JK – Just Kidneying

Direct to Video

2012-01-02T12:42:00.001-06:00

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

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

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

Now? Right this very second?

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

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

This was the result:

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

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

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

The Edge of Darkness

2011-12-18T22:35:00.003-06:00

Although it has diminished greatly, I remain in constant abdominal pain as I write this. I just ache. Every now and then, as my severed nerve endings begin to heal, I get eye-watering stabs along my incision line.

For now, most of the area surrounding my hip-to-hip incision is numb. People who've endured similar surgeries tell me full feeling may not come back for years. If ever.

My supply of the really, really incredible prescription painkiller, Percocet, is dwindling rapidly; I cherish every remaining pill like it could pay off the national debt.

My renal doctors in St. Louis have scheduled me for an ultrasound here in Champaign today to rule out the possibility of a blood clot in my new little kidney. Great. A few days later, my PD catheter, now a useless appendage hanging out of my side, will be removed in an outpatient procedure. More pain. More recovery.

My blood pressure, which had been kept artificially low at around 110/70 by medication prior to my Nov. 18 kidney transplant, is now soaring wildly out of control again, Today it was 165/90. The new cocktail of hypertension medicine I've been prescribed has yet to take effect.

Since it was high blood pressure that got me into this mess in the first place, I'm more than a bit frantic over it all. My current health care team doesn't seem to share my sense of dire urgency about the matter. The thought of surging blood relentlessly pounding my delicate, undefiled six-year-old kidney makes me angry and quite sad.

I'm taking more than 40 pills a day, or four times as many as I did on Peritoneal Dialysis (PD). I have become a pharmaceutical stockboy, constantly checking supplies on hand, making frequent restocking visits to my local pharmacy and calling St. Louis for transplant-specific drugs to be delivered by mail. The medications control my day. Half the drugs must be taken with food, the transplant drugs specifically on an empty stomach. I feel like the guy on that antacid commercial: "Eat now, pill now? Pill now, eat later? Wait to eat, pill now? Wait two hours, now eat?"

Until next March, my blood must be drawn every Monday to ensure certain levels are decreasing or maintaining on schedule. For as long as I have a transplant, my blood will be drawn for lab tests on a regular basis.

Did I mention that I can't stand needles?

I don't mean to sound whiny, and if I do, forgive me. I was told before the surgery that depression is frequently a natural post-op emotion, and I may be going through a touch of that right now. I know that ultimately, the pain will end, the medication regimen will become routine, my blood pressure will plunge. But I can't shake the feeling that in many ways, I was better off on dialysis. At least, I felt better. At the very least, I wasn't in pain all the time.

When I was on PD, I didn't worry about much. The daily routine just kind of rolled along, and I pretty much knew exactly what to expect. Now I find I'm constantly worrying about something – organ rejection, my lowered immune system and possible infection (my wife has a cold! Oh, NO!), taking my pills on time, the possibility of a blood clot.

On a conscious level, I know this is a transition period and if I remain patient, much of this will pass. But if having kidney failure has taught me anything, it's that you have to live in the now, that a healthy tomorrow isn't promised to any of us.

Well, I'm in the now. And now sucks.

Fear Factor

2011-12-02T17:16:00.000-06:00

A phone conversation the other night with my great good friend over many decades, Larry Kaplan, really served to clarify some issues and emotions for me regarding my recent kidney transplant – emotions I hadn't admitted to anyone, not even myself.

I have known Larry since the first week I set foot in Detroit to work back in 1979. I was the rock critic for The Detroit News then, and the paper's staff photographers deemed it beneath their dignity to shoot rock 'n' roll bands at night for concert reviews. So the entertainment department hired Larry as my full-time freelance sidekick, doing hand-to-hand combat in the photo pit to embellish my meager words with visual splendor. In recent years, he has reserved a bedroom in his spacious condo for me to use upon my frequent return visits to Detroit, sparing me untold amounts of stress, advance scheduling and hotel fees. (Thanks, Larry.)

We hadn't talked since a month or so before the surgery, and he was asking me the kind of simple, direct questions anyone might inquire of an old friend fresh from the scalpel. "Is there a lot of pain?" (Oh, YEAH!) "Will you have to take anti-rejection medication? (For the rest of my life.)"

"Do you feel any different inside?"

Yes, it suddenly occurred to me, I do.

I'm scared.

No, scratch that. Dude, I am terrified.

Beyond the pain of recovery, my body has changed in so many dramatic ways. I'm swallowing three times the medications I was taking while on dialysis – some with meals, some only on an empty stomach, some in the morning, others at bedtime – and until I establish a routine, the sheer scheduling of the doses every day has my head spinning. "You MUST take your medicine regularly!" my post-transplant handbook warns. "Rejection will occur if you skip or stop your immunosuppressive medicine."

No pressure.

But it's more than that. Way more. I have been given an awesome gift – one so precious that sometimes, when I stop to think about it, I am moved to tears. I know that last year alone, more than 4,700 people died while waiting for a matching donor kidney like the one I now have. I know that a family somewhere is experiencing heart-shattering grief for the donor whose organ is giving me a second chance at a full, healthy life.

I know a vast network of supporters I cannot begin to tally – the transplant team, surgeons and nurses at Barnes-Jewish Hospital, my church family at Harvest Bible Chapel Decatur, relatives, friends, relatives of friends, co-workers and clients past and present, total strangers – have been immersed in prayer and positive, affirming thoughts on my behalf. My friend Rochelle Riley, the fine columnist for the Detroit Free Press, summed it up in a Facebook posting this week after my first post-surgery outing: "Yay to Jim McFarlin who's outta the house!" she wrote. "We're all so excited 'round these parts!!!"

No pressure.

I just feel there is so much victory, so much fulfillment of hope wrapped up in all of this. I could not bear the anguish of having to say to these same people at some point in the future, "Folks, my 'dream kidney' is failing...and it's because of something I did."

My immune system is intentionally suppressed. By how much, I have no idea. But living with the idea that a careless cough in the face from a 3-year-old could set my entire personal ecosystem into screaming yellow meemies is going to transform me from Average Sloppy Guy to Anxious Germophobe. I can just feel it. I'm going to make Howie Mandel look like a mud wrestler. I won't be quite as bad as Larry, who used to squirt a person's hand with sanitizer before he would shake it, but I'll be pretty insufferable for a time. Please bear with me.

I'm going to start doing all those things we tell ourselves we need to do to improve quality of life. Make exercise an important part of my lifestyle. Watch what I eat, and eat better food. Balance and manage mind and body, work and leisure. Pray more.

I can do this, Larry, thanks for asking. I have to do it.

I just don't want to screw this up.

A Time of Thanksgiving

2011-11-24T13:50:00.000-06:00

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

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

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

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

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

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

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

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

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

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

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

L'chaim: To Life!

2011-11-20T19:46:00.007-06:00

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

2011-11-18T05:30:00.000-06:00

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.

Always in Love With Amy

2011-11-04T16:52:00.000-05:00

You know how there are people in your life who quietly inspire you every day just by their presence, but you don't take the opportunity to tell them so? I'm going to correct that oversight for myself right now.

Or should it be, "correct that oversight for me"? Amy Lynn Smith would know. This is my dear friend Amy:

Several years ago we worked together (or to be perfectly accurate, she worked for me) at the Campbell-Ewald ad agency where I was an editorial supervisor and she was the publishing division's No. 1 freelance writer. I was constantly impressed by her work, and her work ethic.

Her versatility was surpassed only by her productivity. Whether she was writing about automobile batteries or skillfully constructing a CEO profile, her finished product was always thorough, interesting and perhaps most important for an editor, on deadline. As punctuality and I never have been bosom companions, her ability to take on and juggle multiple assignments at once and get them all done on time remains her most amazing attribute in my eyes.

Writers, like most creative people I know, are insecure, jealous little creatures. (If you disagree, I invite you to watch any televised awards show.) Whenever a writer I know completes a major, well-received project or earns a prize for their work, a little surge of "Why can't I be that good?" of "It should have been me!" wells up in my throat. I never once remember feeling that way about Amy. My admiration for her talents – and they are myriad, on the page and on the stage – is genuine and absolute.

I'm a full-time professional writer, but I have the backstop of a wonderful wife who pulls down a management salary at the University of Illinois should my energy wane or my assignments dwindle. Writing is Amy's total livelihood: If she's not stringing words together, there's no food on the table and the banker's at the door. That's called pressure to produce in my book, yet she performs every day with consummate grace and skill.

Yet through it all, she has found time to create and launch a very beautiful and informative business website (take a peek around it here) – please don't look at mine; it's still in bits and shambles after a year, because I keep convincing myself I don't have a spare moment to work on it.

Yeah, suuuure. Amy, please try not to laugh and point.

And now, the ultimate: Amy has accepted the challenge of National Blog Posting Month (NaBloPoMo) to deliver a fresh blog post every single day in November. Thirty consecutive new blogs, on top of her daily workload.

Hokey mokey.

Well, Amy, m'dear, I treasure you, but I'm going to admire you from afar on this one. That's not going to happen here at Little Jimmy's Just Kidneying outpost. It doesn't help my enthusiasm that I get paid to write about television and your recent blog about House is as good as anything I've written lately.

Is there nothing you can't do? You big showoff.

But you do inspire me, Amy Lynn Smith, to be a better, more productive, more trustworthy scribe every day. Hey, this is my second blog posting this week! See how I'm influenced by you?

Tat's My Wife

2011-10-31T11:20:00.001-05:00

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

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

This is Karen.

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

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

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

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

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

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

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

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

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

"The whole verse?" I asked, incredulous.

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

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

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

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

Aw, shucks.

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

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

And here is the result:

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

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

Oh, what a lucky man I am.

Happy Happy, Joy Joy

2011-10-26T00:44:00.001-05:00

As some of you may know, I am proud to serve as Contributing Editor for Live Now: Rethink Kidney Disease, the website hosted by Baxter Healthcare Worldwide urging people afflicted with CKD (Chronic Kidney Disease) and ESRD (End Stage Renal Disease) to reclaim life on their own terms. (And coincidentally, to promote Baxter's in-home therapies like Peritoneal Dialysis – the system I use and advocate – and Home Hemodialysis.)

My latest essay for Live Now, "Don't Worry, Be Happy," has posted to the site. It suggests that maintaining a positive attitude in the face of a serious illness (or any other bad ju-ju, for that matter) can have a remarkably beneficial effect on one's overall health and outlook.

I'm pretty happy with the piece, but then again, I have a positive mental attitude. I hope you like it. I would repost it here in its entirety, but that kind of defeats the purpose of writing for the Baxter website in the first place. (Besides, they pay me.)

So here's a link to the article: http://bit.ly/v6Isp2.

Please do me a favor: Click to the page at least 50-100 times, even if you only read it once, so the people at Baxter will think I'm a wildly popular writer.

Thank you. Be happy.

On the Kidney Kampaign

2011-10-05T17:40:00.001-05:00

Just finished a big week on the kidney beat. On Tuesday I was in Waukegan, Ill., home of Baxter Healthcare, where I sit on the company's Patient Advisory Committee team (PACt), to attend one of our quarterly meetings. Then, as luck and good scheduling would have it, on Thursday I stopped in Chicago while on my way home to Champaign to make a presentation to the board of directors for the National Kidney Foundation of Illinois (NKFI).

Even more good timing: Karen, my angel of mercy, happened to have business in Chicago at the same time. So we used the once-grand, now-scruffy Blackstone Hotel in the Loop as our home base for the week. It even allowed Karen the opportunity to join me for the NKFI appearance.

At the Baxter confab, representatives from the company's various renal divisions come to our committee (numbering about 20 on this occasion) to get our reaction to proposed new products, changes to existing products, and to pick our brains about how we use Baxter's goods in the real world. These are scientists, corporate doctors and manufacturers who almost never come in contact with an actual breathing patient.

I've been sworn to secrecy about revealing details from these sessions under threat of slow, lingering death. The Baxter PR honchos get quite skittish knowing there's a former journalist in the room who has a blog read by people concerned with kidney matters. But I think I've been pretty good about keeping their confidences so far.

So far.

In this get-together we met Dr. Cory Sise, a nephrologist and leader on Baxter's medical team, who had her worst fear confirmed by the PACt people: Those product information sheets she and her people spend hours revising and rewording so they're completely accurate and useful?

Nobody reads them.

For me, the keenest insights from these meetings come not from the Baxter executives but from my fellow patients. On this trip, I learned that some people, in order to warm their bags of manual dialysis solution before inserting the fluid into their abdomens, actually stick the bags in the microwave! Yow! I guess if it starts boiling, you should take it out, eh?

The recommended method is to lay the bags on a heating pad so that they warm slowly and thoroughly. Problem is, if you forget and leave them on too long, it can have the same effect as nuking them. Imagine molten lava roaring through a catheter and filling your innards. Burn, baby, burn.

