Showing posts with label kidney failure. Show all posts
Showing posts with label kidney failure. Show all posts

Thursday, November 5, 2020

Can Kidneys Create Comedy? I'm Trying to 'B Positive'

 Hey, this is a joke, right?

Annaleigh Ashford and Thomas Middleditch (CBS)
I know CBS, comedy superproducer Chuck Lorre – and I – sure hope so. Many jokes, in fact.

My ears did a double-take when I first heard it: among the shining lights of the network's COVID-compromised 2020 fall TV season, the first new sitcom to arrive in the vaunted CBS prime-time lineup, is a show about kidney failure and organ donation.

Sounds like a laugh riot, huh?

B Positive, starring Thomas Middleditch and Annaleigh Ashford, premieres at 8:30/7:30 Central Thursday, Nov. 5, comfortably nestled between two of Lorre's greatest hits, the return of Young Sheldon at 8 and the eighth-season return of Mom – sans Anna Faris – at 9. Sort of a Lorre Lane, if you will. Few comedies could have a more secure launch pad.

As a kidney donor recipient myself (nine years and going strong, thanks), advocate for organ donation and former renal patient representative for the State of Illinois, I was eager, if a bit apprehensive, to see B Positive. I tracked down the CBS media representative for the series in Los Angeles – I'm the former TV critic for The Detroit News and Detroit Metro Times, among other publications – and asked to review the pilot episode. It isn't available, I was told three times, and who do you write for again?

However, as I go online now and see the pilot reviewed by heavy hitters like The Washington Post and The Wall Street Journal, I see the show was available...just not for me. But I am undaunted! I guess what CBS and most other networks may not realize is, in their fervor to promote new shows by offering online "sneak peeks" and promotional clips, you can nearly watch an entire pilot episode in bits and pieces. 

Which I did. So there, CBS media lady.

Now, B Positive has some, well, positives going for it. Lorre is the sitcom Midas of his era, and anybody who can mine years of laughter out of fat people in love (Mike & Molly), alcoholics in recovery (Mom) and a pack of insufferable genius nerds (The Big Bang Theory) has to be given benefit of the doubt with this delicate subject matter. 

Marco Pennette, the creator and executive producer, Lorre's creative teammate and writer of the first episode, received a successful kidney transplant himself in 2013 so he's got first-hand memories. And Middleditch, fresh off six seasons and an Emmy nomination for the HBO series Silicon Valley, was said to be the hottest property in Hollywood this pilot season.

He stars as Drew, a slightly neurotic therapist and recently divorced dad who gets the news no one wants to hear: his kidneys are headed on a permanent vacation and he'll need a transplant, fast. "Start with family," his doctor advises. "They're usually the best match."

"Oh, great," Drew moans. "A Republican kidney."

Instead, he has a chance reunion with Gina, a former high school classmate played by Ashford, a Tony Award winner on Broadway whom you may remember from Showtime's Masters of Sex. Gina is a boozy, flighty, mildly annoying party girl – she remembers Drew as "the one guy I didn't hook up with in high school" – who offers him one of her kidneys almost on a whim. However, she's got to remain clean and sober for at least three months to donate, and that's one portal where the laughs pour in.
Transplant Pals. (by Pamela Littky, Warner Bros.)

Drew and Gina have kind of an oddball but engaging chemistry, not unlike any two characters on Big Bang, and if you pay close attention you will see a lot of old favorites on B Positive. The delightful Sara Rue (Popular, frequent Big Bang guest) is Drew's ex-wife, and look for the immortal Linda Lavin – yes, that Linda Lavin, Alice herself – as one of the seniors on the minibus Gina drives for a living.

Is B Positive funny? I laughed some, especially at a surprisingly broad slapstick scene on Gina's minibus, but laughter is the aural equivalent of beauty: in the ear of the behearer. Here's what I'm concerned about:

How long can they let Drew suffer and deteriorate before his transplant? A full season, or longer? As anyone on dialysis can tell you, the waiting is the hardest part.

Will they let the audience know that organ donation is not a frivolous, spur-of-the-moment decision, but one that should be carefully considered and discussed with family, friends and doctors? Giving up a body part, even for the best of reasons, is serious stuff.

Will they stress that Drew and Gina need to prepare themselves, both physically and emotionally, for the transplant and that it is major surgery?

Will someone let Gina know that some nephrologists (kidney specialists) advise against young women of child-bearing age donating a kidney because it may lead to higher risk of gestational hypertension and preeclampsia?

