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.

Lana Needs Your Love...and a Little of Your Money

I wish all of you could know my friend Lana Schmidt. I guarantee you, you would be the better for it.

When her kidneys failed her a dozen years ago, all of the energy from them must have rerouted to her heart, because it is supersized and passionate. Whenever I begin thinking that I'm doing quite a lot to advocate for prevention of kidney disease, the proper care and feeding of dialysis patients and organ donation, I read or hear about something else Lana is up to and put on my humble pants again.

We met years ago on the board of the Indy-based Renal Network, where we both serve on the Learning Action Network for Region 10 (the state of Illinois) as "patient subject matter experts." I'm fairly certain one of us deserves that "expert" tag.

Lana can get a kidney! With your help.

In the 11 years she has been on dialysis thanks to an auto-immune deficiency, Lana has tried basically every form of treatment that exists. She started out, as most patients do, on in-center hemodialysis, then switched to Peritoneal Dialysis (my favored form) for seven years. When her body could no longer tolerate PD, she did her own intensive research and selected home hemodialysis as the best means to keep herself alive. 

Feeling the need to assist others based upon what she encountered, she is the co-leader and driving force of the Kidney Patients Support Group of Quincy, Ill., the "Gem City" of west central Illinois, and its sister city across the Mississippi, Hannibal, Mo. She and her writing partner, Patty Purcell, are regular columnist-contributors to the worldwide medical magazine Nephrology News.

Lana sits on the national board of directors for the American Association of Kidney Patients (AAKP). She has traveled to Capitol Hill to raise awareness of renal disease among key policymakers in Congress. Taking advantage of a state-funded home service program, she has partnered with a local college in her area to have nursing students come to her house and assist in connecting her to her NxStage System One hemodialysis machine, easing the daily setup burden for her while providing invaluable hands-on experience for the students.

A one-woman PR agency, she speaks at conferences around the country and last March during National Kidney Awareness Month managed to land two radio interviews, three newspaper articles – including a front-page feature – and a TV station segment in her town revolving around her fight against renal disease. (You can read the text of the TV story here; you can listen to one of the radio interviews here.) She even gave out kidney awareness information alongside her treats to kids in Quincy last Halloween!

Lana Schmidt is a warm, funny and devoted woman, a true believer. And now she needs our help.

Living a relatively healthy life more than a decade after diagnosis, Lana was a dialysis lifer – or so I assumed. I've met many people in the kidney community who are perfectly content to remain on dialysis with no plans whatsoever to seek a kidney transplant. The devil you know, I suppose. But I was very wrong: She is very excited to have a transplant...but there are complications.

After undergoing more than 20 transfusions over the years, Lana has built up so many antibodies in her blood that the chances of finding a perfect kidney match are practically nil. However, she has a found a surgeon, Dr. Enrico Benedetti, chairman of the department of surgery at the University of Illinois Chicago, who plans to administer a drug called Solaris to block the antibodies at the time of transplant so her body won't automatically reject the organ.

This approach has been used successfully with patients receiving a kidney from a live donor. But Lana will be the first person to try the procedure with a deceased donor kidney. And that's the rub.

Because it's an experimental technique, the hospital wants Lana nearby following the transplant so they can monitor her closely. Since Quincy is 300 miles from Chicago, she will be required to stay at the University of Illinois Guest House in Chicago for at least two months post-surgery, and insurance won't cover her stay. The out-of-pocket costs for her transplant will be at least $3,000, and she needs to raise those funds herself.

"Mostly, I am asking for prayers through this journey and that everything works out," she wrote me. "But if you are able to financially support me by donating to help offset those costs, that would be very much appreciated. 

"Please forward this to others who may be interested in supporting me in this kidney transplant process."

Well, that's exactly what I'm doing, Lana!

Folks, $3,000 is such a relatively small amount to raise, and if everyone reading this gave just ten bucks we could cover her expenses in no time.

Believe me, it's money well spent. I know as well as anybody how dramatically one's life can change with a successful kidney transplant. And if anyone can pay that blessing forward to benefit others, it's Lana Schmidt. 

If you're willing to help, click here to make a donation through PayPal. (Just substitute your email address for mine.) Or, send your checks directly to:

Lana Schmidt

1636 N703rd Lane

Liberty, IL, 62347

Then, immediately after you donate, please feel very good about yourself. 

And thanks.

Bright Lights, Big Kidney

Ladies and germs, little Cheyenne and I have officially made the Big Time.

About a month ago I received an out-of-the-blue email from the National Kidney Foundation – not just a state chapter, if you please, but the honest-to-renal, based-in-New-York, National Kidney Foundation headquarters. Folks there had read my piece in the Huffington Post, which led them to this dear ol' JK blog, which led them to invite me to contribute an article to their "Staying Healthy" blog.

(Imagine face filled with warm glow of pride and humility here.)

As it so happened, I had just returned from the annual American Association of Kidney Patients (AAKP) convention in Atlanta. And while I hadn't gotten around to writing about the event for Just Kidneying (what a sloth I am), I came home from Hot'lanta with at least one moment worth sharing.

While the Foundation wouldn't let me mention the AAKP by name or initials (professional rivalry, I'm betting), they would let me share my observations. You can read them right here, on the NKF "Staying Healthy" blog site.

Needless to say, I am so honored to be asked to write on a worldwide forum to help fellow kidney patients. Deep thanks to Ellie Schlam and all the fine staffers at the National Kidney Foundation.

In other news, the NKF is launching a new quarterly lifestyle magazine targeted to people on dialysis. The free publication, entitled "Kidney Living," will be distributed  beginning in November. You can sign up online at www.kidney.org/kidneyliving to receive it.

And guess which freelance writer will be stepping up and waving his hand furiously to write for this new magazine? 

Once again, the concept of kidney failure as potential revenue stream emerges. Life is so weird.

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.

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.