Happy Happy, Joy Joy

As some of you may know, I am proud to serve as Contributing Editor for Live Now: Rethink Kidney Disease, the website hosted by Baxter Healthcare Worldwide urging people afflicted with CKD (Chronic Kidney Disease) and ESRD (End Stage Renal Disease) to reclaim life on their own terms. (And coincidentally, to promote Baxter's in-home therapies like Peritoneal Dialysis – the system I use and advocate – and Home Hemodialysis.)

My latest essay for Live Now, "Don't Worry, Be Happy," has posted to the site. It suggests that maintaining a positive attitude in the face of a serious illness (or any other bad ju-ju, for that matter) can have a remarkably beneficial effect on one's overall health and outlook.

I'm pretty happy with the piece, but then again, I have a positive mental attitude. I hope you like it. I would repost it here in its entirety, but that kind of defeats the purpose of writing for the Baxter website in the first place. (Besides, they pay me.)

So here's a link to the article: http://bit.ly/v6Isp2.

Please do me a favor: Click to the page at least 50-100 times, even if you only read it once, so the people at Baxter will think I'm a wildly popular writer.

Thank you. Be happy.

Left Holding the Bag

I have just returned home from a grueling 11-day sojourn to Chicago, Florida, back to Chicago and off to Muskegon, Mich., to research my current book, conduct interviews and act as emcee at the wedding of my childhood friend's youngest daughter. Eight different cities, five different hotel beds and countless restaurant meals in a week and a half.

I'm pooped. And just a bit backed up.

And at every stop along the way, my trusty Baxter Home Choice® Automated PD (Peritoneal Dialysis) Cycler machine has been by my side. I realized recently that I haven't really said much about my PD cycler in these musings, which is a sin and an oversight because it's the primary reason I continue to feel as well as I do. In the latest issue of LifeLines, the national patient newsletter of DaVita, a fellow PD user from San Antonio named Jack White describes the procedure more simply and completely than I could:

"The process is so simple most anyone can use PD. First you need a port inserted in the wall of your abdomen. This requires a minor surgery. The cavity in our abdomen that contains the stomach and intestines is called the peritoneal cavity. The lining of the cavity is called the peritoneum and is filled with tiny blood vessels.

"In PD the peritoneum acts as a filter. The peritoneal cavity is filled with a dextrose solution that draws the impurities out of the blood in all of those blood vessels in the lining.

"We hook the solution bags up to the port in my abdomen. The entire process works on gravity. [There's a] drain bag on the floor for the bad stuff.... First the old stuff is drained out of my abdomen into the bag on the floor. The new dextrose solution fills my abdomen and the exchange is done. I'm ready to resume my daily activities. The PD cycler machine is a little computer that directs the swtich back and forth from drain to fill."

                                                             The miraculous Baxter Home Choice® PD Cycler.

It really is an amazing device, especially when you consider that the alternative is traveling to a faraway, antiseptic dialysis clinic multiple times each week, having all your blood sucked out of your body and pumped back in, and being surrounded by masked attendants and fellow sufferers you don't know.

I could not possibly travel as freely and frequently as I do without my cycler. And let me just take a moment here to tell you how wonderful Baxter is. On this trip, after almost two years of near-daily use, eight hours a day, my trusty cycler emitted an ear-bending beep and breathed its last. To make matters worse, its death occurred on the last day of my hotel stay in Sarasota, Fla., and I had not yet reserved my next room somewhere near Miami.

I called Baxter's technical support line and explained my dilemma. "Well, where will you be tomorrow?" my tech, Matt, asked.

"I have an interview in Miami Lakes at 11 o'clock," I said.

"How long will you be there?"

"Two hours or so, I guess."

"Bring your old machine with you. We'll have someone meet you there and swap it out for a new one."

And, sure as the IRS, the next day a Baxter driver arrived at my interview location with a brand spanking-new cycler, dropped it off with the receptionist and took the old unit away before my appointment was concluded. Who says service has gone the way of the Nehru jacket? Very impressive.

