Swinging a Gulbis Against Kidney Disease

I never learned to play golf. I think that's a shame now, because as my male friends and I grow grayer the golf course could become a common ground, a place where we all could wear incredibly gaudy clothing and boast about how virile and good looking we used to be.

Besides, they have those cool little motorized carts.

I tried to play a couple of times. Spent so much time slogging through the trees that I contracted poison ivy on both ankles. I felt like the leader of a rescue party for lost balls. I was the Bogeyman. The fairway was a rumor. And don't even talk to me about putting!

If I could play, though, this is definitely an event I'd throw my clubs in the trunk for. Especially since it's for such a great cause.

Next Monday, July 28, my friends at the National Kidney Foundation of Illinois (NKFI) are hosting the 10th annual edition of one of their most successful fundraisers, the Middle Market Open™Golf Tournament. It will be held at the Olympia Fields Country Club south of Chicago, home to the 2003 U.S. Open and future home of the 2015 U.S. Amateur Championship.

LPGA Tour Glamour Girl Natalie Gulbis (Getty Images)

Since the event began in 2005, the tournament has raised more than $3.5 million to benefit the NKFI's crusade for kidney disease prevention and awareness. As you've read here countless times, one out of every nine adults in America is living with some form of kidney disease – and most of them don't know it. The NKFI has been fighting the brave fight to correct that frightening statistic for a half century – in fact, this is the 50th anniversary of their official charter – and they are worthy of support.

Hoping to surpass the $4 million mark in total earnings with this summer's tournament, organizers are pulling out all the stops. Sure, there are trips for two to Pebble Beach and Las Vegas, including lessons at the Butch Harmon School of Golf, but lots of golf tournaments offer prizes.

Ah, but not every tournament offers a special guest like Natalie Gulbis. Or as we like to call her, "all the stops."

Gulbis, an LPGA veteran, is the consensus sex kitten of the women's tour. She was on the second season of Celebrity Apprentice, hosted a talk show on the Golf Channel, produced her own racy calendar and appeared in a Sports Illustrated swimsuit issue wearing nothing but body paint.

On second thought, maybe I'll be attending this tournament with or without clubs.

Proceeds raised from the Middle Market Open will go toward the NKFI's essential kidney disease prevention and education programs like the KidneyMobile®, which conducts free kidney screenings across the state of Illinois. Left untreated, kidney disease can lead to kidney failure and, eventually, to dialysis or a transplant in order to survive.

Every year, kidney disease kills over 90,000 people – more than breast and prostate cancer combined.

Katten Muchin Rosenman LLP and BMO Harris Bank, supporters of the tournament for many years, are the 2014 co-event sponsors.

There's still time to get involved. For more information about the Middle Market Open Golf Tournament, visit www.nkfi.org or call (312) 321-1500. 

FORE! 

It's Like a River

I took advantage of a rare and delightful opportunity this week. As a freelance writer I probably interview well over 100 people a year, but because the assignments come so fast and feverishly I almost never have the chance to meet face to face with the disembodied voices I talk to on the phone.

However, earlier this year I participated in a tremendous project called "30 Stories in 30 Days" through the Illinois-based organization Gift of Hope. Every day in April – national Donate Life Month – Gift of Hope hosts a blog spotlighting one person or family whose life has been forever changed through the miracle of organ donation.

I wrote a half-dozen of the blog entries, and while each story was moving and inspiring in its own right, one really resonated with me. I was assigned to interview a thriving liver transplant recipient from suburban Chicago named Brian Brandt, and we truly seemed to click.

Brian and his daughter, Bernadette. (Gift of Hope)

He was a retired advertising and marketing executive, an industry in which I spent a sliver of my career. He was upbeat, funny and personable, qualities that always make an interviewer's life easier. He knew exactly how blessed he was to be given a second chance at life, as do I. And during his salad days in the ad game, he left the business to spend nearly a decade teaching in the Chicago Public Schools system.

