Saturday, December 2, 2017

Make a List of All You Do. The Results Might Surprise Even You!

Micheal and Me: With the Amazing Micheal Turner
CHICAGO – Recently I was here to attend the annual meeting of The Renal Network ESRD Network 10 Board of Directors, on which I am proud to serve as a patient representative.

The Renal Network is a not-for-profit organization tasked with monitoring the quality of dialysis care in Network 10, which covers the state of Illinois. (There are 18 such networks nationwide, all under the direction of the Centers for Medicare and Medicaid Services (CMS), responsible for every U.S. state, territory, and the District of Columbia.) I've been affiliated with Network 10 in one form or another almost since my kidney disease and I moved to Illinois in 2009.

I am one of two patient reps on the board. The other is a gentleman named Micheal Turner, of whom my admiration knows no bounds. He's the Real Deal, a true believer, a warrior for patients' rights. Sometimes I'm almost jealous of Micheal because he still has such an active, caring, hands-on role in his dialysis clinic. He rallies and organizes his fellow in-center hemodialysis  patients, acts as liaison between patients and staff, follows up on grievances.

Then again, being as fully engaged as Micheal Turner means I probably would be on dialysis again.

Never mind. You go, Micheal. 

Typically speaking, neither he nor I get to do a lot of talking at these board meetings. It's not that we aren't valued, as has been the case at some other meetings I've attended where nephrologists, dialysis nurses and other health professionals look at patients as a necessary evil, or at worst, an annoyance to be patronized. It's just that Network 10 has undergone some major structural changes the past few years and much of our time has been spent in organizational details, rewriting bylaws, that kind of thing.

Not this time. A few days before the meeting, our executive director, Bridget Carson, emailed me and said she would like to begin the agenda with a "patient rep update." It would be an opportunity to introduce the new board members – and many of the old ones, I'd wager – to who we are and our activities outside the boardroom.

And give us a chance to speak, too.

Open a Magazine and See Your Face? Cool, But Creepy. 
So the night before, in my Chicago hotel room, two extraordinary things happened. I picked up the latest copy of CS (Chicago Social) magazine, one of those glossy local publications found in every Windy City hotel room and one for which I write, and much to my surprise found my little brown mug staring back at me from the contributors' page! Magazine deadlines are so far in advance that I'd forgotten I had even written a story for that issue. That'll wake you right up!

The other thing was, now completely awake in my cool, quiet room, I actually had time to think about all my kidney-related activities and jot them down in advance of my meeting moment.

In addition to sitting on the Network 10 Board of Directors:

• I'm a "subject matter expert" in the area of patient mental health for the Florida-based National Patient and Family Engagement Learning and Action Network;

• I remain involved with the National Kidney Foundation of Illinois (NKFI); I will be delivering the keynote address December 2 in Champaign for their seminar entitled, “Living With Kidney Disease and Transplantation;”

• I served a two-year term as the ESRD (End-Stage Renal Disease) patient representative for the state of Illinois. Yeah, the whole freakin' state. While largely a ceremonial position, the title allowed me in the front door at many dialysis clinics throughout the state, where I got to meet and talk to dialysis patients of all stripes;

• I completed the training to become an ambassador for Gift of Hope, the organ and tissue donation network for Illinois and northwest Indiana;

• I'm the acting secretary for my local NKFI Champaign kidney disease and transplantation support group,

• And, of course, when time, topic and energy combine, I still maintain this blog, which played a major role in allowing me to win the Robert Felter Memorial Award from The Renal Network in 2011 for outreach and information to the kidney community.

I say all this not to strain my shoulder by patting myself on the back. It's just that sometimes when you're running the race, you don't stop to notice how far you've traveled. I really had no idea about how many renal-related activities I was and am involved with until I took time out to write them down.

I still prefer the personal touch myself. Over the past five years or so, I've become sort of Kid Kidney, medical advisor to friends and acquaintances far and wide. Many of my younger years were spent with people who rocked hard and partied harder, and it seems all our bodies are breaking down about the same time. 

I'll bet I field at least three calls or messages a month from old buddies, people they've referred, even total strangers, who have just been diagnosed with some stage of kidney disease and want to talk about dialysis and transplant options. "They're just scared," comes the usual explanation. "They know you've been there before." I'm honored by their trust. I always advocate peritoneal dialysis (PD), the option that saved my life.

Of course, that option is not always available. Not long ago I received a call from a dialysis nurse I know. She had a patient – we'll call her Sally – who was on the verge of ending her hemodialysis treatments. She lived alone, and she had grown tired of the draining three-times-weekly clinic visits, securing transportation, the physical and emotional highs and lows. She was ready to pack it in. "Could you just come and talk to her?" the nurse asked.

What the heck could I tell her? But I met Sally during her next dialysis treatment. "I'm not here to tell you what to do," I began. "I just wanted to meet you and talk." 