Hearing the other patients' startling admissions prompted me to confess my own preferred means of bag warming: hot water. I go to the bathroom, fill the sink and submerge the bag for three minutes or so. Slow, even warmth. I've learned over the years that the dialysis solution doesn't need to be piping hot; it just needs to be warmer than I am. Inserting liquid inside you that's too cold can be just as painful as solution that's scorching: Yow!

I was afraid to tell any health care professional about the hot water before, for fear they wouldn't approve. These meetings can be so liberating!

The NKFI board of directors retreat (no campfire songs or s'mores, much to my chagrin) was staged in the magnificent Merchandise Mart, and I was invited to give my first-person saga of living with chronic kidney disease and dialysis. Many thanks to Kate O'Connor, CEO of the Foundation, for extending the invitation, and to communications director Anne Black for her gracious assistance on site.

This is a song-and-dance I've performed many times before, as you know, and that might have been the problem. I was not as good as I should have been with my presentation. I'm my own worst critic, of course, but I felt I've been much better in past appearances. However, I learned two important things from the experience.

One, even though it's my own story and I've told it countless times, there is no substitute for rehearsal. ("Excuse me, sir, how do I get to Carnegie Hall from here?" the tourist asked. "Practice, practice, practice," the native replied.) Because I was pulled out of the Baxter PACt meeting briefly Tuesday to share my dialysis "testimony" with new sales reps, I thought that single run-through would be sufficient. It wasn't. I didn't have a clear Point A-to-Point B monologue, and I don't think I articulated it well.

I was delighted that the first followup question in the Q&A portion of my presentation went to Karen. But I think that speaks volumes as to how effective I was that day.

I think I also may have had an internal distraction. The gentleman who preceded me at the NKFI retreat, Baxter renal economic consultant Joe Connor, gave a very long and complex fiscal analysis filled with PowerPoint charts and graphs. It elicited numerous questions from the board members, and it was impossible to judge how long his Q&A session might last.

That was a dilemma, because I had to go to the bathroom! And I was certain that the moment I slipped out to find one, Connor would end his remarks and I would be MIA. So I stayed in my seat, my knees locked tight. I have no doubt my bladder predicament affected my concentration.

So that's the second thing I learned on this journey: When you're getting ready to speak in public and your nerves are running high, go potty before you really need to!

Yow!

It's the Pits

2011-09-19T16:40:00.000-05:00

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.

The Arkansas Traveler

2011-08-31T23:24:00.150-05:00

So, where are all the hot springs?

Oh, I see. There's a town in Arkansas called Hot Springs. Sorry. My bad.

OK, then, where are all the little rocks?

Better little rocks than kidney stones, I suppose.

I finally made it to the state capital of Arkansas last week to attend the 38th annual convention of the American Association of Kidney Patients (AAKP), my reward for winning the Renal Network's 2011 Robert Felter Memorial Award. And I hope that the citizens of the great state of Arkansas and the South in general understand that all those disparaging, smartyboots comments I've made in previous blog posts about taking this trip were simply for comedic effect and never intended to be taken at face value.

Kinda.

But seriously, folks, I found Little Rock to be a quaint and captivating little American city, filled with some of the most disarmingly friendly people one could ever wish to meet. Southern hospitality is alive, well, and living in a land that celebrates Bill Clinton and feral hogs, not necessarily in that order.

It is the smallest town ever to host the kidney conference. I asked Jerome Bailey, communications manager for AAKP, if this was the first time the convention ever had been held outside the organization's home state of Florida.

"Oh, no!" he replied. "We've held it in Los Angeles, Las Vegas, Chicago...."

Nice award. Wrong year. I coulda had Vegas!

I was impressed by signs in Little Rock National Airport informing arriving visitors of "Airport Angels" scattered throughout the terminal who were ready to offer directions, answer questions and generally act as ambassadors for their beloved village.

At Detroit Metro Airport, the only angels you're likely to see are Hell's.

This is the lobby of the hotel where the convention was held, the historic Peabody, billed as the most lavish accommodations in the state.

The lobby alone is enough to dispel whatever stereotypes I may have held about Little Rock. The Peabody is opulent, its rooms upscale. As you may know, however, in summer Southern Heat is far different from Northern Heat. In August, Northern Heat feels like a thick wool blanket wrapped around your entire body. Southern Heat is the same blanket, but soaked in hot water and pressed against your face as well.

To compensate – and possibly to appease us cranky Northerners – the interior of the Peabody was air conditioned to a temperature somewhere around sub-Arctic. Never have I been so cold in a large building before. By the second day, at every session I was wearing the heavy sweatshirt I was so thankful I had packed.

The Peabody chain, as you might know, is world renowned for its Peabody ducks, a tradition begun in Little Rock. Every day, promptly at 11 a.m., a flock of five ducks waddle down a red carpet and dive into the hotel's lobby pool, where they flap and frolic until 5 p.m. when they return to their evening quarters with much pomp and fanfare.

A word to the wise: If dining in the hotel restaurant, never ask for the roast duck entrée. Bad form.

I did make it to the William J. Clinton Presidential Library and Museum, which as you can imagine is a source of great pride to the local citizenry.

Regardless of your political leanings, you should visit presidential libraries whenever you get the chance, if for no other reason than to touch a period of American history. The Clinton museum was hosting an Elvis Presley exhibit, which if you remember Bill Clinton makes complete sense. The museum also has on display the saxophone Clinton played on The Arsenio Hall Show the night he essentially secured the nation's black vote.

However, I looked all over for the one thing I really wanted to see, but never found it: the definition of what "is" is.

The three-day convention offered breakout sessions with titles like "Preparing Yourself for Dialysis" and "The National Kidney Registry: Understanding the Kidney Exchange Program." They were extremely informative, but no more so than my fellow attendees.

Here I am with my new friend Brad Mayfield. (No relation to the late R&B immortal Curtis, as far as he knows.) Brad and I talked at length about our individual journeys. I got to ask him how it felt to receive a kidney transplant, lose it through organ rejection and then rebound, physically and emotionally.

The greatest component of the AAKP convention was the feeling of being surrounded by hundreds of people who could relate exactly to what you've been going through. I met people who have been on dialysis for 30, 40 years and are still going strong.

No place for a scintilla of self-pity here. What's that old saying, "I cried because I had no shoes until I met a man with no feet?"

Just call me Shoeless Jim.

Rockin', Just a Little

2011-08-23T12:12:00.002-05:00

This is the week I fly to Little Rock, Ark., to accept my "prize" for winning the 2011 Robert Felter Memorial Award from the Renal Network. My reward is an exciting weekend in exotic, romantic Little Rock, to attend the annual convention of the American Association of Kidney Patients (AAKP).

What's more, I get to write about my experiences for the Renal Network. For free. As a professional writer who makes his living getting paid to string words together, I can't begin to tell you how happy that prospect makes me. Seriously, I can't tell you. Is there no end to the wonderfulness stemming from this honor?

The 2010 AAKP convention was in Tampa, Fla. Like Maxwell Smart used to say, "Missed it by that much."

This week the AAKP sent out an email titled "Things to Do in Little Rock!" It reads, in part:

"Little Rock is an exciting city with a vibrant downtown and entertainment district, a wealth of unique sightseeing, day trip and tour opportunities, excellent restaurants, shopping and museums!

"Famous as President Clinton's first capital city, the cradle of the civil rights movement, and the center of the beautiful Natural State, no city represents a bridge from the treasured past to the exciting 21st century than Little Rock."

Really? No other city? Anywhere? Wow!

Sounds to me like they're trying to suck up to the members who loved meeting in Tampa last year.

And did you know Little Rock was the "cradle of the civil rights movement"? I always thought Rosa Parks boarded that bus in Montgomery, Ala., not Little Rock. Maybe she got a transfer.

"Say you had only 24 hours to take in the sights and sounds of Little Rock?" the email asked. "What would you do?" Well, I probably would stay in my hotel room. But the convention hosts suggest:

• The River Market and downtown Little Rock (every city has a downtown, and almost all have markets; keep going)
• The Old Mill (as apposed to the New Mill?)
• The William J. Clinton Presidential Center (OK, they've got me there; presidential libraries are typically way cool. Wonder if Monica's dress is on display?)
• Little Rock Central High School National Historic Site (where, in 1957, nine brave black teenagers stood up to a raging, racist mob protesting integration at the school, providing the first major test of the Supreme Court's Brown vs. Board of Education decision. Maybe Little Rock isn't the cradle of civil rights; more like the incubator.)
• Craters for Diamond State Park (I didn't book a hotel room so I could go camping; unless, of course, this park has real diamonds.)

The message also pumps Little Rock as "the dining capital of Arkansas," which I trust isn't the same as "the cesspool capital of New Jersey." They recommend eateries named The Pantry, Whole Hog Café & Catering, and Brave New Restaurant. Brave New Diners might be more like it.

Open mind. Open mind. Little Rock is a state capital, after all. Then again, so are Lansing, Springfield and Cheyenne.

I always try very hard to have a good time no matter where I happen to be. I'll let you know if my track record remains intact after this weekend.

Left Holding the Bag

2011-08-01T15:51:00.003-05:00

I have just returned home from a grueling 11-day sojourn to Chicago, Florida, back to Chicago and off to Muskegon, Mich., to research my current book, conduct interviews and act as emcee at the wedding of my childhood friend's youngest daughter. Eight different cities, five different hotel beds and countless restaurant meals in a week and a half.

I'm pooped. And just a bit backed up.

And at every stop along the way, my trusty Baxter Home Choice® Automated PD (Peritoneal Dialysis) Cycler machine has been by my side. I realized recently that I haven't really said much about my PD cycler in these musings, which is a sin and an oversight because it's the primary reason I continue to feel as well as I do. In the latest issue of LifeLines, the national patient newsletter of DaVita, a fellow PD user from San Antonio named Jack White describes the procedure more simply and completely than I could:

"The process is so simple most anyone can use PD. First you need a port inserted in the wall of your abdomen. This requires a minor surgery. The cavity in our abdomen that contains the stomach and intestines is called the peritoneal cavity. The lining of the cavity is called the peritoneum and is filled with tiny blood vessels.

"In PD the peritoneum acts as a filter. The peritoneal cavity is filled with a dextrose solution that draws the impurities out of the blood in all of those blood vessels in the lining.

"We hook the solution bags up to the port in my abdomen. The entire process works on gravity. [There's a] drain bag on the floor for the bad stuff.... First the old stuff is drained out of my abdomen into the bag on the floor. The new dextrose solution fills my abdomen and the exchange is done. I'm ready to resume my daily activities. The PD cycler machine is a little computer that directs the swtich back and forth from drain to fill."

The miraculous Baxter Home Choice® PD Cycler.

It really is an amazing device, especially when you consider that the alternative is traveling to a faraway, antiseptic dialysis clinic multiple times each week, having all your blood sucked out of your body and pumped back in, and being surrounded by masked attendants and fellow sufferers you don't know.

I could not possibly travel as freely and frequently as I do without my cycler. And let me just take a moment here to tell you how wonderful Baxter is. On this trip, after almost two years of near-daily use, eight hours a day, my trusty cycler emitted an ear-bending beep and breathed its last. To make matters worse, its death occurred on the last day of my hotel stay in Sarasota, Fla., and I had not yet reserved my next room somewhere near Miami.

I called Baxter's technical support line and explained my dilemma. "Well, where will you be tomorrow?" my tech, Matt, asked.

"I have an interview in Miami Lakes at 11 o'clock," I said.

"How long will you be there?"

"Two hours or so, I guess."

"Bring your old machine with you. We'll have someone meet you there and swap it out for a new one."

And, sure as the IRS, the next day a Baxter driver arrived at my interview location with a brand spanking-new cycler, dropped it off with the receptionist and took the old unit away before my appointment was concluded. Who says service has gone the way of the Nehru jacket? Very impressive.

The cycler weighs more than 30 pounds, and since it costs more to replace than I'll probably make this year, it never leaves my sight when I'm on the road. I carry it with me on board planes, usually without hassle from the TSA or flight attendants, and because I never know how far it is from my airport arrival gate (why is it always Gate 99?) to the baggage claim, I often swallow my pride and request a wheelchair assist from the gate. Usually, once I sit in the chair and they pile my cycler and briefcase in my lap, no one can see me anyway.

I have tried to make the trek from the gate without a wheelchair. In my slightly weakened condition it feels like dragging a boulder across the desert. At least, that's what I look like I've done by the time I reach the carousel.

Here's my rub: While the cycler rides for free, the supplies it needs to operate – the drain bags, filtering cassettes, clamps, tape and the like – take up so much space they require a separate bag of their own. And American Airlines, which I flew on this trip, licking its greedy chops over the prospect of additional gouging, charged me an extra $60 for that bag of supplies each way of my journey.

That's right. Pick on the sick kidney guy.

