The Edge of Darkness

Although it has diminished greatly, I remain in constant abdominal pain as I write this. I just ache. Every now and then, as my severed nerve endings begin to heal, I get eye-watering stabs along my incision line.

For now, most of the area surrounding my hip-to-hip incision is numb. People who've endured similar surgeries tell me full feeling may not come back for years. If ever.

My supply of the really, really incredible prescription painkiller, Percocet, is dwindling rapidly; I cherish every remaining pill like it could pay off the national debt.

My renal doctors in St. Louis have scheduled me for an ultrasound here in Champaign today to rule out the possibility of a blood clot in my new little kidney. Great. A few days later, my PD catheter, now a useless appendage hanging out of my side, will be removed in an outpatient procedure. More pain. More recovery.

My blood pressure, which had been kept artificially low at around 110/70 by medication prior to my Nov. 18 kidney transplant, is now soaring wildly out of control again, Today it was 165/90. The new cocktail of hypertension medicine I've been prescribed has yet to take effect.

Since it was high blood pressure that got me into this mess in the first place, I'm more than a bit frantic over it all. My current health care team doesn't seem to share my sense of dire urgency about the matter. The thought of surging blood relentlessly pounding my delicate, undefiled six-year-old kidney makes me angry and quite sad.

I'm taking more than 40 pills a day, or four times as many as I did on Peritoneal Dialysis (PD). I have become a pharmaceutical stockboy, constantly checking supplies on hand, making frequent restocking visits to my local pharmacy and calling St. Louis for transplant-specific drugs to be delivered by mail. The medications control my day. Half the drugs must be taken with food, the transplant drugs specifically on an empty stomach. I feel like the guy on that antacid commercial: "Eat now, pill now? Pill now, eat later? Wait to eat, pill now? Wait two hours, now eat?"

Until next March, my blood must be drawn every Monday to ensure certain levels are decreasing or maintaining on schedule. For as long as I have a transplant, my blood will be drawn for lab tests on a regular basis.

Did I mention that I can't stand needles?

I don't mean to sound whiny, and if I do, forgive me. I was told before the surgery that depression is frequently a natural post-op emotion, and I may be going through a touch of that right now. I know that ultimately, the pain will end, the medication regimen will become routine, my blood pressure will plunge. But I can't shake the feeling that in many ways, I was better off on dialysis. At least, I felt better. At the very least, I wasn't in pain all the time.

When I was on PD, I didn't worry about much. The daily routine just kind of rolled along, and I pretty much knew exactly what to expect. Now I find I'm constantly worrying about something – organ rejection, my lowered immune system and possible infection (my wife has a cold! Oh, NO!), taking my pills on time, the possibility of a blood clot.

On a conscious level, I know this is a transition period and if I remain patient, much of this will pass. But if having kidney failure has taught me anything, it's that you have to live in the now, that a healthy tomorrow isn't promised to any of us.

Well, I'm in the now. And now sucks.

Fear Factor

A phone conversation the other night with my great good friend over many decades, Larry Kaplan, really served to clarify some issues and emotions for me regarding my recent kidney transplant – emotions I hadn't admitted to anyone, not even myself.

I have known Larry since the first week I set foot in Detroit to work back in 1979. I was the rock critic for The Detroit News then, and the paper's staff photographers deemed it beneath their dignity to shoot rock 'n' roll bands at night for concert reviews. So the entertainment department hired Larry as my full-time freelance sidekick, doing hand-to-hand combat in the photo pit to embellish my meager words with visual splendor. In recent years, he has reserved a bedroom in his spacious condo for me to use upon my frequent return visits to Detroit, sparing me untold amounts of stress, advance scheduling and hotel fees. (Thanks, Larry.)

We hadn't talked since a month or so before the surgery, and he was asking me the kind of simple, direct questions anyone might inquire of an old friend fresh from the scalpel. "Is there a lot of pain?" (Oh, YEAH!) "Will you have to take anti-rejection medication? (For the rest of my life.)"

"Do you feel any different inside?"

Yes, it suddenly occurred to me, I do.

I'm scared.

No, scratch that. Dude, I am terrified.

