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.

Flying the Friendlier Skies

Jetting Down South to Orlando this week to attend and present at the 4th Annual Home Dialyzors United (HDU) "Meet Up and Conference," I couldn't help thinking about a similar flight I took in this direction several years ago. In Atlanta, a burly baggage handler at the Hartsfield-Jackson International Airport and I nearly came to blows in a tug-of-war over my "suspicious" suitcase.

Inside the menacing black bag was my trusty 27-pound Peritoneal Dialysis cycler, the Baxter HomeChoicePro. I had traveled extensively with it in the past and received not a peep of protest from airline personnel, and breezed it through security this time without a hitch.

As I was lumbering down the jetway to board this flight, however, Harry Knuckles in the blue coveralls gave my case the quick eyeball and deduced that it couldn't possibly fit in the overhead. He literally attempted to snatch it out of my hands as I passed by.

I yanked back. He pulled again. After several tense seconds I stared him in the eye.

"LOOK!" I yelled in his face. "What's in this case costs more than you and I make in a year! It is NOT leaving my sight! If it goes under the plane, I'm going under with it!"

Eventually, Magilla Gorilla relented. And a place was found onboard for my cycler.

Tragically, from what I've since come to understand, mine was not an unusual nor isolated experience. Hopefully, it's one that will not be repeated in the future, thanks to the aggressive lobbying of Home Dialyzors United.

This summer, HDU persuaded the U.S. Department of Transportation to issue an official guidance letter to the airline industry outlining the regulations to carry portable dialysis machines for passengers with disabilities – free of charge, of course.

By law, all U.S. air carriers are required to carry assistive devices for the disabled without charge. But previous regulations spoke primarily to such equipment as wheelchairs, oxygen units, canes and personal respirators. There was no specific mention of portable dialysis machines, which have become increasingly more common in recent years as more and more Americans with kidney failure opt to do dialysis at home – more than 40,000, according to best estimates.

"It's a huge victory for home dialyzors who have been discriminated against when traveling by air with their portable dialysis machines,” says Rich Berkowitz, founder and president of HDU. And he is one of them: His crusade began in January 2010 when, flying for the first time since going on home dialysis, he was denied permission to bring his portable equipment on board.

"I got into a huge fight with the [airline] managers, and finally ended up talking to a supervisor who let us put the machine on," Berkowitz recalls.

Here is something everyone who has ever met Rich Berkowitz knows well: Don't cheese him off, or give him a cause. The airline did both.

He filed a complaint with the Department of Transportation and sent an email to the CEO of American Airlines, with a copy of his DOT complaint attached. "So I got a call back," he says. "But American really ended up doing nothing." Rich began hearing similar complaints: one poor home hemodialysis patient had to miss his flight and return home when United refused to allow his life-preserving apparatus to fly with him. Another DOT complaint, another CEO communiqué.

Rich wrote an open letter to the airlines and posted it on his website, http://homedialyzorsunited.org/. But he didn't stop there. As founder of the Friends of the Congressional Kidney Caucus, Berkowitz has cultivated a few BFFs on Capitol Hill. He consulted each of them until he found one with a good hook into the DOT. And in June, an official revised set of assisted devices guidelines was announced that now includes portable dialysis machines. Since then, a foreign airline, the state-owned Caribbean Airlines Limited, has followed suit.

"Here's the thing," Rich says. "Forget about the fact that I did it. The fact is, somebody did it. Somebody took the initiative and was persistent enough to get this thing done. The message we have to get across to dialysis patients is, we can make change."

Rich Berkowitz

I was reminded of all this while soaking up knowledge at the HDU's annual showcase event this week. The nonprofit Home Dialyzors United is the only dialysis patient organization dedicated exclusively to home dialysis. The group is – oh, who am I fooling? The group is Richard Berkowitz.

