HAPPY NEW YEAR, CHEYENNE! (Sorry About Missing Your Birthday)

You know that feeling that washes over you when you are shocked and embarrassed at the same moment?

It happened to me last month as the result of a single, four-word midday text from my amazing Bewee (Best Wife Ever), Karen.

"Happy Transplant Day, Darling!" it read.

Holy dialysis, Batman.

November marked the fourth anniversary of the organ transplant that undeniably saved my life, the introduction of a kidney that was described as "near perfect" by the surgeon who performed the operation on my failing body.

It was donated by a six-year-old girl – or more accurately, her parents, after their child suffered a brain aneurysm one horrific day and died on her school playground. Karen and I dubbed the kidney Cheyenne, reminiscent of a Western hero who gallops onto the scene in the darkest hour and saves the day, as a tribute to her and the unbelievable display of benevolence by her parents in the face of devastating grief.

And until I saw Karen's text message, I'd completely forgotten. Cheyenne's tenth birthday, her fourth inside of me, a true modern-day miracle if ever there was, and the anniversary just slipped my mind.

What does that say about me?

This is the photo I posted on Facebook that week to observe #TBT, or Throwback Thursday:

It's one of the last pictures of me with the two most important people in my life. It was taken at the going-away party for my mother, Caribell, and father, the original "Mac" McFarlin, from the retirement home where they lived for several years before moving home to Georgia and, eventually, going home.

Had I been thinking or retained even an ounce of memory, however, this is the personal history photo I should have displayed:

It's one of the first pictures taken of me and the lovely Bewee in the recovery area of Barnes-Jewish Hospital in St. Louis after I emerged from the dense fog of anesthesia with a nearly-new little transplanted kidney. (Did you know that if a child's organ is sewn into an adult body it will increase in size by itself to accommodate the needs of its larger host? Somebody try to tell me there's no God!)

Yet now, four years later and feeling great, with outstanding monthly lab results and an unrestricted diet, I seem to have kicked my kid kidney to the curb emotionally.

Am I ungrateful? Unappreciative? Have I begun taking my unbelievable blessing for granted?

Actually, I think it's just the opposite.

Ever since my 2011 transplant, and the arduous recovery and constant monitoring that followed, I believe my life dialed up to a sharper focus. I was so happy to be off years of daily dialysis, and I heard myself being thankful for what may seem like the smallest things – even going to the bathroom to pee, knowing that there are so many patients on dialysis who cannot.

I remember reading that Jack Benny, the late, great comedian of the '40s-'60s, used to drive his friends crazy extolling the wonders of the most mundane life events. "You know," Benny would enthuse, "that may have been the greatest ham sandwich I have ever tasted. The ham was sliced just right. And the cheese! My goodness!" That's how I felt, and still feel today: everything is a wonder.

The sky is a little bluer, the air just a bit sweeter. And as I weave through the renal community and meet so many people who are desperate for a kidney transplant or faring poorly on dialysis, my blessings leap into focus once again.

Whenever Cheyenne causes me a bit of sharp or prolonged pain – she's only 10, after all, and adopted, so she does become defiant from time to time (fellow transplant survivors, does this happen to you?) – I'm reminded that her stay is not guaranteed, or necessarily permanent. For any reason, or no reason at all, she could decide one day to reject me and just stop working.

So while I may not think about my transplant as much as I did three or four years ago, I do think about it every single day, whether gobbling down my handfuls of pills, monitoring my vital signs or remembering to squeeze in some exercise. However, as in most relationships, it's not enough to just think about how much your beloved means to you. You've got to express it as well.

Hey, I'm really forgetful, and I am sorry.

Happy Belated Birthday, Cheyenne. And Happy New Year, too.

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.

PKD Gets Its Own Day...But What It Really Needs Is a Cure

It's called PKD, not PDA, although this terrible disease certainly could use some public displays of affection...from you.

Today (September 3) is Polycystic Kidney Disease (PKD) Awareness Day, a day devoted to raising awareness of the life-threatening inherited disorder. In PKD, clusters of cysts develop inside your body, primarily within your kidneys. The cysts are noncancerous, but the round sacs contain a water-like fluid. As they accumulate more fluid, they can become extremely large.

In the vast majority of cases, the cysts overwhelm the kidneys and lead to kidney failure. There is no treatment. There is no cure.

Even though the genetic condition afflicts thousands in the United States and millions more worldwide, most people have never heard of PKD, much less know its effects. Obviously, #PKDAwarenessDay seeks to change all that.

Indeed, you may know someone who has PKD and not be aware; the disease isn't something its sufferers tend to bring up in friendly conversation. Did you know:

• PKD is the fourth leading cause of kidney failure;
• Parents have a 50-50 chance passing PKD to each of their children (unlike many genetic conditions, it does not skip a generation);
• Polycystic kidneys can grow as large as footballs and weigh up to 30 pounds each;
• PKD affects all races, genders, nationalities and geographic locations equally.

