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.

Chain, Chain, Chain – Chain of Cool

CBS This Morning didn't mention that this is National Kidney Month when they aired this feature on Friday (March 27). But somebody there had to know, right? I mean, could the timing have been any more perfect?

I awakened to the early-morning news show to see this inspiring story of a dozen people in and around San Francisco – all strangers to each other – who helped make medical history at California Pacific Medical Center: They formed the largest "transplant chain" ever on the West Coast, a six-way exchange of kidneys.

For those of you unfamiliar with this still relatively new process, typically a person donates his or her kidney to a stranger who is a blood type and tissue match for the organ. In turn, the recipient has a relative or friend donate a kidney to another stranger in need, and (like the old TV commercial) so on and so on and so on.

There have been such chains assembled on the Left Coast before, of course, but none that ultimately gave life to six renal patients desperately in need of a transplant.

In the CBS This Morning piece, the organ donors and recipients met in person for the first time. Bring your Kleenex.

Zully Broussard, the woman who initiated the donor chain, lost both her husband and a son to cancer. She did not donate her kidney to benefit any particular person. "I just wanted them to have that quality of life," she says. "I want their loved ones to know that they're going to be around."

Oh, heck – why just talk about it? Why don't you watch this report from CBS correspondent Carter Evans for yourself?

There's No Place Like Home (Dialysis)

I'm in Oak Brook, Ill., tonight, attending a public seminar sponsored by The Renal Network called "On the Road to Home: Home Dialysis Treatment Options." The lime green ribbon attached to my name tag reads "Home Team," which either means that my own home dialysis story is well known since I'm a representative of the Renal Network's Network 10, or that I'm expected to clean up after everyone leaves the Drury Lane banquet room.

The annual event, which coincides with National Kidney Month and includes a free meal, was well attended (Duh!) by dialysis patients, caregivers, medical and equipment representatives and those who simply desired more information about their options after the dreaded diagnosis of kidney failure has been delivered.

The Network offered five key questions a renal patient should ask her or his physician when the subject of dialysis finally arrives:

• What dialysis therapy may offer me the best chance of living a normal life?

• What dialysis treatment would allow me the best chance of survival?

• What treatment would allow me to have better nutritional status?

• What dialysis treatment option would YOU choose if you were faced with kidney disease?

David Rush, aka Young Bo$$, a true crowd pleaser

• How can I learn more about home dialysis?

One great way to learn more is simply to attend sessions like these. The evening's featured speaker was my man David Rush, aka Young Bo$$, a charismatic, very gregarious hip-hop star whose career literally was rescued by home hemodialysis.

Rush encouraged everyone in the quiet, attentive crowd to get on their feet and whoop and holler like Justin Bieber fanatics so he could get a great selfie shot for his Instagram account. But he's deserving of a JK blog post of his very own, and I will devote major space to his remarkable story in the very near future. Promise.

The night featured other first-person testimonials from dialysis patients who wanted to share how much home treatments – be it be traditional or short Home Hemodialysis or Peritoneal Dialysis (PD), my former godsend of choice – resurrected their lives.

One, Cary Bolton, an O'Hare Airport employee who says conventional in-clinic dialysis left him so drained that he would fall asleep at stoplights on the way to work, claims that after he switched to PD he was part of "the H Factor: I'm healthier, I'm happier and I'm a home patient."

Also in attendance was my inspiring fellow Renal Network representative Lana Schmidt, who has done such an effective job of spreading the good news about home hemo in southern Illinois that her story was featured on radio, a newspaper feature and in a TV news segment around her home. You can read the text of her TV debut here.

Sadly, though, this was my first major kidney-related event without my friend Richard Berkowitz, the irascible, devoted champion of the home dialysis movement who died unexpectedly in January. (You can read my JK blog post about him right here.)

Even Young Bo$$ acknowledged his absence, having met Berkowitz at a previous conference. "That's somethin' about Rich, huh?" he asked. I had to agree.

Rich is no longer here, but I felt his presence tonight. I think he'll inhabit every room where home dialysis therapies is the subject of choice for many years to come. I fully expected to see him when I entered the banquet hall, then had to remind myself that I wouldn't.

What an incredible impact he made. Guess home is where his heart was.

Oh, Tie a Bright Green Ribbon/'Round Your Old Kid-neeeey

If you're reading this blog, I'll betcha a dollar to a doughnut (better yet, a celery stalk – doughnuts are dangerous to diabetics and many kidney patients) you already know that March is National Kidney Month.

The official NxStage Green Ribbon

What you probably don't know – because this is the first time it's ever occurred – is that today, March 20, is also National Home Hemodialysis Day. Whoopee!

There are no parades planned for my community (I checked), but it's a day of celebration for many of the 430,000 Americans who are on dialysis nevertheless.

One could easily dismiss this as a slick marketing ploy by NxStage, the Massachusetts-based company that, from what I understand, makes a pretty mean home hemo machine, the NxStage System One.