Sally said she couldn't do PD because she couldn't handle the equipment and heavy boxes of fluids by herself. She was retired, and tired, and just didn't see any future for herself. We talked for 30 minutes or so; actually, I probably did most of the talking. As I left I handed her my business card and invited her to attend one of our monthly support group get-togethers. I left feeling like I had accomplished nothing whatsoever.

Two days later, I received a call from the dialysis nurse. "What did you say to Sally?" she asked enthusiastically. "The whole session, she kept saying, 'Jim said this,' and 'Jim said that.' She seemed like a totally different person."

I'll never get board of meetings like those.

Friday, October 27, 2017

Yet ANOTHER Advantage of Kidney Transplants – Making New Friends!

My budding bud, Wayne: Sox and Tigers fans, united by kidneys!
At this age I'm not accustomed to getting all giddy over the making of a new friend. That's typically the province of grade-school boys at their first Cub Scout meeting. However, I recently forged a new acquaintance, and I've got to tell you: I'm pretty jazzed about it.

Meet Wayne Meyer II (says Jimmy McFarlin III), baseball coach for small-town Le Roy Junior/Senior High School ("Home of the Panthers") about a half-hour drive from where I live. Now, if Wayne was only a baseball coach and former player, that surely would be enough to curry my excitement: as anyone who knows me will attest, I am an absolute geekazoid when it comes to America's (First, Last and Always) Pastime. For my birthday in June, the only present I really asked for – and received, thankfully – was the commemorative bobblehead of Detroit Tigers righthander Michael Fulmer, the 2016 American League Rookie of the Year. 

What does that say about me?

Anyway, I feel pretty confident that Wayne and I will have a lot to talk about going forward, which is important after the getting-to-know-you period has subsided. But here's the kicker: this tall, extremely healthy-looking man is, like me, a kidney transplant recipient!

Small (Wayne's) World, ain't it?

He and I met in the usual way: standing in line for tests at a hospital laboratory office. I was in line behind Wayne, and regardless of what all those signs say about patient privacy and HIPAA regulations, you cannot possibly whisper softly enough at the check-in desk to avoid being overheard by everyone in a small waiting room. 

He answered all the same medical questions I have been asked at that desk at least once a month for the last six years. I was so familiar with them, I knew the basics of Wayne's condition before he ever turned around to face me.

"How long ago was your transplant?" I asked him.

Came to find out he was a "newbie." He underwent successful transplant surgery on Dec. 3, 2016, and, like I did the first year or so, has to come to the hospital every week for blood tests. The transplant team wants to make sure your foreign "tenant" is making itself comfortable in its new home. For Wayne, that means making the 70-mile round trip from Le Roy every seven days. 

I learned that not only do we share the same local nephrologist, the wise and compassionate Dr. Abdel-Moneim Attia, but we had our surgeries at the same hospital, Barnes-Jewish in St. Louis. We were like renal relatives! Kidney cousins! Since our lab schedules were certain to dovetail, I invited him out to coffee at some later date. To my great delight, he accepted.
My favorite birthday gift. Is something wrong with me?

Weeks later, at an Einstein Bagels restaurant in the shadow of the hospital, Wayne and I got better acquainted. It's fascinating to me how many different ways people come to the point of needing a kidney transplant. In his case, he was actually born with only one kidney! 

Wayne said he was never made aware of it – and since he was a young, healthy, athletic fellow, who would think to look? – until his overworked organ began wearing out. "I had the kidney of a 90-year-old man," he told me.

In 2015, Old Man Kidney decided it had labored long enough. "I started feeling sick," he recalls. "I powered through the end of the school year, and the baseball season, of course, but my feet started to swell. My energy went way down." By the time his wife, Victoria, finally convinced him to go to the hospital, "I was struggling," he admits. "I needed to know what was going on, but I was scared to find out."

Not only did Attia calm and encourage him, but he also made a prediction. "Dr. Attia said from the get-go, 'a year and a half, two years,'" until he received a transplant, Wayne says, "but everything from Barnes-Jewish said it was going to be at least a three- to four-year wait. But Dr. Attia knew what he was doing. He called it from the first time he met me when I was hospitalized."

Wayne spent that year-and-a-half wait on peritoneal dialysis – just like me! – and dialyzed at home with his wife's valiant assistance. "The quality of life did not change much at all," he says. "That's what made the transition so much easier." 

Beyond the steadfast support of Victoria and their two sons, Trey and Colin, the outpouring of concern and care from his tiny town was overwhelming, he says. Clearly, LeRoy adores its high school baseball coach and his family. 

"Some guys at school organized fundraisers to help cover medical expenses," Wayne says. "It seemed like everybody knew about it. I still get people from around town, even other towns, asking me how I'm doing. People who I had no idea knew anything."