Maybe I'm overreacting. Perhaps I'm too close to the subject matter and need to let go and trust fellow kidney recipient Pennette will do the right thing. However, to my knowledge this is the first sitcom ever to deal with kidney donation and transplantation, and there may be a reason for that. 

Hey, if the show increases the conversation about organ donation and gets more people considering the option, that can't be bad. In terms of the show itself, however, for now B Positive deserves no more than a B-minus.

Thursday, September 24, 2015

Seeking a Measure of Katharsis at the Kidney Konvention


For the first time in at least two years, I am attending a convention related to kidneys and renal health. This weekend I'm off to Nashville for the 41st national meeting of the independent advocacy group AAKP, the American Association of Kidney Patients.

In one sense, this is serendipity. My sister-in-law and her husband live in Music City and their youngest daughter, Eleanor, turns six this week. So when I received the invitation to attend this year's AAKP and noticed the dates, my wife, Karen, and I decided to make it a family excursion. While I'm in a crowded, airless hotel ballroom soaking up such sessions as "Summit on Public Policy" and "The Kidney Disease Self-Management Toolbox," Karen will be frolicking with her sister, the birthday niece and two other kids.

(I am certain Eleanor will not miss me. She hasn't spoken to me since she was three. As the only person in her immediate family of a different color, I may come across to her like the Boogeyman.)

In a much larger sense, however, this convention represents a personal renewal and rededication for me.

Over the past several months I feel like I've lost something – call it passion, commitment, enthusiasm, whatever you choose – for the kidney cause.

I am still the ESRD (End-Stage Renal Disease) patient representative for the State of Illinois, and I am still honored to hold the position. But it's a largely ceremonial post, mandated by state charter. The veteran nephrologists (kidney specialists) and nurse managers who dominate the committee generally welcome my comments with all the enthusiasm of a sick patient trying to diagnose his own illness. They would much rather I was seen and not heard. For that matter, I'm not so sure they're that wild about me being seen, either.

I continue to sit on several national and regional renal boards, but I find I'm not as devoted to the affiliations as I once was. Where once I used to build my week's schedule around trips to board meetings and webinar sessions, now it's largely the other way around. If a meeting happens to fall easily within my other responsibilities and I can make it, I'm there. If not....

And even though I hold the titular title of secretary for my local ESRD support group, I cannot tell you the last time I made a meeting. They are always held on the first Tuesday of the month, but it seems lately I've been on the road for business, or tied up with a church commitment, or otherwise engaged. Sometimes, quite honestly, I've just forgotten. That never used to happen.

Do I have a theory as to why my fervor has faded? Have we met? Of course I do!

I really think it has a lot to do with the present condition of my health – which, at the moment, is superb. After a few years on daily dialysis, overcoming the fear and pain of a kidney transplant and a few more years living with the new reality of 30-plus pills a day and constant blood and body monitoring, today I'm doing great.

At my last annual checkup (which once was my monthly checkup), the chief of transplant surgery for Barnes-Jewish Hospital in St. Louis, the site of my operation, used the word "unbelievable" to describe my condition. My standing blood tests have been reduced from bi-monthly to once a month. My creatinine (cree-AT-tin-een) level, an indicator of kidney function that typically falls between 0.6 to 1.3 for normal healthy people, is at 0.9. My beloved little Cheyenne, who moved into my body in 2011 as a long-term tenant, is just showing out.
At my first AAKP convention, in Little Rock, I met inspirations like Brad Mayfield.
So while I remain compassionate about the plight and the journey of my fellow renal patients – particularly my friend and true believer Lana Schmidt, who IMHO is getting screwed by the medical community through a recently-enacted policy in the transplant system that really pisses me off (more about that at another time) – I think it's a natural reaction to drift away from the pack emotionally when your station in life improves. I'm OK, I Hope You're OK, Too. It's human nature. That's why we're not all Gandhi or Mother Teresa.

However, I think with the passage of time, many people get the desire to reach back and lend a helping hand to others who face the same challenges they have overcome. I have encountered so many folks who served to inspire me, like my friend Brad Mayfield whom I met at my first AAKP convention in Little Rock back in 2011. I talked to people who'd been on dialysis 10, 15, 20 years, some who were fearful of receiving a transplant, others whose condition prevented it. I still remember how thrilled I was over the prospect of spending time in Arkansas (I wrote about it here), but the experience ended up being just what I needed, just when I needed it most.

I think I'm ready to jump back into the kidney caravan again, to rededicate myself to the effort. This weekend will be the test. More than 26 million Americans have some form of kidney disease, over 101,000 of them are on the waiting list for a transplant. And while they won't all be at the AAKP convention, if I can make a small difference in one person's experience, if I can be the example or inspiration for anybody, then this weekend in the shadow of Opryland will be well worth the trip. (Eleanor birthday celebration notwithstanding.)

