Alan and Gloria, on his 70th birthday. |
JK – Just Kidneying
It's kidney disease as Toy Story and the blogger as Buzz Lightyear: from dialysis to transplantation – and beyond!
Wednesday, November 16, 2022
I Really Give a Whitt About This Guy; I’m Hoping That You Will, Too
Thursday, November 18, 2021
Happy Kidneyversary to Me: Celebrating A Decade of Death Defiance
Beewee and Me, Just Out of Kidney Surgery |
On November 18, 2011, a decade ago today, my life changed forever. I was lying in a bed at Barnes-Jewish Hospital in St. Louis, drifting in and out of anesthesia and thinking about a 6-year-old girl I didn't know and had never met, and how her parents' unbelievably selfless act might add some overtime to my game of life here on Earth.
Three years earlier, to my great surprise, I was diagnosed with Stage IV kidney failure. They say that at Stage V you should start checking your insurance policies and consulting morticians, so all in all Stage IV wasn't so bad.
But once your kidneys start heading south, they won't see the Mason-Dixon Line again. I was going to need a transplant, sooner than later. And prior to that I probably would have to go on dialysis.
Here's the point where I can't understand why everybody doesn't believe in God. When I received my dire diagnosis I was living alone in Detroit, divorced and downsized out of a high-paying job, unable to afford COBRA insurance and barely holding on to my rental house. This is generally what's known as rock bottom.
Then, on an online dating site I was canceling the next day, I met this indescribably wonderful woman named Karen. She lived two states away in Champaign, Ill., so I knew there was little chance of ever meeting her, much less launching a relationship. But we had tons in common, eventually began talking and/or texting daily, and before I knew it I was on a plane to central Illinois to hold her in my arms. She knew everything that was going on with me health-wise and never batted an eye.
A year later we were married.
Wait, it gets even better. I moved out of Michigan for the first time in my life and relocated to Champaign so that Karen – better known today on social media as BeeWee, abbreviation for "Best Wife Ever" – and I could be together. She works for the University of Illinois, and I am firmly convinced that the main reason the State of Illinois is in such constant financial peril is because the health insurance for its state employees is so phenomenal. I had barely set foot in the state as the spouse of an employee, and it was like, "Oh, you need a kidney transplant? Hundreds of thousands of dollars? No problem! Welcome to the Land of Lincoln."
Kidney Crusading at a Local Hospital |
For more than a year I was placed on peritoneal (pair-it-on-NEE-uhl) dialysis, the gentler, less invasive form of assisting your kidneys I have since championed for renal patients old and new. Then, after a few false alarms, we finally received THE CALL: a kidney had been found for me from a deceased donor, and it appeared to be an ideal match. How fast can you get to St. Louis?
How fast can this car go?
As I was getting prepped for surgery, I remember the nurses must have broken every HIPAA regulation in the manual, so eager were they to tell me about their donor. "Do you know whose kidney you're getting?" they kept asking. Uh, no, I didn't, but apparently I was the only one.
The story was all over the news in St. Lou, and one nurse called it up online to show me: a 6-year-old girl, apparently in perfect health, suffered a brain aneurysm on the playground one sunny morning and died on the spot. And her parents, in the midst of their sudden, devastating grief, made the decision to donate her organs to others.
As my transplant surgeon suggested to me, I was receiving "the perfect kidney:" it was a flawless blood and tissue match, and at age six her experimenting with smoking, alcohol and drugs was probably minimal.
I named my kidney Cheyenne, in her honor. She's a teenager now, and sometimes she can get a little rebellious, but for the most part she has seemed completely content and productive in her second home. I take tacrolimus (tack-crow-LEE-muss), a leading anti-rejection drug, twice a day, every day, exactly 12 hours apart since 2011 to try to keep her happy. (Anyone who knows my commitment to punctuality can imagine how challenging that has been.)
I have never met or communicated with her parents, by their choice. However, I may try to reach out to them once again on this 10th anniversary. I have always wanted to hug them verbally, if not physically, to let them know what their gift has meant to me. Many times I think about all the things I would not have accomplished or experienced had I not been here for the last decade:
BeeWee and Me, at Our Son's Wedding |
The experience of being a father, as we shepherded Karen's brother, Jordan, through his high school years.
