Looking for Some (Kidney) Action in Chicago? Hit The Loop This Week

Blowing Hot Air in the Windy City: At Kidney Action Day 2014.

Last summer, I was invited to be one of the guest speakers at the Kidney Action Day in the Chicago Loop, an event that returns this Wednesday, Aug. 26, from 11 a.m.-3 p.m.

I do a lot of public speaking these days, but that was a particularly memorable experience. Driving into (and trying to park in) the heart of Chicago, squeezing into one of the lime-green event T-shirts (what, you don't have size XX-Jumbo?) and competing with the noise and hubbub of Richard J. Daley Center Plaza to shout out my personal story and stress healthy, kidney-friendly lifestyle choices, I was in a blur of activity. I found myself scanning the crowd searching for anyone who appeared to be listening, but just the thought that I might be reaching one person with my journey was exhilarating.

What I remember most, though, was being slotted between a booming, Chaka Khan-style R&B songstress and a young semi-professional acrobatic team. I felt like the standup comic on the old Ed Sullivan Show! All I needed was a set of plates to spin on sticks and I would have fit right in!

Which I guess is one way of saying there is a lot to see and do during Kidney Action Day, sponsored by the American Kidney Fund (AKF). I even struck up a (one-sided) conversation with Southpaw, the mascot of the Chicago White Sox, which as a lifelong Detroit Tigers fan I found more than a little eerie. ("If I did kidnap him, how could I fit that big head in my trunk? Hmmm...") The action and entertainment draws in the Loop lunchtimers, visitors and passersby, but the health benefits are what makes this special day an afternoon delight.

Meeting the White Sox mascot? I wasn't green with envy, but...

There are free health screenings for kidney ailments and other possible diseases, healthy cooking demonstrations – and samples – by Jewel-Osco and Hyatt, and interactive fitness displays from the David Barton Gym, Chicago Latin Fitness and Zumba With Adelle. And oh, yes, Southpaw will make a return appearance, between 12:30-1:30 p.m.

It's all free (one of my very favorite words) and open to the public. Bring your friends and family if you can. Richard J. Daley Center Plaza is located at 50 West Washington Street in Chicago. For more information, visit the American Kidney Fund website or get in touch with Janis Contreras at jcontreras@kidneyfund.org or (301) 984-5053.

While you're there, look for me. I'll be the one carrying around the stack of plates with sticks to match.

Of Paper Towns, Plastic Tubes and Precious Memories

My mother-in-law is recovering at our home from successful open heart surgery (praise God) to replace her aortic valve. She opted to use the valve of a pig for the procedure, and the surgeon told us afterward that he found her to be unusually thin skinned. 

I'm saving that comedic gold until after she fully recovers.

Meanwhile, our family twins, Emma and Madison, got kind of overlooked in the hubbub of hospital visits, pharmacy consultations and post-op therapy. Their summer schedule would be hectic even without Mom's surgery, and I knew I hadn't spent anywhere close to enough time with those two knuckleheads. I missed them dearly. So this week I suggested a movie night.

I picked them up from Vacation Bible School, took them out for a bite at Steak 'n Shake (their fave) and went to a 10 p.m. screening of the coming-of-age teen film Paper Towns. (Note to self: Never let the girls have total voting power over movie selection.)

 This is what happens when you go to the restroom and leave your cell phone on the table. Emma is on the left.

Oh, we had a time! Teasing, laughing – Madison, the fashionista, couldn't stop commenting about the caterpillar thickness of leading lady Cara Delevingne's eyebrows on the giant screen – talking about teachers and boys, sharing deep darkers.

I must admit, I even learned something: the title of the film refers to a trick sometimes used by cartographers to guard against copyright infringement. Map makers would stick the names of imaginary locations – "paper towns" – at strategic places; if they saw the same names on competitors' maps, they knew they'd been ripped off. See, even in the midst of a mediocre movie knowledge can be enhanced!

I am so proud of the young women Maddie and Em are becoming, yet they never fail to bring out the goofy kid in me. They're 15 now; almost impossible to fathom I've known them since they were seven.

The evening got me to reminiscing about one of my most memorable experiences with them – which, it follows, became one of my favorite and most talked-about blog stories. 

So in honor of a night to remember and Throwback Thursday, I'm reprinting the post here from March 27, 2011, during the depths of my time on Peritoneal Dialysis and, although I had no idea at the time, eight months before the kidney transplant that would save my life. I called the entry: 

Jimmy Springs a Leak

Why they waited until the day of their mutual birthdays to decide they had to buy presents for each other, I'll never understand. But the twins, Madison and Emma, pleaded with me to drive them to the mall on a recent Friday after school. Happily, in January I bought a 2011 black Chevy Camaro (feel free to oooh and aaah below) because I decided to fully enjoy my only midlife crisis, so I'm pretty excited to drive anybody anywhere these days.

The girls love to shriek and cavort from its back seat over the sheer power of the Camaro's mighty V6 engine – which, come to think of it, may have been the reason they waited until they were sure I would be the one to ferry them in my "rocket car," as they call it. They have even bestowed it with a nickname: 'Black Betty." I'm thinking seriously of getting a vanity license plate for it this summer that will simply read, "BAMALAM." Those who get it will get it.

