Thursday, September 24, 2015

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.

Thursday, September 3, 2015

PKD Gets Its Own Day...But What It Really Needs Is a Cure

It's called PKD, not PDA, although this terrible disease certainly could use some public displays of affection...from you.

Today (September 3) is Polycystic Kidney Disease (PKD) Awareness Day, a day devoted to raising awareness of the life-threatening inherited disorder. In PKD, clusters of cysts develop inside your body, primarily within your kidneys. The cysts are noncancerous, but the round sacs contain a water-like fluid. As they accumulate more fluid, they can become extremely large.

In the vast majority of cases, the cysts overwhelm the kidneys and lead to kidney failure. There is no treatment. There is no cure.

Even though the genetic condition afflicts thousands in the United States and millions more worldwide, most people have never heard of PKD, much less know its effects. Obviously, #PKDAwarenessDay seeks to change all that.

Indeed, you may know someone who has PKD and not be aware; the disease isn't something its sufferers tend to bring up in friendly conversation. Did you know:

• PKD is the fourth leading cause of kidney failure;
• Parents have a 50-50 chance passing PKD to each of their children (unlike many genetic conditions, it does not skip a generation);
• Polycystic kidneys can grow as large as footballs and weigh up to 30 pounds each;
• PKD affects all races, genders, nationalities and geographic locations equally.

#PKDAwarenessDay is the precursor to the fundraising "Walk for PKD 2015" events staged throughout the country in September. In the markets I know best, the Detroit Walk for PKD takes place Saturday, Sept. 12 at Boulan Park in Troy; the Chicago Walk for PKD happens Sunday, Sept. 20 at Busse Woods Grove 6 in Elk Grove Village.

For more information on participating in the Walk for PKD nearest you, to make a donation, or for all other things Polycystic Kidney, reach out to the Foundation at

I wouldn't want a football growing inside of me, would you? We've got to stop this crazy thing.

Here is the PKD Foundation 2015 information video, "Do You Know PKD:"