Paying My Kidney Forward

An acquaintance of mine, a fellow member of the National Association of Black Journalists Detroit chapter of which I am proud to belong, contacted me via private online message not long ago.

(I won't mention him by name, so I can talk about him.)

He began with the obligatory courtesies: "We have met a few times in Detroit...I'm not sure you remember me but...." Then just about the moment I mentally connected his name with a face, he smacked me with an emotional haymaker.

"I have been reading your blog, Just Kidneying, and it is hitting me right on time: I just found out this week that I am going to have to go on dialysis and be put on an organ donor list."

Bam.

Pow.

Oh, the pain.

I feel you, brother.

In that instant, it all came flooding back. The fear. The anger. The disbelief. The "WHAT THE HELL! HOW CAN THIS BE?" Almost all of Kübler-Ross's five stages, welling up inside me at the same time. Feelings I thought I had long ago suppressed.

Everything but acceptance.

"I am in the middle of having to make the decision about PD (Peritoneal Dialysis) or Hemo (home or in-center)," he wrote. "I am looking for information, support, prayers, etc. Any direction you could provide would be greatly appreciated. Thanks."

The prayers came instantaneously. The advice was dispatched minutes later.

If you have read this space at all in the past, you know I am a vocal and enthusiastic supporter of PD, the type of dialysis I opted for and applied to myself every day for nearly three years. I believe it's less invasive, gentler to your system, as effective as other dialysis systems and doesn't require you to be on time for in-clinic treatments at least three times every week. (Really, who can do that?)

I passed my insights along to my friend and received a response a few weeks later.

"I am three days away from getting my catheter," he wrote. "Since I first reached out, we decided on PD over hemodialysis."

He listened to me! My wife doesn't even do that!

"I am still not quite sure what to expect, and I wish there was anything, and I mean anything else, I could do not to face this, but I have to go forward. Thanks for your support."

"Have to go forward." I heard that, and I totally get that. I mean, what other choice do you have?

After more than four years with a successful kidney transplant, I often feel far removed from the trenches of the day-to-day renal wars. I recently resigned my position as ESRD (End-Stage Renal Disease) Patient Representative for the State of Illinois and recommended a current dialysis patient, a man I know to be a leader and activist, as my replacement. Kidney patients deserve someone who's on the front lines of their struggle, I figured.

However, the unexpected message from a confused Detroiter in need, who reached out to me for no other reason than that he knew my story, reminded me that I still have value in this area, a role to play as a reference point. I'm no nephrologist or kidney disease researcher, but I have been through the darkness and pain and come out on the other side. I'm reminded of an advertising slogan from many decades past:

"Ask the man who owns one."

Last week I got a call from a dear friend, like me a Detroit expatriate. Doctors have discovered a tumor the size of a football in her midsection. Worse yet, as it grew it apparently pressed against the artery that supplies blood to one of her kidneys, damaging it severely.

After we talked about her condition, she had a battery of questions for me about kidneys and their function.

Who am I, the kidney answer man?

To some people, I guess I am.

Happy to help.

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.

There's No Place Like Home (Dialysis)

I'm in Oak Brook, Ill., tonight, attending a public seminar sponsored by The Renal Network called "On the Road to Home: Home Dialysis Treatment Options." The lime green ribbon attached to my name tag reads "Home Team," which either means that my own home dialysis story is well known since I'm a representative of the Renal Network's Network 10, or that I'm expected to clean up after everyone leaves the Drury Lane banquet room.

The annual event, which coincides with National Kidney Month and includes a free meal, was well attended (Duh!) by dialysis patients, caregivers, medical and equipment representatives and those who simply desired more information about their options after the dreaded diagnosis of kidney failure has been delivered.

The Network offered five key questions a renal patient should ask her or his physician when the subject of dialysis finally arrives:

• What dialysis therapy may offer me the best chance of living a normal life?

• What dialysis treatment would allow me the best chance of survival?

• What treatment would allow me to have better nutritional status?

• What dialysis treatment option would YOU choose if you were faced with kidney disease?

David Rush, aka Young Bo$$, a true crowd pleaser

• How can I learn more about home dialysis?