Happy Black Man With Snappy Black Car  

Anyway, we're in Decatur motoring down Martin Luther King Boulevard en route to the mall (why do bad things always seem to happen on MLK?) when I decide to call The Wife on my Droid and let her know where I'm headed.

"Gadzooks!" (or something like that) I think to myself. "My phone is wet! How can that be?"

Then, in fast order, I realize the right side of my jeans, my leather jacket and, yes, my underwear are soaking through, too. I pull back my jacket and unleash a spout of liquid shooting straight up into the air – all over the interior of my brand-new beautiful car. Worse, that liquid was quickly identified as warm body juice; the joint where my catheter connects to its external tubing had cracked, and the dialysis fluid that should have been circulating around my peritoneal cavity was suddenly circulating around my Camaro.

As the girls squealed and pointed, I grabbed the leak with one hand and steered the car into a church lot, no easy feat when you're driving a stick shift. I put the rocket car in park, leaped from the vehicle and attempted to cap my gusher. The twins, trying to be extremely helpful, grabbed everything they could find to stuff the leak: used paper tissues on the floorboard, a dirty rag on the backseat. I think I even remember seeing an old PayDay wrapper in all the confusion.

Praise God we were less than a mile from my DaVita dialysis clinic. Doubled over like a gunshot victim in a TV show and working my car's clutch with whichever foot was closest, we sputtered into the DaVita parking lot. It was nearly 5 o'clock on a Friday, but I prayed someone would still be there who could help.

Prayer answered. There has been considerable flux and turnover among the Peritoneal Dialysis nurses in Decatur, and Karey was virtually a PD rookie, but she happily agreed to give my catheter repair a try. While she called Champaign for advice and inspiration, I waited anxiously. When you have a manmade hole in your body with a tube hanging out of it, you are repeatedly warned that infection is a constant danger.

Peritonitis. Can be fatal if unchecked, you're cautioned. And we've just slapped every filthy thing we could find on top of it to stem the tide. We did everything short of blow on the tube to hold the water back! If the catheter gets infected, or needs to be removed, my days on PD could be over.

Emma and Madison, for their part, were wonderful, supportive and encouraging. It took nearly an hour for the emergency patching to be completed, and the girls busied themselves by watching TV in the clinic lobby, talking up patients coming in for their treatments, and taking a semi-guided tour of the facility. (That is, peeking in the open doors.)

Madison and Emma, Acting a Fool at the DaVita Dialysis Clinic   

"Jim," Madison enthused, "this is the best birthday ever!"

I'm sure Maddie doesn't know the meaning of hyperbole yet, but for some reason I had a hard time believing that.

Finally the leak was sealed, temporarily; I had to journey to Champaign the following Monday for the permanent fix. As she was putting on her best finishing touches, Karey asked, "Why didn't you use your clamp?"

"What clamp?"

"Do you have a little white clamp they gave you to tie off the fluid line in case of emergencies?"

Sheepishly, I reached into my jeans pocket and pulled out the small pillbox I carry to hold my mealtime medication. I opened it. Yep, there it is, all right. A little white clamp. Good thing I have that, in case of emergencies. Hey, I could use some emergency training!

As we walked back to the car, I heard a small, tentative voice behind me.

"Jim," Emma asked, "can we still go to the mall?"

What could I say? They had done so well, been so helpful, reassuring and patient. Off we went to the mall.

"But remember, ladies, my underwear is still soaking wet!" I announced. "So please shop as quickly as you can!"

Ever try to make two 11-year-old girls shop quickly?

Ever go through a mall walking like John Wayne?

Postscript: The Wife watched me the entire weekend like I was planning an escape, looking for any hint of fever or discomfort, but I came through with flying colors. No peritonitis. No infection. God is good. All the time.

Here's Some Kidney-Friendly Holiday Gifts – That Don't Involve Surgery

OK, so maybe a major organ may be a bit much for you to contemplate giving this Christmas.

Take your time. Give it more thought. Register as an organ donor, and we'll come around again next December.

In the meantime, if you know someone who's currently on dialysis, our friends at DaVita – the company that holds a soft spot in my heart (actually, a bit lower) because they were my dialysis provider and allowed me to write for them on their "Live Now" website, has created a Christmas list of thoughtful and appropriate presents for dialysis patients.

(If you're unfamiliar with my personal history of kidney disease, dialysis and transplantation, you may find this "Live Now" post of interest.)

Conversely, if you're the one on dialysis, you may wish to review this list, check it twice, then spend the next few days dropping broad, shameless hints about what you'd like to see under the tree.

Rather than copy the list here, allow me to direct you to DaVita's Gift-Giving Guide for Dialysis Patients.

Happy shopping. Merry Christmas. The joy of good health to you.

Click HERE to see the guide.

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.

Regaining My Religion

I have grown lazy. Well, maybe not lazy so much as complacent.