(I did not opt for hemodialysis, where your blood essentially is sucked out of your body, cleaned and scrubbed, then put back in, when my time came to choose a dialysis option. Even though I've been a post-transplant diabetic for more than two years, I am just now getting on speaking terms with the idea of sticking myself with needles every day.)

However, a lot of dialysis patients I've heard talk about home hemo rave about the treatment. It allows them much greater flexibility and self-determination in how they manage their renal condition, as well as such therapeutic benefits as improved energy, better appetite and less stress on the heart. You can see a number of testimonials yourself on the NxStage website, in a series of video clips that look suspiciously like they were recorded at the Home Dialyzors United conference I attended last year in Orlando.

(No home hemo for me. No camera time. Rats.)

To commemorate the day, NxStage has made available green ribbons to be worn today by those who support the home dialysis option. Obviously it's too late to get an "official" ribbon from the company now, but I'm sure any green ribbon folded and worn with pride will get the point across. I'll certainly be sporting mine today.

After all, anything that can keep kidney patients from traveling back and forth to a dialysis clinic two to four times a week for hours at a time and allow them to remain in the comfort of their homes instead can only be called one thing:

A blessing.

Tears for Fears – But the Best is Yet to Come

Before March and National Kidney Month slip away entirely, I have to share this story with you.

Two weeks ago I was at the dazzling new Ray and Joan Kroc Corps Community Center on Chicago's South Side for the National Kidney Foundation of Illinois (NKFI) annual World Kidney Day celebration, press conference and free health screenings. Joan Kroc, the late Mickey D matriarch, bequeathed more than a billion dollars (one for each burger sold, I reckon) for the construction of community centers in underserved neighborhoods through the Salvation Army, and Chicago's share of the money went to outstanding use for this sprawling, 167,000 square-foot multipurpose facility. It is nothing short of spectacular.

However, I'm told it's only been open less than a year. Please don't jack this place up, y'all.

The NKFI was hosting the day, which included appearances by Dr. LaMar Hasbrouck, a handsome young brother who's the new director of the Illinois Department of Public Health, and Jesse White, who's the old Illinois Secretary of State.

Hasbrouck laid out the basic statistics for the day, which are terrifying:

• At least 900,000 people in the state of Illinois alone are at risk for Chronic Kidney Disease (CKD), or kidney failure;

• Most of them, for the moment, are completely unaware of it;

• There are 50,000 people in the state on dialysis;

• 4,800 people are waiting for a lifesaving kidney transplant;

• Many won't find a matching donor in time;

• And African Americans are at three-and-a-half times greater risk for CKD than the rest of the population, at least in part because of our higher incidence of diabetes and high blood pressure.

Whoopee.

White came to promote the state's easy "first-person consent" organ and tissue donation registry, instituted because families so often are too distraught after the loss of a loved one to consider doling out their relative's body parts to others. This is an especially critical problem for black folks.

"Here in the African American community, we are 56 percent on the list for organs, however we participate at a level of 32 percent," White said. "It's kind of hard for you to go to Dominicks [a Chicago-area grocery chain] and buy 56 dollars worth of groceries and only have 32 dollars."

Obviously, then, many of the organs transplanted in African Americans come from Caucasians. Who'da thunk it? (Somewhere, a Klan wizard is crying.) However, "It's a known fact that your recovery is better, your life expectancy is longer, when [organs] come from the same racial group," White explained.

(This was my first time seeing White in person. He's a little fella, and arrived at the center flanked by two bodyguards. Why does a secretary of state need bodyguards? Disgruntled drivers who've waited too long at the DMV office out to get him?)

All this, however, is mere prelude to the story I want to tell you.

I've been asked to tell my kidney story many times at events such as these, and I think my tale pretty much has run its course. I'm getting a bit tired of hearing it myself. So for World Kidney Day, the NKFI asked a young man named Daniel Perez to present the patient side of the CKD heartbreak.

"My name is Daniel Perez, and I am on dialysis," he began. "I found out about my kidney issues a year or two ago, and I have been affected by it. It's very tough –"

And at that moment, Daniel Perez – this young, brawny, good-looking, outwardly confident Latino man – broke down and began to cry onstage.

The room fell silent.

So did I, but perhaps for a different reason. I knew precisely how Daniel had to be feeling.

It's virtually impossible to believe that your body, your wonderful, beautiful, protective body, is failing you from the inside out. You can't believe it. You don't want to believe it, no matter how long it's been since you've received the diagnosis or begun the dialysis drudgery. But then to try and tell a whole crowd of people about your condition...well, it can just become overwhelming.

Daniel recovered quickly, however, and in fine shape. "I always felt strong, always felt like I could do whatever anybody else could do, you know?" he said. "Never felt sick. But then I was told that my kidneys didn't work.