He is the originator, guiding force and conscience of HDU. Rich is haggis on two legs: an acquired taste if ever there was one. Irascible, cynical, blunt, tenacious...the next words he minces with anyone will be his first. But his unbridled passion for home dialysis and kidney patients oozes through his every pore, and as the tale above demonstrates, he gets things done.

His two-and-a-half day conference was a true eye-opener. The location, the sumptuous Rosen Centre Hotel, was more resort than meeting place. Presenters included a psychologist from Denmark. The second HDU awards banquet featured the man generally considered the father of home dialysis, Dr. Christopher Blagg of Seattle, and honored Dr. Christopher Hoy, medical director of the Rubin Centers in Albany, NY, who championed the first home hemo program in New York.

The event brought together some of the nation's most prominent nephrologists along with patients, nurses, care partners and renal professionals, to share information and support while achieving the one-on-one face time hectic schedules almost never allow. The "Meet Up" was a place to ask questions informally, share experiences, find hope. (Although I'm not quite sure about that name.)

It was an amazing gathering. I can't wait to go again next year.

But being a one-man band, even with the assistance and care of Rich's delightful wife, Karen, can exact a toll. Late on the first full day of the conference, Dr. Victor Gura, the internationally renowned UCLA nephrologist who invented the wearable artificial kidney, was wrapping up his presentation; Berkowitz, seated in his customary spot on the front row of the gallery and clearly exhausted from his organizational duties, had fallen fast asleep.

Gura couldn't resist: "If you'd like to see the slides from my talk again," he said, "I'm sure they'll be placed on the website by Rich – Rich! RICH!" Rich didn't move, until Karen walked up to gently embrace him awake.

Even then, Berkowitz could be surprisingly self-deprecating. The next day, introducing Gura for his second appearance, he said, "I'm sure everybody heard Dr. Gura's talk yesterday...but me."

Jimmy Cracked Crabs, and Learned About Care

Got an email from The Renal Network, the nonprofit dialysis monitoring group that made this an "award winning" blog and for whom I serve as patient representative for its "Network 10," covering the entire state of Illinois.

There's a national conference in Baltimore this September aimed at improving safety for dialysis patients, the message said, and would you like to attend as our guest on behalf of Network 10?

Swear to God, the first thing that leaped to my mind was, "Hmmm, crab cakes."

What the heck? Who am I, the black Homer Simpson?

But yes, of course! I shuffled a few meetings on my schedule and gladly agreed to go. Selfish motive: I've been invited to speak at another national convention in Orlando the following month about my experience as a kidney patient on Peritoneal Dialysis (or PD – more about that at a later date), and I hoped to pick up a few factoids or public speaking tips that might help my own presentation.

Well, I'm back from the convention – held at the worst hotel I've ever had the misfortune to inhabit, the Sheraton Baltimore City Center – and I'm so glad I went.

(Why is this Sheraton Baltimore the worst hotel in my history, you may ask? Thanks for caring! Let me give you just one example:

The morning of my checkout, preparing for a 15-hour travel grind from Baltimore to Detroit, I hopped into my shower only to discover it had no water. Not just no hot water: no water at all!

When I went down to the front desk to complain, the uncaring clerk slapped a piece of paper on the counter and pushed it toward me. The heading read, "Baltimore Water Restrictions." Apparently, the city was in the process of upgrading its water pipelines.

"It's the city's fault," the clerk said, looking at me like I should just understand.

Would you want to begin a grueling daylong journey without a hot shower? Would you pay $200 a night to stay in a hotel that couldn't provide one? Even Motel 6 can do that! I pitied the people who sat next to me on the flight home!)

I do love Baltimore, however. Went there years ago simply because it was a major American city I never had visited before, and set a goal to sample as many varieties of crab as I could. For five days I savored authentic Maryland crab broiled, baked, sautéed, fried, steamed and raw.

And crab balls.

All crustaceans that are weary and heavy laden with butter, come to me and I will dip you in tartar sauce. Seafood, eat food. I knew it was unlikely I could duplicate that bliss during the gaps in a day-and-a-half conference, but it wouldn't be for lack of effort.