One great way to learn more is simply to attend sessions like these. The evening's featured speaker was my man David Rush, aka Young Bo$$, a charismatic, very gregarious hip-hop star whose career literally was rescued by home hemodialysis.

Rush encouraged everyone in the quiet, attentive crowd to get on their feet and whoop and holler like Justin Bieber fanatics so he could get a great selfie shot for his Instagram account. But he's deserving of a JK blog post of his very own, and I will devote major space to his remarkable story in the very near future. Promise.

The night featured other first-person testimonials from dialysis patients who wanted to share how much home treatments – be it be traditional or short Home Hemodialysis or Peritoneal Dialysis (PD), my former godsend of choice – resurrected their lives.

One, Cary Bolton, an O'Hare Airport employee who says conventional in-clinic dialysis left him so drained that he would fall asleep at stoplights on the way to work, claims that after he switched to PD he was part of "the H Factor: I'm healthier, I'm happier and I'm a home patient."

Also in attendance was my inspiring fellow Renal Network representative Lana Schmidt, who has done such an effective job of spreading the good news about home hemo in southern Illinois that her story was featured on radio, a newspaper feature and in a TV news segment around her home. You can read the text of her TV debut here.

Sadly, though, this was my first major kidney-related event without my friend Richard Berkowitz, the irascible, devoted champion of the home dialysis movement who died unexpectedly in January. (You can read my JK blog post about him right here.)

Even Young Bo$$ acknowledged his absence, having met Berkowitz at a previous conference. "That's somethin' about Rich, huh?" he asked. I had to agree.

Rich is no longer here, but I felt his presence tonight. I think he'll inhabit every room where home dialysis therapies is the subject of choice for many years to come. I fully expected to see him when I entered the banquet hall, then had to remind myself that I wouldn't.

What an incredible impact he made. Guess home is where his heart was.

Flying the Friendlier Skies

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Rich Berkowitz

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

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

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

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

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

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

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

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

Now It's REALLY an Award-Winning Blog

The FedEx driver scared the boogaloo out of me the other morning, banging on our front door to drop off a package. Now, I'm accustomed to receiving overnight deliveries – usually DVDs to review in my capacity as a television critic – but since I was deep in thought and less than three feet from the door at the moment, I had to swallow hard to get my heart out of my throat and back to its normal location.

Ah, but this particular package was no skinny disk or press kit. It was way too heavy, and felt kinda wooden. To my great surprise, it was a plaque!

It's not every day you receive an award via FedEx (well, maybe you do, but I live a fairly humdrum existence), so I ripped the packaging apart like a 6-year-old on Christmas morning. It was my 2011 Robert Felter Memorial Award from the Renal Network, Inc., which I proudly announced last June in a post titled "This Award-Winning Blog."

The inscription reads the award "Is Proudly Presented to JIM McFARLIN (hey, that's the way it looks!) For Working on Behalf of Kidney Patients."

Aw, shucks.

As I've noted before, I'm certain the award wasn't bestowed solely because of this "Just Kidneying" blog. I've made numerous speaking engagements the past few years on behalf of Peritoneal Dialysis, kidney disease prevention and organ donation, including an appearance before the Michigan Legislature, and visited dialysis clinics to talk to patients one-on-one and lend encouragement. I'm contributing editor for the "Live Now: Rethink Kidney Disease" website, and I've written articles for HOUR Detroit magazine and several other publications concerning Chronic Kidney Disease (CKD).

But virtually none of those things would have happened had it not been for "Just Kidneying," which brought my CKD and my feelings about it to the attention of decision makers, dialysis clinic personnel and convention planners in many places. So, just like at the Oscars, I accept this award on behalf of my blog. I'm extremely honored to receive it.

I didn't expect it to arrive in a plain white FedEx envelope, however. Initially I was told the Robert Felter (I think I'll call it "The Bobby") would be presented in a semi-formal dinner ceremony, most likely somewhere near the Renal Network's regional headquarters in Indianapolis. But the congratulatory letter that accompanied the plaque regretfully informed me "that the organization with whom we were collaborating on the patient meeting was not able to secure the necessary funding. Thus, there was not a Network-sponsored patient meeting."