It's a simple shift in perspective: I'm OK, I Want You to be OK, Too.

Thursday, July 30, 2015

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.

Tuesday, March 19, 2013

I'm Really in the Soup Now

Breaking into a new market, in a different state, is never an easy task. And although I've lived outside Chicago for nearly four years now, I will always be a Michiganian by birth and a Detroiter by heart.

As of this writing, however, I truly feel like I've been accepted in my home surroundings. In honor of National Kidney Month in March, I was invited to share my personal kidney khronicle in the March 13 edition of the Bean Soup Times, a beacon of information for Chicago's African American community for more than a decade!

My sincere thanks to Mr. Toure Muhammad, Bean Soup Times creator and publisher (not to mention comedian, broadcaster, communicator and PR professional), for his interest and allowing me to share his media platform. (Being described as an "Award-Winning Writer" in the headline doesn't hurt the old ego too much, either!)

As I mention in the article you're about to read, African Americans are experiencing end-stage renal disease (ESRD), or kidney failure in all its evil forms, at a rate three times higher than the rest of the U.S. population. So knowledge and awareness are especially crucial for black folks. If my story helps anyone reading it to take precautions – even just to monitor their blood pressure and keep it under control – I'm honored.

Here's the link to the Bean Soup post: http://bit.ly/WEexln. The words in red are links to previous Just Kidneying blog entries to give their readers (and you) some deeper background into the journey.

Happy reading. Remember to caress your kidneys.

Tuesday, January 1, 2013

New Year, New Life

It's been all the talk around where I live. Or maybe because people know about my medical situation, they've been racing up to tell me about it.

Shortly before Christmas, a man strolled into a suburban Chicago hospital and announced that he wanted to donate one of his kidneys. Not to anyone in particular, he explained; he just felt compelled to give a special Christmas "gift of life" to somebody.

After running the customary battery of tests (physical, not psychological), it was determined that his kidneys were a match for a 60-year-old wife, mother and grandmother from Burbank, Ill., who had been on dialysis for six years while waiting for a transplant donor.

Six years.

Six years of energy- and body-sapping dialysis, every week after exhausting week. Six years of waiting for a matching organ, hoping for the phone to ring with "the call," praying for deliverance. A six-year sentence, six years of a life not being fully lived.

What an indescribably amazing present.

Now, I'm not suggesting that you run out and do the same (Lord knows I can't), but you may be surprised to know that this type of altruism is not as unusual as you might think. According to UNOS (the United Network for Organ Sharing), more than 6,000 living, breathing people donate an organ for transplantation every year, and one out of four of them have no biological connection to the recipient.

Still, to just walk into a hospital and volunteer to give up a part of your body....

The woman in Burbank referred to her donor as "my angel," and she's probably not far from wrong. What a phenomenal way for her – for both of them, actually – to ring in the New Year!

So let me end this meditation the way I end many of my speaking engagements: Please consider organ donation. Just consider it. As of this writing more than 74,000 people are on the active national waiting list for an organ transplant, and hundreds die every year still waiting.

Make the notation on your driver's license. Let your family and friends know of your intentions. Once you're gone, you won't need them. Honest. Trust me. The Walking Dead is just a TV series. It's not real.

And as for donating an organ while you're still living, hey – as gifts go, it beats the heck out of a Kindle.

Friday, November 16, 2012

Fat Man and Little Cheyenne

Cheyenne was feeling a bit grouchy not long ago. Nothing severe or particularly disabling, you understand – a twinge here, a dull ache there – but any time your live-in kidney shows the slightest signs of discontent, you tend to sit up and take notice.

She hasn't been inside me for a whole year yet! It's not even time to renew her lease!

Having someone else's organ sewn into your body, it seems to me, is like entertaining a long-term house guest: You want her to be happy and content in her surroundings, and if she is you almost tend to forget she's there. She becomes part of the family. But if you sense she's grumpy or suddenly not enjoying her stay, you rush to address her concerns. And so it was that I called to request an ASAP appointment with my very favorite nephrologist, the caring, grinning Egyptian, Dr. Attia.

A week or so later I was sitting in the lobby of the Carle Hospital wing in downtown Champaign where he practices. After having my weight and other vitals confirmed, I waited mere moments before Attia burst into the examination suite, an Omar Sharif lookalike, his perpetual smile beaming. "Jimmy, how are we doing?" he asked.