I try very hard to fly Southwest, which has no oppressive add-on baggage fees, whenever I can. But there are some places Southwest doesn't go. I'm told there is a way around the extra charge for essential medical supplies. and if anyone knows about this, please educate me. Meanwhile, I'm going to do some research on my own.

I've got another trip, to Little Rock, set later this month. I don't want to be left holding the bag again.

This Award-Winning Blog

2011-06-28T19:35:00.000-05:00

In all the recent kidney konfusion, I nearly forgot to tell you: Today I am an award-winning blogateer.

You are looking at – OK, to be perfectly accurate, you're reading – the recipient of the 2011 Robert Felter Memorial Award from the Renal Network, Inc., given to "honor individual renal patients for their contribution to fellow patients and their families through service, outreach and education." Impressive, no?

I'd never heard of it before either.

Actually, it was the social worker at my DaVita dialysis clinic in Decatur, Ill., Theresa, who knew of the award and encouraged me to fill out a nominating form.

She knew of my other kidney educational endeavors: working as a contributing editor on the "Live Now: Rethink Kidney Disease" website hosted by Baxter, the company that makes my dialysis supplies; public speaking engagements on behalf of Peritoneal Dialysis for the Baxter corporation and in front of the Michigan Legislature; joining Baxter's patient advisory board, speaking to dialysis patients one-on-one at clinics in Michigan and Illinois. But if you ask me, it was far and away this goofy, occasionally informative blog that helped to put my entry over the top.

If you subscribe to JK, read it regularly or have ever read it before, thank you. I appreciate you more than you could ever imagine.

The late and memorialized Robert Lee Felter, who died in 2002, was a kidney patient himself and is described by the Renal Network as "a champion for dialysis and transplant patients, and a guiding force for patient-centered activities." To answer The Wife's (and possibly your) immediate first question, no, there is no monetary award involved. However, as the Felter winner, I do receive an all-expenses-paid trip to an upcoming national convention that focuses on dialysis or renal research.

Ah, there's the rub. After extensive (and I do mean extensive) investigation, the best convention I could find for the remainder of 2011 was "Bridging the Future of Kidney Care," the 38th annual gathering of the American Association of Kidney Patients.

It's taking place Aug. 26-28 at the Peabody Hotel in Little Rock, Ark.

That's Arkansas. In August.

Second prize: A free weekend in Hell.

But hey, the horse is a gift. Who am I to check its choppers?

I will show up in Little Rock with the enthusiasm of a female intern meeting Bill Clinton, and we'll play it as it lays. So to speak.

And whatever befalls, rest assured I'll tell you all about it.

In this award-winning blog, of course.

Just Kidneying – For Real

2011-06-21T14:12:00.003-05:00

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

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

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

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

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

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

How ironic.

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

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

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

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

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

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

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

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

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

The Kidney Call Comes

2011-06-19T22:11:00.001-05:00

I wasn't ready.

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

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

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

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

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

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

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

My blood ran cold.

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

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

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

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

Pressure? What pressure?

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

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

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

What if there are complications in the surgery?

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

Will I miss dialysis?

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

How will I respond to the anti-rejection drugs?

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

Will I have to wear a mask in public?

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

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

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

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

Powerful stuff, this kidney transplant. Amen.

Giving Me the Finger

2011-06-19T17:05:00.000-05:00

WHAT THE HECK IS THIS?

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

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

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

Nuthin'.

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

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

Here's what the orthopods do know:

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

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

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

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

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

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

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

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

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

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

Parking With the Pastor

2011-05-13T20:18:00.003-05:00

I have returned, tired but inspired, from "Harvest University," an intense three-day conference in Elgin, Ill. It was hosted by Harvest Bible Chapel, the exploding string of Bible-based churches worldwide that has a branch in Decatur, Ill., which I am proud to attend.

At a Harvest church, everybody works in service to God's glory; I am a member of the Hospitality Team at Decatur, and in between the University's exhilarating worship services I took workshop courses designed to help me do what I do better.

The church was founded in 1988 by Pastor James MacDonald, a simply amazing man of God. Funny yet fearless, passionate and unapologetic, he is one of the finest Biblical scholars and ministers it has been my privilege to hear.

I'm always thrilled to see him preach in person, so I was anxious to get from the hotel where 17 of my fellow Decatur parishioners and I were staying over to Harvest Elgin for the final day of classes and Pastor MacDonald's closing sermon. Because we all had checked out of the hotel and were going our separate ways at the end of the conference, I was driving by myself.

About a quarter-mile from the church, I found myself stuck alongside a bald, burly biker in a black leather vest who was slowly putt-putt-putting his Harley in the right-hand turn lane leading to the entrance. "This guy can't possibly be going to Harvest University!" I grumbled. "What the heck is he doing in my way?"

I had the option of either slowing waaaay down and slipping in behind the motorcycle or hitting the accelerator, gunning it a bit and zipping in front of him.

Did I mention that I drive a 2011 Camaro?

There was no option. I stepped on the gas, made a sharp right and pulled in front of the biker. "That's more like it!" I grinned.

I looked in my rear-view mirror to make sure I hadn't cut him off too severely. "Man, does that face looks familiar," thought I.

Then I took a closer look. The joy-riding biker was none other than...Pastor James MacDonald.

Oh, Lord.

Scanning his eyes in the mirror for any trace of anger, I felt relieved that (a) he seemed OK and (b) thankfully no one from my church witnessed my moment of sheer idiocy.

I was half right. The moment I opened my door after parking in the Harvest lot, my pastor in Decatur, Tony Caffey, was standing next to my car. "You know you almost ran over the founder of our church?" he asked.

I heard the raucous laughter of my fellow Harvest Decaturites in the background.

Well, perhaps an apology might be in order.

As I entered the lobby I spotted MacDonald – he's a hard man to miss, especially in a black leather vest – surrounded by members of my church. I walked over and shook his hand.

A grinning Pastor James MacDonald with Harvest Decatur attendee Lori Nelson, apparently uninjured.

"I'm really sorry about cutting you off," I said.

"That was you? In the Camaro?"

I nodded sheepishly.

"Man, I couldn't help but check out that car! That is one sweet ride!"

Saved by the sports car.

As we later learned, MacDonald was dressed as he was because the church was giving a new Harley to assistant senior pastor Rick Donald for his decades of faithful service to the church, and MacDonald actually rode the bike into the sanctuary to present it to him. I don't think that was the bike he was riding into the parking lot, but I can't be sure. Had I cut my steering wheel a split-second sooner, I might have ruined a thoughtful, expensive gift and derailed a marvelous closing sermon from MacDonald. Harvest Holy Enemy No. 1.

The takeaway for me that day? God's grace even extends to impulsive drivers. And you can't judge a biker by his "vest"-ments.

Making a PACt With Baxter

2011-05-05T23:43:00.003-05:00

I spent a few days not long ago in scenic Waukegan, Ill., home of Baxter Healthcare worldwide, where I made my first appearance as a member of the company's Patient Advisory Committee team, or PACt. (As a professional editor it drives me batty that the "t" isn't capitalized too, but I try hard not to think about it.)

As another wonderful outgrowth of these wacky blog blatherings, I was invited last year to sit on the patient panel for Baxter, the company that manufactures my dialysis machine and supplies, in the off chance I might have something to contribute.

These meetings are highly confidential, as deep-dark details of products in production and yet to come are discussed freely. I could tell you some of the things we talked about, but then Baxter would have to kill me.

No, seriously.

In fact, it was kind of funny. Before the PACt confab, I was asked by my great and good friend, Trisha Daab of Baxter, to speak to the global marketing group she recently inherited. She wanted me to crank up my standard song-and-dance routine to a new audience and share firsthand feelings and experiences about being a kidney patient on Peritoneal Dialysis (PD). Sadly, the corporate workers who manage and market Baxter's goods almost never get to talk to the end users whose lives depend on their labors.

After that lively session I opened my laptop to check my e-mail. Because the PACt meeting was to be held in the same conference room, I left my computer open to mark my seat.

Minutes before the PACt was about to convene, one of Baxter's marketing bigwigs walked over and gently put his hand on my shoulder.

"Uh, Jim," he said warily, "you are aware that these PACt meetings are confidential?"

"Of course," I replied.

"Oh, OK. I saw you had your laptop out and I wanted to make sure."

Dude, this isn't like a baseball game where I need to cover the play-by-play action of the meeting as it happens! If I was going to reveal company secrets, don't you think I'd have enough sense not to do it inside the company? I was mildly offended! But apparently some of the bigger wigs at Baxter were slightly ruffled by my unvarnished honesty in describing my Baxter-sponsored trip to LA to speak to their annual sales convention (see "Shelter From the Storm" here).

I'm told somebody even asked if there was a provision in my speaking agreement with Baxter that gave the company any editorial control over this blog! I will not be censored! I cannot be controlled or muted! I will always tell the truth of kidney disease, dialysis and my life as I see it, without compromise! You loyal Just Kidneying readers deserve nothing less!

(The strains of "The Battle Hymn of the Republic" should be coming up in your mind right about now.)

For me, the best part of the PACt meetings was the opportunity to meet and interact with everyday people who have dealt with the same affliction that I have – and in some cases, suffered far more pain and damage. It's a comforting feeling to know somehow that you're not alone in this sickness, and a blessing to realize that as bad as it feels sometimes, it could be far, far worse.

The most surprising part of the day was the realization that, of the dozen or so participants relating their experiences with Peritoneal Dialysis, I was the only one who uses the Baxter "FlexiCap Disconnect Cap with Povidone-Iodine Solution" on a daily basis.

You see, the way the Baxter PD cycler works is, old dianeal solution is drained from the peritoneal cavity surrounding your innards, fresh solution is pumped in, then it "dwells" in your body for a couple of hours to attract and filter out all the impurities it can. During the "dwell" period, the cycler is essentially inactive.

Guess I had some wonderful and understanding dialysis nurses to train me, led by my Angel Who Walks on Earth, Diane King: I was taught that if you're careful and maintain sterility, there's nothing wrong with detaching yourself from the machine, capping off the fluid tube with a FlexiCap and going about your business during that time.

The "FlexiCap Disconnect Cap With Povidone-Iodine Solution" at Work.

During the day I run errands, have lunch, work out – just so I'm back and reattached to the cycler before the next drain begins.

When I said this out loud to my fellow advisors, they looked at me like I just fell out of Uranus. "Oh, NO!" they cried. "You must only use your FlexiCap in the most extreme of emergencies!"

Really? Really, folks?

After that, I pretty much just PACt it in.

Until the next advisory meeting in June, that is.

A Donor Has Been Found!

2011-04-01T09:48:00.001-05:00

If there's one thing I have learned through this amazing kidney journey, it's that nothing should amaze me.

You remember the story of the anonymous Detroit gentleman, a stranger to me and in terminal condition, who read about my situation and designated that one of his kidneys be given to me upon his passing? (If not, you can read about it here.) That selfless donation had to be declined for numerous reasons, but now, astonishingly, another potential organ donor has stepped forward:

Charlie Sheen.

Apparently during all my coverage of Sheen's tribulations with Two and a Half Men as TV critic for the Detroit Metro Times, one of his people, Stan Rosenfeld, came across Just Kidneying while Googling my name and brought the blog to his attention. In the call I received last night, Sheen says he feels moved to make sure I'm "WINNING!" in my quest for a transplant and is in the process of undergoing a blood test to make sure we're a type match. Even if we're not, he feels the tiger's blood surging through his veins will be enough to overcome any incompatibility issues.

The real issue, as it was with the man from Detroit, will be the overall health and condition of his organs. Charlie believes his kidneys are sufficiently pickled to be well preserved for transplantation, and as a "rock star from Mars" he thinks it's highly possible he may have a third or fourth extra kidney inside him anyway.

We plan to meet in person backstage during his live tour stop at the Fox Theatre in Detroit Saturday to seal the deal, at which time I will tell him what I'm about to tell you now.

Happy April Fool's Day, everybody.

Jimmy Springs a Leak

2011-03-27T23:22:00.004-05:00

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

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

Happy Black Man With Snappy Black Car

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

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

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

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

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

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

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

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

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

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

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

"What clamp?"

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

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

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

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

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

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

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

Ever go through a mall walking like John Wayne?

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

Shelter From the Storm

2011-02-02T01:20:00.001-06:00

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.

Who You Callin' Ugly?

2010-12-17T16:44:00.001-06:00

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!

Flashes From the Frontline

2010-12-10T17:12:00.002-06:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Cut me in, so to speak.

The Toughest Decision

2010-12-03T16:37:00.002-06:00

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

She dropped a bomb on me, baby.

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

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

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

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

The hospital had located a replacement kidney for me.

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

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

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

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

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

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

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

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

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

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

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

Thanks, honey. That helps a lot.

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

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

And what if that perfect kidney never comes along?