Wow. Hokey mokey. That's a pure act of courage as far as I'm concerned, and one I deeply admire! (You can read Brian's Gift of Hope profile right here.)

So as it happened, I was in Chicago on business this week and my conversation with Brian drifted back to mind. I emailed. He was available, and willing. We agreed to meet for breakfast near his home, in Wilmette, Ill.

What a treat for me to place an actual face with a name and phone call. Brian is a really interesting and passionate fellow, and our encounter went even better than I could have hoped – so much so that we agreed to get together again for dinner, this time with our spouses.

But I have a true fear of driving in Chicago's morning commute. It's like NASCAR, only with pedestrians. Since I never had been to Wilmette before and my GPS said it would take me a half hour from the Loop, I added another 30 minutes to my travel time and left the hotel an hour early.

I made it to our appointed breakfast spot with 15 minutes to spare (after getting lost twice!), and what a relaxing feeling that is. As I leisurely waited for Brian to arrive, I took a few moments to contemplate.

There was a period, when I was much younger, that I didn't value my own time, much less anyone else's. When I was arrogant and self-consumed, I would go so far as to schedule multiple appointments at the same time: I'd make one person extremely happy by being on time, apologize to the second and blow off the rest. Hey, I was worth the wait!

Now, in this phase of my life, my perspective has taken a complete 180. "Better an hour early than a minute late" is the code I live by. I don't mind waiting for others. There isn't an excuse I can think of that justifies wasting someone else's precious time.

I wonder whether my kidney transplant and the remarkable years I've been blessed to enjoy thereafter play any part in my revolutionary thinking. I suspect it does. We're all living on borrowed time, but that fact becomes infinitely more tangible when you've survived organ failure and been able to talk about it on the other side.

Brian knows. For every person who's received a successful transplant, there are so many others for whom the life-saving replacement part arrived too late, or not at all.

I'm old enough that the words of MacDonald Carey's soap-opera admonishment often ring in my brain: "Like sands through the hourglass, so are the days of our lives." My birthday was in mid-June. I yawned and went to the bathroom and it's July already. Tempus is fugiting.

Time doesn't flow at this stage of life. It gushes. I refuse to get caught in the undertow. I plan to savor every nanosecond.

Lana Needs Your Love...and a Little of Your Money

I wish all of you could know my friend Lana Schmidt. I guarantee you, you would be the better for it.

When her kidneys failed her a dozen years ago, all of the energy from them must have rerouted to her heart, because it is supersized and passionate. Whenever I begin thinking that I'm doing quite a lot to advocate for prevention of kidney disease, the proper care and feeding of dialysis patients and organ donation, I read or hear about something else Lana is up to and put on my humble pants again.

We met years ago on the board of the Indy-based Renal Network, where we both serve on the Learning Action Network for Region 10 (the state of Illinois) as "patient subject matter experts." I'm fairly certain one of us deserves that "expert" tag.

Lana can get a kidney! With your help.

In the 11 years she has been on dialysis thanks to an auto-immune deficiency, Lana has tried basically every form of treatment that exists. She started out, as most patients do, on in-center hemodialysis, then switched to Peritoneal Dialysis (my favored form) for seven years. When her body could no longer tolerate PD, she did her own intensive research and selected home hemodialysis as the best means to keep herself alive. 

Feeling the need to assist others based upon what she encountered, she is the co-leader and driving force of the Kidney Patients Support Group of Quincy, Ill., the "Gem City" of west central Illinois, and its sister city across the Mississippi, Hannibal, Mo. She and her writing partner, Patty Purcell, are regular columnist-contributors to the worldwide medical magazine Nephrology News.

Lana sits on the national board of directors for the American Association of Kidney Patients (AAKP). She has traveled to Capitol Hill to raise awareness of renal disease among key policymakers in Congress. Taking advantage of a state-funded home service program, she has partnered with a local college in her area to have nursing students come to her house and assist in connecting her to her NxStage System One hemodialysis machine, easing the daily setup burden for her while providing invaluable hands-on experience for the students.