The cycler weighs more than 30 pounds, and since it costs more to replace than I'll probably make this year, it never leaves my sight when I'm on the road. I carry it with me on board planes, usually without hassle from the TSA or flight attendants, and because I never know how far it is from my airport arrival gate (why is it always Gate 99?) to the baggage claim, I often swallow my pride and request a wheelchair assist from the gate. Usually, once I sit in the chair and they pile my cycler and briefcase in my lap, no one can see me anyway.

I have tried to make the trek from the gate without a wheelchair. In my slightly weakened condition it feels like dragging a boulder across the desert. At least, that's what I look like I've done by the time I reach the carousel.

Here's my rub: While the cycler rides for free, the supplies it needs to operate – the drain bags, filtering cassettes, clamps, tape and the like – take up so much space they require a separate bag of their own. And American Airlines, which I flew on this trip, licking its greedy chops over the prospect of additional gouging, charged me an extra $60 for that bag of supplies each way of my journey.

That's right. Pick on the sick kidney guy.

I try very hard to fly Southwest, which has no oppressive add-on baggage fees, whenever I can. But there are some places Southwest doesn't go. I'm told there is a way around the extra charge for essential medical supplies. and if anyone knows about this, please educate me. Meanwhile, I'm going to do some research on my own.

I've got another trip, to Little Rock, set later this month. I don't want to be left holding the bag again.

Making a PACt With Baxter

I spent a few days not long ago in scenic Waukegan, Ill., home of Baxter Healthcare worldwide, where I made my first appearance as a member of the company's Patient Advisory Committee team, or PACt. (As a professional editor it drives me batty that the "t" isn't capitalized too, but I try hard not to think about it.)

As another wonderful outgrowth of these wacky blog blatherings, I was invited last year to sit on the patient panel for Baxter, the company that manufactures my dialysis machine and supplies, in the off chance I might have something to contribute.

These meetings are highly confidential, as deep-dark details of products in production and yet to come are discussed freely. I could tell you some of the things we talked about, but then Baxter would have to kill me.

No, seriously.

In fact, it was kind of funny. Before the PACt confab, I was asked by my great and good friend, Trisha Daab of Baxter, to speak to the global marketing group she recently inherited. She wanted me to crank up my standard song-and-dance routine to a new audience and share firsthand feelings and experiences about being a kidney patient on Peritoneal Dialysis (PD). Sadly, the corporate workers who manage and market Baxter's goods almost never get to talk to the end users whose lives depend on their labors.

After that lively session I opened my laptop to check my e-mail. Because the PACt meeting was to be held in the same conference room, I left my computer open to mark my seat.

Minutes before the PACt was about to convene, one of Baxter's marketing bigwigs walked over and gently put his hand on my shoulder.

"Uh, Jim," he said warily, "you are aware that these PACt meetings are confidential?"

"Of course," I replied.

"Oh, OK. I saw you had your laptop out and I wanted to make sure."

Dude, this isn't like a baseball game where I need to cover the play-by-play action of the meeting as it happens! If I was going to reveal company secrets, don't you think I'd have enough sense not to do it inside the company? I was mildly offended! But apparently some of the bigger wigs at Baxter were slightly ruffled by my unvarnished honesty in describing my Baxter-sponsored trip to LA to speak to their annual sales convention (see "Shelter From the Storm" here).

I'm told somebody even asked if there was a provision in my speaking agreement with Baxter that gave the company any editorial control over this blog! I will not be censored! I cannot be controlled or muted! I will always tell the truth of kidney disease, dialysis and my life as I see it, without compromise! You loyal Just Kidneying readers deserve nothing less!

(The strains of "The Battle Hymn of the Republic" should be coming up in your mind right about now.)

For me, the best part of the PACt meetings was the opportunity to meet and interact with everyday people who have dealt with the same affliction that I have – and in some cases, suffered far more pain and damage. It's a comforting feeling to know somehow that you're not alone in this sickness, and a blessing to realize that as bad as it feels sometimes, it could be far, far worse.

The most surprising part of the day was the realization that, of the dozen or so participants relating their experiences with Peritoneal Dialysis, I was the only one who uses the Baxter "FlexiCap Disconnect Cap with Povidone-Iodine Solution" on a daily basis.

You see, the way the Baxter PD cycler works is, old dianeal solution is drained from the peritoneal cavity surrounding your innards, fresh solution is pumped in, then it "dwells" in your body for a couple of hours to attract and filter out all the impurities it can. During the "dwell" period, the cycler is essentially inactive.