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

2010-11-08T13:49:00.002-06:00

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.

Spreadin' the Good News

2010-11-05T11:25:00.002-05:00

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. He 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.

Regaining My Religion

2010-10-29T19:55:00.001-05:00

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.

Could This Be Called a Cat-astrophe?

2010-08-31T10:59:00.002-05:00

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?

Blogged Down

2010-07-02T09:55:00.000-05:00

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.

Driving to be the Best

2010-06-05T18:03:00.003-05:00

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

2010-05-28T17:07:00.006-05:00

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

2010-05-04T21:56:00.000-05:00

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

2010-04-19T18:34:00.001-05:00

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

2010-04-13T21:17:00.005-05:00

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?

Diane, We Hardly Knew Ye

2010-03-30T22:53:00.002-05:00

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.

Brace(let) Yourself

2010-03-02T13:05:00.002-06:00

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!

'Cathy' Was Too Easy

2010-02-24T17:14:00.002-06:00

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.

Cancel the Tour Guide

2010-02-10T14:50:00.000-06:00

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.

Washing My Hands of Everything

2010-02-05T21:53:00.004-06:00

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.

You Like Me! You Really Like Me!

2010-01-23T19:19:00.001-06:00

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!

A Moment In Time on a Winter's Night

2010-01-21T18:48:00.002-06:00

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

2010-01-21T08:41:00.002-06:00

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.

Dialysis Boot Camp

2009-12-28T18:16:00.001-06:00

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

2009-12-18T13:29:00.003-06:00

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

2009-12-12T22:51:00.002-06:00

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

2009-12-08T08:39:00.002-06:00

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.

Painful As All G'Out

2009-12-07T13:16:00.004-06:00

While writing my recent reflections on Thanksgiving and the many things I have to be grateful for (see "Am I Thankful? Are You Kidding?" Nov. 30), I made an accounting of the remarkable list of life-changing events that have happened to me in 2009. I revisited that list today and was astonished to realize that I completely failed to mention my nearly three months of suffering from gout in both feet, brought about by the inability of my kidneys to filter my blood as effectively as they should.

It was the focal point of the article I wrote about my crummy kidneys for HOUR Detroit magazine last summer (see "Best Foot Forward", if you haven't already), but I haven't even mentioned it in the four months since I've been writing "Just Kidneying." Just goes to show you: This year has been such a dizzying whirlwind of emotion and change that I totally forgot the crippling condition that left me dependent upon canes and a walker just to move around, at the same time I was trying to pack to move from Michigan to Illinois!

In hindsight, I have no idea whether it was the succulent, Béarnaise sauce-drenched steak dinner I enjoyed with Karen at Motor City Casino in Detroit that threw my body's ecosystem into default. What I do know is, two days after savoring that incredible meal, my already imposing tootsies – about 15 DDs, depending upon the shoes – ballooned to almost twice their size, excruciatingly painful to both touch and pressure.

Imagine trying to walk steadily on a pair of small inflatable rafts, each with 100 nails sticking up into your feet. Now double that. That's close to the pain I was suffering.

Maybe the experience was so horrific that I have pushed it out of my memory! I only had one pair of shoes that would fit me, a pair of stretchy black sandals Karen bought for me on a whim. (Thank the Lord it wasn't February in Michigan!) At one point the misery became so unbearable that I would actually crawl around the floor of my apartment, my feet slightly elevated off the floor behind me and tears streaming down my face, rather than even consider the possibility of placing weight on my delicate dogs.

Once I moved to Illinois, I found a general practitioner, Dr. Randall Megeff, who had the courage to prescribe a combination of anti-gout drugs (which are potentially hazardous to the kidneys) in a well-monitored dosage, and I have had no problem with pain or swelling since. But I must tell you about the incredible act of kindness that took place during this ordeal.

Karen and I were in West Michigan for the weekend – I was getting around haltingly by means of a walker – and having Sunday breakfast with our friends Frank and Lisa Johnson from Ann Arbor. I went to high school with Frank, who now owns a very successful heating and cooling business, and have considered him a good friend for decades.

I casually mentioned the fact that we were trying to pack for my move to Illinois and having a devil of a time due to my infirmity. Without missing a beat, Frank looked up from his cup of coffee and turned to his wife.

"Lisa, have we ever been to Champaign, Illinois?" he asked.

"No, we haven't," Lisa replied.

"Would you like to go? It's a college town, you know."

"Fine with me."

"You'll need a truck. We have trucks," Frank said. "I'll just borrow one for a weekend. Tell me when you want to move."

Not only did we escape a truck rental fee, but the Tuesday before we had scheduled the move Lisa and Frank called me. "Are you at home?" Frank asked.

When I indicated I was, about an hour later he and Lisa showed up at my doorstep in a panel van, wearing old clothes and ready to work. They played Ninja Movers with the "priceless" junk I had accumulated over the years.

They sat me in a corner (I still couldn't walk, remember) and proceeded to lay boxes of my stuff before my swollen feet.

One of them would open the lid. "Can you tell me what's in this box?" they asked.

If I couldn't identify the contents within five seconds, I lost the box.

"Not going!" they would shout, and carried the box into their panel van. I was horrified!

By the time they left, they had completely filled the van with boxes of my time-honored garbage, destined for donating, recycling or plain old trashing. Talk about being proactive!

And you know what: to this day I can't tell you everything they took that night, and I haven't missed a single thing.

Needless to say, I cannot begin to imagine how difficult moving would have been without them. God sends angels into your life at the most unexpected moments. Sometimes it can be people you've known for years.

I've said it to them, and to anyone else who would listen, but let me now say it in writing: Thank you, Frank and Lisa. You are amazing human beings. You almost made having gout a blessing in disguise.

Me with Lisa and Frank Johnson

It Just Came Pouring Out

2009-12-04T13:48:00.000-06:00

At the end of our initial visit to the DaVita dialysis center in Decatur earlier this week (see "Hey! This Stuff Is SERIOUS!" Dec. 2 and "Port of Entry" Dec. 3), we met with the facility's social worker, Theresa Kircher. She presented the mountain of paperwork I had to sign in order to make sure my insurance pays DaVita for its efforts and that they're absolved from liability in case my stomach makes like the classic scene from Alien and something bursts out.

But near the end of our meeting, Theresa hit me with a question I totally was not expecting.

"How do you feel about being here and getting ready to begin dialysis?" she asked.

No one had ever inquired about my state of mind concerning my condition quite so pointedly before. Maybe it was because I was in a particularly vulnerable or emotional state, having just completed my first Peritoneal Dialysis practice session. But when I opened my mouth to answer, not even I could believe the words that came rushing out.

I can't remember my words verbatim, but I sure can recall the general sentiment.

"I'm angry, and I'm disappointed. Like Mickey Mantle said in his last press conference, if I'd known I was going to live this long, I would have taken better care of myself. I'm seething with the knowledge that I brought most of this upon myself by not controlling my high blood pressure much sooner, and I feel mortal, weakened, like damaged goods.

"I hate the idea of being dependent on outside sources or mechanical contraptions to stay alive and healthy. I hate having to take more than a dozen pills every day, having to schedule a week's worth of training sessions here to learn my dialysis procedure, having three different specialists sending me bills.

"I hate being pushed and poked and prodded, having my blood drawn so often that I feel like I'm stocking the Red Cross singlehandedly, having all my bodily functions monitored on a constant basis. I hate knowing that this DaVita center soon will become my second home, since I'll have to come back at least once a month for checkups.

"I hate knowing I have to wait for someone else to die, or for a suitable donor with my rare blood type to emerge, before I can even think about receiving a replacement kidney. And I particularly detest the idea that the goal I'm ultimately working toward is to have my body sliced open, getting a foreign organ stuck inside me and praying that my body won't reject it.

"So no, all things considered, I'd rather be anywhere else than here right now. Even Hell seems like a preferable alternative."

The room fell silent. Theresa smiled and said something about a lot of people feeling that way at first.

I don't believe I've ever been so honest about my thoughts about dialysis and my medical condition before – not even to myself. Usually such confessionals can be cathartic, cleansing for the mind and spirit.

Me, I just grew sadder. I felt very empty inside.

Port of Entry

2009-12-03T09:36:00.003-06:00

Yesterday we discovered the impressive list of health dangers – up to and including death – associated with peritoneal dialysis (PD), my chosen method for future kidney treatments. But I neglected to show you the results of the operation that will make PD possible in the first place. Maybe I unconsciously channeled my old ad agency experience and waited an extra day to heighten excitement for the big "reveal"!

At any rate, before my training session could begin at the DaVita dialysis center in Decatur, the surgically-created new hole in my belly had to be inspected, cleaned, sterilized and have its dressings changed. (Beware: the following images may not be recommended for the faint of stomach.)

First, the dressings applied during my outpatient surgery on Nov. 24 had to be removed:

There had been some seepage after the procedure during the healing process. Notice the dried blood at the point of incision. (Also note how ashy my stomach had become after a week of being covered by the clear plastic tape that held the gauze in place!)

Once DaVita nurse counselor Diane King took the old dressings away and cleaned the area around the incision, you could clearly see the dialysis port.

See how the tube was inserted in the midsection cleanly – Diane confirmed that my surgeon, Carle Hospital chief of interventional radiology Dr. Michael Neuwirth, is one of the best in the region at this procedure – then burrowed about an inch under my skin before being inserted into the peritoneal lining of my abdomen.

After being cleaned, the site was ready to accept its first dialysis test run to see if the solution that's used for the PD process would flow in and out of my tube smoothly.

Diane set out the materials she needed for the dialysis run-through, including the 2500cc bag of fluid that would eventually find its way into my body, then drain out again.

She disinfected her worktable two times with bleach water, scrubbed her hands for 45 seconds with antibacterial soap, switched latex gloves at least three times and placed masks on everyone in the room to reduce airborne contamination before she began the procedure. All this for the run-through? Hokey Pete! I don't know how you would react, but I was getting plenty nervous and creeped out.

She affixed what's called a transfer set to the end of my tube; that's the attachment that actually hooks to the tubes coming out of the fluid bag. The whole process of filtering the solution into my body takes no more than 10-15 minutes. Then the idea is to keep the solution inside my body for at least two hours at a time (that's called letting the solution "dwell"), draining it out and repeating the process four times a day. Eventually, after I master this manual technique, I can upgrade to a "cycler," a bulky but portable machine that will accomplish the same function overnight when I attach my transfer set to it.

So much to learn, so many precautions to take, so many details. It's all very overwhelming. We will have at least three training sessions of 4-5 hours each, then a home visit by Diane as my final exam, before being allowed to do the manual PD treatments by myself.

We all can rise to challenges as they're presented to us, no matter how great. That's what being human is all about. But I'd be lying if I told you I'm looking forward to this one.

Hey! This Stuff Is SERIOUS!

2009-12-02T07:38:00.000-06:00

On Tuesday, Dec. 1, 2009, the first day of the rest of my life arrived. As you may remember, a week ago, on Nov. 24, I underwent outpatient surgery at Carle Hospital in Urbana, IL, to have a catheter tube permanently implanted in my midsection in preparation for peritoneal kidney dialysis treatments to come. Yesterday, at the DaVita dialysis center in my new home of Decatur, IL, the surgical dressings were removed for the first time since the operation, the incision site was inspected, cleaned and sterilized, and a practice dialysis session was held to show me how it's done and to make sure the catheter is working properly.

Notice the look of uncontrolled terror in my eyes.

Right off the top, we (that is, my wife Karen, my mother-in-law Linda and I) received some discouraging news. Diane King, the delightful and extremely knowledgeable DaVita dialysis nurse who conducted our initial two-hour training, relayed the information that my kidney specialist, Dr. Attia, had decided to move up the start of my dialysis from sometime in January, after the holidays, to as soon as my incision completely heals in around two weeks. My latest lab results, from blood drawn on Monday, were not encouraging. My potassium levels were up, and my creatinine markers (the waste molecule generated by muscle metabolism that's an indicator of kidney function) were elevated.

Reality hit us all between the eyes. After talking about the possibility for many months, it was time to get started on daily dialysis treatments. Karen's eyes briefly filled with tears.

This is me with Diane King, the DaVita dialysis nurse. She has a voice like Pollyanna's, which somehow makes disheartening news easier to accept.

But then, before the training process begins in earnest, the first document among the mountain of paperwork I am required to sign is the "Authorization for Consent to Peritoneal Dialysis Procedure." And on the first page, the "significant risks associated with the procedure" are outlined. They include the possibility of:

• Contracting an infection in the peritoneal cavity (called peritonitis), the catheter tunnel or the exit site;

• Developing hernias in the groin from the pressure of the dialysis fluid;

• Erosion or perforation of the bowel walls by the catheter;

• Being stricken with hydrothorax, the leaking of dialysis fluid into the chest cavity;

• Sclerosis or scarring of the peritoneum, which can result in obstruction of the bowel, and, of course,

• Death.

