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.

Poison or Hanging?

At my kidney specialist's suggestion, I recently visited a local office of Da Vita, the nation's largest chain of dialysis clinics, to attend an educational session on kidney failure. I had gone through this "Kidney 101" tutorial once previously in Detroit but Karen had not, and I thought it a good idea for us to experience the process together.

We were greeted by a very knowledgeable and attractive registered nurse named Dawn who led us to a private conference room and played one of those hokey "Your Kidneys and You" movies like you might have endured in sixth-grade health class. At one point, Dawn even strapped on a heavy rubber body apron, almost like a fat suit, to demonstrate the relationship between the kidneys and a form of blood cleansing called Peritoneal Dialysis, or PD.

                                                            Dawn and me, at Da Vita

Dawn was very nice and patiently answered all the questions Karen posed. I tried to be my usual nonchalant and amusing self, but let me be honest with you: The specter of what is inevitably going to happen to my body gives me the shivers and makes me more than a bit queasy.

Because to manually replace the function my kidneys perform in cleaning my blood, I either have to have an operation to graft one of my veins to an artery, creating what's called a fistula, so my blood can be pumped out of my body, filtered through a machine and returned – that's called Hemodialysis – or have a tube inserted in my stomach into the lining of my abdominal cavity, where a special solution will flow though to cleanse my blood. That's PD.

Both processes have their advantages and disadvantages, but from where I sit now, they sound like the difference between being asked, "Would you prefer poison, or should we just hang you?" We have decided to go with PD, which is administered in the home and I eventually can do by myself. (Hemodialysis demands actually traveling to a center like Da Vita three times a week, spending eight hours at a shot.) It seems like the lesser of two evils.

I know either method will be for my own good, and will be necessary in order for me to keep living. But they both sound horrific and ominous. The operation was a success, but we lost the patient; I think he passed out.