The Arkansas Traveler

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

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

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

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

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

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

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

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

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

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

How ironic.

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

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


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


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

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

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

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

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

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

The Kidney Call Comes

I wasn't ready.

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

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

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

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

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

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

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

My blood ran cold.

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

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

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

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

Pressure? What pressure?

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

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

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

What if there are complications in the surgery?

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

Will I miss dialysis?

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

How will I respond to the anti-rejection drugs?

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

Will I have to wear a mask in public?

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

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

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

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

Powerful stuff, this kidney transplant. Amen.

Giving Me the Finger

WHAT THE HECK IS THIS?

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

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

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

Nuthin'.

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

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

Here's what the orthopods do know:

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

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

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

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

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

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

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

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

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

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