Seeking a Measure of Katharsis at the Kidney Konvention

For the first time in at least two years, I am attending a convention related to kidneys and renal health. This weekend I'm off to Nashville for the 41st national meeting of the independent advocacy group AAKP, the American Association of Kidney Patients.

In one sense, this is serendipity. My sister-in-law and her husband live in Music City and their youngest daughter, Eleanor, turns six this week. So when I received the invitation to attend this year's AAKP and noticed the dates, my wife, Karen, and I decided to make it a family excursion. While I'm in a crowded, airless hotel ballroom soaking up such sessions as "Summit on Public Policy" and "The Kidney Disease Self-Management Toolbox," Karen will be frolicking with her sister, the birthday niece and two other kids.

(I am certain Eleanor will not miss me. She hasn't spoken to me since she was three. As the only person in her immediate family of a different color, I may come across to her like the Boogeyman.)

In a much larger sense, however, this convention represents a personal renewal and rededication for me.

Over the past several months I feel like I've lost something – call it passion, commitment, enthusiasm, whatever you choose – for the kidney cause.

I am still the ESRD (End-Stage Renal Disease) patient representative for the State of Illinois, and I am still honored to hold the position. But it's a largely ceremonial post, mandated by state charter. The veteran nephrologists (kidney specialists) and nurse managers who dominate the committee generally welcome my comments with all the enthusiasm of a sick patient trying to diagnose his own illness. They would much rather I was seen and not heard. For that matter, I'm not so sure they're that wild about me being seen, either.

I continue to sit on several national and regional renal boards, but I find I'm not as devoted to the affiliations as I once was. Where once I used to build my week's schedule around trips to board meetings and webinar sessions, now it's largely the other way around. If a meeting happens to fall easily within my other responsibilities and I can make it, I'm there. If not....

And even though I hold the titular title of secretary for my local ESRD support group, I cannot tell you the last time I made a meeting. They are always held on the first Tuesday of the month, but it seems lately I've been on the road for business, or tied up with a church commitment, or otherwise engaged. Sometimes, quite honestly, I've just forgotten. That never used to happen.

Do I have a theory as to why my fervor has faded? Have we met? Of course I do!

I really think it has a lot to do with the present condition of my health – which, at the moment, is superb. After a few years on daily dialysis, overcoming the fear and pain of a kidney transplant and a few more years living with the new reality of 30-plus pills a day and constant blood and body monitoring, today I'm doing great.

At my last annual checkup (which once was my monthly checkup), the chief of transplant surgery for Barnes-Jewish Hospital in St. Louis, the site of my operation, used the word "unbelievable" to describe my condition. My standing blood tests have been reduced from bi-monthly to once a month. My creatinine (cree-AT-tin-een) level, an indicator of kidney function that typically falls between 0.6 to 1.3 for normal healthy people, is at 0.9. My beloved little Cheyenne, who moved into my body in 2011 as a long-term tenant, is just showing out.

At my first AAKP convention, in Little Rock, I met inspirations like Brad Mayfield.

So while I remain compassionate about the plight and the journey of my fellow renal patients – particularly my friend and true believer Lana Schmidt, who IMHO is getting screwed by the medical community through a recently-enacted policy in the transplant system that really pisses me off (more about that at another time) – I think it's a natural reaction to drift away from the pack emotionally when your station in life improves. I'm OK, I Hope You're OK, Too. It's human nature. That's why we're not all Gandhi or Mother Teresa.

However, I think with the passage of time, many people get the desire to reach back and lend a helping hand to others who face the same challenges they have overcome. I have encountered so many folks who served to inspire me, like my friend Brad Mayfield whom I met at my first AAKP convention in Little Rock back in 2011. I talked to people who'd been on dialysis 10, 15, 20 years, some who were fearful of receiving a transplant, others whose condition prevented it. I still remember how thrilled I was over the prospect of spending time in Arkansas (I wrote about it here), but the experience ended up being just what I needed, just when I needed it most.

I think I'm ready to jump back into the kidney caravan again, to rededicate myself to the effort. This weekend will be the test. More than 26 million Americans have some form of kidney disease, over 101,000 of them are on the waiting list for a transplant. And while they won't all be at the AAKP convention, if I can make a small difference in one person's experience, if I can be the example or inspiration for anybody, then this weekend in the shadow of Opryland will be well worth the trip. (Eleanor birthday celebration notwithstanding.)

It's a simple shift in perspective: I'm OK, I Want You to be OK, Too.

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.