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.

Friday, August 19, 2016

Happy to be a Part of 'the Minority Report'

My friend Mike Freeman, Illinois Secretary of State Jesse White, and Me.
Last week was National Minority Organ Donor Awareness Week. For a minute I felt guilty about not writing this post last week to coincide with the occasion. Then it hit me: every week should by Minority Donor Awareness Week.

According to organdonor.gov, of the more than 101,000 people in America waiting for a kidney transplant right now, more than a third of them are African American. So of course, more than a third of all African Americans are signed up to be organ donors, right?

What do you think?

No, seriously – what do you think?

The need for minority donors in this country – Hispanic, Asian and Pacific Islanders, as well as blacks – is more crucial than ever. That's why I'm so proud of the efforts of Illinois Secretary of State Jesse White and his phenomenal "Life Goes On" initiative to register Illinois residents to become organ and tissue donors after – well, you know.

This week, White's office announced that the state's donor registry hit the astonishing mark of six million registrants. "I'm thrilled to see that Illinoisans continue to show their giving spirit by signing up for this lifesaving program," said White, who became personally immersed in organ donation decades ago when his sister needed a kidney, in a prepared statement.

"Our mission is to sign up everyone who is eligible in order to give others a second chance at life and end the waiting list for the approximately 5,000 people statewide."

Despite those impressive sign-up numbers, every year about 500 people in Illinois die waiting for that perfect matching organ. Many of them are African American. 

So what a great honor it was for me to share a dais with White – the longest-serving  Secretary of State in Illinois history and the first black person to hold the office – last week for a Minority Organ Donor Awareness event at Carle Hospital in Champaign, Ill. 

We were joined by my new friend Dave Freeman, who lives in the same complex as I (our building manager introduced us) and is preparing to begin dialysis in hopes of an eventual kidney transplant.

Jesse and Dave were there to plead for the need. I was Exhibit A, the walking, talking success story.

Unlike me, who relishes any opportunity to open my mouth in public, Dave was more than a bit jittery prior to making his remarks. He had included a joke in his short speech and wanted to run it past me:

"When they asked me if I wanted to be an organ and tissue donor, I told them, 'No thank you. I play the trumpet.'"

Crickets. 

"I don't get it," I confessed.

Once he explained it to me – a play on words about musical instruments – I gently suggested he remove the "and tissue" part to put the key words closer together. Dave agreed to try it.

I won't bore you with every word verbatim (much as I'd like to), but this is the bulk of what I said to that hospital audience:

"Ladies and gentlemen, good morning.


"I'm happy and proud to share the podium with our esteemed Secretary of State, who has been such a champion in the field of organ and tissue donation. Thank you, Mr. White, for all you have done and continue to do.

"My name is Jim McFarlin, and I am speaking to you today from beyond the grave.

"Logically, realistically, there is no way I should be standing before you right now. In 2008 I was diagnosed with Stage IV kidney failure, and as many of you may know, the medical types tell you that at Stage V you should be checking your insurance policies and making arrangements.

Talk, talk, talk: Jimbo, the Kidney Crusader
"Now, I'm going to talk about God right here, so if you are not the "religious type" you may wish to tune out for a moment. Because I don't believe you can knowingly come so close to death's door and come away clean and healthy on the other side without having your faith in God renewed.

"I was on dialysis for just over two years – far below the average wait time for a transplant – when a precious little girl, just six years old, collapsed and died on the playground of a brain aneurysm. Her kidney was a perfect match, and in perfect condition. 

"I will forever be grateful to her parents for having the courage and selflessness to think about how their dead child could benefit others at that most devastating time in their lives. My transplant was performed November 18, 2011, and I'm still going strong. Praise God!

"I am Exhibit A for the benefits of organ donation. I am blessed. And I truly believe one of the reasons I'm still around is to encourage and appeal to my brothers and sisters – of all colors – to make the choice to register as an organ and tissue donor.

"High blood pressure and diabetes are two of the leading causes of kidney failure, and you know that black folks lead the league in those statistics. Y'all eating all that pork! 

"But you just know that African Americans are not signing up tp be organ and tissue donors in equal measure. Quite simply, we're not pulling our weight! We're not doing our fair share.

"And while it's true that the races have interchangeable parts, the truth is that tissue matches are just better when transplants occur within ethnic groups – that is, when black patients receive organs from black donors, Hispanics from Hispanics, and so on.

"For about two years I served as the End Stage Renal Disease Patient Representative for the State of Illinois. And while it was largely a ceremonial position, I tried to use it to best advantage. 

"As I traveled around the state, whenever I could I would drop into a dialysis clinic and ask to speak to the patients. And while I learned a lot from them, the takeaway that struck me hardest was that it seemed no matter where I went, the vast majority of patients were the same color as I am. The need for donors is critical.

"Why don't we donate? One reason, I think, is because we believe in all those myths and old wives' tales that just aren't true. Doctors will not let you die on the operating table so they can harvest your organs...you can still have an open casket funeral...organ donation is not against your religion. There is no legitimate excuse.

"So if you really believe that Black Lives Matter – or Asian Lives, or Hispanic Lives, or every life –  here is a positive, nonviolent, selfless way to prove your commitment. Become an organ and tissue donor. Do the right thing. Donate life. Thank you."

And by the way, Dave's edited joke got a big laugh. A good day all the way around.

Sunday, March 13, 2016

Paying My Kidney Forward

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

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

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

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

Bam.

Pow.

Oh, the pain.

I feel you, brother.

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

Everything but acceptance.

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

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

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

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

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

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

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

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

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

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

"Ask the man who owns one."

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

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

Who am I, the kidney answer man?

To some people, I guess I am.

Happy to help.

Thursday, December 31, 2015

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.

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.