Whoa! Hold on! Back the truck up! I don't recall anyone ever mentioning any of this before the catheter was stuck inside my belly, when peritoneal dialysis (PD) was being praised as the more convenient and advantageous form of kidney assistance. I tend to be the kind of person who looks at the glass as half full, but come on!

Well, we're in this all the way now, come what may. More on the first dialysis run-through treatment tomorrow.

Am I Thankful? Are You Kidding?

2009-11-30T13:48:00.001-06:00

Last weekend was just about as wonderful a Thanksgiving season as anyone has a right to enjoy. On Thursday evening, seated around our sumptuous dinner feast, we instituted a new holiday tradition: We went around the table and asked each person to say what they were most thankful for this year.

A few tears were shed in the process, and I'm not ashamed to admit I may have dropped one or two into the turkey gravy myself. I think they finally had to ask me to shut up before the meal got cold. What am I most thankful for in 2009? How about everything?

You know how some years seem to blend into each other with the passage of time, and it becomes difficult to remember exactly what milestones happened when? That certainly never will be a problem for me when it comes to 2009.

It isn't every year that a guy gets married, loses a job, leaves the city where he's lived for 30 years, moves three times in six months, relocates to his in-laws' basement, becomes a co-parent to 9-year-old twins, passes out on the bathroom floor and gets hospitalized for a gash on his forehead, and has a catheter implanted in his midsection in preparation for kidney dialysis. Yeah, it'll be a hard year to forget.

Through it all, I'm extremely thankful for my health, odd as that may sound. I don't have to look too far to find people in much worse shape than I'm in, Vicodin is a miracle in terms of lessening the pain from my recent surgery, and all in all I'm feeling great. People who oughta know tell me I should
begin feeling even better once my dialysis begins and my body receives the help it needs to cleanse my system properly. I'm looking forward to finding out if they're right.

I'm also thankful for a wonderful, caring family that has taken me into its fold as if I was a prodigal son, expressing love for me in so many ways despite the physical infirmities I brought along as baggage.

But what am I most thankful for? That's easy. Anyone who has met my wife, Karen, comes away remarking about what an amazing person she is, and if you haven't met her, my sincere hope is that you get to someday.

Regretfully, I've had a bit of experience assessing wives in my lifetime, and no man could ask for a more supportive, loving, objective, cheerful, committed partner than the one God has blessed me with. There is no doubt in my mind that the Lord brought us together, because I cannot think of another possible scenario where a guy living in the 'hood on Detroit's East Side could meet and fall in love with a woman residing and working in central Illinois.

Karen is truly one of the nicest individuals I have ever known, and I am a better man today for having her as such an integral part of my life. Happy Thanksgiving to me.

And she can make some mean stuffing, too.

Wanna See My Scar?

2009-11-25T00:50:00.001-06:00

Well, you can't. I haven't even seen it yet, and probably won't for at least a couple of weeks.

Here's what we all can see, the surgical dressing placed tightly over the site where my dialysis catheter was inserted, then taped down tighter than an Adam Lambert liplock. If you look hard, you can see the outline of tube that's now sticking out in the suburbs of my belly button.

The whole procedure went very well (or so I was told; I was out like a power shortage) and thank you all for your prayers and support. I could feel your encouragement.

I had to wait more than two hours in prep before finally being wheeled into the coldest operating room I can ever remember. Surgery in a meat locker; how invigorating. The delay did give me time to watch "Divorce Court" and "The People's Court," however, and allow me to extol the virtues of Xanax as a quality mood relaxer!

Dr. Neuwirth, the surgeon who implanted the catheter, said he was going to put me into "twilight" for the operation. It might as well have been "midnight." I remember remarking to him that his "third cousin," actress Bebe Neuwirth, is playing Morticia Addams opposite Nathan Lane in The Addams Family musical in Chicago through January. We chatted about that briefly; the next thing I knew I was in recovery. I love it when operations go like that!

So, like Uncle Joe, I'm a-movin' kinda slow, but I should be able to sit upright and take nourishment – especially with Thanksgiving just two days away! The tube is inside me now. The adventure continues.

The Hole Truth

2009-11-24T08:12:00.001-06:00

OK, I've really been obsessing over the implanting of my dialysis catheter. I didn't want to annoy anyone – especially you – by whining and wailing about it the past few weeks, but I've really been able to think of little else.

This morning at about 10 a.m. EST, Dr. Michael Neuwirth, chief of interventional radiation at Carle Hospital in Champaign, Ill., (doesn't that sound impressive?) will cut open a new hole in my midsection, stick a wire inside it and use the wire as a guide to insert a tube into my peritoneal cavity. The tube eventually will carry fluid to cleanse my blood the way my kidneys would if they were working properly.

I realize I'm probably making a mountain out of a meatball, and the reality of the operation likely will be far less ominous than the horrors I've concocted in my mind. But I'm extremely sensitive to the fact that after today, my body image will be altered for a long time – possibly forever. And having a tube sticking out of your side changes the way you do almost everything, from taking a morning shower to getting dressed, to exercising – I'm not even sure I'll be able to sit the same way anymore.

I guess one fortunate thing is that I do have some personal history to refer to here. Back in 2002, my family doctor detected a lump in my neck during a routine physical and recommended I get it checked by a specialist. A year later, during my annual physical, my doctor asked, "Whatever happened with that lump?"

"What lump?" I asked, channeling the comedic timing of the late Marty Feldman in Young Frankenstein.

(Those who know me recognize that I have a memory like a sieve.)

This made the doc pretty steamed, and he insisted I make an appointment with a specialist while I was sitting in his office. A week or so later, the ear, nose and throat surgeon gave me the news: He was going to have to operate and cut the lump out of my neck for examination.

I remember looking in the mirror the night before the surgery, staring at my face and thinking, "I will never, ever look this way again." The eight-hour operation went smoothly, the growth turned out to be benign, and the recovery process was painful but brief. I had a tube coming out of my neck and into a small bag at my side for nearly two weeks to collect excess blood and fluids while the healing took place.

Eventually, though, the tube came out (with a large sucking sound, as I recall), and today the scar behind my ear is virtually invisible. So as horrible as I thought having neck surgery was going to be, time truly does heal all wounds.

One unusual side effect remains, however: During the operation, surgeons had to remove my saliva gland along with the tumor. Now my body has never recognized the fact that the gland is no longer there, so every time I eat something particularly spicy or flavorful, the "ghost" gland on the left side of my neck begins to sweat. (Someone once said my neck is spitting, but that seems a bit distasteful.) I asked my doctor about it and he says he's never heard anything like it before.

So that operation made me unique long before the procedure I'm having today. If you think about it, though, send up a prayer or a few good wishes for today. And if I'm ever having a meal with you and you see my neck begin to perspire, you'll know I'm really enjoying my food.

Detroit

2009-11-16T11:09:00.001-06:00

I had a most productive and interesting five days in Detroit last week. In addition to meeting the dynamic and compassionate philanthropist Doreen Hermelin (see recent "Doreen" and "Rootlessness" posts), I spent a fascinating afternoon with a Detroit historian, John Green, who seems to be waging a valiant – but losing – one-man war to ensure the achievements of African Americans throughout Michigan history aren't forgotten.

I spent one evening "receiving visitors" at Dino's Lounge in Ferndale, MI, and caught up with two beloved friends I don't see hardly often enough: Bill Jentzen (left), my former assistant at Wayne State University, and Santiago (why he prefers "Jimmy" I'll never understand!) Martinez, who had been part of my life in Detroit for decades.

I spent an extremely enjoyable and constructive Wednesday morning in the office of my longtime friend Carolyn Krieger-Cohen, one of Metro Detroit's most creative and effective PR executives. In the course of three hours we came up with at least a half-dozen ways we could work together to support some of her clients and make me some money!

Thursday morning may have been the unexpected highlight of my trip. Got a call from my old friend Brian Pastoria, who with his brother Mark runs the Harmonie Park recording studios in downtown Detroit, asking if I could squeeze in time to come in and record the voiceover introduction to "Christmas in Detroit 3," their annual benefit CD featuring holiday songs recorded by local artists. He wanted me to do it because of my many years working with Detroit musicians in my role as a music critic. It's very nice to be remembered for past accomplishments, and may I add that I nailed the intro in one take! Yeah, I still got it!

I also ran into another great guy at the studio, Jimmy Risk, currently publisher of the online publication Your News Detroit. All in all an extraordinarily delightful visit!

Jimmy Risk, Mark Pastoria, me and Brian Pastoria

And just before I dashed out of town, I got the chance to have lunch again with my "media lunch bunch," including Specs Howard School of Broadcast Arts VP Dick Kernen, marketing exec Michael Seltzer and the always delightful Terry Bommarito Holmes, who I've known since I first moved to Detroit in the late 70s. Let me tell you, we laughed until we cried – especially when I went into my shtick about the differences between Detroit and my current life in central Illinois.

Me with Yoda (Dick Kernen), Terry Holmes and Michael Seltzer

Wherever I went, it seemed, I would hear someone say, "You look great!" as if they were more than a bit surprised. They would say it the way people say it to someone who's returned home after major surgery, or a person who'd dropped 40 pounds since the last time they were seen. And the people who made such exclamations later said that they had been reading this blog.

Made me think: I've got to start emphasizing the fact that despite my kidney ailments, I'm still feeling fine. I'm getting the sense my Detroit friends and acquaintances expect to see me on crutches, hooked up to filtration devices or rolling through in an iron lung!

Feeling Different

2009-11-09T20:28:00.003-06:00

I didn't even know I was receiving comments on some of these blog entries until last week, when my wife pointed out that a number next to the word "Comments" at the top of the page meant that someone had responded to what I'd written.

Hey, I never claimed to be real bright.

So immediately I raced back through all my postings, from the very first, to catch up on the reader comments and reactions. Many were quite gratifying, and my sincere thanks to everyone who took the time to write back. But one recent note really stood out from the rest. I don't know if you have the ability to read the blog comments along with me (darn, I wish I was smarter), but in case you cannot I won't identify the writer by name. Suffice it to say the reply comes from a woman I do not know.

"Jimmy, if you are like me," she wrote, "the only time you feel like you are really different from everyone else is when the doctor looks at you and says, 'I don't think you realize how well you are doing for as sick as you are.'"

She goes on to describe her debilitating, life-altering affliction: ulcerative colitis with systemic disease that has affected her entire gastrointestinal system as well as her eyes, skin, liver and joints."I have been what I call 'real sick' intermittently over the past 20 years, but I do not think of myself as real sick," she wrote.

"Have you felt like people treat you differently after they find out? I have. Anyway, changes are hard, especially when they seem so invasive."

The funny thing about my condition is, I don't feel any different. At all. I think about it when I swallow my handful of pills a couple of times a day, but physically I feel exactly like I did before I knew anything was wrong with my kidneys in the first place.

But I understand what she's talking about with the reactions of other people. When they ask, "How are you doing?" you can sense the deeper meaning. Some people say it the way they would to a senior citizen in the hospital. And if you look into their eyes, often you can see the hint of sympathy, or concern, or pity, or – I'm not sure what the emotion is, and it may be different for different people, but you can tell there's something going on behind their faces.

That's why I try not to talk much about my kidneys or health (he says, writing about them in a blog). I try to politely answer questions when I'm asked, but I'd really rather talk about almost anything else. I get tired of thinking about it, and my condition is going to do what it's going to do. Talking about it isn't going to improve it, far as I know.

Sometimes, however, that approach will come back to bite me. I'll casually mention something about dialysis in a conversation, for example, and the person I'm talking to will say, "Dialysis? What? What are you talking about?" Then I realize I may have done too good a job of keeping the details to myself.

Thanks for that provocative comment, you-know-who-you-are. Keep 'em coming, y'all.

Rootlessness

2009-11-09T09:12:00.003-06:00

Well, I had an amazing first evening back in Detroit Sunday. Drove seven hours to spend 30 minutes with my interview subject, an amazing woman named Doreen Hermelin who I'm profiling for HOUR Detroit magazine. (See "Doreen," Friday, Nov. 6 post.)

A half hour was literally all the time she could squeeze in for me, as she was dashing to fulfill family commitments and business details before boarding a flight to Argentina this morning. I was happy and thankful for every moment. Writers know that face-to-face contact, however brief, still is infinitely better than telephone or Internet communication when you're assignment is to capture the essence of a person through words.

When I arrived at her home for the interview, however, I literally could not believe my eyes. You hear so many Chicken Little stories about the doom and death of Detroit that, even though you know better, you sometimes tend to forget that everyone here is not in foreclosure or waiting for their government bailout.

This is the view from the front gate of her home:

And yes, like a goober I stopped to take a picture, like those gawking tourists on the Hollywood home tour, because little brown people who grew up in Spring Lake, Mich., just don't get invited to places like this every weekend.