Where my daily Peritoneal Dialysis (PD) sessions are concerned, anytime a person does the same thing seven days a week for the better part of a year, it's way too easy to start cutting corners. Maybe I don't do the full-out, 45-second, official DaVita Hand Wash every time before beginning my fluid exchange (see "Washing My Hands of Everything" from last February), or wear a surgical mask when I want to begin dialyzing quickly. Hey, what's wrong with just holding your breath, huh?

Well, I received a double-barreled dose of reality and reprimand today during my monthly checkup in Champaign with my kidney specialist, Dr. Abdel-Moneim Attia. We went over my bloodwork results for the previous month and Dr. Attia beamed at how well I continue to respond to my PD regimen. All my significant markers – calcium, potassium, phosphorous, albumin – are at or above their recommended levels. My mountain of medications are in no need of adjustment. "You are doing very good," the doctor praised in his warm accent. "There is nothing I need to do for you."

Or so we thought. Since this appointment basically had turned into a conversation, my lips got loose and I let it slip that I'm probably not as cautious or meticulous about my dialysis preparation as I was when I first started. Got skill and experience now, you know.

Dr. Attia looked at me aghast. He then commenced to regale me with Halloween weekend horror stories about patients who were doing spectacularly on PD until they got cocky and stopped washing their hands or using surgical masks and hand sanitizer while preparing to dialyze. "There are more germs on your hands than anywhere else on your body," he chided, "and you're using them to prepare solution that will go inside of you."

That does sound right, I thought sheepishly.

It only takes one nasty microorganism to get inside your peritoneal lining, he warned, and within five hours you've got a million of his cousins bouncing around your belly. Excruciating stomach pain, vomiting and diarrhea typically follow with peritonitis, he said; the infection won't kill you, but you'll wish it would.

And danger can come from the unlikeliest of sources, Attia added. He had one patient, a young woman who lived alone, who was performing splendidly on PD until she decided she needed a companion. She got a kitten. "The cat chewed through the tubing, and its germs got into the solution," he said. He shook his head. "And she was doing so well...."

"All right! I get it! I won't be sloppy again!" I squealed. The good doctor had worn me down. When you've got a catheter embedded inside you, tales of how it can go bad and force you to adopt the dreaded vampire-blood-sucking hemodialysis instead are scarier than any ghost stories I'm likely to hear this Halloween. Or ever.

I'm wearing my surgical mask while I write this. Don't want to accidentally breathe on my hands while I'm typing, since I'll be doing my daily exchange soon. Don't worry, I'll become less militant in a few weeks or so, but I have no intention of backsliding again. Like the U.S. Marines, when it comes to dialysis exchanges Semper fidelis will be my motto from now on.

Always faithful.

It Really Was Diff'rent Strokes

Gary Coleman died today, and if you haven't said, "What'choo talkin' 'bout, Willis?" at least once in his honor, you just don't care.

                        Gary Coleman, Feb. 8, 1968 - May 28, 2010

It was an "intracranial hemorrhage" that ultimately claimed him at the tender age of 42, but if you can believe all the tabloid reports and your own eyes, life hadn't been a painless experience for Coleman in quite some time. I met him, briefly, many years ago; he was pleasant and seemed gracious enough, but you couldn't escape noticing the incredible sadness in his eyes.

You may also know that Gary Coleman fought a lifelong battle with kidney disease. He suffered from a condition known as focal segmental glomerulosclerosis, the illness that ultimately stunted his growth at 4-feet-8 and resulted in two kidney transplants during his life. At one point, it is said he needed four dialysis treatments a day in order to survive.

I guess I'm feeling particularly close to him today because of that. And I'm so very thankful that kidney care and dialysis technology has advanced so far in such a short time. I'm sure Coleman endured pain and misery that I can't possibly imagine because the science wasn't in existence to treat him better just a few decades ago.

This could be why some friends who haven't seen me in a while find it difficult to suppress their shock when they discover that I still look relatively healthy. Mentally, they may be using Gary Coleman as their template. I have a tremendous support network, from my wife, Karen, and my family, to the doctors at Carle Clinic and my amazing nurses at DaVita, all working to keep me looking and feeling this well.

We're not all that different, Mr. Coleman and me: both African American, both adopted, precocious kids born in the Midwest. I'm older, but we're of a generation. But life's a funny ol' dog, ain't it? I realize that Coleman's lot in life could just as easily have been mine. Diff'rent strokes, you know?

Rest well, Gary.

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.

Diane, We Hardly Knew Ye

My beloved dialysis nurse, Diane King, has been trying to reach me all week. We've been playing telephone tag, deluxe edition. I naturally assumed she was calling to congratulate me on my recent lab results. My potassium levels were deemed "Very Good," and I received the coveted gold star for my outstanding phosphorus report!

If only that was the news Diane had called to discuss.

"I just wanted to let you know that I'm leaving DaVita," she announced, in her ever-cheerful lilt.

Gasp.

"And Illinois."

WHAT?

HORRORS!