Beyond the pain of recovery, my body has changed in so many dramatic ways. I'm swallowing three times the medications I was taking while on dialysis – some with meals, some only on an empty stomach, some in the morning, others at bedtime – and until I establish a routine, the sheer scheduling of the doses every day has my head spinning. "You MUST take your medicine regularly!" my post-transplant handbook warns. "Rejection will occur if you skip or stop your immunosuppressive medicine."

No pressure.

But it's more than that. Way more. I have been given an awesome gift – one so precious that sometimes, when I stop to think about it, I am moved to tears. I know that last year alone, more than 4,700 people died while waiting for a matching donor kidney like the one I now have. I know that a family somewhere is experiencing heart-shattering grief for the donor whose organ is giving me a second chance at a full, healthy life.

I know a vast network of supporters I cannot begin to tally – the transplant team, surgeons and nurses at Barnes-Jewish Hospital, my church family at Harvest Bible Chapel Decatur, relatives, friends, relatives of friends, co-workers and clients past and present, total strangers – have been immersed in prayer and positive, affirming thoughts on my behalf. My friend Rochelle Riley, the fine columnist for the Detroit Free Press, summed it up in a Facebook posting this week after my first post-surgery outing: "Yay to Jim McFarlin who's outta the house!" she wrote. "We're all so excited 'round these parts!!!"

No pressure.

I just feel there is so much victory, so much fulfillment of hope wrapped up in all of this. I could not bear the anguish of having to say to these same people at some point in the future, "Folks, my 'dream kidney' is failing...and it's because of something I did."

My immune system is intentionally suppressed. By how much, I have no idea. But living with the idea that a careless cough in the face from a 3-year-old could set my entire personal ecosystem into screaming yellow meemies is going to transform me from Average Sloppy Guy to Anxious Germophobe. I can just feel it. I'm going to make Howie Mandel look like a mud wrestler. I won't be quite as bad as Larry, who used to squirt a person's hand with sanitizer before he would shake it, but I'll be pretty insufferable for a time. Please bear with me.

I'm going to start doing all those things we tell ourselves we need to do to improve quality of life. Make exercise an important part of my lifestyle. Watch what I eat, and eat better food. Balance and manage mind and body, work and leisure. Pray more.

I can do this, Larry, thanks for asking. I have to do it.

I just don't want to screw this up.

A Time of Thanksgiving

Now, let's see: What's different in my life today from one week ago?

• I have a third working, perky little kidney inside of me. Contrary to what most people think, nothing is typically removed from one's body when you have a kidney transplant. Surgeons simply add the donor kidney to the two you already have, and eventually (just like in business) the new guy gains strength and starts taking over. More accurately, the procedure should be called a kidney implant.

• The proverbial racehorse has got nothing on me. I am turning urination into an art form. As kidneys fail, often they lose the ability to manufacture the urine that flushes waste products from your body; in fact, doctors tell me one way they check to see that a new kidney is functioning properly is how quickly it begins to produce urine on its own. Well, since I never stopped peeing regularly, it's like my bladder has become turbocharged. I'm going at least once an hour; I feel like I'm constantly either thinking about going, going, coming back from going or trying not to go on myself. This eventually will taper off, but right now the new member of the body is obviously just showing off. Whiz kid.

• I have two tubes sticking out of my body instead of one. In addition to "YouTube," my PD dialysis catheter and constant companion the last two years, I also now have what's called a Jackson-Pratt, or "JP" catheter, to pull the excess drainage from my incision into a bulb pinned to my clothing to speed the healing process. Eventually both catheters will be removed from my midsection, but the "JP" won't get yanked until its daily fluid output is less than 0.5 percent. Right now it's at 4.0. Grrrr.

• I am now diabetic. At least, temporarily. Because the steroids used during the transplant played hanky-panky with my blood sugar levels, I now have what is called "steroid induced diabetes." I received my own blood glucose monitor, test strips and instruction session at Barnes-Jewish Hospital in St. Louis, and until my levels drop and stabilize I have to test myself in the morning, nighttime and before every meal, just like my wife, Karen, who suffers from the more permanent brand of diabetes. Oh, we're just poking ourselves now all over the house! You know, the family that pricks together, sticks together.