As I drove down the long, winding road, over the bridge for the creek that runs through the property and past the gigantic lawn sculptures, I kept looking over my shoulder waiting for security guards to demand some identification, then escort me off the grounds. When I finally got to the door, Ms. Hermelin took me into her dining room, an immense space dominated by a long table surrounded by 12 chairs. And there, in one corner of the table, was a tuna fish sandwich on rye she had prepared for me.

Now, in the 35 years or so I've been interviewing people for a living, I cannot remember any subject ever making me a sandwich. She said she was going to make it when we spoke on the phone as I was racing to her house, but I genuinely thought she was kidding. But as she repeatedly said, she knew I had driven a long distance just to speak with her, and figured I had to be famished.

(Problem with eating tuna fish sandwich while conducting an interview: hard to ask questions when your mouth is full, and you don't want to appear ungrateful by not eating it.)

As I drove away from this magnificent residence, though, I got to thinking. I love Detroit, and I always will; I became a man here, and there are so many fantastic people who live here that I'm proud to call friends. One of them, Larry Kaplan, who was the photographer for the first rock concert I ever reviewed for The Detroit News back in 1979, has devoted a room in his condo exclusively for me so I'll never have to worry about accommodations in my travels back to Detroit.

But this isn't home anymore. I'm so thankful to have a place to stay when I'm here, but I don't have an address to call my own after 30 years of living in this city. When I'm here, I long to return to the pastoral surroundings and endearing chaos of my home in Decatur. When I'm in Decatur, I'm girding up to return to the bustle and intensity of a working visit in Detroit. Right now, I feel like a man without roots. That will change with time, I'm certain, but it's a very strange sensation I've never experienced before.

About the only place I truly feel at home these days is behind the wheel of my car – usually driving between Decatur and Detroit.

Doreen

2009-11-06T08:56:00.000-06:00

Last month I was assigned a big feature by my editor at HOUR Detroit magazine, a profile of a southeast Michigan woman named Doreen Hermelin. I had heard her name before, but I think it's fair to say, especially since I now reside at the end of a road in Decatur, Ill., that we don't travel in the same circles.

I had other stories to finish before turning my attention to her article, and I knew I would need to sit down across from her in person, like Mike Wallace used to do on 60 Minutes, if I really wanted to capture the essence of the woman in our brief time together and embellish the story with detail. So, I figured, I would track down Ms. Hermelin this week, solicit her interest in doing the feature, then drive to Detroit sometime next week to meet with her.

Should be more than enough time, right? After all, I'm clearing an entire week on my schedule to meet with her for less than an hour. How busy can any one person be?

Well, did I ever find out the answer to that question! After finally locating Ms. Hermelin and getting her on the phone (no simple task in itself, let me tell you), the cooperative and very gracious lady explained that she was getting on a plane Monday morning to fly to Argentina on business, will travel from there to New York, and doesn't expect to be back in Detroit until a day or so before Thanksgiving.

Hokey Pete! I thought. It turns out, as you may know, that Doreen Hermelin is an internationally renowned professional fundraiser, national president of the educational organization ORT America, former U.S. ambassador to Norway and probably a dozen other things I don't know about yet.

After several minutes on cellphone negotiations, it was decided that she could squeeze in 45 minutes to talk to me while she was packing for her trip to Argentina – and after her grandson's soccer match on Sunday afternoon.

Nobody should be that busy, I thought to myself. Then again, every time we think our lives are too jam-packed and hectic, we run into someone like Doreen Hermelin and realize that by comparison, we're nearly in semi-retirement.

Yet with all that, she makes time for a grandchild's soccer game. I think I'm going to like her.

Tube Stake

2009-11-04T09:58:00.000-06:00

Well, the die officially has been cast: After considerable negotiation (and a bit of whining on my part), we have set the date and time for the operation that will insert a permanent catheter through my midsection and into the peritoneal lining of my abdomen. It's 9 a.m. Tuesday, Nov. 24, and if you'd like to send up a little Thanksgiving prayer about that time I certainly wouldn't oppose it.

My nephrologist, Dr. Attia, assures me that this doesn't mean dialysis will begin right away. But my kidney function continues to deteriorate, he says, and when the time does come he wants the dialysis port to be fully healed and ready for operation.

I think it never actually dawned on me that my recent consultation with Dr. Michael Neuwirth, the surgeon who's going to do the implant procedure, would mean plans were in place to do the operation so soon (see "The Doctor With X-Ray Eyes," Oct. 30). I'm not ready. I don't think I'll ever be ready.

When I got the call from Dr. Attia's office, I was told they wanted to do the operation next week. Whoa, too quick! Besides, I plan to be out of town on business next week. I suggested the week after, but Dr. Neuwirth is on vacation. (Whew.) That pushed the creation of my second belly button back to our current compromise date of Nov. 24.

If I've learned anything over this past year or so of infirmity, it's that the body is nothing more than a housing for our soul and spirit – and not a particularly sturdy one, at that. We spend so many years of our youth protecting it and pampering it, trying to keep it smooth and sleek, yet as we grow older we end up patching holes and replacing parts anyway. But there's something about this catheter that really has me rattled.

I think it's because an appendage sticking out of my gut might make me feel weaker, or sicker, more vulnerable – less whole. I had a very soft and intimate conversation with Karen the other night before we went to bed and suggested as much to her.

She looked me in the eye and said, "That won't matter, Jimmy. It'll just be something different. You'll always be sexy to me." What a magnificent life partner I have.

Taking Inventory

2009-11-02T09:37:00.001-06:00

I think that any month that includes such phrases as "whooping cough," "overnight hospital stay for observation," "CAT scan," "head gash" and "unconsciousness" deserves a bit of quiet reflection once all the dust and blood have settled. So as we turn a page into November, and because so many of you have asked (thank you), let me give you an accounting of my current condition.

The vicious, body-shaking cough that led to all this foolishness is all but gone. And after a full week of uncontrollable hacking, I can't begin to tell you how welcome the sounds of silence are. The combination of cough medicine with codeine, a prescription cough drug called benzonatate and antibiotics, along with much rest and the natural passage of time, seemed to do the trick. (Antibiotics came into play because doctors at St. Mary's Hospital in Decatur elected to treat my illness as if it was whooping cough even though it probably wasn't, because the symptoms were so similar.)

The lump over my right eye, the result of my passing out in the bathroom at 5 a.m. last Wednesday and banging my head against the sink (I guess, since I was momentarily unconscious; someone could have snuck in the toilet and beat me upside the head with a socket wrench for all I know), has reduced to a swollen ridge behind the gash where I hit the sink, sort of like an eyebrow in 3-D. The cut was fastened at the hospital with super glue instead of stitches; the glue is starting to wear away now and there's an overwhelming urge to rip it away and see how well the wound has healed, but if I do I know there's a good chance my little blood geyser may erupt again.

Me in St. Mary's Hospital, Decatur, IL, 10-28-09

My eyeball itself is still extremely red and bloodshot, very sensitive to light, and my right eyelid is swollen. I am astonished at how much resulting damage occurred after an injury above my eye. I shudder to think what would have happened if the blow had struck my eye directly.

I really haven't had much time to think about my kidneys the last couple of weeks, which in some ways may be a good thing, although I continued to take all my medications every day as well as the anti-cough prescriptions.

I still get very brief flashes of the body surges I felt just prior to my blackout spells (which I think may have been caused by a negative drug interaction on top of the coughing attacks), so I'm trying very hard to keep all my body functions under control. It's like I'm running system checks every few minutes. "Head OK? Lungs all right? Eyes? How you doin?'"

And before I forget, the arrival of November means that the HOUR Detroit magazine article I wrote in October regarding my kidney adventures is now available online in its complete version. So if you didn't have the opportunity to read the last half of the piece or were too frugal to buy a newsstand copy of the magazine, you can read the entire story at HOUR Detroit_Best Foot Forward.

The Doctor With X-Ray Eyes

2009-10-30T07:06:00.000-05:00

No, he's not a mad or evil doctor, although in keeping with the eerie and bloody theme of my Halloween week that certainly would be appropriate.

Actually, Dr. Michael Neuwirth is a very friendly and forthcoming fellow – and since he's the man who someday will insert a semi-permanent tube through my belly and into the peritoneal lining of my abdomen, his cheerful personality makes me happy, too.

Karen and I met recently with Dr. Neuwirth (no relation to the actress Bebe – I know because I asked, which should give you an idea of how our conversation went), the chief of interventional radiology for Carle Clinic. I'm not sure, but I think "interventional" in this case is medical-speak for "I'm gonna stick something in ya."

This meeting was simply a consultation, a "how you doin', glad to meet you" session. None of us have any idea when I will need to begin dialysis – the kidney function numbers will tell us that – but people around here are big on preparation and information, so my nephrologist, Dr. Attia, set up this get-together so I would have an idea of what to expect.

Whenever it happens, the operation will be an outpatient procedure performed while I'm under heavy drugs (yay!) and take about two hours to complete. I get to pick the side where the catheter will live, but Dr. Neuwirth says most people prefer the right side. (Which makes no sense to me, since most people are right handed.)

"I go in four fingers to the right of the belly button and two fingers up," he explained. "That's where I do it. I use ultrasound to look for the entryway in. I insert a needle and watch the needle the whole way, as it goes through the skin into your abdominal cavity. Then I insert a wire and the tube goes in over the wire.

"This is all done with image guidance, so I see what I'm doing the whole time. I don't just open you up, stick a tube in and close you up. I do this with X-ray vision."

He's done this procedure hundreds of times, he says, and I feel really good about the fact that when the time comes, Dr. Neuwirth will be performing the surgery. I don't know, I guess you could call it....

Wait for it....

A gut feeling.

My Halloween Horror

2009-10-28T06:47:00.004-05:00

Imagine this: You wake up in the middle of the night, as you do far too many nights, to go to the bathroom. One second you're sitting on the can, thinking about nothing in particular. You begin to cough.

The next thing you know, you're on your hands and knees on the bathroom floor, surrounded by blood. There's blood on your clothes, blood running off your hands and down your arms, blood dripping off your chin. What the blazes is going on here? you think. Suddenly, you realize the blood you're immersed in is yours!

You clamber to your feet, look in the bathroom mirror and discover there's a huge gash above your right eye – and you have no idea how it got there!

Sounds like the beginning of some hackneyed Halloween fiction, right? Well, it actually became fact for me in the wee hours of Tuesday morning, necessitating an overnight stay for observation in St. Mary's Hospital in Decatur, Ill.

What we now believe happened is, I blacked out while seated on the toilet, pitched forward and bounced my head off the corner of the bathroom sink – missing my right eye by no more than an inch – then came to on the floor. For someone who's never passed out before in his life, and coming on the heels of Saturday's terrifying out-of-body experience (see "Death," Oct. 26), I was quite frankly scared a-plenty.

Me in St. Mary's Hospital, Decatur, Ill.

The offending gash – superglued, not stitched! Ain't science sumthin'?

Of course, nothing similar occurred Tuesday night in the hospital. Karen, who spent the night with me, watched over me like a loving mother hen and insisted on walking me to the restroom anytime I had to go, and besides, you know whatever's wrong with you instantly feels better when the doctor's around. Except for the swollen right eye (that's something to see, isn't it?), a stiff neck and bruised knees, I feel pretty fine, everything considered.

Here's the best thinking now about why this happened: I've had a horrible cough for more than a week, but when I begin coughing uncontrollably (which happened in the bathroom Tuesday) the oxygen literally cuts off to my brain for a moment and causes me to black out. Or, the medication prescribed to help ease my coughing spells, Benzonatate, has dizziness as one of its possible side effects. Or a combination of the two. The doctors don't believe I have whooping cough (which would make me feel about 95 years old), but they have decided to treat my condition as if it is, because my symptoms are similar.

Whatever, as I check out of St. Mary's today, I can't help but think about how much differently this incident might have played out if I still lived alone, and to be soooo grateful for my new family: a wife who cares passionately, a father-in-law willing to be awakened from a sound sleep at 5 a.m. to drive to the hospital, and a mother-in-law willing to get on her hands and knees and clean up the bloody bathroom after we departed.

My mother-in-law, Linda, said yesterday, "Things like this are the reason we are supposed to be living together." I think she's very wise.

Death

2009-10-26T10:36:00.000-05:00

I have gone back and forth over whether to share this with you today. But I haven't been able to stop thinking about it since it happened, so perhaps writing about it will prove cathartic. Let's see.

I experienced one of the most terrifying moments of my life over the weekend. It was a moment, too, no longer than that, and unlike anything that's ever happened to me before.

As I may have told you, I've been suffering from a chest cold of some kind for a week or so, distinguished by a bone-rattling cough that sends shivers down my timbers. It's been exacerbated by the fact that, because of my delicate kidneys, there's virtually no cough or cold medicine I can take for relief. On Saturday night, after hacking every 15 seconds or so while trying to fall asleep, I finally got out from under the covers and sat on the side of the bed in frustration.