Grand and glorious city, Baltimore. The Inner Harbor. Camden Yards. The National Aquarium. But I must say, they do drive kind of funny there.

Saw this on my walk back from dinner on my first night in town. I'm thinking the driver must have figured this was the real Grand Central and his car was a train.

My biggest takeaway from the conference – besides the crash and the crab cakes – is that nephrologists and other medical practitioners are just as concerned about patient safety as patients are, if not more so...and just as bewildered and uncertain about the best way to achieve it consistently.

Dubbed "Creating a Culture of Quality: The Critical Role of Communication in Improving ESRD (End-Stage Renal Disease) Patient Safety," the keynote speaker was Jonathan Blum, whose title is, "acting principal deputy administrator and director of the Center for Medicare Centers for Medicare and Medicaid Services (CMS)."

That's mouthful enough, but Mr. Blum could have stood at the podium and yodeled the lyrics to "Blurred Lines" and this audience would have hung on every word. That's because whether you're a dialysis patient, kidney transplant candidate, recipient or medical provider, you are intensely interested in the status of CMS because it provides so much financial assistance for renal patients who could not possibly shoulder all the costs of dialysis treatments and medications on their own.

Blum declared that Medicare is spending "much less than any other avenue of the health care delivery system" and that CMS is "producing more value, higher quality and lower costs to taxpayers and beneficiaries. It is possible to improve overall benefits...while costs are going down."

That's such good news that I was hoping he wasn't just delivering happy talk to an audience eager to hear it. Then again, as far as I know Blum isn't running for office, so I'll take that positive outlook at face value for now.

I was so impressed by Dr. Richard Formica Jr. (pronounced exactly the way you wouldn't think), associate professor of medicine and surgery at Yale University, who shared the results of Yale research that shows major disparities and barriers exist in access to kidney transplants, then discussed his university's approach to solving those problems.

According to Formica, such factors as education (or lack of it), socioeconomic status, race, obesity, even gender (males over females) can play a role in one's placement on a transplant list. Once you're on the list, he said, everyone is equal, but prior to that being poor, or black, can make a difference. As he continued speaking, it sounded as if being African American was such a roadblock to receiving a new kidney that I leaned over to my friend Jim Dineen, representing Network 9, and whispered, "How the heck did I ever get a transplant?"

However, as is so often the case, it was the personal stories from patients, regular folks who have faced extraordinary medical challenges and stared them down, that left the greatest impact.

I was fascinated by the poise, polished thoughts and communication skills of Virna Elly, the ESRD patient representative for Network 5 (the home team, representing Maryland, Virginia, West Virginia and D.C.), who has been a diabetic for 33 years, an ESRD patient for 13 and has battled hypertension, hyperthyroidism and cataracts. "I've been sick longer than I've been alive," she quipped, though she soon will celebrate eight years with a successful kidney/pancreas transplant.

Elly posited the unique theory that to truly understand the kidney patient experience, one shouldn't visit dialysis centers or waiting rooms – go to support and advocacy groups, filled with people who are actively involved in gaining knowledge and insight about their illness. "If you really want to know about alcoholics," she reasoned, "don't go to the bar. Go to AA."

Yet, the superstar of these sessions for me was the delightfully homespun Maggie Carey, chair of the Patient Advisory Committee for Network 11 (Mich., Minn., N.D., S.D., Wis.) and the second of four family generations to be afflicted with polycystic kidney disease.

"I watched my mother die on dialysis," said Maggie, who soon will celebrate 17 years with her kidney transplant, remembering her abject fear of going on Peritoneal Dialysis – or any form of dialysis, for that matter. "My nurse said, 'Oh, honey, you can do it. My father does it, and he's 90. And blind.'"

Maggie contended there are three basic questions every patient diagnosed with kidney disease asks:

"Am I going to die?"

"Am I going to look silly while I die?"

"How much is it going to hurt?"