Guess I had some wonderful and understanding dialysis nurses to train me, led by my Angel Who Walks on Earth, Diane King: I was taught that if you're careful and maintain sterility, there's nothing wrong with detaching yourself from the machine, capping off the fluid tube with a FlexiCap and going about your business during that time.

                                    The "FlexiCap Disconnect Cap With Povidone-Iodine Solution" at Work.

During the day I run errands, have lunch, work out – just so I'm back and reattached to the cycler before the next drain begins.

When I said this out loud to my fellow advisors, they looked at me like I just fell out of Uranus. "Oh, NO!" they cried. "You must only use your FlexiCap in the most extreme of emergencies!"

Really? Really, folks?

After that, I pretty much just PACt it in.

Until the next advisory meeting in June, that is.

Shelter From the Storm

What I'm feeling is something close to survivor guilt. I'm sitting on the king-sized bed in my room at the majestic Four Seasons in Westlake Village, Calif., a room with a chandelier and a mini-bar. I'm scheduled to speak here Thursday morning to offer a "patient perspective" (read: provide the morning entertainment) for Baxter Healthcare's annual national sales convention.

Baxter flew me out to LA and is putting me up at the Four Seasons for two days to give a 15-minute presentation. God bless America.

But back home on the prairie of central Illinois, weathergeddon has arrived. Sleet. Ice. Snow. All together and in various combinations. We're expecting the locusts and frogs by Friday. Chicago is anticipating at least two feet of snow, much of which will be covering my new black 2011 Camaro (love that car) when I return. That's if I can return.

The airports aren't flying. The roads are shut down. The Midwest is closed for the week, frozen into suspended animation. The University of Illinois, where The Wife works, has closed all three of its statewide campuses for the first time in 100 years. This is serious.

I feel like I should be united with my family, battling shoulder to shoulder against the cruel elements, the sporadic power outages, the bone-chilling cold and paralyzing ice. Then I stroll down the richly appointed hallway to the elevator and down to the sushi bar at Onyx, a restaurant in the Four Seasons, where I order a "Hawaiian Volcano," possibly the best thing I've ever put into my mouth, and I break into bursts of uncontrolled giggling. Decatur, Ill., seems very far away.

The "Hawaiian Volcano" sushi roll at Onyx in the Four Seasons Westlake Village, Calif., maybe the single best thing I've ever tasted.

I came so close to not making it here at all. When the dire weather predictions began filtering through last weekend and Wednesday, the day I originally was scheduled to fly out of O'Hare, was targeted as the day all heck would break loose, my family encouraged me to get out of the house and drive to Chicago as early as I could on Monday. (They said it was because of the oncoming storm, but now that I think about it....) The people at Baxter's travel department, so incredibly helpful, understood my concern and paid the change fee to book me on an flight early Tuesday morning.

Which, of course, I missed.

I stayed at a Holiday Inn Express near the airport, but missed my shuttle ride by seconds. By the time I got to O'Hare 30 minutes later, the best United could do was put me on standby for the next flight at 10:30 a.m. I had a little breakfast, went to the gate and waited. And prayed. And hoped.

The 10:30 flight, the update screens said, was completely sold out, and I was seventh on the standby list. Passengers were rushing the gate like U.S. Embassy workers getting out of Egypt. In my mind, I was contemplating the best place to have lunch at the airport.

Then, at the very last moment, I heard, "Passenger McFarlin!" I grabbed that boarding pass like it was a winning lottery ticket and dashed to the last seat on the 747. God is good, all the time. I was meant to be here, I guess. I swear I could see the storm clouds moving in as our plane was climbing above them.

I don't necessarily feel pressure, but I'm thinking I need to be really good Thursday morning to justify Baxter bringing me here and out of the frozen tundra. I'm going to try very hard not to giggle.

Spreadin' the Good News

I arrived promptly at 8:45 a.m. to my DaVita clinic in downtown Decatur to begin my first day as a dialysis counselor. Yes, that's what I said. (Or rather, wrote.)