Suddenly my coughs began coming in rapid-fire succession, one on top of the next, so quickly I could not catch my breath. My body began to shiver. My head pounded. I gasped for air. It felt like a giant ball of energy was gathering steam in the center of my body and trying to burst through the top of my head. I lost control of my bladder.

I actually thought I was about to die.

I felt my spirit trying to leave its mortal shell, and my body fighting to keep it inside. The two have been together a lifetime, you see, and breaking up is hard to do. I have never been around anyone at the moment of their death, but from what I've gleaned from people who have, what they have witnessed is very close to what I encountered.

The moment passed as quickly as it arrived, and I stumbled to the bathroom to clean up and make sense of what had just happened. I thought back to when I was a teenager and accidentally jumped into a lake much deeper than I expected. As I sank lower and lower into the darkening water, I was certain I would never see daylight again. My feelings then and now were eerily similar.

I thought about the suddenness and the inevitability of death. It's coming when it comes, and despite our most meticulous plans there's not a doggone thing we can do to delay its arrival. I've always been a spiritual person and a practicing Christian, but I thought about how much closer I've grown to God since my kidney diagnosis and how guilty and hypocritical I feel about needing a serious life challenge to renew my faith.

I feel better today, and hope to be completely well by week's end. Thanks for the reminder, Lord. We are Yours, and in Your care. Today is a great day. I plan to live my life to the fullest until Saturday night's fever is more than a false alarm.

A Tree Blows in Decatur

2009-10-23T10:20:00.000-05:00

If a tree falls across your driveway overnight and there's no one to hear it, does it make any noise?

Well, it certainly does the following morning. I had another topic in mind to share with you today, but the wild-eyed looks of excitement on the faces of Emma and Madison quickly convinced me that more pressing matters were at hand.

"The tree! Look at the tree!" they wailed in unison.

Well, it was something to see, all right. (That's my mother-in-law, Neena, and our new puppy Sophie surveying nature's revenge.)

Thank the good Lord no cars were damaged (we have four around the house now on a regular basis), nor the brand-new bedroom addition that was just completed for Karen and me. But a single tree branch threw our entire day into a tizzy. Who's going to drive the girls to school? Who's going to move who's car? What about Neena's trip to the doctor this morning? How are we going to cut this monster branch down to size? And what are we going to do with all this WOOD?

Much to my amazement, my father-in-law, Larry, a rugged "man's man" kind of guy if ever I've met one, does not own a chain saw. He's working the phones today, trying to find one he can beg, borrow or rent.

John Lennon has been receiving a lot of credit lately for having once said, "Life is what happens while you're making other plans." I don't know if he said it or not, but it surely does ring true today. My plans have been instantly reordered by forces much greater than you or I.

And watch for our huge blowout sale on firewood, coming soon.

Mr. McFarlin Goes to Washington – Sort Of

2009-10-22T05:59:00.000-05:00

I was shocked to say the least to receive a call Wednesday afternoon from Sally Joy, public policy consultant for the National Kidney Foundation of Michigan. Although we have never met, Sally knew way more about me than I did about her due to the first-person account of my crummy kidneys in the current issue of HOUR Detroit magazine.

(If you haven't seen the article, you can read half of it online at Best Foot Forward. HOUR only posts half its stories on the Internet during the month the magazine is on the newsstand to bait you into buying it, those sneaky rascals.)

Anyway, apparently the article has made me this year's poster child for kidney disease in Michigan, which I find the height of irony because my new medical insurance in Illinois won't pay for the tests needed to keep me on Michigan's donor list for a possible kidney transplant. Sally asked if I would consider appearing before the Michigan Legislature in Lansing next April 28 as part of the Foundation's annual Diabetes and Kidney Day.

"I'd like you to talk about reducing risks for diabetes, high blood pressure and kidney disease by making smart choices about lifestyle behaviors," she wrote in a confirmation e-mail, "and taking the medications you have been prescribed that manage the health conditions you may have. Of course, a good dose of 'your story' intertwined is mandatory!"

Oh, that shouldn't be a problem. I KNEW there was a good reason to do this blog! I'll have my testimony in Lansing written, rehearsed and polished to a high gloss repeatedly before April rolls around.

"Is it going to be anything like Mr. Smith Goes to Washington?" Karen asked. "Probably," I replied, "but I promise not to filibuster, cheese off the legislators or pass out in a dead faint before I'm through."

The end of Sally's e-mail gave me an unexpected dose of hope as well. "Best of health to you," she wrote. "I hope that in April 2010 you're still living with a stable creatinine [level] and un-hurting feet. – Sally, kidney failure 1985 and a working kidney transplant since 1986."

Twenty-three years with a transplanted kidney? No wonder her name is Joy.

Sick and Tired

2009-10-21T07:43:00.001-05:00

I caught a bug this week. Not in the literal sense, although there seem to be millions of bugs available for catching out here in the wilderness.

Sometime Monday my throat began to feel like I had been gargling sandpaper. Then the sweats began, followed in close order by chills, stuffy nose and a cough that makes my whole body shudder. No, it's not the swine flu, but it certainly makes me feel like a porker.

I know how this happened. In between moving out of Champaign and into Decatur, I was also trying to find time to write six stories last week on deadline. I was working late hours, deep into the night, and not taking very good care of myself. Now, voluntarily quarantining myself in bed Tuesday and today and feeling like warmed over doo-doo, I'm paying the price.

I certainly don't want to infect the in-laws, school-going girls and tiny new puppy who live here with me. (Karen's out of town on business this week, so she's immune from my plague.) Ironically, I was afraid that the girls might bring home some deathly virus from their classmates that would find its way to me. Instead, I'm the carrier. And what's worse, with all the medication I'm taking regularly for my kidney distress, there's virtually no over-the-counter cold medicine I can take that won't cause further damage. So I sniff, drip and honk. A lot.

All this is making me think, though, about how much better care I will have to take of myself in the future when (not if, unfortunately) my dialysis regimen begins. Sterility and consistency are such vital parts of the whole Peritoneal Dialysis routine – hooking myself up to a machine every night through a catheter implanted in my body, one of the few downsides of the procedure is the threat of infection at the connection site.

As my lifestyle changes to accommodate my health care needs, I'm going to have to become much more organized and regimented in terms of when and how long I work. And if you know me, that'll be like asking me to become shorter so I won't have to worry about big and tall sizes. I've always contended, "You can't control the muse! You have to write when the inspiration hits you!"

Well, my muse had better buy a watch.

Sophie

2009-10-20T02:54:00.000-05:00

Say hello to the newest member of our happy new little family in Decatur, IL: This is Sophie, a 10-week-old Lhasa Apso puppy Karen drove 90 minutes into the country to acquire Monday night. (And if I think I already live in the country, you can only imagine where Karen ended up having to go!)

We promised the twins, Emma and Madison, that we would get a puppy for the household after Karen and I moved and got settled in. (That's Emma's right hand hovering affectionately in the photograph.) And although we are faaarrrrr from settled in, we realized after making a few preliminary calls that the cool puppies tend to be snatched up quickly once ads are placed in the newspaper. He who hesitates has an empty leash. So once we saw the classified for home-raised Lhasa Apsos, we leaped into action like the A-Team.

Our new addition had to be a puppy, too; we didn't want to have to deal with an older dog's bad habits. If our dog's going to have any bad habits, by gum, she's going to get them from us!

You can only imagine the response when Karen arrived home with this little hairball in her arms. "Is that our puppy?" Maddie squealed with delight. After watching the whole family, including my mother- and father-in-law, interact with her, I have no doubt Sophie will be the most loved and attended-to puppy in all of central Illinois, if not the nation.

For her part, Sophie was very slow to warm to us. Karen was told that she didn't have a lot of interaction with people because she had been promised to a family member who eventually decided against taking her. (How can that be?) I got to thinking how extraordinarily traumatic this whole experience must be for a dog. One second you're hangin' in the barn with Moms and the rest of the litter, not a care in the world, and the next you're swept up by some stranger, tossed into the back seat of a car and driven away to parts unknown. It's a doggie kidnapping!

She was shy, and I'm betting she was terrified. But the girls couldn't keep their hands off her, of course. And I actually saw the bonding moment when, while in Madison's arms, Sophie realized we weren't holding her for ransom and might actually be OK people. Her tiny tail began wagging, her tongue slithered out into licking position and her chubby little bod began waddling with a lilt in her step.

We all need those bonding moments, when it suddenly hits us that we are loved, we are protected, and none of the people surrounding us are going to let anything cause us harm. Welcome home, Sophie.

A Moving Experience

2009-10-19T13:32:00.004-05:00

A Swarm of a Few Good Men Descend Upon Our Home

Well, our move from Champaign to Decatur, Ill., Saturday could not possibly have gone smoother. Six (count 'em!) husky, prairie-strong young men – Ryan, Jeremiah, Rick, Mark, Alan and Michael – from Harvest Bible Chapel where my in-laws are members drove the 50 miles from Decatur to our apartment with pickup trucks, strong backs and cheerful attitudes.

It wasn't so much that they volunteered their free time to haul the furniture, beds and appliances of near strangers on a Saturday morning, though that was remarkable enough. It was the way they did it. You know how sometimes you agree to help out with a big, physical task on the weekend, then dread having made the commitment once the weekend arrives? Not here.

Every one arrived with a smile on their face, goodwill in their heart and a tangible sense of camaraderie. These guys clearly enjoyed being in each other's company, and it showed. Many hands didn't just make light work; they made lighthearted work. We were completely finished in less than four hours, including the one hour for transportation.

Words cannot even begin to express my, and our, appreciation for their efforts. I was deeply touched, and thankful. And the next day at church, they were still happy to see us! Imagine that. The simple acts of caring and compassion, the willing spirit; this is how being a Christian manifests itself in daily life.

And when Emma looked Karen in the eye Sunday night and asked, "Now are you going to be living with us forever and ever and ever?" all the sweat and muscle aches seem justified.

Busting a Move

2009-10-16T04:12:00.001-05:00

Knock, knock.
Who's there?
Chaos.
Chaos who?
Total chaos.
Oh, I've been expecting you. Come on in!

No, it's not funny. And I'm not laughing. As the crowning blow to this dizzying rollercoaster of a year (and month!), this is the weekend of the Big Move.

On Saturday, at least four wonderful men from Harvest Bible Chapel in Decatur, Ill., where my in-laws are members but we are not, will make the 50-mile trek to Champaign-Urbana to help Karen and me move from our Champaign apartment to the basement of my in-laws' home. I feel like such a slacker whenever I say or write those words, and I've had some fun watching the reaction of my friends. "Yes, we're moving into Karen's parents' basement," I'll say, mournfully. "You know, times haven't been good...."

Actually, they've been very good. The real reason we're relocating is to help take some of the parenting pressure off my in-laws, Linda and Larry, as we all try to raise Emma and Madison, the 9-year-old twin girls entrusted to their care. (And, although we don't talk about it as much, to provide some family assistance in case my condition worsens or I receive a kidney transplant and need continuous care.) The basement has been remodeled, a new bedroom and closet space constructed, and it's all quite nice and cozy.

Now, I can't begin to tell you how impressed I am that Harvest Bible parishioners would give up a chunk of their weekend to help essentially two church visitors move their household. I don't know a single person on earth who enjoys moving in any fashion, and as far as I'm concerned this is Christian charity in action and we are extremely grateful. But if you count the year I spent in a Ferndale, Mich., apartment before marrying Karen and coming to Champaign, this will be my third move in two years. I am plumb sick of moving.

On top of it all, after writing four feature stories on deadline this week, today is the first day I've had time to assist Karen with packing and organizing. One day to prepare for a major life change. Whoopee.

Since our lease in Champaign doesn't expire until the end of the month, our plan is to move the furniture and big items out Saturday and keep a TV and air mattress here so that Karen and/or I can spend the last two weeks cleaning out the place. This actually doesn't sound too bad to me; in Ferndale, I slept on an air mattress in my living room every night, even though I had a bed in my bedroom, because I wanted to stay close to my 50-inch TV. I've never claimed I was sane.

So at least until November, I'll be living in two cities and not completely entrenched in either one. Meanwhile, I'll be packing, discarding, recycling and working steadily. Chaos, as long as you're here, hand me that empty box, willya?

Prescription for Terror

2009-10-15T09:10:00.000-05:00

Yesterday I visited one of the most frightening places in my new lifestyle: the drive-thru prescription window at Walgreens.

I had run out of Zemplar (sounds like the evil planet in a Star Wars spoof, doesn't it?), my Vitamin D supplement, and dropped off the empty vial the day before to have it refilled. It's the ultimate in convenience; you don't have to get out of your car, or even turn down the radio, for that matter. Just slow down long enough to toss the vial into the bank-teller-like drawer and speed off. After all, your name, address and the name of your drug are already on the container. What do they need you for? Walgreens goes so far as to send an e-mail alert when your prescription is ready for pickup, so you don't waste a return trip. All very smooth and easy.