Clearly I was not hearing the words I was hearing. My own personal AWWOE (Angel Who Walks On Earth), the woman who literally took me by the hand and taught me how to dialyze myself, who came to my home to prepare me for the process – who has drawn my blood and analyzed my urine, for goodness sakes (and there aren't many ways you can get more personal than that!) – my lifesaver woman is announcing that she's leaving me – uh, leaving town?

Say it ain't so, Lady Di!

                                             Diane and me, in happier times.

It's so.

Her husband, a minister, is semi-retired, which allows the couple some geographic flexibility. Diane has found a job with a home Peritoneal Dialysis (PD) firm in Modesto, Calif., where she can be nearer to their son, who's also a minister, and her baby granddaughter. Awwww. How can anybody be upset about that?

Well....

Suddenly (so as to date myself), my mind cues up the lyrics of To Sir, With Love. "A friend who taught me right from wrong, and weak from strong/That's a lot to learn....." Although I guess in this version, I would be playing the part of handsome young Sidney Poitier and Diane would be warbling as Lulu. She's a lulu, all right.

Diane tells me her position as my primary dialysis nurse will be taken by some German woman. I tell her I will try to keep an open mind and not be frightened.

"The hardest thing is going to be leaving all my patients," Diane says.

No, Diane. The hardest thing will be us patients going on without you. Godspeed.

Brace(let) Yourself

Well, I received my shiny new medical ID bracelet in the mail last week, and it's a beaut. Sweet.

It occurred to me that if I was going to be spouting off about kidneys all the time like this, it might be a good idea to become semi-legit. So I sent in an application and donation to the National Kidney Foundation of Illinois, and in return the foundation sent me a spiffy silver medic alert bracelet with a red hexagon in the center and that snake wrapped around a stick, so in case I get bonked on the head or become otherwise unable to communicate everybody around me will know I'm not what you'd call 100 percent healthy.

On the back of the bracelet there's room for five tiny lines of engraved text. I consulted with my AWWOE (Angel Who Walks On Earth), DaVita dialysis nurse Diane King, to determine what those lines should say.

We agreed upon my name (although I probably could have figured that out on my own);

 Jim McFarlin 

my treatment;

Peritoneal Dialysis

the name of my nephrologist (though his full name, Abdel-Moneim Attia, is too long to fit on one line so we decided to shorten it to            

Dr. Abdel Attia     

I hope they can find him in a pinch);

his phone number, unnecessary here;          

217-DIA-LSIS

and my only known allergy.                             

Penicillin 

    

I now have four bracelets on my right wrist. I'm starting to feel like a Jamaican. In addition to the new silver lifesaver, I have the brown beaded bracelet with the butterfly in the center that our 10-year-old, Madison, made for me early in our relationship. I can't imagine taking that off anytime soon; maybe when she gets married. And yes, real men can wear butterflies.

Then there's the bright blue-and-green rubber bracelet I wear from AFSP, the American Foundation for Suicide Prevention (http://www.afsp.org). It's a cause I support and a bracelet I wear on behalf of Jake Kaidan, a beautiful and engaging teen who took his own life four years ago, devastating his mother and my dear friend Lisa Johnson and her husband, Frank. I don't think there's anything that affects me more deeply or intensely than teen suicide. What an incredibly tragic waste.

And there's the simple green plastic strand I wear because Madison thought it matched the color of the AFSP band. I use it to remind me to stay green (I'm a committed – some might say fanatical – recycler) and to make more green stuff any way I can. Wouldn't it be funny if emergency medical people couldn't find the medic alert bracelet amid all the other bangles? 

Hey, wait! That wouldn't be funny at all!

Washing My Hands of Everything

From the very beginning of this dialysis dance, one is taught that cleanliness is next to healthiness. You quickly learn the difference between "clean" and "sterile." (You can achieve the first; try never to mess up the second.)

The one teaching that stays with you throughout the entire process, however, is what is known as "The DaVita Hand Wash." I assume this means that DaVita invented this particular style of hand sanitizing. Otherwise, why would they put their name on it? DaVita is way too respectable an organization to claim something they didn't originate. (Can you see some emergency room doctor in Newark seeing this and shouting, "Hey, this is the way I wash my hands! Where's my lawyer's number?")

The DVHW is a multi-stage process which I will now proceed to demonstrate electronically through photographs. (Although this might be considered a rather antiseptic way to present it! Get it?)

As it was taught to me by my incomparable nurse, Diane King, first one must wet the hands thoroughly with warm water.

                                     Me, wetting my hands.

Apply antibacterial soap to the palms and rub vigorously.

               Pretend you're rubbing your hands together in wicked glee.

Don't forget the bacteria-filthy backs of your hands.

      When was the last time you ever washed the backs of your hands?

Or that virgin semicircle between the thumbs and forefingers.

                                This part is actually kinda fun.

Between your fingers, too.

                                But this part feels kinda silly.

Now, concentrate on scrubbing each of your 10 cuticles individually.

                   The doctrine of separate but equal, applied to fingers.

Then once around the wrists, the palms and backs of your hands again, and rinse thoroughly.

                                          Rub-a-dub-dub.

Use a paper towel – not cloth, too many germs – to remove the excess moisture from your paws.