That's the kind of award ceremony I would get: a package dropped at my doorstep.

Dang. I was actually looking forward to that rubber chicken.

Liquid Courage, or The Rinse Cycle

Last month we celebrated the life and legacy of that immortal American and civil rights icon Dr. Martin Luther King Jr. by purchasing a gleaming white new Speed Queen washer and dryer at a local appliance store in Champaign. Gotta love those MLK Day sales!

Because I have taken on the role of househusband during my two years of dialysis treatments and subsequent kidney transplant, Karen's excitement over our new acquisition made me feel a little like a character out of The Help: "Look, Jimmy, we bought you a brand-new washer and dryer so you can do more loads of wash for us than ev-ah!"

Oh, joy.

Truth to tell, I love doing laundry. There's a certain zen tranquility for me in making dirty things clean again and folding them with the precision of origami. What I didn't love even a tiny bit was schlepping pounds of clothes to the laundromat every couple of weeks, hoarding quarters and surrounded by strange smelly people.

But the laundromat was a necessity, because (and here's the tie-in to my kidneys, in case you were wondering) up until the transplant, we had to use the utility room in our apartment to hold all the cases of my dialysis solution.

In the way that life works, two days before we received "the call" that a donor kidney was available for me, the company that made my dialysis supplies dropped off its monthly shipment of 32 boxes of Peritoneal Dialysis fluid, about 2x2 feet each, with two five-liter bags of liquid in each box. I had used exactly one case before the transplant team called.

When we returned from Barnes-Jewish Hospital in St. Louis with my gleaming new kidney, we called the dialysis company and explained the situation.

"I'm sorry, sir, but we can't take the cases back."

"But they're unopened. Maybe someone else could use them."

"I'm sorry, but there's the possibility of contamination."

"Contamination? The boxes have the original factory tape on them! The bags of fluid are sealed in a second plastic bag to keep them secure! How on earth could they get contaminated?"

I'm sorry, sir, but that's our policy."

Somebody please, tell me again why the cost of health care in America is so high?

We called my dialysis nurses at DaVita Champaign. Same story. I never fashioned myself as the sadistic poisoner of Peritoneal Dialysis bags, but I must look that way to a sizable group of people. We're still looking for takers for the drainage bags, extension tubes and other paraphernalia that accompany the PD process. No questions asked. Just come get 'em! We'll even deliver!

So, discouraged by having no other option, Karen and I staged our own Seven Percent Solution at our kitchen sink: the Great Dialysis Juice Dump. Each of us armed with a tiny Olfa Touch-Knife (that I extolled in a December 2010 blog titled "Flashes From the Frontline"), we attacked the cases – slicing open the cardboard boxes, flattening them, cutting open the hard plastic coverings and piercing each five-liter bag, letting the dialysis liquid goosh into the sink. What emotional release!

It was a true team effort; even with both of us working shoulder-to-shoulder and focused on the task, the process took almost two hours to complete.

We ended up with a stack of cardboard boxes nearly three feet high and an overflowing pile of plastic bags. Being the dedicated recycler I am, I personally carried every box and bag outside to the nearest appropriate bin.

Karen applauded my effort.

We were both tremendously saddened to destroy so much lifesaving fluid in such a wasteful manner. However, in a very real way, our new washer and dryer represent far more than timesaving appliances that allow Jimmy to do more loads more often. They stand as constant reminders that the Peritoneal Dialysis that required their space and dominated so much of our daily lives is no more. Hallelujah!

All because of a new appliance of mine that's washing my blood every second. Oh, what a lucky man am I.

The Edge of Darkness

Although it has diminished greatly, I remain in constant abdominal pain as I write this. I just ache. Every now and then, as my severed nerve endings begin to heal, I get eye-watering stabs along my incision line.

For now, most of the area surrounding my hip-to-hip incision is numb. People who've endured similar surgeries tell me full feeling may not come back for years. If ever.

My supply of the really, really incredible prescription painkiller, Percocet, is dwindling rapidly; I cherish every remaining pill like it could pay off the national debt.