We sat side by side in front of the room's computer and reviewed my key statistics: blood pressure, protein, creatinine level, cholesterol. I don't ever remember hearing a physician using the word "perfect" to describe my body or health before, but Attia's glowing praise sent my heart into a happy dance. I take the care and comfort of Cheyenne very seriously, and I was delighted to see that my efforts were paying dividends.

"But Doc," I countered, "if all that's true, why do I keep getting these occasional twitches around the transplant site, and the feeling like something is pressing on the kidney?"

At that point he explained something I'd never thought about before, but that makes complete sense: Surgeons cannot reconnect nerve endings when they transplant an organ. It would be impossible to do so, even if they could keep you in the operating room for a month or two. So Cheyenne literally feels no pain.

Attia then looked at me, flashed a knowing smile and returned my attention to the computer screen. He pointed to a line of numbers on my chart that he had neglected to mention previously.

It was labeled, "Weight."

He said, "From the time of your transplant last November, you have gained 16 pounds! What you're feeling may be your increased weight pushing against the kidney."

In other words (he didn't actually say this, but he might as well have), "If you weren't so FAT, Mr. Piggy-Wiggy, maybe you wouldn't be feeling anything at all! Your poor little kidney needs room to operate, Chubbins! Just because a transplant allows you to greatly expand your food choices doesn't mean you have to eat everything in sight!"

Oh.

As it so happens, my amazing and admirable bride, Karen, recently embarked on a medically-supervised weight loss program called Ideal Protein. I don't think she would mind my telling you that she has lost more than 30 pounds in less than two months! I am so very proud of her.

I'm not saying I plan to lose weight by osmosis, just by being in her presence. But we have been eating much smaller, healthier portions around the house lately, and if I can avoid sneaking off to Steak 'n Shake when she's at work I may drop some poundage in spite of myself.

Hang on, Cheyenne! The cavalry's on the way! Breathe, girl, breathe!


Monday, January 2, 2012

Direct to Video

I'm certain that some of you have seen this, but I'm just as sure that many of you have not, and it really should be added to the JK – Just Kidneying archives for posterity's sake if nothing else.

On the morning of Friday, Nov. 18, 2011 – a date that will live in happy history for me as the date of my kidney transplant – I was lying on a gurney in a pre-op area of Barnes-Jewish Hospital in St. Louis, flying high on that happy juice they pump into you to "relax" you prior to surgery, when my artificial bliss was interrupted by a complete stranger. 

Unbeknownst to me, the Just Kidneying blog had become very popular in certain sections of Barnes-Jewish, including the hospital's public relations department. My unknown visitor was a PR person for the hospital who had heard I was in the complex for my operation and wanted to interview me for the Barnes-Jewish transplantation blog, "The Rare Gift"

Now? Right this very second? 

Karen, who was interviewed for the video clip as well, had spent the night before with me in this cramped room, losing sleep with nervous anticipation, and like me had not enjoyed the benefit of hot water, deodorant or a mirror. At that moment, I gained an inkling of how celebrities must feel when they are asked for autographs or photos at the most inconvenient times. 

But I have become such an advocate for transplantation, the Barnes-Jewish team and organ donation, I hardly could refuse such a request. 

This was the result:


Needless to say, I think I've been better! 

But as you know, all's well that ends well, and given how the surgery turned out it's been a long time since I've been any better than this.

Postscript: As we begin 2012 together, this post marks my 100th blog entry since I began Just Kidneying in September 2009. Pretty amazing for someone who never had any intention of ever writing a blog. As Bartles & Jaymes (remember them?) used to say on those wine-cooler TV commercials, "Thank you for your continued support."

Thursday, November 24, 2011

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.

Monday, October 31, 2011

Tat's My Wife

WARNING: This blog entry may make tears flow from your eyes, clog your nose with mucus, and leave you honking and weeping like a blubbering idiot. At least, it did for me. You may be different. Just in case, you may wish to read this in a dark room by yourself. 


You would really like my wife, Karen. Practically everyone who knows her does. She is genuinely one of the sweetest people I have ever met, not to mention kind, funny, smart, spiritual and practical. Real pretty, too. It's as if God grabbed a golden ray of sunshine and placed it in her soul.

                                                                             This is Karen.

She is a mature, responsible woman who is just slightly older than 21, a longtime executive at the University of Illinois. Which is why her recent declaration shocked the pu-pu platter out of me.

"I want to get a tattoo," she announced.

"I beg your pardon," I replied, certain she must have said something about Hervé Villechaize on Fantasy Island.


"I'm going to get a tattoo." She went on to explain that she'd secretly always wanted one and decided the time had come today.

"But what kind of design do you have in mind?" asked I.