The tricky part, after all that energetic scrubbing and sanitizing with the DVHW, is not to touch anything on your way from the sink back to the dialysis equipment. If possible, use a faucet you can turn off with your forearm rather than your fingers (see photo above), and hit the light switch with your elbow. It's a skill you can develop. Really.

I am firmly convinced that if every restaurant worker in America adopted the DVHW, we could eat at any fast-food joint in the country – maybe even White Castle – without fear.

You Like Me! You Really Like Me!

I think it's fair to suggest that very few people in the history of crappy kidneys have experienced a more enjoyable monthly checkup than I had last week at the DaVita clinic in Urbana-Champaign. Not only are all of my most important biological markers (phosphorus, calcium, protein and the like) at or above their recommended levels – "You are doing great," smiled my nephrologist, Dr. Attia – but my ego also received a major booster shot.

No fewer than five employees at the DaVita location, including the regional director herself, Ellie Suhl, took time out of their busy Friday to stop by my examination room to meet "the man who writes the blog" and compliment me on the quality of the work and for bringing attention to kidney disease and the outstanding work DaVita does in patient care. One woman said she especially giggled at my description of Diane King, my angelic dialysis nurse, as "Pollyanna," which meant that she not only really read the blog, she also had reader retention!

Now, this means two things:

(a) Many more people than you and me are reading these blatherings, to my great surprise, and

(b) I'm going to have to stop cussing in this blog and take it much more seriously every time out. After all, ladies are watching!

One nice added attraction of my appointment was being able to tell Ms. Suhl and several other people what I'm telling you now: DaVita's corporate marketing department in southern California somehow got wind of "Just Kidneying," and a delightful young woman interviewed me last week for a potential feature story in DaVita's national magazine!

Amazing. Life is a funny ol' dog, ain't it? Thirty-five years spent writing about other people in magazines national and local, and the first national article ever done on me comes as a result of renal failure.

Why, I could become the King of Kidneys! The Dean of Dialysis!

A Moment In Time on a Winter's Night

A few weeks ago Karen and I had occasion to drive down the street and past the modern brick building where my DaVita dialysis clinic is housed. I didn't think my grumble was audible, but wives hear everything.

"What's wrong?" she asked.

"Oh, I don't know," I said, the softness of my voice surprising even me. "I'm just thinking about DaVita." More likely, I was thinking about the specter of yet another training session in my immediate future, this one to learn how to move from manual at-home Peritoneal Dialysis to a "cycler," an intricate, elaborate machine that will do much of the kidney assist work for me over an eight-hour period.

"What does DaVita mean to you?"

Long silence. "Weakness. Sickness. Total change of life. Mortality." Without even realizing it, I had lapsed into a ripple of depression.

"I choose not to think of it that way," Karen replied. "I prefer to think of information. And hope.

"And life."

She looked at me, the way your spouse looks at you when she or he realizes they've just created a memory. She reached over and touched my hand.

We drove on into the dark night, but the streetlights seemed to glow a little brighter.

Moving Around the Block

I have been away from this page, my beloved little kidney khronicle, for nearly a month now. There is no way I ever anticipated being gone so long. It wasn't because I grew lazy, or lost interest in the subject matter. I've just been battling through a severe case of writer's block.

Writers understand the effects of this horrible malady, and know that they are rarely pretty. No one can say exactly what brings on the dreadful condition, but in this case I have my suspicions.

A full week away from my trusty MacBook Pro last month for dialysis "boot camp" training at the DaVita clinic in Decatur, IL, was followed almost immediately by the holiday season. My sister-in-law, Julie, her husband Greg and their three kids (two children and a newborn – 2.5 kids?) came here for Christmas and, well, who wants to write when there are 10 other people frolicking merrily and celebrating family ties in your house?

Who could write, for that matter?

On top of that, the feature story I was writing on that incredibly nice Detroit philanthropist Doreen Hermelin, the lady who made me the tuna fish sandwich (see "Doreen," Nov. 6, and "Rootlessness," Nov. 9), wasn't going well. It turns out she didn't want a story written about her in the first place, so she called repeatedly to check on the status of the article and remind me to keep the focus on her charitable organizations, not on her personally. This is the reason you try to maintain a professional distance from the people you write about and try not to write about friends, so they aren't constantly looking over your shoulder chirping, "How's it going? How's it going?" This usually is not conducive to creative productivity.

Typically when an interview subject is reluctant to open up, my strategy is to talk to people who know the individual and have them say glowing things about him or her. But I also have a personal policy that if I talk to a person for a story, I must find a way to include a quote from them in the article; otherwise they may feel their time was wasted. In Mrs. Hermelin's case, there were so many people who had such interesting insights to share that trying to squeeze them all into the feature, along with background on Mrs. Hermelin as well as details about her charitable causes – oh, it all just became a hot mess.

Sweating over that story delayed my work on other deadline assignments, and in order to call yourself a professional writer you must actually finish an article every now and then and get paid for doing so. An old friend of mine, a writer of mystery novels, once told me the easiest way to overcome writer's block is "by applying ass to chair." In other words, just sit down and start writing something. Anything. But that's easier said than penned. Writing may be just like riding a bicycle, especially when you do it for a living, but even Lance Armstrong occasionally loses his brakes or blows a tire.