My renal doctors in St. Louis have scheduled me for an ultrasound here in Champaign today to rule out the possibility of a blood clot in my new little kidney. Great. A few days later, my PD catheter, now a useless appendage hanging out of my side, will be removed in an outpatient procedure. More pain. More recovery.

My blood pressure, which had been kept artificially low at around 110/70 by medication prior to my Nov. 18 kidney transplant, is now soaring wildly out of control again, Today it was 165/90. The new cocktail of hypertension medicine I've been prescribed has yet to take effect.

Since it was high blood pressure that got me into this mess in the first place, I'm more than a bit frantic over it all. My current health care team doesn't seem to share my sense of dire urgency about the matter. The thought of surging blood relentlessly pounding my delicate, undefiled six-year-old kidney makes me angry and quite sad.

I'm taking more than 40 pills a day, or four times as many as I did on Peritoneal Dialysis (PD). I have become a pharmaceutical stockboy, constantly checking supplies on hand, making frequent restocking visits to my local pharmacy and calling St. Louis for transplant-specific drugs to be delivered by mail. The medications control my day. Half the drugs must be taken with food, the transplant drugs specifically on an empty stomach. I feel like the guy on that antacid commercial: "Eat now, pill now? Pill now, eat later? Wait to eat, pill now? Wait two hours, now eat?"

Until next March, my blood must be drawn every Monday to ensure certain levels are decreasing or maintaining on schedule. For as long as I have a transplant, my blood will be drawn for lab tests on a regular basis.

Did I mention that I can't stand needles?

I don't mean to sound whiny, and if I do, forgive me. I was told before the surgery that depression is frequently a natural post-op emotion, and I may be going through a touch of that right now. I know that ultimately, the pain will end, the medication regimen will become routine, my blood pressure will plunge. But I can't shake the feeling that in many ways, I was better off on dialysis. At least, I felt better. At the very least, I wasn't in pain all the time.

When I was on PD, I didn't worry about much. The daily routine just kind of rolled along, and I pretty much knew exactly what to expect. Now I find I'm constantly worrying about something – organ rejection, my lowered immune system and possible infection (my wife has a cold! Oh, NO!), taking my pills on time, the possibility of a blood clot.

On a conscious level, I know this is a transition period and if I remain patient, much of this will pass. But if having kidney failure has taught me anything, it's that you have to live in the now, that a healthy tomorrow isn't promised to any of us.

Well, I'm in the now. And now sucks.

A Time of Thanksgiving

Now, let's see: What's different in my life today from one week ago?

• I have a third working, perky little kidney inside of me. Contrary to what most people think, nothing is typically removed from one's body when you have a kidney transplant. Surgeons simply add the donor kidney to the two you already have, and eventually (just like in business) the new guy gains strength and starts taking over. More accurately, the procedure should be called a kidney implant.

• The proverbial racehorse has got nothing on me. I am turning urination into an art form. As kidneys fail, often they lose the ability to manufacture the urine that flushes waste products from your body; in fact, doctors tell me one way they check to see that a new kidney is functioning properly is how quickly it begins to produce urine on its own. Well, since I never stopped peeing regularly, it's like my bladder has become turbocharged. I'm going at least once an hour; I feel like I'm constantly either thinking about going, going, coming back from going or trying not to go on myself. This eventually will taper off, but right now the new member of the body is obviously just showing off. Whiz kid.

• I have two tubes sticking out of my body instead of one. In addition to "YouTube," my PD dialysis catheter and constant companion the last two years, I also now have what's called a Jackson-Pratt, or "JP" catheter, to pull the excess drainage from my incision into a bulb pinned to my clothing to speed the healing process. Eventually both catheters will be removed from my midsection, but the "JP" won't get yanked until its daily fluid output is less than 0.5 percent. Right now it's at 4.0. Grrrr.

• I am now diabetic. At least, temporarily. Because the steroids used during the transplant played hanky-panky with my blood sugar levels, I now have what is called "steroid induced diabetes." I received my own blood glucose monitor, test strips and instruction session at Barnes-Jewish Hospital in St. Louis, and until my levels drop and stabilize I have to test myself in the morning, nighttime and before every meal, just like my wife, Karen, who suffers from the more permanent brand of diabetes. Oh, we're just poking ourselves now all over the house! You know, the family that pricks together, sticks together.