I, of course, would add the fourth, and most important question of all:

"Will I still be able to eat crab cakes?"

(For information on the "Creating a Culture of Quality" conference itself, including all presentation slides displayed at the event, go to esrdnetworks.org and click "Quality Conference September 2013" on the left-hand side.)

Walking in the Motor City, Hoping for a Lift – Come Join Me Saturday!

The facts are these: African Americans, who seem to fall victim to every illness from diabetes to high blood pressure at a far greater rate than the rest of the population, make up the majority of people on waiting lists for organ transplants.

However, although black folks need more organs, we donate fewer after we die. A lot fewer. And nearly every medical study you'll see says an organ from a donor of the same racial or ethnic group has a much better chance of being transplanted successfully and overcoming rejection.

C'mon, brothers and sisters, step up! Do you really want some middle-aged white woman's kidney rumbling around inside you?

(Whaddaya think? "White woman" reference too much? Over the top?)

I'm in Detroit this weekend, making an 800-mile round trip from my current home to my favorite city because this is an issue I care about passionately. I was so blessed: I received my donor kidney from a young African American girl, and some doctors say I'm doing better today than I ever did with my own kidneys. She literally saved my life.

You could save some lives, too.

This Saturday, July 27, I'll be speaking – and walking – at the 16th annual LIFE Walk on Belle Isle, sponsored by the Detroit chapter of  MOTTEP (the Minority Organ Tissue Transplant Education Program). The event features a 5K and 10K run in addition to a 5K walk (my mind and heart say "run," but my knees are holding them both hostage in favor of "walk.") The real purpose, however, is to heighten awareness about the critical need for more minorities to consider organ donation.

I hear the goal of Saturday's get-together is to sign up 250 new organ donors. What? I think we can do at least twice  that, even though many of those who will attend the LIFE Walk already may have committed to donation. I say 500 new donors! Hey, why not think big?

I'll be joined by some local TV celebs from Channel 7 (WXYZ), meteorologist Keenan Smith and news anchor Glenda Lewis. And I understand that Glenda's mom, Detroit television legend Diana Lewis, may show up as well. (Can't wait to give her a big hug!) And my old friend (whom I haven't seen in years – some friend I am), former U.S. Attorney Jeffrey Collins, will serve as the official Run Marshal.

If you're anywhere near Metro Detroit, come and join me Saturday if you can. Registration opens at 7:30 a.m., the run begins at 8:30 and the walk commences at 9. My goal: To touch your heart and conscience, bring a tear to your eye and make you knock other people over in your rush to sign up as an organ donor.

I promise you three things: It won't hurt when they harvest your organs for donation. You could help eight people or more live fuller, happier lives as your legacy.

And no matter where you end up going, you won't need your body after you leave.

'Hot in Cleveland' Is Hot for Donors

Here's a great reason to watch the TV Land sitcom Hot in Cleveland this week, besides the irrepressible Betty White and the extraordinarily fine Valerie Bertinelli, who I had a major crush on when I was a kid and she was on One Day at a Time especially because I knew she grew up in suburban Detroit not far from where I lived and....

Malick, Leeves, Bertinelli and White, 'Hot in Cleveland'

Oops. Went off the grid there for a moment. Sorry.

In a first-of-its kind partnership, TV Land and Hot in Cleveland are teaming with the nonprofit organ donation website MatchingDonors.com to raise awareness of the crucial need for organ donors with this week's episode Wednesday (7.17) at 10 p.m. EST. In the storyline, legendary soap opera star Victoria Chase (Wendie Malick, who I had a major crush on...oh, never mind) makes the life-altering decision to donate one of her kidneys to a desperately ill young girl.

You'll laugh, you'll cry, you'll be moved, I suspect.

MatchingDonor.com claims to be the most successful nonprofit agency targeted to "finding living altruistic organ donors for patients needing transplants," receiving more than 1.5 million hits to its website every month.