I remember a second baseman for the Los Angeles Dodgers named Steve Sax who eventually left baseball because he lost the ability to throw the ball 50 feet from his position to first base. It happens. Who knows why blocks form or why they disappear, but mine appears to have vanished as suddenly as it arrived. Good thing, too, because so much has happened since last we communicated and I've got a lot to share with you. Can't wait to start.

Nice to be back.

Dialysis Boot Camp

I've driven past DaVita dialysis centers ever since I can remember, but began eyeing them more warily once the diagnosis of my crappy kidneys was confirmed. I think I may even have started slowing down to take a closer look as I passed them. I liken it to driving by the cemetery where your plot is located: you know you're going to end up there eventually, but you're in no particular hurry to visit.

Nothing I imagined about what goes on inside those places, however, could have prepared me for the experience of what I lovingly term "Dialysis Boot Camp."

Because I chose the option of Peritoneal Dialysis (PD), which is self-administered at home instead of at a clinic, my DaVita nurse Diane King wanted to make absolutely certain I could perform the procedure on my own before giving her consent. So for the better part of an entire work week in December – from 9 a.m. to mid-afternoon Monday through Wednesday, a day off Thursday to stop my head from spinning from the overload of information and training, then a four-hour "final exam" Friday at our home – this sweet little woman who had guided me gently through the stages of my renal disease suddenly turned into a drill instructor. She became Sgt. Carter to my Gomer Pyle.

"I've been told I can be a little demanding in these sessions," Diane said softly on the first day. No kidding! It was like going to a job again! No, worse: It was like cramming for a master's degree in Dialysis in one week. She even gave quizzes!

Over and over again she drilled me on the steps involved in dispensing PD: Sanitizing the worktable; the seven essential items required to begin (bag of solution, thermometer, plastic clamps, mask, hand sanitizer, new end caps for my catheter, paper towels); inspecting the solution; preparing the bag; hand washing and sanitizing; connecting and disconnecting the bag of solution to my catheter.

We learned the difference between "sterile" and "clean." Every time I thought I was getting the hang of things, there were new details to absorb. My wife, Karen, and my mother-in-law, Linda, patiently sat through the entire ordeal with me. Whenever I felt as if my eyes were about to glaze over, I looked at Karen, who reassured me with her warm smile and compassionate eyes.

We created a "cheat sheet" so we can review the steps in case we forget something. And on "final exam" Friday, Diane visited our little house on the prairie, inspected the lighting, layout and area where the PD would be performed, and deemed us worthy to fly solo. I've been proud and happy to pass a lot of tests in my lifetime, but few that were actually a matter of life itself.

I can dialyze myself now, thank you. Let the cleansing process begin!

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.

A Precious Gift, A Sacred Trust

On Monday I had a long introductory phone conversation with Diane Herche (pronounced Herky), the dialysis coordinator for our insurance carrier, Health Alliance. (And may I say here that I think Herche is one of the coolest surnames I've heard in an eon. I'm strongly considering changing my name to Jimmy Herche.) She is not to be confused with my dialysis nurse at DaVita, Diane King. I'm beginning to think everybody in the kidney game has to be named Diane.

My wonderful wife, Karen, has done a phenomenal job taking the point to coordinate our coverage, satisfy co-pays and ask questions of the appropriate people when we get lost in the insurance jungle, but this was my first time actually speaking to our carrier's representative voice to voice.

Diane is an extremely engaging woman and our conversation soon danced into a variety of kidney-transplant related subjects. With Health Alliance's approval, last week I called Barnes-Jewish Hospital in St. Louis, one of the Midwest's leading transplant centers, and said, "I want to be considered for a kidney transplant, please." (I was told I had to call Barnes personally and make my request with precisely those words in order for their evaluation process to begin. It's like a game show: "Oh, we're sorry, Mr. McFarlin, you didn't phrase your application in the proper form. What do we have as his consolation prize, Johnny? A can of kidney beans! Thanks for playing! And who's our next lucky recipient?")

We have to make sure that Health Alliance is on board with our decisions at every turn. As I explained to Diane, the reason I had to remove myself from the transplant waiting list in Michigan is that my previous carrier refused to pay for the monthly blood screenings that are required to remain under consideration for a donor organ once I moved out of state, and the cost was too prohibitive – more than $300 a month, as I recall – to foot the bill ourselves.

I told her I wanted to ensure that Health Alliance would pay for the blood tests, do whatever they could to help me get my accrued time on the Michigan waiting list transferred to Illinois and approve all the costs of a potential transplant at Barnes even though the hospital is out of state. Her confident voice and obvious experience with the system quickly reassured me that everything would be all right whenever a donor kidney becomes available – possibly within 1-2 years, as opposed to the 4-5 years estimated for Michigan. Amazing how states without motorcycle helmet laws have shorter waiting periods!