You may remember back in June when I was in Barnes-Jewish Hospital in St. Louis and minutes away from receiving a kidney transplant but got false-alarmed instead? (If you don't, and want to experience that heartwarming feeling for yourself, you can read the blog entry here.) At that time, our 11-year-old, Madison (who now, thanks to adoption, is also my sister-in-law), took it upon herself to create a work of art to brighten my hospital room, complete with an appropriate Bible verse:


The verse is Psalm 73:26. It reads, "My health may fail, and my spirit may grow weak, but God remains the strength of my heart. He is mine forever."

We all were moved by Maddie's gesture, but apparently no one was more affected than Karen.

"I want that Bible verse on my wrist," Karen said, "with a drawing of a small kidney above it."

"The whole verse?" I asked, incredulous.

"No, silly. Just the book and the chapter."

"Wow," I replied. "Maddie's drawing meant that much to you?"

Karen's eyes glistened, with that look that says, "You don't get it, do you?"

"I've always wanted a tattoo," she said softly. "There's just never been anything in my life so important to me that I wanted it on my body permanently."

Aw, shucks.

After a bit of research, Karen decided to have the deed performed at the 217 Tattoo Co. next to the U of I campus. (After all, what better place to get your first tattoo these days than near a university?) I didn't get the sense that her tattoo artist was a Biblical scholar, but he was very kind and understanding.

I had planned to take photos of the inking as it was unfolding, but I found myself just holding her other hand during the process, expressing concern and offering support. "Does it hurt? Does it hurt?" I kept asking. She kept assuring me that she was doing fine, Karen came through the affair like a tattoo veteran – better than I did, in fact.

And here is the result:


Karen and the artist debated tiny details, like whether it should be "Psalm" or Ps." (more work, less confusion), or if there should be a line through the "7". But the finished product seemed to delight everyone involved, no one more than Karen.

Now that it's had some time to settle in, some people have guessed the drawing is a little bean, even a small brown penis. But Karen and I know better. And long after I finally receive my kidney transplant, we will have a special bond to share for all time.

Oh, what a lucky man I am.

Tuesday, August 23, 2011

Rockin', Just a Little

This is the week I fly to Little Rock, Ark., to accept my "prize" for winning the 2011 Robert Felter Memorial Award from the Renal Network. My reward is an exciting weekend in exotic, romantic Little Rock, to attend the annual convention of the American Association of Kidney Patients (AAKP).

What's more, I get to write about my experiences for the Renal Network. For free. As a professional writer who makes his living getting paid to string words together, I can't begin to tell you how happy that prospect makes me. Seriously, I can't tell you. Is there no end to the wonderfulness stemming from this honor?


The 2010 AAKP convention was in Tampa, Fla. Like Maxwell Smart used to say, "Missed it by that much."

This week the AAKP sent out an email titled "Things to Do in Little Rock!" It reads, in part:

"Little Rock is an exciting city with a vibrant downtown and entertainment district, a wealth of unique sightseeing, day trip and tour opportunities, excellent restaurants, shopping and museums!

"Famous as President Clinton's first capital city, the cradle of the civil rights movement, and the center of the beautiful Natural State, no city represents a bridge from the treasured past to the exciting 21st century than Little Rock."

Really? No other city? Anywhere? Wow!

Sounds to me like they're trying to suck up to the members who loved meeting in Tampa last year.

And did you know Little Rock was the "cradle of the civil rights movement"? I always thought Rosa Parks boarded that bus in Montgomery, Ala., not Little Rock. Maybe she got a transfer.

"Say you had only 24 hours to take in the sights and sounds of Little Rock?" the email asked. "What would you do?" Well, I probably would stay in my hotel room. But the convention hosts suggest:

• The River Market and downtown Little Rock (every city has a downtown, and almost all have markets; keep going)
• The Old Mill (as apposed to the New Mill?)
• The William J. Clinton Presidential Center (OK, they've got me there; presidential libraries are typically way cool. Wonder if Monica's dress is on display?)
• Little Rock Central High School National Historic Site (where, in 1957, nine brave black teenagers stood up to a raging, racist mob protesting integration at the school, providing the first major test of the Supreme Court's Brown vs. Board of Education decision. Maybe Little Rock isn't the cradle of civil rights; more like the incubator.)
• Craters for Diamond State Park (I didn't book a hotel room so I could go camping; unless, of course, this park has real diamonds.)

The message also pumps Little Rock as "the dining capital of Arkansas," which I trust isn't the same as "the cesspool capital of New Jersey." They recommend eateries named The Pantry, Whole Hog Café & Catering, and Brave New Restaurant. Brave New Diners might be more like it.