• I am in considerable pain, although amazingly far less than I anticipated. I think I may have written in a previous post that surgeons say the transplant operation generally consists of a small, hardly noticeable incision on the right side of the abdomen where the new kidney is neatly tucked in. They lie. They cut me like I was being dressed for the butcher's window, including a hip-to-hip slice beneath my waistline that's being held together with staples. I couldn't help but mention this discrepancy to my transplant surgeon, Dr. Jason Wellen, the surgical director of kidney transplantation at Barnes-Jewish – or, as one of my pre-op nurses described him, "Our golden boy of kidneys." "Hey, you're a big fellow," Dr. Wellen explained. "We had to go deep to make sure those blood vessels were tied off properly." I knew there'd come a day I'd regret being this tall.

• My daily pill regimen has increased to more than 30, almost twice as many as when I was on Peritoneal Dialysis. It's necessitated a slight change in my pillbox carrying case: old one on the left, new one on the right.

The majority are new drugs for anti-rejection or to suppress my immune system, which I will have to take for the life of my transplant. (Hopefully, the rest of my life.) But there currently are also some really outstanding pain medications, and I can completely understand how someone undergoing major surgery could get hooked on pain pills and not want to stop taking them. They make the pain just faaade awaaayyy...zzzzzz.


• I have an even deeper admiration and adoration, if that's possible, for my incomparable wife, Karen, who will put her life and career on hold for the next several weeks to take an extended FMLA leave so that she can care for my needs. I can't drive for at least two weeks, so she will be ferrying me to my followup appointments in St. Louis and in Champaign, along with doing all the cooking and the housework I usually take upon myself. And all with a smile on her lips and a song of compassion in her heart. (At least, for now!) How lucky can one guy be? I am so looking forward to hanging out with my best friend every day in these days to come and just enjoying each other's company as my health and strength continue to improve.

• Thankfulness. I don't think I've ever been more humble, thankful or appreciative than I am this holiday season. When you hear phrases like "golden boy" and "you got a dream kidney," you begin to realize that everything fell into place through the power and grace of God. All the prayers, all the friends, all the health care professionals, the surgical team: I could be saying "thank you so much" for the rest of my life.

So I'd better start now. To all of you: Thank you so much. Happy Thanksgiving.

L'chaim: To Life!

By Karen McFarlin
Jim asked me if I would serve as guest blogger today to share the details of our Great Adventure while he continues to try and sneak a peek at his incision. I'm honored, and happy to oblige.
I thought it might be interesting to offer you a timeline of our last 10 wild, wooly, dramatic days.


Tuesday, Nov. 8: My Mom leaves on a dream trip to China. Jim and I move in with Dad to help out with the Wonder Twins, Madison and Emma.

Wednesday: Jim drives to Deerfield, Ill., for three days to give one-man speaking presentations for the company that makes his dialysis supplies.

Saturday: Jim and I, Wonder Twins in tow, drive to Grand Haven, Mich., where we were blessed to attend the wedding of possibly the most beatific couple ever, Andrew & Kathryn Huhn. Ah, young love.

Sunday: I wake up with a sore throat. We drive home with the Wonder Twins, plus six brand-spankin’-new goldfish (originally the wedding reception table decorations, rescued by Jim at the twins’ pleading). I was swayed by the refrains of “Poor, poor Roddy, flushed down his own potty” from that unforgettable film Flushed Away.

Monday: My sore throat morphs into full-blown stomach flu. Five goldfish remain. (R.I.P., Winston.)  Jim drives back home to receive the monthly delivery of dialysis supplies. (If only we could back up that truck now!)

Wednesday, Nov. 16: Mom returns from China. Aunt Marcia arrives for a holiday visit from Ketchikan, Alaska. I emerge from the sick bed.  Four goldfish remain. (R.I.P., fish whose name changed too many times to recall.)

Thursday, November 17: Jim and I finally drive home to Champaign in separate cars after being on the road for nine straight days. Jim goes to Da Vita Dialysis for his monthly checkup with his nephrologist, Dr. Attia, who registers surprise that we haven’t received another kidney call. (This is called foreshadowing.) Exhausted and a bit grumpy, Jim returns to the apartment and ignores his phone when it flashes, “Unknown Caller.” When my phone rings moments later, I answer it. Trish, the kidney transplant coordinator from Barnes-Jewish Hospital, is on the other end. I rush into the living room and Jim is now parked in the bathroom. The call of the lifetime…nearly missed because of a bowel movement. Jim finishes his business – verrry slowly in my opinion – and returns Trish’s call at approximately 3 PM.

