Wednesday, November 21, 2012

Happy Birthday, Cheyenne! (and Me)

Surely some scalawag must be playing tricks with my calendar. It cannot possibly be one entire year since I was flat on my back in a hospital room at Barnes-Jewish Hospital in St. Louis, feeling like I had been sliced open from hip to hip (because I had) and giving thanks every moment for the numbing release of a morphine drip.

"If this is what a kidney transplant feels like," I remember thinking, "maybe dialysis wasn't so bad after all."

That, of course, was the drugs woofing. Cheyenne, the little kidney that can, has officially been inside me and functioning flawlessly for 12 months now, and we couldn't be happier together.

What's the symbol for a one-year anniversary? Paper? That's so passé. Let me write words on this computer screen instead to celebrate this mini-milestone and praise the miracles of modern medicine. 

Happy Birthday, Cheyenne! And by extension, because a transplant literally is the gift of a second chance at life, Happy, Happy 1st Birthday to me as well.

The months of wound care and recuperation, the constant doctor's visits, the adjustment to taking and coordinating an avalanche of new prescription drugs – it all feels like a hazy memory now, as if I was observing somebody else's life from afar. Everything has settled into a natural, comfortable daily routine (although I still can't remember how long to wait after taking my anti-rejection pills to eat; I really like eating).

The moral of Year One for me is that it always gets better. It may not become perfect, or even great – perfect or great for me would be an unscarred body and never having had Stage IV kidney failure in the first place – but it, whatever "it" is (life, relationships, job, finances) never remains the same. Sure, it may get worse for a time: the realization that my kidneys had shut down to the point I needed dialysis was one of the lowest moments of my life. But if you "wait on time," as my mother used to say, and trust your faith in God, your circumstances eventually will improve. Honest.

As you may know, I have been a strong supporter and advocate of the American Foundation for Suicide Prevention for many years, ever since the teenage son of dear friends took his own life inside their home. Nothing breaks my heart and shatters my soul more deeply than youth suicide: the kid who decides to end it all because Chloe broke up with him, not realizing a dozen more Chloes may come along before he becomes a man. If I could, I would reach out to every person whose psyche is in that much chaos, give him or her a big hug and just whisper, "Hang on. Please. It always gets better." I believe that to my core.

One more huge chunk of news: Because an experience like a kidney transplant gives one a startlingly clear vision of life and time and how precious both are, my adorable wife, Karen, and I have decided to mark Cheyenne's birthday by launching our own home-based business. We're blessed to both have jobs we enjoy, but money provides choices and ultimately we want the freedom to spend more time together and rejoice in each other's lives.

Besides, this is a company we're both incredibly excited about and have leapt into with all four feet. Rodan + Fields, the extremely smart Stanford dermatologists who created the phenomenally successful Proactiv solution, have developed a prestige skincare line to benefit women and men of every age and skin condition. And because the earliest advice I can remember my mother giving me was, "Moisturize," skin care has been a priority most of my life. And these are some of the best products I have found.

I hope you like them, too. Maybe you'll even join us on this incredible business journey. Tell you what: Check it all out at Karen's R+F Consultant Page. Take the "PerSKINality" test and see what condition your condition is in.

Then, let's talk.

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!"


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, November 5, 2012

Standing on the Shoulders of Heroes

I was in Indianapolis last week at the headquarters of The Renal Network, Inc., where I am proud to sit on the organization's Patient Leadership Committee for Network 10, representing the state of Illinois.

I like this group a lot because, while this was just my second meeting, many of the members have been on the committee for years and have developed an easy affability with each other. They laugh and poke fun, but when we get down to business their familiarity allows them to speak candidly and tackle issues with lively exchanges of viewpoints.

We discussed a broad range of topics. (The last time I sat on a patient advisory committee and wrote anything about its meetings in Just Kidneying I was kicked off the committee, so let me just say the discussions were fruitful.) But the most fascinating highlight of the day for me was a newspaper brought in by a fellow member from Ohio.

The following article appeared in the Dayton Daily News on Nov. 1. I'm so happy someone thought it worthy to acknowledge Clark Beck's milestone. The lead is buried a bit because the rest of his life is so interesting, but the headline suggests the amazing fact: At 83, Beck may be the oldest living recipient of a single kidney transplant.

He's had his kidney for 40 years! What an inspiration! And when you consider that kidney transplants weren't even attempted in the U.S. until the 1950s, and how crude and perilous those operations were compared to the smooth, almost-commonplace procedures of today – well, Clark Beck is just a walking, talking miracle. Not to mention a pioneer, on many levels.

I'm doing what I'm doing today because of people like him. I hope to meet my new hero someday soon and shake his hand. But for now, let me shut up and allow you to meet him.

By Debbie Juniewicz
Contributing Writer

Clark Beck didn’t set out to be a pioneer – just a student.

But after Purdue University told the young black man that “your people cannot be engineers,” he continued on. With transcript in hand, he tried the University of Cincinnati the next day.

“The dean looked at my transcript and told me, ‘You’re going to catch hell from both sides of the desk,’” Beck said. “There was only one other black student in the engineering school at the time.”

The Harrison Township (Ohio) man was ready for the challenge and enrolled in the university’s College of Engineering and Applied Science in 1951. He earned a bachelor’s degree in engineering and later a master’s degree in aerospace engineering.

His challenges weren’t limited to getting an education. He started to develop serious health problems in the 1970s.

“I had a rough time when I was in school. I didn’t have enough money to eat well or take care of myself,” he said. “I got sick, and the strep throat settled in my kidneys. I didn’t know at the time the damage it did.”

When doctors told him he needed a transplant, Beck’s first option was to see if any of his three siblings were a match. They weren’t, and Beck was actually happy because he didn’t want to take one of their kidneys, he said.

Beck, who was working as an engineer at Wright-Patterson Air Force Base and teaching at Central State University, continued dialysis and waited for a kidney to become available. He almost missed his chance, however, on a late fall afternoon almost a year after he discovered he needed a transplant.

Beck went out early on a Saturday morning with his surveying class and missed the phone call alerting him that a kidney had been recovered from a deceased donor that morning. He didn’t get the message until Saturday night.

“The doctor told me that the kidney had a 50 percent chance of lasting six months,” he said.

Beck’s doctor might have underestimated a bit. The 83-year-old celebrated the 40th anniversary of his transplant Monday. It is a significant milestone as Beck is considered to be among the longest living survivors in the world with a functioning kidney, according to the United Network for Organ Sharing.

But with Beck, it’s about more than quantity – it’s the quality of life that matters.

“Any chance he has to make a difference, he takes it,” said Cathi Arends of Life Connection Ohio. “Whether it’s mentoring a young person or giving someone who needs a transplant hope, he is there for them. One of the things he frequently says is that he wanted to make the most of his second chance, and he has done just that.”

Beck founded the Wright STEPP program at Wright State University in 1987. The Science, Technology and Engineering Preparatory Program was designed to enhance the development and education of youth underrepresented in the fields of engineering, math and science.

Beyond the classroom, Beck had a 31-year career at Wright-Patterson and was the first black president of the Dayton Engineers Club. He is a Donate Life Ambassador for Life Connection of Ohio and serves on several community boards.

“He is our voice in the community, and we are so glad to have him working with us,” Arends said.

And Beck is happy to have the opportunity – just like he was when he was given the opportunity by the University of Cincinnati more than six decades ago.

“I was definitely a pioneer in many ways, and I’m proud of that,” he said.

Reprinted by permission. Contact this contributing writer at