My lovely and dynamic new dialysis nurse, Leigh Ann Michael – I know, I've been changing dialysis nurses faster than Illinois changes politicians, but more on that later – is on a mission to get more patients to consider Peritoneal Dialysis (PD), the type of therapy I use and recommend. According to some statistics, less than 10 percent of all dialysis patients are even aware that the PD alternative exists, and Leigh Ann asked if I would join her for a morning walkaround in the hemodialysis clinic to talk to the patients one on one about their treatment options. Leigh Anne said I look so good and relatively healthy for a guy with Stage IV kidney failure, she wanted me to accompany her as Exhibit A on the potential benefits of PD.

I was the demonstration model.

Shawn Steele, a rakish young sales guy from Baxter Healthcare's renal division in St. Louis, drove in with a dialysis cycler machine identical to the one I use (see photo) along with accompanying bags of dialysis solution and other accessories. If you're going to do show and tell, you need to have something to show – besides me, of course. Shawn wrestles alligators in Florida for fun and has photos to prove it, so I felt pretty certain patients would hang on his every word no matter what he brought with him.

   The Baxter "Home Choice" Automated PD System (aka, "The Cycler")

However, Shawn chose to stay in the background and do his PD evangelizing from the lobby while Leigh Ann and I strolled the clinic. Shawn kept referring to me as "our superstar," and while I couldn't help but agree with him, I knew what he really meant. When you're trying to persuade anybody to consider a major change in something as personal as medical care, it helps to have someone who's actually living with the same condition to provide some first-person testimony.

Since all but one of the dozen patients in the clinic that morning were African American (a sad reality), I remarked, only half kidding, "It is a good thing I'm going along with Leigh Ann. Anytime black folks see a white person pushing a cart, smiling and stopping to talk to us, we know they're trying to sell us something. Our first response is to say no."

Unfortunately, even with my "superstar" assistance, that's pretty much the way it went in the clinic that day.

Having thoroughly researched my options at the beginning, I chose PD because of the independence and feeling of self control it offers. Yes, it's a daily procedure being attached to the cycler for eight hours at a stretch as opposed to going into a clinic three times a week for hemodialysis, but knowing myself as I do, I knew two things would happen if I was on hemo:

1. I would be late for at least one appointment a week and either miss my treatment or have it delayed.

2. The thought of having a big needle stuck in my vein and seeing my blood sucked out, cleansed and put back in my body three times a week would cause me to either throw up or pass out. Probably both. At once.

With PD I dialyze when I want – overnight while I sleep, if I prefer – without needles, leaving home or suffering the wild swings of energy and mood that accompany hemodialysis. I realize some patients simply may be too weak or sick to manage dialysis on their  own, but I think many people who are familiar with PD prefer hemodialysis (and I'll probably get in trouble for saying this) because they're either scared or lazy. PD requires maintaining an inventory of supplies and setting up and tearing down the cycler every day. It's way easier just to show up at a clinic, settle into a padded reclining chair and let nurses and technicians do all the work. Plus, some patients fear they'll do something wrong on their own during the PD treatment, contract an infection and wind up much worse than they already are.

Among the patients Leigh Ann and I spoke to, the word "infection" seemed to be repeated like a codeword meaning, "Not interested; leave me alone."

"Wouldn't you prefer to do dialysis without needles?" I would ask. "At home? On your own schedule? Without having to come into the clinic?"

"Infection," came the reply.

"Yes," I answered, "infection is always a possibility. It is with hemodialysis, too. But as long as you don't blow into your catheter tube, let your dog lick it or do something else incredibly dumb, your chances of infection are not that great."

Didn't seem to make a dent in the patients' decisions. In hindsight, I think we might have been much better off talking to the hemo patients individually, before they began their treatment, instead of all together in the clinic. These people usually have the same appointment times and get to know each other over the months. I don't think any of them wanted to be viewed as breaking away from the herd, or leaving the old gang behind.

The saddest case for me was a gentleman who said he had been on PD but had to have his catheter removed. He couldn't have it implanted again because scar tissue prevented the procedure. "I hate hemo," he said. "I miss PD every day. I'd go back on it tomorrow if I could."

As if to prove my group-think theory, while we were struggling in the clinic, Shawn was making converts in the lobby. Two people, a man and a woman, both said they wanted to switch to PD and asked what their next step should be. The man was a street hustler who sold purses and other women's accessories from the trunk of his Cadillac. His third weekly hemo appointment fell on Saturdays, he said, "and it messes with my hustle."