Open mind. Open mind. Little Rock is a state capital, after all. Then again, so are Lansing, Springfield and Cheyenne.

I always try very hard to have a good time no matter where I happen to be. I'll let you know if my track record remains intact after this weekend.




Tuesday, June 21, 2011

Just Kidneying – For Real

The chief transplant surgeon swept into my room at Barnes-Jewish Hospital in St. Louis, seemingly pulling the entire medical staff of the hospital behind him. lnterns, his surgical team, associates, student fellows – it was the "white coat swarm" that my nurse, Renee, warned me would be coming into my room to stare at me for a while.

But they were more than an hour late in their appointed rounds, which should have told me something.

The surgeon fixed his eyes and set his jaw. "I'm afraid it's bad news," he said solemnly.

Another doctor proceeded to give us the details: the kidney that had been designated for me, the one that prompted Karen and me to toss our clothes in a bag and race 200 miles to St. Louis at a moment's notice on a Sunday afternoon, the one that kept me overnight in a hospital though I wasn't sick, the one that necessitated a chest X-ray, EKG, blood screenings and a battery of other tests to make sure I was healthy enough to receive it – that kidney wasn't coming.

In keeping with the arcane rules and protocols of organ donation, at the last nanosecond another hospital in the region stepped up to claim the kidney for a patient whose condition was far more dire than mine. The doctor said a lot of other things, most of them apologetic, but I became lost in my own thoughts after that. The next thing I remember hearing was the chief surgeon saying, "You can get dressed now," before the swarm drifted back out of my room.

That's it. False alarm. So sorry. Just kidneying.

How ironic.

I was disappointed, of course, and very weary after a night of being poked, prodded and roused from my sleep every few hours on those wonderful hospital beds. The drive back from St. Louis seemed to take days. But I was neither upset nor discouraged. This revived relationship I have with Jesus Christ has given me an amazing sense of calm in matters such as these. It must be what the Bible means by "peace that passes all understanding." God knew this wasn't the right kidney for me, even though all the outward signs suggested it. When the perfect organ for me comes around, He will handle all the paperwork. God is in complete control.

What this experience showed me was the incredible fragility of this organ donation process. If an organ becomes available and if it's undamaged; if it's an acceptable blood and tissue match; if the potential recipient can get to the hospital in time; if he or she doesn't have a low-grade fever, undetected infection or some other physical impediment to surgery. Even then, there are no guarantees the transplant will actually take place. So many things have to go exactly right. It's a life lottery.


What saddens me most is not that I missed out on the transplant. It's that so many other people, who had offered up so many prayers, positive thoughts and good wishes, seemed more disappointed than I was. I'm told my father-in-law cried openly when he heard a matching kidney had been found. Larry is my personal version of John Wayne; he's not a cry-at-the-drop-of-a-puppy kind of guy.


My wife's BFF took the day off from work and drove to St. Louis to be at the bedside with Karen. My in-laws showed up to lend their support, bringing the twins with them. Madison, who really is becoming a talented young artist, used the trip to create paintings to adorn my hospital room, including one with a Bible verse she selected herself. We taped it to the front door of my room.

The passage is from Psalms 73. It reads, "My health may fail, and my spirit may grow weak, but God remains the strength of my heart; He is mine forever."

My pastor, Tony Caffey, and his wife, Sanja, drove in from distant Arthur, Ill., arriving about 90 seconds after we heard the unfortunate news. The gang truly was all here, and ready to rejoice. Their joy, alas, was short-circuited. So we all gathered in a circle and prayed instead.

So many of you put forward so much love, prayer and support on my behalf, I could actually feel it in my room at Barnes-Jewish. It's a phenomenal feeling to be cared about that deeply. Thank you. Thank you so very much.

The good news is, this call means I am at the top of the transplant list. I was told there have been instances where patients have been called in four or five times before they actually receive the transplant. (Oh, Lord, tell me that's not going to happen!)

I'm going to keep praying. You keep praying, too. Together we'll get through all this. And someday, after I've had a healthy replacement kidney for years and am doing better than any of us thought possible, we'll look back on these days and laughhhhh.

Sunday, June 19, 2011

The Kidney Call Comes

I wasn't ready.

My best friend since kindergarten, Walker Parmelee, told me not long ago that no one is ever ready when the call comes that potentially could change the rest of your life. It's like the Bible says in Matthew 25, "Watch therefore, for ye know neither the day nor the hour...."