The scary part comes when you go back to get the medication. Even though I have an insurance plan that greatly reduces the cost of most of my prescriptions – often no more than $10 – some of my drugs are so expensive that even with my deep insurance discount, the price is enough to make me swallow hard and break out in a mild sweat. And because the price isn't included on the label, it's always a guessing game how much any particular drug is going to cost. It's The Price Is Right, sickness or health edition.

I place my debit card in the slot, look mournfully through the glass into the pharmacist's eyes, and pray I can come closest to the actual retail price without going over my bank balance. The prescription and the card come back in the drawer. The receipt says $45.

Forty-five dollars! For these little bitty pills? If I knew what was in them, I'll bet I could make them myself for half that much! Shaking my head and wiping the sweat from my brow, I slowly place my debit card back in my wallet and suddenly remember that my Renagel, the phosphorus blocker, is about to run out, too.

It's at least twice the price. Horrors.

Do or Die-t

2009-10-14T00:22:00.000-05:00

Our new nutritionist, MaryJean, prescribed a 1,500-calorie-a-day diet for Karen and me if we plan to lose weight in a steady, healthy manner. (In case you missed it, I need to dump around 30 pounds in preparation for the procedure that will insert a catheter next to my belly button for a form of kidney dialysis.)

I tried to explain to MaryJean that I can do 1,500 calories just by poking my head into the refrigerator, but she suggested a slightly stronger form of self-discipline may be required.

The major problem with trying to diet while working at home is that food is never more than a few steps out of reach. Like the old Richard Pryor routine about cocaine, sometimes when I'm very quiet I swear I can hear the food calling out to me from behind the cupboard doors.

"Yo, Jim! Jimbo! Got some mighty tasty chips in here. Bar-be-cue, too, just like you like!"

"Hey, what about us pre-cooked bacon strips? You know you want some of this, Jimmy Mack!"

"Don't forget about us sardines! We're packed tight, but we taste right!"

Great googly-moogly, do I love to eat. Sometimes I think I really just like to chew. Maybe if I could develop a cud, or Karen could bring home a chew toy from PetSmart, it might serve as a reasonable substitute.

Karen found a Web site called MyFoodDiary.com where you can input what you ate for breakfast, lunch, dinner and between-meal snacks and the site will calculate the amount of calories, fat, sodium, etc., that you consumed. We tried it for the first time today.

My breakfast was a piece of cake – well, not literally, but it was a simple computation for MyFoodDiary – a bowl of cereal with soy milk and a cup of decaf tea. I breezed through lunch as well, a simple garden salad with modest embellishments, and even the single serving of Skittles I had for an afternoon snack (thanks a lot to whoever brought over the Halloween candy!) wasn't too damaging.

But when Karen got home from work she appeared too pooped to poach, bake or broil, so we decided to GO OUT for dinner. Ooooooh. After some deliberation, we decided on Outback Steakhouse. We could order grilled chicken, rice, maybe a few shrimp on the side and a modest salad. We'll drink ice water, not pop. I mean, how bad could that be?

Yowza! Did we learn a first-night lesson! We blew the entire 1,500-calorie wad, and more, on that simple dinner alone. I feel like I should just relegate myself to bread and water, but I probably can't do the bread, either. This is all so new to both of us.

And will someone tell those sardines to shut up?

You'll Eat Nothing, And Like It

2009-10-13T07:31:00.002-05:00

On our own initiative, Karen and I obtained a referral and made an appointment last week to see a nutritionist. I have not been ordered to begin a restrictive, "pro kidney" diet yet, but we figure I will at some point so I might as well get in the habit.

Besides, in order to have the permanent catheter needed for Peritoneal Dialysis inserted into my abdomen, I've been told by my nephrologist that I probably need to lose about 30 pounds of belly fat. (All my pants seem to agree.) Karen has lovingly decided to go on the diet with me, so I won't begrudge my lettuce while she's downing cheeseburgers.

We have tried to make better and wiser food choices to coddle my damaged kidneys, but Karen has found that the diet information she's researched on the Internet seems to be wildly contradictory from site to site. We decided to go to one professional source that we can actually look at and talk to, and abide by what the nutritionist says.

So we met with an effervescent wisp of a woman named Maryjean who asked me to come with a list of everything I'd eaten in the previous 24 hours, read it, then shook her head a lot. Obviously we'll need to eat less and exercise more if we intend to lose weight, but there's so much less to eat, too.

We received a list of foods that are naturally high in potassium, which is Kryptonite for kidneys, and generally should be avoided. That list includes:

Tomatoes
Tomato juice
Tomato paste
Spinach
Potatoes
Carrots (raw)
Baked beans
Squash
Potato Chips
Mushrooms (raw)
Artichokes
Lima beans
Broccoli
Melons (all kinds, including water!)
Peaches
Orange juice
Bananas
Raisins
Avocados
Brussel sprouts
Radishes
Peanut butter
Nuts
Scallops
Sardines
Cocoa
Hot chocolate
Dates

What's left, you ask? We asked, too. Maryjean smiled sweetly and talked about creative food alternatives, most of which sounded to me like eating wallpaper paste.

I don't think I'd mind so much having medical issues if I could at least eat what I wanted. The two best things I do in life are eat and sleep, and one of them is about to be severely compromised. I've said it before and I'll say it again: I foresee a steady diet of chicken – baked – and rice in my future.

Pill Popping

2009-10-12T09:43:00.000-05:00

Back home after a jolly and fulfilling Homecoming weekend at my alma mater, Hope College, I'm putting away my rectangular lime-green traveling pill case until it's time to go wandering off somewhere again.

Karen gave me the plastic pillbox last Christmas as one of my stocking stuffer gifts. I laughed, but I also understood immediately the thoughtfulness behind her present. She knows I have to gulp a bunch of medications and supplements every day in my current condition, and being the extremely organized person she is (she's a FranklinCovey trainer, you know), she wanted to help me do so as efficiently as possible.

I can take them without water now. So adept have I become at swallowing pills that, except for the front-loaded morning dosage that can be as many as 11 pills at once, at the appointed times throughout the day I just pop 'em in my mouth like breath mints and let them slide down my throat. This is not a skill I wanted to become proficient in, but if practice makes perfect I should be nearly immaculate.

I've talked about my medications before but never in much detail, so I thought I'd like to introduce them to you.

Every day I take:

25 mg of carvedilol, a non-selective beta blocker to control my high blood pressure (thought to be the primary cause of my kidney distress), twice a day;

10 mg of prevastatin, to reduce my total and LDL cholesterol;

800 mg of renagel, used to reduce levels of phosphorus in people with kidney disease, at every meal;

100 mg of allopurinol, intended to decrease the levels of uric acid in my body and prevent a recurrence of searingly painful gout, twice a day;

160 mg of Exforge, also prescribed for treatment of high blood pressure;

25 mcg of Vitamin D, a supplement to replace the vitamin that healthy kidneys naturally produce to maintain proper phosphorus and calcium levels in the body;

one-half of a Centrum Silver multivitamin, as my kidney specialist was concerned about the potential effects of taking some vitamins at their full potency (it's bad enough that it's a Centrum "Silver," but then only half a pill? Boy, does that make you feel old!);

100 mg of Vitamin B-1, which I added on my own. I read somewhere that it could help in the treatment of kidney disease, and my doctors, while skeptical, admitted that it couldn't hurt.

In addition, every other day I also take:

0.6 mg of colchicine, also prescribed to prevent my gout from flaring up again, and

1 mcg of zemplar, (and I'm taking this off the Web site), "a synthetically manufactured...active form of Vitamin D indicated for the prevention and treatment of secondary hyperparathyroidism in chronic kidney disease."

It's quite an assortment. I don't know how AIDS patients feel, but I can empathize. If you didn't think or feel that you were sick, pouring a pile of pills into your hand every day certainly will serve as a reminder. When I travel for more than a few days, it takes me almost a half-hour to sort all my medications and supplements, recall the proper dosages and stick them in their appropriate Monday-through-Sunday slot in my neon green pill case.

I guess it's that shade of electric green so I won't lose the case.

Not that I wouldn't like to.

A Place Called Hope

2009-10-08T07:25:00.000-05:00

I'm on the road again today (does it seem to you I've been traveling a lot since I started writing this blog? It does to me!). I'm traveling with Karen to Holland, Mich., on the shores of Lake Michigan to attend Homecoming at my alma mater, Hope College.

This weekend has taken on a different significance for me since I was asked to serve as a member of the college's Alumni Association Board of Directors a year ago. I feel much more connected to the campus goings-on and my fellow alums as a whole, though I will spend an entire day trapped in a conference room for meetings. But I am that guy who really enjoys going back to the old school, catching up with friends of a bygone time, reliving old memories while creating new ones.

I think it's kind of cool to have gone to a college named Hope. I remember getting razzed a lot about it as a teenager when I chose to attend there – "Hey, 'hope' you get accepted! 'Hope' you graduate!" – and while the lure of a large university was powerful, I knew then that I made the right choice. I still know it today.

One of the main reasons I went to Hope, I must admit, was to be closer to my parents, who where quite elderly at the time. But there's something about a small school that's more embracing, more caring. More sincere. When my favorite English professor, Jack Ridl, retired a few years ago, he sent me a handwritten note to thank me for the role I played as one of his students and congratulate me on my success as a journalist. How many people who've been out of a university for 35 years receive a letter like that?

Maybe it's symbolic, too. Like that lady says in the Cancer Treatment Centers of America commercial, "Hope is everything." And as time and my kidneys pass away, hope is a commodity that cannot come in great enough supply.

Poison or Hanging?

2009-10-07T09:12:00.000-05:00

At my kidney specialist's suggestion, I recently visited a local office of Da Vita, the nation's largest chain of dialysis clinics, to attend an educational session on kidney failure. I had gone through this "Kidney 101" tutorial once previously in Detroit but Karen had not, and I thought it a good idea for us to experience the process together.

We were greeted by a very knowledgeable and attractive registered nurse named Dawn who led us to a private conference room and played one of those hokey "Your Kidneys and You" movies like you might have endured in sixth-grade health class. At one point, Dawn even strapped on a heavy rubber body apron, almost like a fat suit, to demonstrate the relationship between the kidneys and a form of blood cleansing called Peritoneal Dialysis, or PD.

Dawn and me, at Da Vita

Dawn was very nice and patiently answered all the questions Karen posed. I tried to be my usual nonchalant and amusing self, but let me be honest with you: The specter of what is inevitably going to happen to my body gives me the shivers and makes me more than a bit queasy.

Because to manually replace the function my kidneys perform in cleaning my blood, I either have to have an operation to graft one of my veins to an artery, creating what's called a fistula, so my blood can be pumped out of my body, filtered through a machine and returned – that's called Hemodialysis – or have a tube inserted in my stomach into the lining of my abdominal cavity, where a special solution will flow though to cleanse my blood. That's PD.

Both processes have their advantages and disadvantages, but from where I sit now, they sound like the difference between being asked, "Would you prefer poison, or should we just hang you?" We have decided to go with PD, which is administered in the home and I eventually can do by myself. (Hemodialysis demands actually traveling to a center like Da Vita three times a week, spending eight hours at a shot.) It seems like the lesser of two evils.

I know either method will be for my own good, and will be necessary in order for me to keep living. But they both sound horrific and ominous. The operation was a success, but we lost the patient; I think he passed out.

Sick

2009-10-06T09:02:00.000-05:00

Karen stayed home sick from work yesterday. It's not the swine flu, but it might as well be; I called it the "whine flu," which I thought was just hilarious. She didn't seem to share my sense of humor.

That means I stayed home from work, too. Wait, that's not exactly accurate. I always stay at home; I just stayed away from work.

I love having my mate around the house all day, even in her sniffly condition, but from my perspective she could not have picked a worse time to fall ill. I have at least five big stories due over the next 10 days, and having someone else in your space when you were anticipating being alone can be disconcerting. The fact you know that someone else is hurting and you want to be there for them can divert your attention even more. I didn't even have time to write my blog to you yesterday.

I got frustrated and a bit peevish. Then I reminded myself that nobody chooses the time or the way they wish to get sick. I certainly didn't. And these blasted kidneys do qualify me as sick, I also have to remind myself, even though now most of the time I feel just dandy.

The time will come, I fear, when Karen will be doing the Nightingale thing for me on a far longer basis than I am in helping her to tend to a simple cold. And work, I've found as I've matured, always seems to have a magical way of getting done if one perseveres. It shouldn't get in the way of showing a little compassion and a comforting spirit when the one you love is sick.

I need to keep that in mind, and pray that she will, too. You know what they say about payback.