Paying My Kidney Forward

An acquaintance of mine, a fellow member of the National Association of Black Journalists Detroit chapter of which I am proud to belong, contacted me via private online message not long ago.

(I won't mention him by name, so I can talk about him.)

He began with the obligatory courtesies: "We have met a few times in Detroit...I'm not sure you remember me but...." Then just about the moment I mentally connected his name with a face, he smacked me with an emotional haymaker.

"I have been reading your blog, Just Kidneying, and it is hitting me right on time: I just found out this week that I am going to have to go on dialysis and be put on an organ donor list."

Bam.

Pow.

Oh, the pain.

I feel you, brother.

In that instant, it all came flooding back. The fear. The anger. The disbelief. The "WHAT THE HELL! HOW CAN THIS BE?" Almost all of Kübler-Ross's five stages, welling up inside me at the same time. Feelings I thought I had long ago suppressed.

Everything but acceptance.

"I am in the middle of having to make the decision about PD (Peritoneal Dialysis) or Hemo (home or in-center)," he wrote. "I am looking for information, support, prayers, etc. Any direction you could provide would be greatly appreciated. Thanks."

The prayers came instantaneously. The advice was dispatched minutes later.

If you have read this space at all in the past, you know I am a vocal and enthusiastic supporter of PD, the type of dialysis I opted for and applied to myself every day for nearly three years. I believe it's less invasive, gentler to your system, as effective as other dialysis systems and doesn't require you to be on time for in-clinic treatments at least three times every week. (Really, who can do that?)

I passed my insights along to my friend and received a response a few weeks later.

"I am three days away from getting my catheter," he wrote. "Since I first reached out, we decided on PD over hemodialysis."

He listened to me! My wife doesn't even do that!

"I am still not quite sure what to expect, and I wish there was anything, and I mean anything else, I could do not to face this, but I have to go forward. Thanks for your support."

"Have to go forward." I heard that, and I totally get that. I mean, what other choice do you have?

After more than four years with a successful kidney transplant, I often feel far removed from the trenches of the day-to-day renal wars. I recently resigned my position as ESRD (End-Stage Renal Disease) Patient Representative for the State of Illinois and recommended a current dialysis patient, a man I know to be a leader and activist, as my replacement. Kidney patients deserve someone who's on the front lines of their struggle, I figured.

However, the unexpected message from a confused Detroiter in need, who reached out to me for no other reason than that he knew my story, reminded me that I still have value in this area, a role to play as a reference point. I'm no nephrologist or kidney disease researcher, but I have been through the darkness and pain and come out on the other side. I'm reminded of an advertising slogan from many decades past:

"Ask the man who owns one."

Last week I got a call from a dear friend, like me a Detroit expatriate. Doctors have discovered a tumor the size of a football in her midsection. Worse yet, as it grew it apparently pressed against the artery that supplies blood to one of her kidneys, damaging it severely.

After we talked about her condition, she had a battery of questions for me about kidneys and their function.

Who am I, the kidney answer man?

To some people, I guess I am.

Happy to help.

Mr. Smith – uh, McFarlin – Goes to Washing – er, Springfield...Maybe

Now that World Kidney Month is officially in high gear, I'm thinking it could be the most appropriate time to share my big news: I have been appointed (hear the drum roll in your head) patient advocate board member of the ESRD (End-Stage Renal Disease) Advisory Committee for the State of Illinois!

The whole freakin' state! Chicago included!

I would like to thank the academy, the committee, my parents – I know you're looking down on me, Mom and Dad – my incredible wife, Karen; my family, and all the other little people like me who are affected by some form of kidney disease yet strive to maintain healthy, productive, positive lives!

I serve for you! I will be proud to represent your interests at the state capitol! On to Springfield, and victory!

OK, that's quite enough of that. The truth is, I have no idea what all this means.

Back in November I received an email from a pleasant woman at the Illinois Department of Public Health. Apparently all of this – the Just Kidneying blog, the appearances on behalf of the National Kidney Foundation of Illinois, the work with my NKFI chapter in Champaign-Urbana – placed me on the radar of some kidney koordinators at the state capitol. (The fact that my name was misspelled in the email suggested I hadn't become the talk of Springfield just yet.)

She wrote to gauge my interest in serving a three-year term on the ESRD board and sent along an application form to fill out, just to make sure I'm not a convicted criminal, a Republican or some other undesirable in Illinois. After I was vetted and approved a few weeks later, I received another email from another pleasant female bureaucrat with a note of congratulations and a downloadable, 40-page booklet entitled, "2013 ETHICS TRAINING for Appointees to State of Illinois Boards." It is required reading for everyone appointed to a state board, the email instructed, and I was to sign and return the last page verifying I had done so.

As I studied the document detailing what would be considered prohibited activities or conflicts of interest, and knowing my adopted state's "colorful" political history, I couldn't stop thinking, "Wonder if Rod Blagojevich and George Ryan ever signed off on one of these? Or read one, for that matter?"

But I'm now signed, sealed and delivered to the ESRD Advisory Committee, and rarin' to go. One of the major issues I want to address with the board, one we talk about often at my Champaign NKFI chapter, is access to care.

Where I live now, out on the high prairie, a lot of people with kidney failure live in rural areas and dialysis centers are in larger cities. Many live outside the range of bus service, and the sheer cost of gas for friends or relatives to drive them to dialysis and back (which is essential, because hemodialysis often leaves patients too weak to drive home on their own) can be prohibitive. There has to be a way to ensure everybody who needs dialysis can receive it despite $4 a gallon at the pump.

Only thing is, I'm rarin' to go but have no set destination. The committee has yet to call its first meeting of 2013, and there's no indication one is being scheduled for the immediate future.

So at the moment, I have a very impressive and important-sounding title with not the faintest clue of what I can accomplish with it. Does that make me like an ambassador?

Or better yet these days, like a member of Congress?