Our day was Sunday, June 19. Father's Day. Four days after my 5*th birthday. The same week the State of Illinois was ordered to extend, rather than totally revise, existing health care benefits for its employees – including Karen, whose medical coverage I am under. I should have known this would be the time God might choose.

The hour was 2:30 p.m., after Karen and I had returned home from church at Harvest Bible Chapel. Ironically, my phone rang just as I was sitting down to a delightful home-cooked lunch, and I opted to let it go to voicemail.

Moments later, it rang again. Now I'm getting a bit peevish. "Which one of my idiot friends can't figure out that if I don't pick up the phone, I don't want to talk right now?" I carped, my thoughts in the form of a mutter.

The ringing eventually ended on that call, too. Then Karen's cell phone sprang to life. She at least had the motivation to get up and look at the number.

"Do we know anyone in the 314 area code?" she asked.

"That's St. Louis," I said. Home of Barnes-Jewish Hospital, my kidney transplant headquarters.


My blood ran cold.

She put the phone on speaker and we talked to a very nice transplant coordinator named Trish. She said a potential kidney donor match had been located for me: a 54-year-old woman (whoo-HOO! Younger than me!) who died within the past 24 hours and is a solid blood and tissue match.

That's the way it often is in the transplant biz, tragically. Someone's got to die for the gift of life to be bestowed.

The hangup in this case: no one knows anything about the lady's medical history.

Surgeons will perform a biopsy on the kidney to see if there's anything wrong with it internally, but until the results of that test come back and doctors are satisfied that it's damage- and disease-free, we're in a bit of limbo. What's more, because of the questionable origin of the organ, I'm told I can say "No, I don't think so" right until they wheel me into the OR without penalty of losing my place on the donor list.

Pressure? What pressure?

It isn't that I'm not thrilled about the prospect of a kidney transplant, although on the three-hour drive to St. Louis I could feel myself growing quiet and sullen. The closer we got to the Gateway Arch, the harder it was for me to catch my breath. At one point I thought I was hyperventilating.

It's hard to explain. As much as I try to put my faith in God for all things, I think it was just the fear of the unknown that was sending my mind into the funk tank. I'm doing all right on Peritoneal Dialysis – better than all right, actually, I'm doing great – and even though I may not stay that way forever and a transplant is far and away the best alternative long term, I always have had a very tough time adjusting to change.

It's amazing to me how many questions and "what ifs," serious and silly, come to mind at a time like this:

What if there are complications in the surgery?

What if my body rejects this lady's little kidney?

Will I miss dialysis?

What will I do with all that extra time and medical supplies once I'm off dialysis?

How will I respond to the anti-rejection drugs?

Will I ever be able to eat sushi, or raw anything, again for fear of infection?

Will I have to wear a mask in public?

You can drive yourself cuckoo-for-Cocoa-Puffs if you let your mind run free with all those "what ifs." Enough already. I'm much calmer now. Once we got to the hospital, got checked in and they started running diagnostic tests on me, I felt much better. Whatever's going to happen now is going to happen. It never was in my hands in the first place.

Right after my EKG was completed, out of the blue, a member of the church I belong to 180 miles away strolled into my hospital room. Dick Elder's wife, Kathy, is also a patient in this massive medical complex – and, as it turns out, in the room one floor above mine.

Small world, schmall world: you'll never convince me that's a coincidence.

Then the hospital technician, as she was drawing my blood, suddenly began softly praying aloud for my health and safety. "If it's for you, it's going to happen," she said, laying a hand on my wrist. "The Lord knows what's best for you. We ask you, dear Lord, to put this man's health in your hands."

Powerful stuff, this kidney transplant. Amen.

Giving Me the Finger


WHAT THE HECK IS THIS?

Not long ago I woke up to find the ring finger of my right hand bent back like a brown "C," as if it was pointing back at me, or preparing to flick something away. Even worse, it was locked in that position. And it hurt! I grabbed it with my other hand and tried to straighten it out. After hearing a small but audible "click," it was back in its normal position.

Now it's happening to the same digit dozens of times each day. Since I use that finger, along with its nine close friends, to do important things like write, make money and deliver these messages to you, this is no minor inconvenience.

It's an incredibly weird feeling when a part of your body doesn't respond to your mental commands. When it locks, I stare at my finger  and think, "Bend! BEND! I, your master, ORDER you to return to your regular place!"

Nuthin'.

Like I did when I learned I had kidney failure, my first move was to the World Wide Interweb to do some fast, intense medical research. What I have is actually quite common, Google tells me. O, fortunate me.

It's called "trigger finger," or stenosing tenosynovitis. We'll just stick with "trigger finger." And according to the American Academy of Orthopaedic Surgeons Web site, even with all the advances in modern medicine nobody seems to know exactly what causes it. Marvelous.