3 PM:  Barnes has located a kidney for Jim, and he’s the primary recipient. How soon can we get to St. Louis? “Four hours,” we declare, totally guessing. We praise God that our bags are still packed and in the car from Decatur trip.

3:15: I frantically coordinate logistics with my office. I am scheduled to make two major presentations the next day in Kankakee, Ill., at an all-staff retreat. My brain is stuck in quicksand and cannot find words that I desperately need, such as table, keys and phone.

4:15 – 7:30: We leave Champaign and race to St. Louis. I am furiously making notes and tweaking my presentations to send to my boss. We finally see the Gateway Arch rising over the Mighty Mississippi. In my transplant-addled state, I blurt out, “Honey – the Golden Gate Arch!” and immediately realize that I have mashed up McDonald’s, the Golden Gate Bridge and the Gateway Arch. We laugh and burn off some tension.

7:30: Arrive at Barnes-Jewish Hospital. Wait in Admissions.

8 PM: Admitted. Quickly become concerned that the wheelchair guy, who works here, can’t find the elevator to the 16th floor. I Impatiently show him to the elevator, which is a single turn from where we started. Wonder, fleetingly, if I really might have control issues.

8:05: No rooms at the inn. Miraculously, Barnes received SIX donor kidneys on Nov. 18! Primary and backup recipients for each kidney have filled all available rooms on the 16th (renal) floor. We spend the next 14 hours in a holding room designed for quick assessments with three beds and sliding curtains between them (stable and manger, anyone?). Frustrated that no one is telling us anything, but tempering the frustration with thankfulness. We discuss at length how this time feels different from the non-starter last June. We consider how so many details, great and minute, have worked out this week and conclude this is God’s handiwork at its finest. We start to allow ourselves to hope.

8:05 PM – 10:30 AM: Restless hours. Heavy Facebooking and texting. Little sleep. No food or drink for Jim. Purposely ask family not to drive to St. Louis until we have a surgery time.

10:30: Nurses come in and say we’re going. NOW. Panic begins. Alert parents to mobilize. I stash our worldly goods in a wheelchair and sprint after Jim’s gurney. We rush down to the surgical prep area. The joint is packed and jumpin’. We meet the transplant team together and learn for the first time that the cross-matching is good and Jim is getting a new kidney. We leave nothing unsaid between us and pray together. And then Jim was gone.

12 noon: In the surgical waiting room alone. Massive Facebooking and texting. Prayers pouring out on Jim’s behalf, literally from around the world. I remember that this vast family of faith will uphold us, that God is always faithful, and I relax a little.

12:30: Mandi calls from the operating room. Jim is under. Let the transplant begin! Finally eat lunch in the cafeteria.

1:30: Parents arrive.

2:30:  Mandi calls from the operating room. Nearly finished. Smooth sailing, no transfusions needed.  Flooded with relief. Reality starts to dawn.

3:00: Our pastor, Tony Caffey, his lovely wife, Sanja, and their ridiculously darling son, Alastair, join us from Arthur, Ill. Alastair and I play Angry Birds with a vengeance. This sweet boy distracts me as time passes slowly.

3:30: Dr. Wellen, the transplant surgeon, calls. Jim McFarlin has a perfect little kidney inside him. Going into post-op. Much rejoicing. Many tears. Prayers of thanksgiving. More Angry Birds.

4:30: BUZZ! McFarlin, party of two – Your husband is ready. Tony and I visit with Jim for five glorious minutes! Unbridled joy.

4:35: Return to surgery waiting room. Circle of prayer. Wrapped the donor’s family in prayer and cried for their loss.

5:45:  BUZZ! Mom and I get five more minutes with Jim.

6:30: Quick dinner in cafeteria with Mom and Dad while we wait for Jim to arrive on the 16th floor.

7:45: HALLELUJAH! Jim is settled into his room and is groggy, but lucid. No pain! We spend the rest of the evening pretty much just looking at Jim. My parents eventually leave to enjoy the gracious hospitality of dear friends Eric and Cheryl Schweitzer. I spend the night with Jim, watching him and offering prayers of thanksgiving.