What struck me most about our telephone chat, however, was Diane's closing comments about aftercare following a transplant. She stressed that everything I'm doing now – taking my medications religiously, limiting my diet, keeping regular appointments with my specialists – becomes even more imperative after I receive a new kidney.

After all, she noted, while a replacement kidney isn't a cure for kidney disease, it is a gift of life and improved health. They could have given the kidney to any suitable donor, she said; when my time comes at the top of the list, my transplant team wants to know that they've made the right decision and I will respect and maintain the organ I receive.

I never thought about the process quite that way before. When I'm chosen – if I'm chosen – a lot of people will be expecting me to protect their investment in my health. Part of another person's body is going to be entrusted inside me to prolong my life. It's an honor, a privilege – and one huge responsibility.

It Just Came Pouring Out

At the end of our initial visit to the DaVita dialysis center in Decatur earlier this week (see "Hey! This Stuff Is SERIOUS!" Dec. 2 and "Port of Entry" Dec. 3), we met with the facility's social worker, Theresa Kircher. She presented the mountain of paperwork I had to sign in order to make sure my insurance pays DaVita for its efforts and that they're absolved from liability in case my stomach makes like the classic scene from Alien and something bursts out.

But near the end of our meeting, Theresa hit me with a question I totally was not expecting.

"How do you feel about being here and getting ready to begin dialysis?" she asked.

No one had ever inquired about my state of mind concerning my condition quite so pointedly before. Maybe it was because I was in a particularly vulnerable or emotional state, having just completed my first Peritoneal Dialysis practice session. But when I opened my mouth to answer, not even I could believe the words that came rushing out.

I can't remember my words verbatim, but I sure can recall the general sentiment.

"I'm angry, and I'm disappointed. Like Mickey Mantle said in his last press conference, if I'd known I was going to live this long, I would have taken better care of myself. I'm seething with the knowledge that I brought most of this upon myself by not controlling my high blood pressure much sooner, and I feel mortal, weakened, like damaged goods.

"I hate the idea of being dependent on outside sources or mechanical contraptions to stay alive and healthy. I hate having to take more than a dozen pills every day, having to schedule a week's worth of training sessions here to learn my dialysis procedure, having three different specialists sending me bills.

"I hate being pushed and poked and prodded, having my blood drawn so often that I feel like I'm stocking the Red Cross singlehandedly, having all my bodily functions monitored on a constant basis. I hate knowing that this DaVita center soon will become my second home, since I'll have to come back at least once a month for checkups.

"I hate knowing I have to wait for someone else to die, or for a suitable donor with my rare blood type to emerge, before I can even think about receiving a replacement kidney. And I particularly detest the idea that the goal I'm ultimately working toward is to have my body sliced open, getting a foreign organ stuck inside me and praying that my body won't reject it.

"So no, all things considered, I'd rather be anywhere else than here right now. Even Hell seems like a preferable alternative."

The room fell silent. Theresa smiled and said something about a lot of people feeling that way at first.

I don't believe I've ever been so honest about my thoughts about dialysis and my medical condition before – not even to myself. Usually such confessionals can be cathartic, cleansing for the mind and spirit.

Me, I just grew sadder. I felt very empty inside.

Port of Entry

Yesterday we discovered the impressive list of health dangers – up to and including death – associated with peritoneal dialysis (PD), my chosen method for future kidney treatments. But I neglected to show you the results of the operation that will make PD possible in the first place. Maybe I unconsciously channeled my old ad agency experience and waited an extra day to heighten excitement for the big "reveal"!

At any rate, before my training session could begin at the DaVita dialysis center in Decatur, the surgically-created new hole in my belly had to be inspected, cleaned, sterilized and have its dressings changed. (Beware: the following images may not be recommended for the faint of stomach.)

First, the dressings applied during my outpatient surgery on Nov. 24 had to be removed:

There had been some seepage after the procedure during the healing process. Notice the dried blood at the point of incision. (Also note how ashy my stomach had become after a week of being covered by the clear plastic tape that held the gauze in place!)

Once DaVita nurse counselor Diane King took the old dressings away and cleaned the area around the incision, you could clearly see the dialysis port.

See how the tube was inserted in the midsection cleanly – Diane confirmed that my surgeon, Carle Hospital chief of interventional radiology Dr. Michael Neuwirth, is one of the best in the region at this procedure – then burrowed about an inch under my skin before being inserted into the peritoneal lining of my abdomen.

After being cleaned, the site was ready to accept its first dialysis test run to see if the solution that's used for the PD process would flow in and out of my tube smoothly.

Diane set out the materials she needed for the dialysis run-through, including the 2500cc bag of fluid that would eventually find its way into my body, then drain out again.

She disinfected her worktable two times with bleach water, scrubbed her hands for 45 seconds with antibacterial soap, switched latex gloves at least three times and placed masks on everyone in the room to reduce airborne contamination before she began the procedure. All this for the run-through? Hokey Pete! I don't know how you would react, but I was getting plenty nervous and creeped out.

