way too respectable an organization to claim something they didn't originate. (Can you see some emergency room doctor in Newark seeing this and shouting, "Hey, this is the way I wash my hands! Where's my lawyer's number?")

The DVHW is a multi-stage process which I will now proceed to demonstrate electronically through photographs. (Although this might be considered a rather antiseptic way to present it! Get it?)

As it was taught to me by my incomparable nurse, Diane King, first one must wet the hands thoroughly with warm water.

                                     Me, wetting my hands.

Apply antibacterial soap to the palms and rub vigorously.

               Pretend you're rubbing your hands together in wicked glee.

Don't forget the bacteria-filthy backs of your hands.

      When was the last time you ever washed the backs of your hands?

Or that virgin semicircle between the thumbs and forefingers.

                                This part is actually kinda fun.

Between your fingers, too.

                                But this part feels kinda silly.

Now, concentrate on scrubbing each of your 10 cuticles individually.

                   The doctrine of separate but equal, applied to fingers.

Then once around the wrists, the palms and backs of your hands again, and rinse thoroughly.

                                          Rub-a-dub-dub.

Use a paper towel – not cloth, too many germs – to remove the excess moisture from your paws.

The tricky part, after all that energetic scrubbing and sanitizing with the DVHW, is not to touch anything on your way from the sink back to the dialysis equipment. If possible, use a faucet you can turn off with your forearm rather than your fingers (see photo above), and hit the light switch with your elbow. It's a skill you can develop. Really.

I am firmly convinced that if every restaurant worker in America adopted the DVHW, we could eat at any fast-food joint in the country – maybe even White Castle – without fear.

Saturday, January 23, 2010

You Like Me! You Really Like Me!

I think it's fair to suggest that very few people in the history of crappy kidneys have experienced a more enjoyable monthly checkup than I had last week at the DaVita clinic in Urbana-Champaign. Not only are all of my most important biological markers (phosphorus, calcium, protein and the like) at or above their recommended levels – "You are doing great," smiled my nephrologist, Dr. Attia – but my ego also received a major booster shot.

No fewer than five employees at the DaVita location, including the regional director herself, Ellie Suhl, took time out of their busy Friday to stop by my examination room to meet "the man who writes the blog" and compliment me on the quality of the work and for bringing attention to kidney disease and the outstanding work DaVita does in patient care. One woman said she especially giggled at my description of Diane King, my angelic dialysis nurse, as "Pollyanna," which meant that she not only really read the blog, she also had reader retention!

Now, this means two things:

(a) Many more people than you and me are reading these blatherings, to my great surprise, and

(b) I'm going to have to stop cussing in this blog and take it much more seriously every time out. After all, ladies are watching!

One nice added attraction of my appointment was being able to tell Ms. Suhl and several other people what I'm telling you now: DaVita's corporate marketing department in southern California somehow got wind of "Just Kidneying," and a delightful young woman interviewed me last week for a potential feature story in DaVita's national magazine!

Amazing. Life is a funny ol' dog, ain't it? Thirty-five years spent writing about other people in magazines national and local, and the first national article ever done on me comes as a result of renal failure.

Why, I could become the King of Kidneys! The Dean of Dialysis!

Thursday, January 21, 2010

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.

Moving Around the Block

I have been away from this page, my beloved little kidney khronicle, for nearly a month now. There is no way I ever anticipated being gone so long. It wasn't because I grew lazy, or lost interest in the subject matter. I've just been battling through a severe case of writer's block.

Writers understand the effects of this horrible malady, and know that they are rarely pretty. No one can say exactly what brings on the dreadful condition, but in this case I have my suspicions.

A full week away from my trusty MacBook Pro last month for dialysis "boot camp" training at the DaVita clinic in Decatur, IL, was followed almost immediately by the holiday season. My sister-in-law, Julie, her husband Greg and their three kids (two children and a newborn – 2.5 kids?) came here for Christmas and, well, who wants to write when there are 10 other people frolicking merrily and celebrating family ties in your house?

Who could write, for that matter?

On top of that, the feature story I was writing on that incredibly nice Detroit philanthropist Doreen Hermelin, the lady who made me the tuna fish sandwich (see "Doreen," Nov. 6, and "Rootlessness," Nov. 9), wasn't going well. It turns out she didn't want a story written about her in the first place, so she called repeatedly to check on the status of the article and remind me to keep the focus on her charitable organizations, not on her personally. This is the reason you try to maintain a professional distance from the people you write about and try not to write about friends, so they aren't constantly looking over your shoulder chirping, "How's it going? How's it going?" This usually is not conducive to creative productivity.

Typically when an interview subject is reluctant to open up, my strategy is to talk to people who know the individual and have them say glowing things about him or her. But I also have a personal policy that if I talk to a person for a story, I must find a way to include a quote from them in the article; otherwise they may feel their time was wasted. In Mrs. Hermelin's case, there were so many people who had such interesting insights to share that trying to squeeze them all into the feature, along with background on Mrs. Hermelin as well as details about her charitable causes – oh, it all just became a hot mess.

Sweating over that story delayed my work on other deadline assignments, and in order to call yourself a professional writer you must actually finish an article every now and then and get paid for doing so. An old friend of mine, a writer of mystery novels, once told me the easiest way to overcome writer's block is "by applying ass to chair." In other words, just sit down and start writing something. Anything. But that's easier said than penned. Writing may be just like riding a bicycle, especially when you do it for a living, but even Lance Armstrong occasionally loses his brakes or blows a tire.

I remember a second baseman for the Los Angeles Dodgers named Steve Sax who eventually left baseball because he lost the ability to throw the ball 50 feet from his position to first base. It happens. Who knows why blocks form or why they disappear, but mine appears to have vanished as suddenly as it arrived. Good thing, too, because so much has happened since last we communicated and I've got a lot to share with you. Can't wait to start.

Nice to be back.