Two out of 14 patients sold. Not great, but not bad. I was so overjoyed, I went out to the parking lot with my man and bought a handbag for Karen from his trunk. It's a red Jimmy Choo original. Really, it is. She loves it, too.

Blogged Down

I truly enjoy this time I spend with you here, tossing some junk philosophy about life and chronicling my journey from lousy kidneys through dialysis and, hopefully one day, an organ transplant. Not only has the process been surprisingly cathartic for me, but I'm often told this blog has given comfort and entertainment to many, while providing me with contacts and opportunities I can't imagine having received any other way.

You'd never guess the depth of my pleasure from the frequency of my postings, though, wouldja?

I look back at how often I've contributed a new entry to Just Kidneying – two in April, two more in May, a grand total of one last month – and I'm embarrassed. It's not for lack of material. I have so many stories I have yet to tell you: my remarkable visit and experience at the Baxter Healthcare headquarters in Waukegan, Ill.,; my all-day medical endurance test at Barnes-Jewish Hospital in St. Louis to be evaluated as a kidney transplant candidate; even my observations on the mechanical dialysis cycler that has been my daily companion, home and away, for the past six months.

It's not for lack of passion, either. The heart is willing, but the fingertips are weak. Here's the problem: I write for a living. It's pretty much all I do, seven days a week. (Freelance writers, I have discovered, are afforded neither days off, overtime, sick days, vacations or any other compensation demanded by the modern American worker.) 

I write for four publications pretty much full-time, and I'm working on a new book. Karen (aka The Wife) is quite favorably disposed to the concept of me receiving checks in the mail for sitting around on my butt all day in front of a laptop ("Any windows today?" she will cheerfully inquire, referring to the long business envelopes with the clear windows in front, frequently denoting payment inside), and if I'm not writin', fish ain't bitin'. 

I have known many people in my professional career who literally live to write. If they weren't working for the newspaper or magazine that employed them, they were crafting poetry or maintaining a journal or writing letters or composing grocery lists. OH, how I envied them! Ever since my first job out of college at The Grand Rapids Press in Grand Rapids, Mich., I have written to live. I write something, somebody somewhere pays me. If I wasn't on assignment, I would much rather be watching a ballgame on TV, going to a movie, sticking needles under my fingernails – anything but continuing to write for the pure joy of composition. Blecch.

When I made the decision two years ago to step out on my own and become a full-time freelance writer, I prayed that God would guide me and help keep work coming my way. Boy, can God provide and answer prayer! If anything, my biggest problem has been too much work; at any given time I usually have three or more stories in progress at once. I could use a nap. 

In the past seven days, for example, I've finished a four-figure assignment on a custom publication for a national advertising agency, completed my regular TV column for The Metro Times in Detroit (you can read a sample here if you're interested) and began working on a feature story for HOUR Detroit magazine. (Though I no longer live there, Detroit is still the primary source of my freelance income, for which I am extremely grateful.)

So I have to prioritize. And as much psychic satisfaction and creative fulfillment as I derive from Just Kidneying, it doesn't pay the car note. I'm still trying to figure out a way to integrate writing this blog more regularly in between all the paying gigs, and I will. Because I want to. But in the meantime, hang in there with me, will you? I miss you when we don't talk more often. And I can't wait to tell you the story about St. Looie.

 

Driving to be the Best

Learning the ordering process with "Lori from Arthur, Ill.," my monthly connection to Baxter and the best customer service rep ever.

I got to see George's locker.

Of the mountain of wonderful memories I have from my two-day visit to the Baxter Healthcare Corp. in Waukegan, Ill., in May with Karen (more about this later), one of the moments that made me giddiest was sitting in the staging area where George, my Baxter delivery driver, receives his marching orders before delivering lifesaving supplies to his regular customers. Like me.

I'm not sure why, but something about being in his "office," so to speak, made me somehow feel more connected to this burly, friendly fellow who arrives each month like clockwork, artfully dodges the low hanging wires on our street as he backs his ginormous semi-truck down to my house, carts dolly after dolly filled with dialysis equipment into our basement, then disappears until the following month.

