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.

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."