• I am in considerable pain, although amazingly far less than I anticipated. I think I may have written in a previous post that surgeons say the transplant operation generally consists of a small, hardly noticeable incision on the right side of the abdomen where the new kidney is neatly tucked in. They lie. They cut me like I was being dressed for the butcher's window, including a hip-to-hip slice beneath my waistline that's being held together with staples. I couldn't help but mention this discrepancy to my transplant surgeon, Dr. Jason Wellen, the surgical director of kidney transplantation at Barnes-Jewish – or, as one of my pre-op nurses described him, "Our golden boy of kidneys." "Hey, you're a big fellow," Dr. Wellen explained. "We had to go deep to make sure those blood vessels were tied off properly." I knew there'd come a day I'd regret being this tall.

• My daily pill regimen has increased to more than 30, almost twice as many as when I was on Peritoneal Dialysis. It's necessitated a slight change in my pillbox carrying case: old one on the left, new one on the right.

The majority are new drugs for anti-rejection or to suppress my immune system, which I will have to take for the life of my transplant. (Hopefully, the rest of my life.) But there currently are also some really outstanding pain medications, and I can completely understand how someone undergoing major surgery could get hooked on pain pills and not want to stop taking them. They make the pain just faaade awaaayyy...zzzzzz.


• I have an even deeper admiration and adoration, if that's possible, for my incomparable wife, Karen, who will put her life and career on hold for the next several weeks to take an extended FMLA leave so that she can care for my needs. I can't drive for at least two weeks, so she will be ferrying me to my followup appointments in St. Louis and in Champaign, along with doing all the cooking and the housework I usually take upon myself. And all with a smile on her lips and a song of compassion in her heart. (At least, for now!) How lucky can one guy be? I am so looking forward to hanging out with my best friend every day in these days to come and just enjoying each other's company as my health and strength continue to improve.

• Thankfulness. I don't think I've ever been more humble, thankful or appreciative than I am this holiday season. When you hear phrases like "golden boy" and "you got a dream kidney," you begin to realize that everything fell into place through the power and grace of God. All the prayers, all the friends, all the health care professionals, the surgical team: I could be saying "thank you so much" for the rest of my life.

So I'd better start now. To all of you: Thank you so much. Happy Thanksgiving.

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.

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.

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?

P.S.: 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.

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.

Flashes From the Frontline

The Wife says I write these blog entries way too long. They're not even blog posts anymore, she claims; they've become "blarticles," a term I hope she copyrights before it becomes all the rage in cyberland.

"They don't all have to be complete, touching essays," Karen says. "Some of them can be just paragraphs." You think she'd know me by now, wouldn't you? I gots a lot to say! And, unlike writing for other publications and their editors, here no one can tell me when to stop! Whoo-HOO!

Still, I believe Karen may have a point, possibly. Maybe. A little. So today I'm going to briefly (I hope) mention a few topics I think are worth sharing with you in bullet-point fashion.

• Happy(?) Anniversary: December marks one year since I started on PD, Peritoneal Dialysis. So far, I'm feeling fine. Hallelujah!

• It's Alive! Alive!: Baxter Healthcare, the Illinois-based colossus that manufactures and supplies my dialysis materials, has just launched a new consumer Web site called Live Now: Rethink Kidney Disease. According to its home page, Live Now is "a movement to start living on your terms, with hope, optimism and strength. Kidney disease doesn't define your life – you do. It's time to get up, get out and live for today."

I am proud to say I was asked to serve as a contributing editor on this breakthrough project. The marketing folks at Baxter knew I was a professional writer (in the sense I can actually find people willing to pay me money to write stuff) and that I travel quite a bit for work while maintaining my Peritoneal Dialysis (PD) routine on the road, so they recruited me to create the main articles for the site.