George is like my Lone Ranger of healthcare. "Who was that fast man?" I think to myself after he departs. "And I wanted to thank him."

Being so near his locker, I was tempted to slip a note inside it, like we used to do in fourth grade.

Dear George,

Do you like me?    [ ] Yes       [ ] No           Pick one

Do you like delivering supplies to my home?   [ ] Yes      [ ] No

When I saw George during last month's delivery, he told me he almost never goes into his locker. So I probably never would have known if he likes me or not. Note to self: Don't follow your impulses.

My introduction to the giant molecule sculpture in the lobby of Baxter's corporate headquarters in Deerfield, Ill. Did you know this thing spins?


I have met so many amazing, fascinating people on this journey since my kidneys started heading south. There's Lori, the Baxter customer service rep who hails from Arthur, Ill., near my current residence in Decatur, and most often takes my monthly supply order. She is so personable yet professional, and we've become such tight phone pals that I literally shrieked with joy and raced to hug her when we finally met in person during my presentation to the Baxter corporate staff. And Trisha Daab, the senior marketing manager for Baxter's renal division who, with Yvette Derbas, arranged all the details of our trip and made the experience both memorable and thoroughly enjoyable. Karen and I have a "couple's crush" on Trisha. What a dynamo.  

There's Dave, a retired telephone repairman from a tiny town in Idaho. We've never met, but we keep in touch quite often through this blog and Facebook. He's been on Peritoneal Dialysis about a year longer than I and has really struggled with it. I hope we're providing mutual support to each other; I know he's been an inspiration to me. (You hang in there, Dave; we're gonna get through this together; you're in my prayers every day.)

But one of the people who has rocked my world the most is Mr. Paul Collins, who recently celebrated his 17th year as a Baxter delivery driver from his base in the Dallas-Fort Worth area. Like Dave, Paul and I have never laid eyes on each other, but he is a walking encyclopedia on dialysis supplies, equipment and kidney disease, and volunteered to share his wisdom with me. I don't know it for a fact, but I suspect Paul may have been the one to recommend this Just Kidneying blog to Baxter and set the wheels in motion for my visit to corporate headquarters.

Thinking inside the box during a tour of Baxter's packaging and testing labs.

Paul is a warm and wonderful fellow. I envision him like Tom Bodett, the author and hotel radio pitchman, but over the years thousands of patients have left the light on for him. He wanted to be a schoolteacher before his brother, also a Baxter driver, introduced him to the business. "I thought, 'I'll do that for a year or two, you know," he reflects with a laugh. Instead, he's spent his career teaching people how to use the equipment that can improve and save their lives, which is probably more significant.

He is the only driver in his region and knows every dialysis nurse in the area, so by the time he delivers to first-time patients he's been talked about so highly that he arrives like an old family friend. "All the levels of dealing with any tragedy in your life, there's denial and anger and so forth," he says. "When we show up for the first time, we never know what stage the individual's going to be in. Some people, they go to the doctor not knowing there was anything seriously wrong with them and they're on dialysis two days later, so it's hitting them like a ton of bricks."

Paul sees people in all stages of health, and because kidney failure is so often linked with diabetes or other serious illnesses, he often reminds me that "if you have to lose your kidneys, losing them over high blood pressure is a good way to do it." In other words, I'm in pretty good shape, relatively speaking.

He keeps in touch with his patients long after they receive their kidney transplants. Paul has great stories to tell about patients who invite him to stay for dinner, or his customer who worked for the mob, or the husband he caught in flagrante delicto with the family maid while delivering his dialysis solution. "I got a huge tip," he says, laughing. But the most amazing gift he was offered, he never accepted.

"There was a guy I delivered to, a real rough character, who would take his horse out and just stay in the mountains camping for two, three months at a time," Paul recalls. "Suddenly, he's on dialysis and stuck in the house, not really fitting in with the rest of society. 

"After several months he got real comfortable with me, and he let me know he was a hitman. That’s what he’d done his entire life. He had cancer, and the doctors only gave him a few months to live. He liked me so much, he offered to take care of anybody I needed taken care of. He said, 'I don’t have anything to lose. Even if I get caught, I’m getting ready to die.' So he was ready to kill somebody for me. Gives you kind of a warm fuzzy feeling." 