Conclusion: Our new day has dawned and we cannot wait to dash off to parts unknown at a moment’s notice, unfettered by a cycler, heavy solution bags and all the dialysis accoutrements. One day in the future, we hope to have contact with the family of our donor. But today, we want to thank all our friends and family – and many unknown, yet interested strangers – for the prayers, love and support. We could literally feel your arms around us. We love you all.

Psalm 27:13-14 says: I would have lost heart, unless I had believed that I would see the goodness of the LORD in the land of the living. Wait on the LORD; Be of good courage, and He shall strengthen your heart; wait, I say, on the LORD!

Promise fulfilled.

P.S: Goldfish total unknown.

Don't Badmouth the Blessing

Any fool knows better than to look a free horse in the choppers or belittle any blessing, no matter how great or small. But I'm not just any fool.

I'm speeding toward Barnes-Jewish Hospital in St. Louis again as I write this, trying hard to feel more excited and appreciative about The Second Calling.

First, however, I think I need a nap.

The transplant office at Barnes-Jewish called around 3:30 p.m. on Thursday the 17th. They have a cadaver kidney that looks to be a blood and tissue-type match for mine, and I am the primary recipient. How fast can you get to St. Louis? the transplant nurse asked, excitedly.

It's about a three-hour drive from Champaign to St. Louis. And the good news was, we didn't even have to pack our bags. Karen's suitcase, in fact, was still in her car.

We had been on the road and away from home for nine consecutive days. Mostly we were helping my father-in-law, Larry, care for the tempestuous twins, Madison and Emma, while my mother-in-law, Linda, took a well-deserved, once-in-a-lifetime week's trip to China. In the interim, I traveled to Deerfield, Ill., north of Chicago, to deliver two patient presentations at the company that manufactures my dialysis supplies, and Karen and I took the twins with us to West Michigan to attend the wedding of our great good friends Gayle and Walker Parmelee's wonderful daughter, Kate, to the equally wonderful Andy Huhn. (Congratulations, kids.)

In my spare moments, I was ghostwriting one book and editing another. I was homesick and exhausted when we stumbled into our apartment Thursday afternoon. I had just dragged my suitcase over the threshold, willing to trade all my riches for a hot shower, a change of clothes and the chance to sleep in my own bed again.

Then the phone call came. Don't tell me God has no sense of humor.

Now I'm in Barnes-Jewish, waiting to hear if the surgery will be a go or no-go. As we've mentioned previously in these pages, about a dozen things have to go exactly right before a transplant can take place, and medical people always err on the side of caution.

So I've been trying to catch some sleep overnight on a hospital bed (HAHAHAHAHA!) and thinking that if the surgery does go off Friday morning, it'll be at least another week before my head hits a familiar pillow again.

I am thankful for this, really I am. Had the call come one day later, after I'd had a chance to swap out my dirty underwear, I'm certain I would have been ecstatic. This is an event that will affect the rest of my life, but ironically it's a lot like death – it comes when it comes, and you're never quite ready when it arrives, wishing you had just one more day.

Let's just praise God and pass the scalpel, shall we? I'll keep you posted.

Always in Love With Amy

You know how there are people in your life who quietly inspire you every day just by their presence, but you don't take the opportunity to tell them so? I'm going to correct that oversight for myself right now.

Or should it be, "correct that oversight for me"? Amy Lynn Smith would know. This is my dear friend Amy:

Several years ago we worked together (or to be perfectly accurate, she worked for me) at the Campbell-Ewald ad agency where I was an editorial supervisor and she was the publishing division's No. 1 freelance writer. I was constantly impressed by her work, and her work ethic. 

Her versatility was surpassed only by her productivity. Whether she was writing about automobile batteries or skillfully constructing a CEO profile, her finished product was always thorough, interesting and perhaps most important for an editor, on deadline. As punctuality and I never have been bosom companions, her ability to take on and juggle multiple assignments at once and get them all done on time remains her most amazing attribute in my eyes.

Writers, like most creative people I know, are insecure, jealous little creatures. (If you disagree, I invite you to watch any televised awards show.) Whenever a writer I know completes a major, well-received project or earns a prize for their work, a little surge of "Why can't I be that good?" of "It should have been me!" wells up in my throat. I never once remember feeling that way about Amy. My admiration for her talents – and they are myriad, on the page and on the stage – is genuine and absolute.