I wrote pieces on traveling with PD, working full-time while on PD and (heh, heh) maintaining intimacy while on PD. (I consulted with Karen for the last one. Thankfully, she agreed it was possible!) The theme of the articles, and the site itself, is, "Yes! Yes! Whatever you did before you contracted kidney disease you still can do while on dialysis!"

The funny part was, when I got the assignment I approached it very seriously. I did my research, compared other articles on the subjects and wrote my first drafts in a very straightforward, scholarly manner. I'd forgotten that the people at Baxter read this blog, too. "There's something wrong with this," they said upon receiving the first draft. "It's not...funny enough! It needs more Jim in it! Are you all right?"

"You mean, you want it goofier?" I asked, incredulous.

"YES! We want you to write it like you write Just Kidneying!"

And so I did. Or tried to, anyway. You can be the judge. I thought about reprinting the articles here, but I'm sure my new clients at Baxter would rather I send you to their site. It's www.livenow.info.

I'm on Board With This: The miracle of the Just Kidneying blog continues. I have been asked to volunteer to sit on PACt, the Patient Advisory Committee for Baxter Healthcare. (I have no idea what the little "t" stands for.)

That sentence construction is correct: "asked to volunteer." Apparently, the way it works is, Baxter can't reach out and solicit people to join their advisory group. Looks a bit suspicious, like they're stacking the deck in their favor. But if you express some interest and tell Baxter, "Hey, I've got some opinions (I am a critic, after all), and I want to join your board!" then they can extend an invitation to become a member.

As I understand it, representatives from the R&D (research and development) and marketing departments will give presentations on their newest endeavors, and we get to provide input about how far off base they are. As a living, breathing dialysis patient, I hope to provide some real-life insights about how practical their innovations really are. The next meeting is in March 2011.

If you're a dialysis patient (or even if you're not) and would like to add your voice, shoot me a message; I will try to let you know what the bigdomes at Baxter are thinking and solicit your feedback. Think of me as your union rep!

In Praise of the Olfa Touch-Knife: Several months before I started PD, Karen and I were shopping at a Michigan outlet mall and on a whim we bought two Olfa Touch-Knives at the checkout table. They are marvelous little devices, about an inch-and-a-half wide with a retractable blade as sharp as an editor's pen.

                      
They also provide the only real enjoyment I derive from this tedious dialysis process – slicing open the drainage bags after a fluid transfer and watching the liquid gush into the sink or toilet like a waterfall. It's exhilarating!

Sadly, during one of our recent road trips, I lost one of our knives. Crap! I went on the Olfa Web site, but they want you to buy like 100 or more to get an online discount. I only want one or two. So if you spot an Olfa Touch-Knife at any checkout counter or housewares store in the near future, buy a couple for me or let me know where you found them.

Cut me in, so to speak.

The Toughest Decision

I was in the middle of a deliciously hot shower not long ago, singing lustily to some bygone '80s hit (probably by The GAP Band), when my mother-in-law came into the bathroom and thrust her cell phone behind the curtain.

She dropped a bomb on me, baby.

"You MUST take this phone call!" she announced.

"Uh, I'm kinda wet, soapy and naked at the moment," I replied. "This can't wait five minutes for me to dry off?"

"NO!" Mother-in-Law declared. "You have to take it RIGHT NOW!"

I understood the reason for her urgency moments after I took the receiver. My wife, Karen, was on the other end. The transplant office at Barnes-Jewish Hospital in St. Louis, where my kidney case is located, called her when they couldn't find me. And how could they? I was singing in the shower!

The hospital had located a replacement kidney for me.

My eyes began stinging, and not because soap was dripping into them. Apparently, a gentleman from Detroit whom I had never met (and whose name won't be repeated here out of respect to his family), upon learning of his terminal illness, designated in his will that I was to receive one of his kidneys.

I've wracked my brain ever since trying to recall any part of my past where his name might be familiar, but come up empty. I can only assume he may have read my medical confessional in HOUR Detroit magazine a year or so ago, or somehow became aware of this blog. However it happened, the thought that a complete stranger personally chose me to receive a life-giving organ upon his death is beyond humbling. It's overwhelming. Praise God.