Now that's what I call customer satisfaction. Imagine if somebody had done something to really cheese off Paul during that time.

Like sticking some stupid note in his locker, for instance.

But What a Face

I cannot stop chuckling over the unbelievable irony of the past few months. Thanks almost entirely to the unseen exposure of this blog, I have been offered some amazing opportunities that never would have occurred were it not for my crappy kidneys. Who knew that another small burst of quasi-celebrity would come my way in the midst of my midlife crisis, all because of Stage IV kidney failure?

In a few weeks, I will be testifying before the Michigan Legislature at the state capital in Lansing, putting a personal face on the topic of "Chronic Diseases in High-Risk African American Populations" for the National Kidney Foundation of Michigan's annual Diabetes and Kidney Day. I've pretty much polished the outline of what I'm going to say.

"I'm sick! Support us sick people with greater funding!"

The irony here is not so much that I don't live in Michigan any longer, although that is pretty funny; this speaking engagement was offered and agreed to some time before my move to central Illinois. The irony to me is that I could not have a kidney transplant performed in the state of Michigan now even if I wanted to. My current health insurance won't cover it. That's a point I'll be certain to mention during my little chat.

Then in early May, I have been asked by the folks at Baxter Healthcare Corp., the company that manufactures and delivers my dialysis supplies, to be the guest speaker at their quarterly employee meetings in northern Illinois, read a few entries from this blog and leave 'em with a little snappy patter. Guess campaigning for an invitation really works sometimes, eh? (See the "Cancel the Tour Guide" entry of Feb. 10.)

Baxter is really doing this first class. They offered to pick me and my Karen up in a company car and drive us to the meeting, put us up in a hotel the night before and pick up the tab for dinner after the event. Pretty snazzy. Originally, when they extended the invitation, I thought it was going to be sitting around with a handful of workers in the Baxter coffee room and engaging in some clever small talk. "Oh, no," explained Trisha, the Baxter senior marketing manager. "This is the quarterly employee meeting. There'll be hundreds of people there, the corporate executives, teleconferencing...."

Oh.

My patter had better be snappier than I thought.

But the real kicker of late is my selection as the "Male Face of Kidney Disease" for DaVita, owners of the dialysis centers that coordinate my care. DaVita launched a new Web site a month or so ago on behalf of their awareness-raising Kidney Run/Walk events across the country. They wanted to humanize the affair and selected three women with kidney disease to tell their stories in the online forum. Apparently, they were having trouble finding a man to help balance the presentation.

"Would you mind if we told your story on the site?' the DaVita marketing people asked me. Again, they never would have known that I, my crumbling kidneys, YouTube or my Little Home on the Prairie even existed if it were not for someone turning someone at DaVita headquarters onto "Just Kidneying." What a world, this Internet!

So I'm on the site, putting my manly face and personal story on the cause and effect of kidney failure. You can see the page here. When I informed my Facebook friends, always a supportive bunch, some suggested it was way better than being the Male Face of Incontinence, or Erectile Dysfunction. Jimmy Doom, a Detroit actor, writer and one of my favorite people, opined that as long as the role didn't involve wearing a mascot's costume, how bad could it be?

Others have suggested that maybe I should find a mascot's uniform. Hey, what are they saying about my face? If I can find a getup in the shape of a kidney, I'll let you know.

Cancel the Tour Guide

I called the Baxter 800 number this week to place my monthly order for dialysis solution and supplies. One of the many new hats one wears as a kidney dialysis patient is shipping and receiving clerk.

Baxter provides you with a handy-dandy order pad, and every month you're supposed to do an inventory count of the cases of "Low Calcium Peritoneal Dialysis Solution With 1.5% Dextrose" and related equipment (like tubes, bags, masks, catheter caps) you have on hand, estimate how many more you'll need over the next 30 days, then phone in your order to Baxter.

I have determined that I am horrible at this. It's really hard to look at 30 cases of anything stacked up against a wall in your home, then call somebody and exclaim, "What the heck – send me 30 more!" But because it takes about two weeks for Baxter to process the order and get that mile-long delivery truck of theirs to your door, you have to think in abstract terms of what won't be there in two weeks, not what you see with your lyin' eyes.