The two books I have ghostwritten, and the fascinating one I'm working on now.
My advocacy for kidney transplantation and peritoneal dialysis (I'll never forget the man who gave a knockoff Jimmy Choo – or was it Jimmie Chew – handbag for my wife as thanks for recommending peritoneal dialysis, which gave him more freedom to sell purses out of his trunk), which led to me serving two years as the ESRD (End-Stage Renal Disease, or kidney failure) Patient Representative for the State of Illinois. The whole freakin' state.
That being one of the factors leading to my being named a Distinguished Alum by my Alma Mater, Hope College in Holland, Mich., in 2019. As the first McFarlin to attend college, how I wish my parents had been alive to see that.
Uniting hundreds of couples in my role as a wedding officiant (under the business name Wholly Matrimony 4U), including the marriage of my son Jordan and his fiancée Graycie last summer.
Emceeing my 50th high school reunion.
Finding an amazing church, Mattis Avenue Free Methodist, that has deepened my love of God and my daily walk with his son, Jesus.
And having more time to spend with you, my readers and friends who mean so much to me, and writing this blog post to you today.
Cheers to us all. God bless. Here's to another 10 years!
Monday, April 12, 2021
It May Not Be the Bee's Knees, But I Hope My Knee Will 'Bees' Better
This is about how my knee feels now. Every day. |
• This will be my first major operation since my kidney transplant at Barnes-Jewish Hospital in St. Louis on November 18, 2011. (Great Googly-Moogly! That was 10 years ago! I just realized that. Suppose I should think about doing some sort of anniversary tribute later this year.) And to tell you the truth, I really don't know how I feel about this week's procedure.
• My surgery initially was scheduled for March 2020, about a week before the world as we knew it flipped upside down and corona became way more than the name of an imported beer. My joint replacement was canceled due to a sudden, urgent need for hospital beds. Then it was aborted a second time in November when the virus spiked again. As a result, I have been in relentless, agonizing leg pain for more than a year, Biofreeze and IcyHot my constant sidekicks.
I have not been a happy cowboy.
As another result, I find myself approaching this week's operation with a feeling of...well, really, no feeling at all. I'm not excited or anxious or nervous or relieved. I was bitter for quite some time over the cancellations and the knowledge that my suffering continued through no fault of my own. But when you've been in pain day after day for months, it sadly becomes part of your normal existence. You learn to live with it. If you can call that living.
(Many deep thanks to Danny McFarlin –– absolutely no relation, unless his family once owned mine –– the physician's assistant who kept me reasonably sane between surgical disappointments with a series of cortisone injections in my knee. He really gave me a leg up.
My Surgeon: 'No-Pain Bane?' |
And while I'm told the pain will be worse after the procedure, at least initially, at this point it's all relative. Besides, fool me twice, shame on everybody. When I'm actually on the gurney with an IV in my arm and being wheeled into the OR, then I'll know it's really going to happen. Until then, I'm keeping my emotions on lockdown.
• The orthopedic surgeon performing my procedure (a total left knee arthroplasty) is one Dr. Robert Bane, who by all accounts is the Dr. Kildare of east central Illinois. I am not exaggerating when I tell you every single person who's asked about my operation has broken into a broad, knowing smile when I answer, "Doctor Bane," followed immediately by, "He's the best."
OH! I misspoke. One woman at my church replied, "I tried to get Dr. Bane, but I couldn't get onto his calendar. (Pause.) He's the best, you know."
Even other doctors praise his holy name, which is rare indeed. Last week my cardiologist broke into a broad smile when Bane's name came up. "You're in good hands," he reassured. Ironically, I have yet to meet him: we conversed briefly via Zoom many months ago, but due to COVID I will not meet the man in person who's going to cut into my flesh until I'm on the table preparing for the anesthesia. I'm in the hands of a near-total stranger. He is, quite literally, the Bane of my existence.
I am absolutely positive I am not the first one to come up with that.