A one-woman PR agency, she speaks at conferences around the country and last March during National Kidney Awareness Month managed to land two radio interviews, three newspaper articles – including a front-page feature – and a TV station segment in her town revolving around her fight against renal disease. (You can read the text of the TV story here; you can listen to one of the radio interviews here.) She even gave out kidney awareness information alongside her treats to kids in Quincy last Halloween!

Lana Schmidt is a warm, funny and devoted woman, a true believer. And now she needs our help.

Living a relatively healthy life more than a decade after diagnosis, Lana was a dialysis lifer – or so I assumed. I've met many people in the kidney community who are perfectly content to remain on dialysis with no plans whatsoever to seek a kidney transplant. The devil you know, I suppose. But I was very wrong: She is very excited to have a transplant...but there are complications.

After undergoing more than 20 transfusions over the years, Lana has built up so many antibodies in her blood that the chances of finding a perfect kidney match are practically nil. However, she has a found a surgeon, Dr. Enrico Benedetti, chairman of the department of surgery at the University of Illinois Chicago, who plans to administer a drug called Solaris to block the antibodies at the time of transplant so her body won't automatically reject the organ.

This approach has been used successfully with patients receiving a kidney from a live donor. But Lana will be the first person to try the procedure with a deceased donor kidney. And that's the rub.

Because it's an experimental technique, the hospital wants Lana nearby following the transplant so they can monitor her closely. Since Quincy is 300 miles from Chicago, she will be required to stay at the University of Illinois Guest House in Chicago for at least two months post-surgery, and insurance won't cover her stay. The out-of-pocket costs for her transplant will be at least $3,000, and she needs to raise those funds herself.

"Mostly, I am asking for prayers through this journey and that everything works out," she wrote me. "But if you are able to financially support me by donating to help offset those costs, that would be very much appreciated. 

"Please forward this to others who may be interested in supporting me in this kidney transplant process."

Well, that's exactly what I'm doing, Lana!

Folks, $3,000 is such a relatively small amount to raise, and if everyone reading this gave just ten bucks we could cover her expenses in no time.

Believe me, it's money well spent. I know as well as anybody how dramatically one's life can change with a successful kidney transplant. And if anyone can pay that blessing forward to benefit others, it's Lana Schmidt. 

If you're willing to help, click here to make a donation through PayPal. (Just substitute your email address for mine.) Or, send your checks directly to:

Lana Schmidt

1636 N703rd Lane

Liberty, IL, 62347

Then, immediately after you donate, please feel very good about yourself. 

And thanks.

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.

The Game of Life...It's a $#@!*%

How long do you expect to live?

Is it something you've even thought about? I assume you may have pondered the question a time or two, but I don't know. Hopefully you haven't obsessed over it.

After all, life's too short.

As for me, I've contemplated the matter quite often ever since I was very young – especially once I realized that, as a child of the 1950s, it was entirely possible I could live to see the dawn of the 21st century.

("Two-thousand-zero-zero, party's over – Oops! Out of time....")

The late, great, Rev. Angelo Henderson

I'm a Christian, so I truly believe my life is entirely in God's hands anyway. But you can't help but wonder every now and then, can you?

When I was diagnosed with kidney failure (or the more sinister-sounding "end-stage renal disease") in 2008, subsequently went on dialysis and eventually received a 2011 transplant, I figured my final calculations needed to shrink by several years. I mean, my "invincible" body had shown its mortality, and now somebody else's strange spare part was wedged inside me, helping me live.

I have to take pills every day for the rest of my life to keep my natural immune system weak enough so my imported kidney won't stage a revolt, get rejected and screw up the rest of my body. I have been compromised in any number of ways.

Like my Mama used to say, "Once they cut you open and let the air get inside you, you're never the same." As far as longevity goes, this can't be a good thing.

But for now, I'm 60 (I've ever admitted to that until now, and I may never write it again), feel like 30, act like 20 (or so my wife insists) and relish my health and every sunrise. Life is sweet.