Fortunately, the Baxter operators who take your order have gone through this process a few times before – in the previous 15 minutes, most likely – and are unfailingly helpful, cheerful and experienced. (I know that sounds like a commercial for Baxter, but it's true; believe me, if I ever have to deal with some stereotypical order-processing doodyhead, I will tell you about it.)

At any rate, as I'm going over the supplies in house to confirm this month's order, I glance at the words printed in the corner of one of the boxes: "Baxter Healthcare Corporation, Deerfield, IL."

Deerfield! I'm living currently in Decatur, Ill. Geobytes.com says the two cities are only 170 miles apart! (Out here on the prairie, people drive 100-plus miles between towns like they were going to the corner store for a cherry slush.) Maybe I can wangle a tour of Baxter headquarters! Suddenly I have visions of giant vats of "Low Calcium Peritoneal Dialysis Solution" being squeezed into the plastic bags I use when it's time for my kidneys' daily rinse cycle, and sterile tubes carefully being connected to the bags by happy, mask-wearing employees. Look! They're whistling while they work!

The next sound you hear is my thought balloon being popped. "Oh, we don't produce any of the materials here," the cheerful operator informs me. "We just take our customers' orders in this location."

Drat. They probably don't even wear masks while they do it. I'd still like to take a Baxter tour someday, but rows of operators chatting on headsets is not quite the impressive vision I had imagined. As long as I don't find out someday that the solution that rumbles around in my body isn't being manufactured in China or Uzbekistan, I'll still be pretty geeked for a day trip to Deerfield. Did you know the Irish settlers originally wanted to name the village "Erin," but lost out to the "Deerfield" faction by four votes?

No, I didn't think you did.

The 1.5, 2.5 and 4.25 Percent Solutions

Earlier this week – even earlier than promised, actually, and how often does that happen these days? – a blue-and-white Baxter delivery truck about the length of Toledo pulled up in front of our little house on the prairie and dropped off my first supply of "Dianeal, Low Calcium, Peritoneal Dialysis Solution with 1.5% Dextrose" (let's just call that PDS for short) I'll be using for my manual daily dialysis exchanges that begin this month.


Baxter, I'm sure you don't know, is "a worldwide leader in providing lifesaving products and services for patients who suffer from kidney failure." I know this because Baxter told me so on its self-produced instructional video, "Going Home With Confidence." The Baxter delivery driver could not have been friendlier or more informative, which is important when some burly trucker you've never seen before wheels into your house with 13 cases of sugar-water-in-a-bag.

(The video says to make sure you check the driver's identification before letting him into your home; I think an 80-foot tractor trailer pulling up to your front door with "BAXTER" emblazoned across the side would be a pretty strong hint that the guy's legit.)

And yes, I said 13 cases of solution – which, since my dialysis cycle is beginning in the middle of a month, is only a partial shipment! The driver told me a typical delivery in months to come should average as many as 30 cases! Thankfully, we have a small nook just inside our front door and next to the fireplace that I cleared out beforehand to make room. But imagine trying to find space in your place to accommodate 30 new packing boxes of anything.

                   What 13 cases of dialysis solution looks like in a corner.


Each case contains a half-dozen bags of fluid, 2,000 millileters apiece, about the length of a football and as heavy as a half-gallon of milk. Every bag is encased in a larger plastic bag for protection and includes its own pair of connecting tubes (one for fluid in, one for fluid out) and drainage bag for the liquid's final resting place. It's a modern miracle of in-home medical technology.


Not all the bags are mixed with 1.5 percent dextrose. Some have 2.5 percent, others as high as 4.25 percent. My nephrologist, Dr. Attia, will determine which concentration is best for me as my condition changes. As the manual exchange program calls for pouring in and draining out four of these puppies a day, the supply is likely to disappear quickly.

                                     The bag inside the bag.


Here's the kicker for me: the DaVita office arranged for the first home delivery, but I have to schedule every subsequent shipment myself. That will mean calling Baxter at least two weeks before I need supplies, making an order and keeping a running inventory so I know what I have in stock and what I need to request. Any lawyer, accountant or tax preparer I've ever had in my life is laughing uncontrollably right now over the idea of me keeping accurate records of anything.


I think the empty bag isn't the only thing that will be draining.