• I know times change over the course of a decade, but I don't remember ever jumping through as many pre-surgical hoops as I have for this procedure. I have had a complete pre-op physical, new X-rays, bone density screening, blood pressure monitoring, a consultation with my cardiologist. Bathe with a special soap the night before and the day of surgery. Sleep on clean sheets. Stop taking vitamins and all supplements. And, of course, the obligatory COVID-19 test.
Good news: here you can take the COVID test without having to leave your car. Bad news: It entails pulling into a line as long as the ones giving out free food these days and enduring what seems like a drawn-out, confusing and disorganized process. Very good news: The Carle system requires patients to simply run a Q-Tip around both nostrils, rather than jamming a stick past the eye and into the brain. Extremely good news: I tested negative, so we can continue to communicate.
• I suddenly came to realize one reason so many pre-op tests are required is because I'm not as young as my brain keeps telling me I am. I was blown away by the number of contemporaries who responded to my Facebook announcement of impending knee replacement with comments like, "Had mine done years ago," "Had both of mine done" or "You won't regret it." One friend even sent me a book of healing techniques after surgeries! Good Lord – my friends are getting so OLD! So thankful I'm retaining my youth.
My knee, without a scar. For posterity. |
• I was grateful that my pastor, Herb Coates, specifically mentioned me and my upcoming surgery during his congregational prayer last Sunday. Prayers are always welcomed. However, since I was manning the Welcome Desk next to the front door after the service, I was an easy target for every parishioner who wanted to inquire about the operation –– which seemed like every parishioner. I swear, I think some of them seemed to care more about my surgery than I do. Is that a good thing?
• I am also so, so grateful for the advancements in medical science. Knee replacements are commonplace now but practically unheard of in America until the 1970s. I think of my Aunt Carrie in Palmetto, Ga., God rest her soul, who made her living by cleaning the local movie theater. In those days you were lucky to have any job, so she worked on her hands and knees, picking up candy and all manner of filth brooms couldn't reach, well into her 80s. What unbearable pain she, and so many other laborers, must have endured!
I'll think of you Wednesday, Auntie. Just before the lights go out.
Thursday, March 11, 2021
Taking My Best Shot: Pondering the COVID Vaccine Controversy
They even give you a sticker! |
A Shot in the Arm for America. |
Tuesday, January 5, 2021
Catching Up With Kimbrough and Cursing Coronavirus
Alex May Be Done With COVID; Is It Done With Him? |
Not in terms of my content or writing skills; they are both consistently outstanding (he said, modestly).
No, I'm a poor excuse for a blogperson because I don't begin to fill this precious space even remotely as often as I should –– tough to maintain a devoted readership that way –– and I am horrible when it comes to followup.
For example, you may recall (but probably don't) that I wrote a post here way back last April about my dear and longtime friend Alex Kimbrough, who was blindsided by coronavirus, spent five days in Detroit's Providence Hospital and has been waging a determined battle to regain his health ever since.
You would think I could have found time to write at least a sentence or two updating you about his condition in nine months, wouldn'tcha? Wouldn'tcha?
And I should be ashamed, because Alex's recent struggles are the stuff of which reality TV series are made. He has not been able to return to his news director's chair at Detroit's FOX2/WJBK-TV, where he has worked for nearly 35 years, since being stricken with COVID-19. Through the grace of God he did not require a ventilator while in the hospital, and after battling with everything his body could muster Alex was declared virus-free and discharged to return home.
Only to be readmitted in September.
Then twice more before the end of 2020, four hospital stays in all. How is he doing today?
"How am I doing? That's a loaded question," Alex deadpanned over the phone recently, his dry wit still the picture of health. Let's start with the physical.
"I want you to know I am not sick. I just have a lot of issues. I haven't been back to the hospital since my fourth visit, so I've stopped doing that. I am once again on medical leave, and I think that's my new thing: I work a few months, then go on medical leave and still get paid. It's a good trick if you can pull it off."
A more impressive feat would be Alex's full and complete recovery. Because you see, amid all the hoopla and headlines over competing vaccines, distribution schedules and slower-then-promised injection rates, these facts must not be forgotten:
• The coronavirus is still running rampant among us, killing thousands of Americans every day with a new and more contagious strain just hitting our shores;
• The vaccines may be a cure, but they are not an overnight solution. It may take months, if not years, before enough of us have been immunized to trigger an end to the pandemic; meanwhile, the wearing of masks (controversial as it may be), social distancing and avoiding large crowds still must be maintained.