"I work, I hang out with friends, I have a beautiful wife. How could I be sick? But that just goes to show you, this is a disease that doesn't choose. It affects everyone. It doesn't matter who you are or what you do for a living. It's serious, sitting in dialysis for four hours with a needles shoved in my arm, cramping. You don't want to go through that. It's horrible."

Daniel Perez, Rebuilding His Life.

He urged the audience to sign up at the event to become organ donors, to take full advantage of the free health screening opportunities, "and take brochures. Go back to your communities and spread the word. Let people know about CKD.

"We can make a change, and it starts today," Daniel implored. "We're all here for a reason, so let's take action."

After the resounding applause subsided and the speeches had ended, I sought Daniel out. I wanted to hug him. I'm a hugger. Instead, considering what he'd just gone through, I reached out and shook his hand instead. Firmly.

I learned that Daniel, 34, is Chicago born and bred and works as the marketing and public relations manager for BUILD, a nonprofit whose aim is to target at-risk innercity Chicago kids and keep them away from the gang life. A brave, laudable goal, and Daniel strikes you immediately as the kind of hands-on, all-in guy who would be totally committed to the task. Which I'm sure makes his illness and the empty hours spent on dialysis all the more exasperating.


 "Yeah, man, it's been the roughest year," he acknowledged. "But that's why I came here."

I talked to him, as I talk to all in-clinic dialysis patients, about PD (Peritoneal Dialysis) as an option. The ability to dialyze at home, unassisted, on my own schedule, was a major factor in helping me get through the long ordeal relatively sane. Daniel said he was presented with a variety of options when he was diagnosed, but chose conventional in-clinic hemodiaylsis because "he wanted to be near his nephrologist."

A little shellshocked, a lot confused and vulnerable, you want to be where the nurses and health professionals who know about CKD are. Completely understood. But he added that after more than a year on hemodialysis, he was open to considering other alternatives. Hemo doesn't equal happy.

Daniel said he also planned to add a health awareness component to his outreach efforts to young Chicagoans through BUILD. "When you have a healthy body, you have a healthy mind," he said.

Nobody knows that better than someone whose body suddenly isn't healthy. God bless you, Daniel.

I'm Really in the Soup Now

Breaking into a new market, in a different state, is never an easy task. And although I've lived outside Chicago for nearly four years now, I will always be a Michiganian by birth and a Detroiter by heart.

As of this writing, however, I truly feel like I've been accepted in my home surroundings. In honor of National Kidney Month in March, I was invited to share my personal kidney khronicle in the March 13 edition of the Bean Soup Times, a beacon of information for Chicago's African American community for more than a decade!

My sincere thanks to Mr. Toure Muhammad, Bean Soup Times creator and publisher (not to mention comedian, broadcaster, communicator and PR professional), for his interest and allowing me to share his media platform. (Being described as an "Award-Winning Writer" in the headline doesn't hurt the old ego too much, either!)

As I mention in the article you're about to read, African Americans are experiencing end-stage renal disease (ESRD), or kidney failure in all its evil forms, at a rate three times higher than the rest of the U.S. population. So knowledge and awareness are especially crucial for black folks. If my story helps anyone reading it to take precautions – even just to monitor their blood pressure and keep it under control – I'm honored.

Here's the link to the Bean Soup post: http://bit.ly/WEexln. The words in red are links to previous Just Kidneying blog entries to give their readers (and you) some deeper background into the journey.

Happy reading. Remember to caress your kidneys.

Kidneys On Patrol

March, as every man, woman and child in America knows, is National Kidney Month.

The renal version of Mardi Gras, the Super Bowl and Independence Day, all rolled into a giant kidney-shaped ball.

Whoopee!

For some reason, I'm even more excited about this year's festival of function – highlighted by World Kidney Day Thursday, March 14 – than usual. So I'm getting an early jump on things. Maybe it's because I feel I've become more immersed in the kidney community in Illinois, the state where I live, than ever.

And one of the coolest things about NKFI, the National Kidney Foundation of Illinois, is its funding and perpetuation of the KidneyMobile, a fully equipped van that circles the state providing information about kidney disease and free screenings of blood sugar, blood pressure and urinalysis. People who get tested also have the opportunity to meet with a healthcare professional to review their results and discuss next steps.

And believe you me, when it comes to your kidneys, knowledge truly is power!

Here's a closer look at the KidneyMobile, thanks to this new NKFI video:

If you're in the Chicago area, I'll be joining in the World Kidney Day celebration on Thursday, March 14 at the Ray and Joan Kroc Community Center, 1250 West 119th Street. The event begins with a press conference at 10 a.m. at which Illinois Secretary of State Jesse White and several other Windy City bigwigs will speak, followed at 10:30 by five hours of free screenings for anybody willing to sit down and get tested. 

It's a big day for kidneys all over the earth!

For more information on World Kidney Day, check out this web page from the National Kidney Foundation. For more information on the Chicago festivities, call NKFI at (312) 321-1500.

Happy Peeing, Everyone!