Every so often, though, an event takes place that smacks you between the eyes and makes you start recalculating your "out" number all over again.

Usually it's the death of someone very dear to your heart.

Recently, as I wrote in my post "Requiem for a Heavy Hitter," reality came biting with the passing of Rich Berkowitz, founder and president of the national organization Home Dialyzors United and a man dedicated to a noble cause: giving all dialysis patients a choice, and a voice. Rich was an acquired taste, but I slowly came to develop an appetite for his blunt, effective manner and discovered the warm heart beneath.

Rich died suddenly, and unexpectedly, but to be honest he wasn't in the best of shape. He had been on various forms of dialysis himself for many, many years, and over time the procedure exacts a heavy toll on your body. On the heels of losing Rich, however, has come a death that rocked me to my emotional core – and apparently, did the same to an entire city.

I've known Angelo B. Henderson since we worked together on the same newspaper staff in Detroit back in the 1980s. He went on to receive the Pulitzer Prize, journalism's version of the Oscars, at the Wall Street Journal. He hosted a weekday radio program on Detroit's WCHB radio, a station I worked for a generation earlier. His afternoon show, "Your Voice," became required daily listening for thousands of Detroiters and, some would contend, played a key role in helping to overthrow a corrupt City Hall administration.

Angelo with his lovely and talented wife, Felecia.

In other words, we were given the same raw materials, but Angelo used his to much greater advantage. In fact, he upped the ante by becoming a minister, a force in the National Association of Black Journalists (NABJ) and a passionate community organizer.

Coming out of the Jay-Z concert at the Palace of Auburn Hills recently, filled with the joy of music, Angelo slipped on a patch of ice and jacked up his knee. Basically incapacitated, he was recuperating at home while others willingly assumed his public duties.

Bored of just sitting, I'm sure – the words "Angelo Henderson" and "inactivity" never found the same sentence – he reached out to me to help him play one of our mutual guilty pleasures, the online version of Family Feud. If he couldn't amass all 200 points in the "Big Money Round" by himself, he would ask me to play the other side of the board, and vice versa. We were getting pretty good at it, too.

One day we're channeling Steve Harvey. Overnight, Angelo experienced complications. The next day, he was gone.

Gone! Just like that. Gone. At the extremely tender age of 51.

That's barely more than a half-century. If 50 is the new 30 (and I'm declaring it is), Angelo was barely into middle age.

Gone.

For the better part of a week, the city of Detroit was in stunned emotional gridlock. Tributes and memories gushed forth on social media. The Detroit Police carried out a major drug sweep in his honor. They're laying him to rest Monday (Feb. 24), and I'm betting the homegoing ceremony is going to be a sight to behold.

If Angelo had to leave us, it almost seems fitting he should die during Black History Month, because he stood as a gleaming example to many of what African Americans today can achieve.

Now, don't get me wrong: You'd be hard-pressed to find anybody who rejoices in life as much as I do. I wallow in the wonder of every day, especially after being given a second chance at it through a selfless organ donor. If I could, however, I'd willingly give a few of my years to Angelo. He would have used them well and wisely, I think.

God took Angelo to be by His side, a good and faithful servant. He leaves behind a beautiful wife and partner, Felecia, a gifted journalist in her own right; and a son, Grant, whom he should have been able to see walk proudly down the aisles of graduation and marriage. We are greedy folk: It feels like Angelo deserved his 70s, at least.

My transplant experts tell me that if I take good care of myself, do what they tell me and eat my Wheaties, this rented kidney of mine could last 20 years or more. So, let's say 82. That sounds like a nice round lifespan number. Eighty-two it is.

And in every one of those remaining years, Angelo Henderson never will be far from my thoughts. My hero and everlasting inspiration. Rest well, brother.

Requiem for a Heavy Hitter

One of my last blog postings of 2013 focused on Rich Berkowitz, founder and crusader of the patient advocacy group Home Dialyzors United, and the eye-opening experience I had in Orlando as a guest speaker at his annual convention.

