Friday, August 19, 2016

Happy to be a Part of 'the Minority Report'

My friend Mike Freeman, Illinois Secretary of State Jesse White, and Me.
Last week was National Minority Organ Donor Awareness Week. For a minute I felt guilty about not writing this post last week to coincide with the occasion. Then it hit me: every week should by Minority Donor Awareness Week.

According to, of the more than 101,000 people in America waiting for a kidney transplant right now, more than a third of them are African American. So of course, more than a third of all African Americans are signed up to be organ donors, right?

What do you think?

No, seriously – what do you think?

The need for minority donors in this country – Hispanic, Asian and Pacific Islanders, as well as blacks – is more crucial than ever. That's why I'm so proud of the efforts of Illinois Secretary of State Jesse White and his phenomenal "Life Goes On" initiative to register Illinois residents to become organ and tissue donors after – well, you know.

This week, White's office announced that the state's donor registry hit the astonishing mark of six million registrants. "I'm thrilled to see that Illinoisans continue to show their giving spirit by signing up for this lifesaving program," said White, who became personally immersed in organ donation decades ago when his sister needed a kidney, in a prepared statement.

"Our mission is to sign up everyone who is eligible in order to give others a second chance at life and end the waiting list for the approximately 5,000 people statewide."

Despite those impressive sign-up numbers, every year about 500 people in Illinois die waiting for that perfect matching organ. Many of them are African American. 

So what a great honor it was for me to share a dais with White – the longest-serving  Secretary of State in Illinois history and the first black person to hold the office – last week for a Minority Organ Donor Awareness event at Carle Hospital in Champaign, Ill. 

We were joined by my new friend Dave Freeman, who lives in the same complex as I (our building manager introduced us) and is preparing to begin dialysis in hopes of an eventual kidney transplant.

Jesse and Dave were there to plead for the need. I was Exhibit A, the walking, talking success story.

Unlike me, who relishes any opportunity to open my mouth in public, Dave was more than a bit jittery prior to making his remarks. He had included a joke in his short speech and wanted to run it past me:

"When they asked me if I wanted to be an organ and tissue donor, I told them, 'No thank you. I play the trumpet.'"


"I don't get it," I confessed.

Once he explained it to me – a play on words about musical instruments – I gently suggested he remove the "and tissue" part to put the key words closer together. Dave agreed to try it.

I won't bore you with every word verbatim (much as I'd like to), but this is the bulk of what I said to that hospital audience:

"Ladies and gentlemen, good morning.

"I'm happy and proud to share the podium with our esteemed Secretary of State, who has been such a champion in the field of organ and tissue donation. Thank you, Mr. White, for all you have done and continue to do.

"My name is Jim McFarlin, and I am speaking to you today from beyond the grave.

"Logically, realistically, there is no way I should be standing before you right now. In 2008 I was diagnosed with Stage IV kidney failure, and as many of you may know, the medical types tell you that at Stage V you should be checking your insurance policies and making arrangements.

Talk, talk, talk: Jimbo, the Kidney Crusader
"Now, I'm going to talk about God right here, so if you are not the "religious type" you may wish to tune out for a moment. Because I don't believe you can knowingly come so close to death's door and come away clean and healthy on the other side without having your faith in God renewed.

"I was on dialysis for just over two years – far below the average wait time for a transplant – when a precious little girl, just six years old, collapsed and died on the playground of a brain aneurysm. Her kidney was a perfect match, and in perfect condition. 

"I will forever be grateful to her parents for having the courage and selflessness to think about how their dead child could benefit others at that most devastating time in their lives. My transplant was performed November 18, 2011, and I'm still going strong. Praise God!

"I am Exhibit A for the benefits of organ donation. I am blessed. And I truly believe one of the reasons I'm still around is to encourage and appeal to my brothers and sisters – of all colors – to make the choice to register as an organ and tissue donor.

"High blood pressure and diabetes are two of the leading causes of kidney failure, and you know that black folks lead the league in those statistics. Y'all eating all that pork! 

"But you just know that African Americans are not signing up tp be organ and tissue donors in equal measure. Quite simply, we're not pulling our weight! We're not doing our fair share.

"And while it's true that the races have interchangeable parts, the truth is that tissue matches are just better when transplants occur within ethnic groups – that is, when black patients receive organs from black donors, Hispanics from Hispanics, and so on.

"For about two years I served as the End Stage Renal Disease Patient Representative for the State of Illinois. And while it was largely a ceremonial position, I tried to use it to best advantage. 

"As I traveled around the state, whenever I could I would drop into a dialysis clinic and ask to speak to the patients. And while I learned a lot from them, the takeaway that struck me hardest was that it seemed no matter where I went, the vast majority of patients were the same color as I am. The need for donors is critical.

"Why don't we donate? One reason, I think, is because we believe in all those myths and old wives' tales that just aren't true. Doctors will not let you die on the operating table so they can harvest your can still have an open casket funeral...organ donation is not against your religion. There is no legitimate excuse.

"So if you really believe that Black Lives Matter – or Asian Lives, or Hispanic Lives, or every life –  here is a positive, nonviolent, selfless way to prove your commitment. Become an organ and tissue donor. Do the right thing. Donate life. Thank you."

And by the way, Dave's edited joke got a big laugh. A good day all the way around.

Sunday, March 13, 2016

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."



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.