And how is he doing? "I feel great," he beams. "Never had a sick day because of it. My energy level is great, though I'm not in shape like I used to be."

None of us are, Coach. Although I'll bet his superior conditioning played a big part in his recovery and present state of health.

His health and happiness come tinged with just a touch of regret, however. Wayne doesn't know who his kidney donor was, but "I do know the kidney was supposed to go to a family member, and for whatever reason it didn't work out," he says. "It's an odd feeling, knowing that it was designated for someone within the donor's family and I ended up getting it. It's kind of a touchy situation. It's one of those cases where you're excited, but you still feel bad." 

Of course, we also talked a lot of baseball. He is a Chicago White Sox fan, but he's such a nice guy that I'm willing to forgive that misguided life decision.

Wayne has invited me to speak to his English class, which will happen in the very near future. I'm so excited! I love talking to young people about the power and passion words can carry, and the remarkable career opportunities I've enjoyed from being able to write good.

Uh, well, I mean. (Just wanted to see if you were paying attention.)

I think the hardest part will be not spending the entire class time talking about our transplants. For both Mr. Meyer and me, it's been an education.

Thursday, September 14, 2017

She's His Wife, and Now She's His Life: A Transplant Tale in Texas

After Sept. 14, Angela and Josh Will be Even Closer Than in This Photo Booth.
It is by no means a stretch of the imagination to say that today – Thursday, Sept. 14, 2017 – is the most important day in the marriage of Angela DeLa Bullard and Josh Bailey. More important, even, than their wedding day.

A life-changing day.

In all likelihood, a life saving day.

For today is the day that Angela is donating one of her kidneys to her beloved husband in Austin, Texas. Josh has experienced the miracle of a kidney transplant once before, but last November he received the soul-crushing report that his adopted organ from 13 years ago was functioning at only about 12 percent of capacity, and dropping fast. (Did you know that your kidneys, marvelous examples of God's handiwork that they are, still can serve your body quite adequately at 60 percent?)

Since Thanksgiving of last year, Josh has been on dialysis three times a week while continuing to work and lead a relatively normal life. And believe me, folks, that ain't easy.

After months of uncertainty trying to coordinate insurance and other issues, last April the couple began their search for a new donor. And just two months later, they received the miraculous news that  Angela was a match!

Now this is a rare and wonderful thing indeed, and as any believer would tell you, no coincidence or phenomenal stroke of luck. The Almighty's hand is clearly doing its thing here.

When my time came to look for a donor, my wife, Karen, refused to get tested. She employed logic over love. "If I get tested and I'm a match," she reasoned, "who's going to take care of you? I couldn't. We'd both be laid up recovering at the same time."

Josh, Angela, and Not the Family Pet. 
That's the challenge facing Josh and Angela. "Our original plan was that I would continue to work and be a caregiver for Josh during the first steps of his recovery, but now we will be traveling that path together," she writes. "I am beyond willing to do anything within my ability to aid in making my best friend and partner feel better. As the saying goes, however, time is money."

So they established a Go Fund Me page to help defray the medical bills and living expenses that are sure to mount while they recuperate. Their modest goal was $1,200, just to get them through a month or so, but in this remarkable period of America's generosity that figure has more than doubled and continues to grow. Amazing.
I'm making a donation today. I invite you to join me, but even if you are not so inclined, please consider sharing this post with your social media circles. Here's the link for you to make a contribution: https://www.gofundme.com/joshandangela

Now, I have never met Angela and Josh. Prior to today, I couldn't have picked them out of a photo array. However, we have a friend in common: Josh went to college with my former churchmate and recently repatriated Texan, Dr. Frank Engel. Frank is one of the finest men currently walking the earth, and if he likes Josh and Angela, then so do I.

"You'll notice they only asked for one month's expenses, and they've surpassed that," Frank says. "It helps when you're a swell guy."

And besides, I kind of know how he feels.

God bless you both.

UPDATE: On Sept. 23, 2017, Matt Bailey posted to Facebook: "We are happy to report that 10 days after surgery, Angela and I are back home. We passed the critical phase of our recovery and were released from the hospital with flying colors!

"We both have a long road of healing in front of us, but we're out to the danger zone and feeling better every day. Your thoughts and support had a direct impact on easing our stress during this time We are eternally grateful!"

Monday, January 2, 2017

Finally – A Chance for Some Big (Kidney) Ballin' in Detroit

Yes, yes, I realize – I'm the only man in the photo. But I was willing to make the sacrifice for such a great cause!

Recently I had the opportunity to fulfill a long-held dream. I can't exactly say it was a "bucket list" item, but since I likely would have kicked the bucket long ago without the information and support of agencies like the Kidney Foundation of Michigan, it was a memory I'll cherish forever.









silent auction on cell phone.