I recently realized that this JK entry was going to include Rich, too. But not like this. Not like this.

Rich Berkowitz, R.I.P.

After complaining the past several months of being rundown and out of sorts – and when wasn't Rich complaining about something, usually the lack of treatment options offered to new dialysis patients, the nephrologist-patient relationship or the failure of U.S. airlines to carry portable dialysis machines free of charge – Richard Berkowitz's never-ending fight on behalf of those with kidney disease ended abruptly this week. I think his big, battered body just gave out.

Rich died unexpectedly – and that is the correct word, "unexpectedly," because it seemed like he could roll on forever through his cussedness and tenacity alone – and it's going to take the renal community quite some time to recover from the shock.

I once told Rich I thought of him as "an anchovy on two legs," an acquired taste if ever there was one. And a salty one, at that. He bestrode his world like an obsessed monk. The first time I met him, at a meeting of The Renal Network patient advisory board to which we both belonged, I absolutely could not stand him. I thought he was loud, aggressive, overbearing, unkempt and a know-it-all. (Other than that....) I remember coming home after that initial encounter and blurting out to my wife, Karen, as I walked through the door, "I've got to tell you about this guy I met at the board meeting today."

For some reason, however, like the cat that always rubs up against the one person in the room who's allergic to it, Rich seemed to take a liking to me. He would seek me out at subsequent renal meetings, sit next to me when he could, and whisper additional background details in my ear about whatever topic was being discussed at that moment.

Slowly, I came to realize that the guy really knew his stuff. While his grasp of Robert's Rules of Order wasn't always the best, it dawned on me that he often interjected his viewpoint not to be rude, but because he frequently did know more than the person speaking and wanted to keep discussions factual and on point. Finesse was not Rich's strong suit.

He lobbied relentlessly on Capitol Hill, re-energizing the Congressional Kidney Caucus and striving to educate members of Congress about home dialysis and the needs and rights of patients. Last year he spearheaded a campaign that convinced the U.S. Department of Transportation to include portable dialysis machines as medical equipment that must be transported free of charge by commercial airlines. He was singleminded in his belief that every dialysis patient was worthy of respect and the right to choose the treatment that allowed him or her the highest quality of life.

I was dumbstruck when Rich invited to fly me to Orlando last October to speak at his annual Home Dialyzors United (HDU) "Meet Up and Conference," giving a presentation from a patient's perspective. I was even more flabbergasted when I arrived there. His "Meet Up" was held at a gorgeous, three-star Florida resort and attracted some of the biggest names in the renal universe, all attending because of the relationships Rich had forged with them.

For my part, everything that could go wrong with my presentation surely did. We discovered at the very last moment that my accompanying slide package wasn't compatible with the resort's projection equipment, and we couldn't transfer the slides onto a flash drive in time. I stood in front of a packed conference room and completely winged it. I was dejected and embarrassed afterwards, but Rich was completely supportive. "You were great!" he enthused. "You had them hanging on your every word!" He did have a softer side, although he tended to hide it well.

The last time I saw Rich Berkowitz was in suburban Chicago last December, when we both attended a wonderful presentation by hip-hop artist David Rush (aka Young Bo$$) sponsored by The Renal Network and NxStage. Rush completed an exhaustive multi-city concert tour with Pitbull despite being on dialysis, and his story was as inspiring as it was entertaining. That was the tale I planned to tell in this space – I'll get to it soon – and of course Rich was a part of the story.

After the event, he collared Rush and called me over to meet him. We asked someone to take a photo of the three of us on my iPhone, and it wasn't until I returned to my hotel that I discovered my phone was missing. I talked to Rich a day or so later, and in his typical fashion he commanded, "You better find that phone! I want that picture!"

Well, I lost my phone, and now we all have lost Rich. I couldn't possibly imagine myself writing this after our first meeting, but I grew to think of Richard Berkowitz as a good man and a good friend, and I hope he felt the same about me. I will truly, truly miss him.