Here's what the orthopods do know:

• It happens when the flexor tendon, which controls the movement of your fingers and thumbs, becomes irritated or actually gets caught for a moment on a tiny nodule growing in the sheath that keeps the tendon in place.

• It is more common in women than men. (Lucky, lucky me.)

• It  occurs most frequently in people between 40 and 60. (Check.)

• It is more common in people who have certain medical conditions, lilke rheumatoid arthritis or diabetes. (Wait a minute: I've got diabetes, too?)

(Oh, no. It's probably the kidney thing. Never mind.)

• It may occur after heavy hand use or activities that strain the hand. (You mean, like typing millions of words over a 35-year career?)

Fortunately, a woman at our church, Theresa Miller, is a well-known physical therapist in the area. Unfortunately, she couldn't hold out much hope.

There is no "cure" for stenosing tenosynovitis, Theresa told me, and the best treatments are rest, perhaps some heat, and anti-inflammatory medicines. Occasionally a doctor will inject a steroid medication DIRECTLY INTO THE FINGER to help relieve the pain. (I'll need a moment here.)

As a last resort, surgery may be recommended to prevent permanent stiffness. In any case, the options don't sound particularly sunny.

Karen has become very adept at massaging the sides of my finger in just the right places when it locks to ease it pack to full extension. Theresa suggested a special finger splint to aid in the resting process, and I'll likely pick one up the next time I'm near a medical supply outlet. So in the future, if you should read anything I write that suddenly starts missing all its "Ls" and "Os," it's probably because I'm trying to finish my w rk whi e wearing the sp int.

Sunday, March 27, 2011

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.

Monday, November 8, 2010

It's Not Kidney Disease, It's the Lions

There is a small part of me that knows I'm sick, but generally I feel so good and have adapted so well to dialysis (knock on wood) that I rarely tend to think about it. God is good, all the time. However, it's a comforting feeling to know that should I ever really fall ill in public, there are still caring people in the world that might rush to my aid.

Sunday afternoon Karen and I were shopping at the Nordstrom store in the giant Woodfield Mall outside Chicago. (Ah, Nordstrom: Like so many things in life, I didn't realize how much I appreciated it until it was gone, after I moved to a city that didn't have one.) I was browsing through the men's department while watching pro football updates through the NFL Red Zone app on my Droid cell phone.

(Now let me interject right here that, after years of insisting my cell phone needn't do anything more exotic than send and receive calls, I was given a Droid recently by my wonderful wife when she upgraded to a new model. (Growing up as an only child, this may have been my first hand-me-down ever.) How could I have been so wrong? I am proud to declare that I am a Luddite no longer. This Droid is the best invention since peanut butter cups. With the Red Zone app I can watch NFL game action in real time on my telephone. I feel like Dick Tracy with a two-way wrist radio. My mother, if she were still alive, might faint dead away over these technological marvels we now take for granted.)

While looking over white Oxford shirts – no wardrobe can ever have enough – I was monitoring the Detroit Lions game at home against the powerful New York Jets. I am a foolhardy Detroit sports fanatic, as you may know. And though every Lions fan knows better than to invest too much passion or emotion in the outcome of their games, the team has been playing better of late. They held a 10-point lead over the Jets with mere minutes to play.

I kept shopping and checking the score, back and forth. Nice price on these chinos. The Jets have tied the score! Do you have this shirt in extra jumbo? They're going into overtime! Oh, the Nordstrom shoe department is so wonderful! And the Jets storm back to win the game on a field goal in OT!

I was momentarily crestfallen. Dagnab it, those Lions did it to me again! I emitted an audible groan and slumped against a rack of sale slacks.

In the blink of an eye, a dark-haired young saleswoman was at my side. (It was Nordstrom, after all.)

"Sir, are you all right?" she asked, breathless.

"No, I'm not," I replied.

"Should we get you somebody?"

"Yes. Maybe a better defensive backfield."

"What?"

"My team just lost in overtime."

A nervous laugh leaped from her lips, a combination of relief and confusion. Then her eyes narrowed, and a shot of anger flashed.

"You mean this is all because your football team lost a game?" she asked.

I straightened up and looked at her with calm resignation.

"Obviously, miss," I said, "you have never been a sports fan."

Go Lions.

Saturday, June 5, 2010

Driving to be the Best

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


I got to see George's locker.

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

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

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

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

Dear George,

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

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

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

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


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

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

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

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

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

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

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

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

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

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

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

Friday, May 28, 2010

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.

Monday, April 19, 2010

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.