She affixed what's called a transfer set to the end of my tube; that's the attachment that actually hooks to the tubes coming out of the fluid bag. The whole process of filtering the solution into my body takes no more than 10-15 minutes. Then the idea is to keep the solution inside my body for at least two hours at a time (that's called letting the solution "dwell"), draining it out and repeating the process four times a day. Eventually, after I master this manual technique, I can upgrade to a "cycler," a bulky but portable machine that will accomplish the same function overnight when I attach my transfer set to it.

So much to learn, so many precautions to take, so many details. It's all very overwhelming. We will have at least three training sessions of 4-5 hours each, then a home visit by Diane as my final exam, before being allowed to do the manual PD treatments by myself.

We all can rise to challenges as they're presented to us, no matter how great. That's what being human is all about. But I'd be lying if I told you I'm looking forward to this one.

Hey! This Stuff Is SERIOUS!

On Tuesday, Dec. 1, 2009, the first day of the rest of my life arrived. As you may remember, a week ago, on Nov. 24, I underwent outpatient surgery at Carle Hospital in Urbana, IL, to have a catheter tube permanently implanted in my midsection in preparation for peritoneal kidney dialysis treatments to come. Yesterday, at the DaVita dialysis center in my new home of Decatur, IL, the surgical dressings were removed for the first time since the operation, the incision site was inspected, cleaned and sterilized, and a practice dialysis session was held to show me how it's done and to make sure the catheter is working properly.

Notice the look of uncontrolled terror in my eyes.

Right off the top, we (that is, my wife Karen, my mother-in-law Linda and I) received some discouraging news. Diane King, the delightful and extremely knowledgeable DaVita dialysis nurse who conducted our initial two-hour training, relayed the information that my kidney specialist, Dr. Attia, had decided to move up the start of my dialysis from sometime in January, after the holidays, to as soon as my incision completely heals in around two weeks. My latest lab results, from blood drawn on Monday, were not encouraging. My potassium levels were up, and my creatinine markers (the waste molecule generated by muscle metabolism that's an indicator of kidney function) were elevated.

Reality hit us all between the eyes. After talking about the possibility for many months, it was time to get started on daily dialysis treatments. Karen's eyes briefly filled with tears.

This is me with Diane King, the DaVita dialysis nurse. She has a voice like Pollyanna's, which somehow makes disheartening news easier to accept.

But then, before the training process begins in earnest, the first document among the mountain of paperwork I am required to sign is the "Authorization for Consent to Peritoneal Dialysis Procedure." And on the first page, the "significant risks associated with the procedure" are outlined. They include the possibility of:

• Contracting an infection in the peritoneal cavity (called peritonitis), the catheter tunnel or the exit site;

• Developing hernias in the groin from the pressure of the dialysis fluid;

• Erosion or perforation of the bowel walls by the catheter;

• Being stricken with hydrothorax, the leaking of dialysis fluid into the chest cavity;

• Sclerosis or scarring of the peritoneum, which can result in obstruction of the bowel, and, of course,

• Death.

Whoa! Hold on! Back the truck up! I don't recall anyone ever mentioning any of this before the catheter was stuck inside my belly, when peritoneal dialysis (PD) was being praised as the more convenient and advantageous form of kidney assistance. I tend to be the kind of person who looks at the glass as half full, but come on!

Well, we're in this all the way now, come what may. More on the first dialysis run-through treatment tomorrow.

Poison or Hanging?

At my kidney specialist's suggestion, I recently visited a local office of Da Vita, the nation's largest chain of dialysis clinics, to attend an educational session on kidney failure. I had gone through this "Kidney 101" tutorial once previously in Detroit but Karen had not, and I thought it a good idea for us to experience the process together.

We were greeted by a very knowledgeable and attractive registered nurse named Dawn who led us to a private conference room and played one of those hokey "Your Kidneys and You" movies like you might have endured in sixth-grade health class. At one point, Dawn even strapped on a heavy rubber body apron, almost like a fat suit, to demonstrate the relationship between the kidneys and a form of blood cleansing called Peritoneal Dialysis, or PD.

                                                            Dawn and me, at Da Vita

Dawn was very nice and patiently answered all the questions Karen posed. I tried to be my usual nonchalant and amusing self, but let me be honest with you: The specter of what is inevitably going to happen to my body gives me the shivers and makes me more than a bit queasy.

Because to manually replace the function my kidneys perform in cleaning my blood, I either have to have an operation to graft one of my veins to an artery, creating what's called a fistula, so my blood can be pumped out of my body, filtered through a machine and returned – that's called Hemodialysis – or have a tube inserted in my stomach into the lining of my abdominal cavity, where a special solution will flow though to cleanse my blood. That's PD.

Both processes have their advantages and disadvantages, but from where I sit now, they sound like the difference between being asked, "Would you prefer poison, or should we just hang you?" We have decided to go with PD, which is administered in the home and I eventually can do by myself. (Hemodialysis demands actually traveling to a center like Da Vita three times a week, spending eight hours at a shot.) It seems like the lesser of two evils.

I know either method will be for my own good, and will be necessary in order for me to keep living. But they both sound horrific and ominous. The operation was a success, but we lost the patient; I think he passed out.