Since Karen was still in her office, she set up a three-way conference call between her, the transplant coordinator and me. The coordinator explained that the kidney being donated to me fell under what they call the "extended criteria" category. It was a match, but the donor was eight years older, suffered from hypertension (high blood pressure) and had a history of smoking in his past.

"Geez," I thought, "this sounds like my own kidneys, only with more mileage."

If I wanted the kidney, they would start to make arrangements for the transplant operation straightaway. If I decided not to take it, there would be no harm, no foul for me because of the condition of the organ; I would simply be placed back on the transplant waiting list. Whatever I decided, I had to give my answer immediately, if not sooner. The kidney was being harvested, and if I didn't want it, someone else could benefit from the transplant.

I asked the coordinator if we could have a little time to make our decision, and she agreed. (And it is our decision, by the way; the entire family lives with kidney disease, suffers through a transplant operation and assists in the recovery. Everybody gets a vote in this election.) Take as long as you like, she said. You can have a couple of hours.

I thought I had agonized over other major decisions in my life, but they were easy-peasy-lemon-squeezy compared to this. I tried to contact my kidney specialist, Dr. Attia, for a second opinion but couldn't reach him. Karen and I talked intensely, and my mother-in-law had a few more words of wisdom for me once I was out of the shower.

We prayed. We discussed. We debated. Then we prayed and discussed and debated some more. Ultimately, the verdict would be mine.

Two dizzying hours later, I had made up my mind. My decision might have been different if I was in worse condition, or if I wasn't coping so well on Peritoneal Dialysis. But somebody else might need that kidney more desperately right now, and I could afford to wait for a younger, healthier, more ideal organ to come along.

I called the transplant coordinator back and politely said thanks, but no thanks.

It was a gut-wrenching call to make. I felt as if I was slapping a dead man in the face, spitting on his final wishes. Think about his family, Karen offered. They've probably gone through so much already with his illness and death, and rejecting his kidney is almost like you're rejecting him, and the rest of them as well.

Thanks, honey. That helps a lot.

For what it was worth, at my next scheduled appointment with Dr. Attia we discussed my decision at great length. He agreed with my thought process. If some surgeon is going to cut you open and stick a foreign object inside you, he said, do it once, do it right, and do it with the best organ you can find.

Which doesn't mean I don't think about that man I never met and his amazingly selfless offer every day. Did I insult his memory? Did I make the right choice? Who can say for sure?

And what if that perfect kidney never comes along?

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.

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.

'Cathy' Was Too Easy

Funny thing about a dialysis catheter: Once you get used to it, grow accustomed to the sight of a plastic tube sticking out of your belly like a garden snake and the ritual of taping it against your body every day, having one becomes second nature.

It's like having a sidekick. Or better yet, a secret weapon. Once a day I unleash it from its hidden location, attach it to a source of power and rejuvenation (in this case, the peritoneal dialysis solution), open the valve and let the healing waters surge through my body. I suppose I should shout something dramatic when the connection takes place, like Billy Batson yelling "Shazam!" when he transformed into Captain Marvel. I can hear it now: "Time... to...DIALYZE!"

So one night at the dinner table, the girls, Emma and Madison, suggest we give it a name. (How do these mealtime conversations start, anyway?) We do some preliminary brainstorming. "Cathy the Catheter" was quickly rejected: too easy, and I didn't think my wife, Karen, would appreciate the name of another woman literally attached to me.

We tried variations of "Man Cub," Karen's pet name for me. (Long story.) Nothing clicked. Maybe some species of snake? I was partial to "Black Mamba" myself, but was fearful of being mistaken for Kobe Bryant.

Several other proposals failed to produce that "Aha!" moment, so I took the request to the people. That is, the 500 or so people who are brave enough to admit to being my friends on my Facebook page.

I received more than a dozen excellent name suggestions – many of which I cannot repeat here in polite company – but one stood out from the rest. Because of my many years as a television critic (a function I still perform for The Metro Times in Detroit; you can read a column here), and because a catheter is such a personal, individual device, it was voted that its name should be:

YouTube.

So YouTube it will be, now and henceforth. I'm expecting a call from the attorneys any day now. I guess you could call it "cath-arsis."

Or not.

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.

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!

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.