#PKDAwarenessDay is the precursor to the fundraising "Walk for PKD 2015" events staged throughout the country in September. In the markets I know best, the Detroit Walk for PKD takes place Saturday, Sept. 12 at Boulan Park in Troy; the Chicago Walk for PKD happens Sunday, Sept. 20 at Busse Woods Grove 6 in Elk Grove Village.

For more information on participating in the Walk for PKD nearest you, to make a donation, or for all other things Polycystic Kidney, reach out to the Foundation at pkdcure.org.

I wouldn't want a football growing inside of me, would you? We've got to stop this crazy thing.

Here is the PKD Foundation 2015 information video, "Do You Know PKD:"

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

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

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

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

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

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

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

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

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

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

Of Paper Towns, Plastic Tubes and Precious Memories

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

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

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

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

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

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

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

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

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

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

Jimmy Springs a Leak

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

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

Happy Black Man With Snappy Black Car  

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

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

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

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

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

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

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

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

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

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

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

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

"What clamp?"

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

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

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

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

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

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

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

Ever go through a mall walking like John Wayne?

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

The National Kidney Foundation's New Ad Campaign? It's a Pisser

You've heard the statistics before – maybe even read them here – but they still seem staggering nonetheless:

• According to the National Kidney Foundation (NKF), one out of every three adults in the U.S. today is in danger of developing kidney disease.

• One out of nine Americans – more than 26 million people – already has kidney disease...and most don't even know it.

• African Americans are three times more likely to develop kidney disease than the rest of the population (just my luck), Hispanic Americans 1.5 times more likely.

• Every single day, 12 people die waiting for a kidney transplant.

But here's a stat I've never heard before: the NKF says its research shows that half of all Americans don't know that healthy kidneys are responsible for creating urine.

What? How is that possible? Where did these people think urine comes from, the Pee Fairy?


OK, so maybe everybody isn't a whiz at anatomy. (See what I did there?) The NKF, always eager to educate, has taken a bold – and downright silly – approach to raising public awareness by launching a new promotional campaign this month called, "Everybody Pees."

Well, hopefully everybody, at any rate.

"Urine also happens to hold the key to catching kidney disease," says Kevin Longino, the acting CEO of the NKF. "The message may be unconventional, but it is educational and actionable: get your urine checked for kidney health."

Unconventional? For an established, conservative heath care organization like the National Kidney Foundation, that's your understatement of the month. The takeaway is supposed to be that every time you go to the bathroom to do No. 1 and something comes out, remember to thank your kidneys and make a mental note to keep them healthy. The best kind of peeing you can do, the NKF suggests, is into a cup at your doctor's office – a regularly scheduled urine test to check for kidney damage.

The way they're going about it, however, is as goofy and off the wall as it is eye-catching and oddly charming.

"We are flipping public health education messaging on its head, using humor to get out message across and foregoing scare tactic messaging," Longino declares of his campaign, developed in collaboration with Publicis LifeBrands Medicus. "We're going out on a limb with our core message on urine testing, but we need to take risks if we're going to alter the course of kidney disease in this country."

This is the root of their risk, the Foundation's two-minute animated campaign video. Careful: you may catch yourself singing the theme song in public:

"Pee is a lifesaver (yes, really)!" the video's tagline reads. "You might think urine is gross, funny or just a fact of life, but it's also the best way to find out if your kidneys are working."

Let me tell you from personal experience, you get a lot more casual and less grossed out about urine when you have kidney problems. Mostly, you're just glad to see your pee. 

For more information about the campaign, you can go to www.everybodypees.org.

While I was working on this post, our twin 15-year-old girls wandered past and fell in love with the "Kidneys Are the Coolest" sticker above. They immediately wanted posters, jewelry and T-shirts. (You have them, right, NKF?)

The Foundation may just have a winner here. As far as the twins are concerned, folks, urine.

Chain, Chain, Chain – Chain of Cool

CBS This Morning didn't mention that this is National Kidney Month when they aired this feature on Friday (March 27). But somebody there had to know, right? I mean, could the timing have been any more perfect?

I awakened to the early-morning news show to see this inspiring story of a dozen people in and around San Francisco – all strangers to each other – who helped make medical history at California Pacific Medical Center: They formed the largest "transplant chain" ever on the West Coast, a six-way exchange of kidneys.

For those of you unfamiliar with this still relatively new process, typically a person donates his or her kidney to a stranger who is a blood type and tissue match for the organ. In turn, the recipient has a relative or friend donate a kidney to another stranger in need, and (like the old TV commercial) so on and so on and so on.

There have been such chains assembled on the Left Coast before, of course, but none that ultimately gave life to six renal patients desperately in need of a transplant.

In the CBS This Morning piece, the organ donors and recipients met in person for the first time. Bring your Kleenex.

Zully Broussard, the woman who initiated the donor chain, lost both her husband and a son to cancer. She did not donate her kidney to benefit any particular person. "I just wanted them to have that quality of life," she says. "I want their loved ones to know that they're going to be around."

Oh, heck – why just talk about it? Why don't you watch this report from CBS correspondent Carter Evans for yourself?