• As much as scientists now know about COVID-19, there is so much more that they don't. We have no way of knowing, as in Alex's case, what the long range or side effects will be among those who overcome the virus.
Like me, Alex Kimbrough is African American, 55-plus, and has a body full of co-morbidities. We are the virus' first love. Has COVID-19 affected or exacerbated any of his existing medical conditions?
The results, as you heard said many times in 2020, are undecided.
Alex, the amazing Karen Dumas and me at a book signing. |
"I spoke to my nephrologist [kidney specialist] and told him, 'I now have discovered how I am going to die. I'm going to die from kidney failure.' He said, 'No you won't. You'll probably die from heart disease.'
"He's the doctor I fear the most because he's the most blunt. He's the one who read me the riot act about my kidneys and said that at some point before I go into the ground I'll probably have to undergo the Darth Vader of treatments known as dialysis."
His nephrologist told Alex a transplant might be a possibility for him...someday. "But he said, 'You're too big, way too heavy for that now,'" Alex sighs. "So that's where I am with this. I've got to get healthier, I've got to lose some weight so as to prolong my date with dialysis."
Easier said. Alex has been struggling to lose weight ever since I met him decades ago, once even pairing with an executive chef live on the air during the FOX2 morning news show he produces. That partnership led to dramatic, but unfortunately not sustained, weight loss.
"I will try to make some changes in my diet," he declares again, perhaps this time for keeps. "You know, you go into the hospital these days, they give you services you wouldn't believe. I have access to a dietician, a physical therapist, a nurse, I even have a counselor. We're meeting with the dietician regularly for suggestions of foods that are healthy and kidney friendly."
Meantime, a skin ulcer on Alex's leg grew and became infected, necessitating his other hospital stays. His cardiologist has performed a Venus ablation on both legs, a procedure that involves surgical needles and veins. Without going into great detail, you wouldn't want one.
"I have been spending lo these past few months in incredible amounts of pain every single day," he reports. "The only respite I get is when I am actually able to fall asleep, maybe two hours at a time."
Did his initial hospital stay for COVID lead to his skin ulcer? Impossible to say. But here is my takeaway from all this: even if you are fortunate enough to conquer coronavirus, it doesn't mean you walk away with a clean bill of health. The longterm effects of the virus simply are not known. And that's scary.
At some point last year, more than 300,000 Americans said to themselves, "It's a shame about that COVID-19, but it doesn't affect me or anyone I know. It's going to blow over, like the president says, and I'm not going to get it. I'm going to live my life."
No, they're not: now they are all six feet under, or in a refrigerated semi in the back of a hospital.
Knowing what we do know, I get so pissed off about people who have made the simple (but annoying, granted) act of wearing a mask a political argument. "I'm an American," they boast, "I live in a free country and I can do as I please."
Yes, it's a free country. But with freedom comes responsibility. To your family. To your community. To your nation. To yourself. And no, you cannot do everything that pleases you. You can't walk into Target naked. You can't shoot heroin in the checkout line. So JUST WEAR THE DANG MASK, avoid crowds and take the vaccine when it's offered to you, OK? Otherwise this plague is going to drag on for years, killing thousands upon thousands more.
And for my 2021 resolution, I am earnestly going to try to blog more this year. Some people just live to write; not I. Having been a paid professional writer since my 20s, I write to live, and I often wish I could shift that mindset.
As for Alex Kimbrough, I just want him to live.
Thursday, November 5, 2020
Can Kidneys Create Comedy? I'm Trying to 'B Positive'
Hey, this is a joke, right?
Transplant Pals. (by Pamela Littky, Warner Bros.) |
Thursday, June 4, 2020
I Can Feel That Knee On My Neck, Too
Now THAT'S Symbolism. |
Memorials to George Floyd Are Going Up Across the Nation. |
COVIDQuarantineJoblessnessKobeTrumpBreonnaAhmaud: it all runs together. A steady stream of 2020 indignities. Simmering, churning anger. Pressure. Time on our hands. We can't breathe.