I'm a full-time professional writer, but I have the backstop of a wonderful wife who pulls down a management salary at the University of Illinois should my energy wane or my assignments dwindle. Writing is Amy's total livelihood: If she's not stringing words  together, there's no food on the table and the banker's at the door. That's called pressure to produce in my book, yet she performs every day with consummate grace and skill.

Yet through it all, she has found time to create and launch a very beautiful and informative business website (take a peek around it here) – please don't look at mine; it's still in bits and shambles after a year, because I keep convincing myself I don't have a spare moment to work on it. 

Yeah, suuuure. Amy, please try not to laugh and point.

And now, the ultimate: Amy has accepted the challenge of National Blog Posting Month (NaBloPoMo) to deliver a fresh blog post every single day in November. Thirty consecutive new blogs, on top of her daily workload.

Hokey mokey.

Well, Amy, m'dear, I treasure you, but I'm going to admire you from afar on this one. That's not going to happen here at Little Jimmy's Just Kidneying outpost. It doesn't help my enthusiasm that I get paid to write about television and your recent blog about House is as good as anything I've written lately.

Is there nothing you can't do? You big showoff.

But you do inspire me, Amy Lynn Smith, to be a better, more productive, more trustworthy scribe every day. Hey, this is my second blog posting this week! See how I'm influenced by you?

Tat's My Wife

WARNING: This blog entry may make tears flow from your eyes, clog your nose with mucus, and leave you honking and weeping like a blubbering idiot. At least, it did for me. You may be different. Just in case, you may wish to read this in a dark room by yourself. 


You would really like my wife, Karen. Practically everyone who knows her does. She is genuinely one of the sweetest people I have ever met, not to mention kind, funny, smart, spiritual and practical. Real pretty, too. It's as if God grabbed a golden ray of sunshine and placed it in her soul.

                                                                             This is Karen.

She is a mature, responsible woman who is just slightly older than 21, a longtime executive at the University of Illinois. Which is why her recent declaration shocked the pu-pu platter out of me.

"I want to get a tattoo," she announced.

"I beg your pardon," I replied, certain she must have said something about Hervé Villechaize on Fantasy Island.


"I'm going to get a tattoo." She went on to explain that she'd secretly always wanted one and decided the time had come today.

"But what kind of design do you have in mind?" asked I.

You may remember back in June when I was in Barnes-Jewish Hospital in St. Louis and minutes away from receiving a kidney transplant but got false-alarmed instead? (If you don't, and want to experience that heartwarming feeling for yourself, you can read the blog entry here.) At that time, our 11-year-old, Madison (who now, thanks to adoption, is also my sister-in-law), took it upon herself to create a work of art to brighten my hospital room, complete with an appropriate Bible verse:

The verse is Psalm 73:26. It reads, "My health may fail, and my spirit may grow weak, but God remains the strength of my heart. He is mine forever."

We all were moved by Maddie's gesture, but apparently no one was more affected than Karen.

"I want that Bible verse on my wrist," Karen said, "with a drawing of a small kidney above it."

"The whole verse?" I asked, incredulous.

"No, silly. Just the book and the chapter."

"Wow," I replied. "Maddie's drawing meant that much to you?"

Karen's eyes glistened, with that look that says, "You don't get it, do you?"

"I've always wanted a tattoo," she said softly. "There's just never been anything in my life so important to me that I wanted it on my body permanently."

Aw, shucks.

After a bit of research, Karen decided to have the deed performed at the 217 Tattoo Co. next to the U of I campus. (After all, what better place to get your first tattoo these days than near a university?) I didn't get the sense that her tattoo artist was a Biblical scholar, but he was very kind and understanding.

I had planned to take photos of the inking as it was unfolding, but I found myself just holding her other hand during the process, expressing concern and offering support. "Does it hurt? Does it hurt?" I kept asking. She kept assuring me that she was doing fine, Karen came through the affair like a tattoo veteran – better than I did, in fact.

And here is the result:

Karen and the artist debated tiny details, like whether it should be "Psalm" or Ps." (more work, less confusion), or if there should be a line through the "7". But the finished product seemed to delight everyone involved, no one more than Karen.

Now that it's had some time to settle in, some people have guessed the drawing is a little bean, even a small brown penis. But Karen and I know better. And long after I finally receive my kidney transplant, we will have a special bond to share for all time.

Oh, what a lucky man I am.