"We are proud to partner with TV Land," says MatchingDonor founder and CEO Paul Dooley. "Their unselfish efforts in promoting organ donor awareness will directly result in saving lives."

As someone whose life was saved by a successful kidney transplant Nov. 18, 2011, you can bet I'm eager to see this episode. My donated kidney wants to watch, too.

I've been telling her about Valerie and Wendie.

EVERYTHING You Wanted to Know About Transplants – But Didn't Know You Wanted to Ask

Most people know that the wonderful comedian George Lopez received a kidney transplant in 2005, and got the donor organ from his wife, Ann. But did you know he wanted absolutely no part of becoming what he calls "the poster boy for kidney disease?"

George Lopez (Gavin Bond/TBS)

"I just wanted to get in, get out and get on with my life," Lopez admits. "But...I decided that I could not turn my back on the message of organ donation, of prevention, and of taking an interest in your health and the health of your family."

What changed his mind? I found out – and you can, too – in the weekend edition of USA Today last week, which featured a Media Planet section entirely devoted to issues surrounding organ transplantation in America.

Beyond what's billed as Lopez's first-ever interview about his transplant, there are stories on:

• How medical and technological advancements are helping to lessen the time spent on the waiting list for a replacement organ;

• A discussion on the future of transplantation with three celebrated medical experts;

• An article on the financial burdens and realities following an organ transplant;

• A first-person feature on snowboarder Chris Klug, who continued to excel at his sport despite a liver transplant, and much more.

It's a truly impressive – and unexpected – collection of stories regarding one of the topics nearest to my heart. (Or more accurately, my kidney.)

Among the things I think I already knew but are always worth repeating are:

• More than 118,000 Americans are waiting for an organ transplant right now;

• Many of them will wait five years or more for the opportunity to receive a replacement organ;

• Thousands of them will die every year as the gap between the need for organs and the number of organs available continues to widen.

And something I didn't know: 40 percent of all transplanted lungs are rejected.

Yow.

This section from Media Planet, an independent content provider, is really worth diving into if you want to know more about the present and future of transplantation. I'm so glad "Sidney Kidney" turned me on to it. (If you don't know, I can't help you.)

You can read the section HERE.

Funny, You Don't Look (Barnes) Jewish

I have a deep, abiding affection for Barnes-Jewish Hospital in St. Louis. I imagine I always will. It's hard for me not to think of that sprawling medical complex in the shadow of the Gateway Arch as the place that saved my life.

B-J was, and still is, my kidney transplant center. My wife and I chose it over hospitals in Chicago and other cities for many reasons: its sterling reputation and record for successful transplants primarily, but also because we figured it would be easier and cheaper to get in and out of St. Louis for our many medical appointments and eventual surgery. And, although this is impossible to quantify, we thought the people in the St.L might be nicer and more accommodating as well.

Dr. Jason Wellen, right, and Happy Patient

Like I said, we can't tell if that's true for certain. But after our experience there, we suspect it might be. Surely Dr. Jason Wellen, the Barnes-Jewish surgeon who performed my operation,
is the kind of standup guy you'd love to have a beer with – if, of course, you could drink beer right after having a transplant.

So when Barnes-Jewish senior media relations coordinator Anne Bassett and her department asked me if I would contribute a guest blog to the hospital's website in honor of April as National Donate Life Month, what was I going to say? "Hold up, let me think about it?"

I don't know if other transplant recipients are as passionate about increasing the ranks of organ donors as I've become, but by the same token I can't imagine how they couldn't be. A successful transplant is more than even the "gift of life:" it's a life utterly reborn.

And like I say in my post on the Barnes-Jewish website, which I do hope you'll read by clicking here, it's a cause I feel so strongly about – especially for people of color – that I was willing to endure frostbite and the potential loss of body parts earlier this month to sign up potential donors.

My sincere thanks to Anne Bassett and all the extraordinary people at Barnes-Jewish Hospital for the opportunity to invade their online space. They may be residents of the heartland, but they do mighty fine with other organs, too.