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.

Happy Happy, Joy Joy

As some of you may know, I am proud to serve as Contributing Editor for Live Now: Rethink Kidney Disease, the website hosted by Baxter Healthcare Worldwide urging people afflicted with CKD (Chronic Kidney Disease) and ESRD (End Stage Renal Disease) to reclaim life on their own terms. (And coincidentally, to promote Baxter's in-home therapies like Peritoneal Dialysis – the system I use and advocate – and Home Hemodialysis.)

My latest essay for Live Now, "Don't Worry, Be Happy," has posted to the site. It suggests that maintaining a positive attitude in the face of a serious illness (or any other bad ju-ju, for that matter) can have a remarkably beneficial effect on one's overall health and outlook.

I'm pretty happy with the piece, but then again, I have a positive mental attitude. I hope you like it. I would repost it here in its entirety, but that kind of defeats the purpose of writing for the Baxter website in the first place. (Besides, they pay me.)

So here's a link to the article: http://bit.ly/v6Isp2.

Please do me a favor: Click to the page at least 50-100 times, even if you only read it once, so the people at Baxter will think I'm a wildly popular writer.

Thank you. Be happy.

On the Kidney Kampaign

Just finished a big week on the kidney beat. On Tuesday I was in Waukegan, Ill., home of Baxter Healthcare, where I sit on the company's Patient Advisory Committee team (PACt), to attend one of our quarterly meetings. Then, as luck and good scheduling would have it, on Thursday I stopped in Chicago while on my way home to Champaign to make a presentation to the board of directors for the National Kidney Foundation of Illinois (NKFI).

Even more good timing: Karen, my angel of mercy, happened to have business in Chicago at the same time. So we used the once-grand, now-scruffy Blackstone Hotel in the Loop as our home base for the week. It even allowed Karen the opportunity to join me for the NKFI appearance.

At the Baxter confab, representatives from the company's various renal divisions come to our committee (numbering about 20 on this occasion) to get our reaction to proposed new products, changes to existing products, and to pick our brains about how we use Baxter's goods in the real world. These are scientists, corporate doctors and manufacturers who almost never come in contact with an actual breathing patient.

I've been sworn to secrecy about revealing details from these sessions under threat of slow, lingering death. The Baxter PR honchos get quite skittish knowing there's a former journalist in the room who has a blog read by people concerned with kidney matters. But I think I've been pretty good about keeping their confidences so far.

So far.

In this get-together we met Dr. Cory Sise, a nephrologist and leader on Baxter's medical team, who had her worst fear confirmed by the PACt people: Those product information sheets she and her people spend hours revising and rewording so they're completely accurate and useful?

Nobody reads them.

For me, the keenest insights from these meetings come not from the Baxter executives but from my fellow patients. On this trip, I learned that some people, in order to warm their bags of manual dialysis solution before inserting the fluid into their abdomens, actually stick the bags in the microwave! Yow! I guess if it starts boiling, you should take it out, eh?

The recommended method is to lay the bags on a heating pad so that they warm slowly and thoroughly. Problem is, if you forget and leave them on too long, it can have the same effect as nuking them. Imagine molten lava roaring through a catheter and filling your innards. Burn, baby, burn.

Hearing the other patients' startling admissions prompted me to confess my own preferred means of bag warming: hot water. I go to the bathroom, fill the sink and submerge the bag for three minutes or so. Slow, even warmth. I've learned over the years that the dialysis solution doesn't need to be piping hot; it just needs to be warmer than I am. Inserting liquid inside you that's too cold can be just as painful as solution that's scorching: Yow!

I was afraid to tell any health care professional about the hot water before, for fear they wouldn't approve. These meetings can be so liberating!

The NKFI board of directors retreat (no campfire songs or s'mores, much to my chagrin) was staged in the magnificent Merchandise Mart, and I was invited to give my first-person saga of living with chronic kidney disease and dialysis. Many thanks to Kate O'Connor, CEO of the Foundation, for extending the invitation, and to communications director Anne Black for her gracious assistance on site.

This is a song-and-dance I've performed many times before, as you know, and that might have been the problem. I was not as good as I should have been with my presentation. I'm my own worst critic, of course, but I felt I've been much better in past appearances. However, I learned two important things from the experience.

One, even though it's my own story and I've told it countless times, there is no substitute for rehearsal. ("Excuse me, sir, how do I get to Carnegie Hall from here?" the tourist asked. "Practice, practice, practice," the native replied.) Because I was pulled out of the Baxter PACt meeting briefly Tuesday to share my dialysis "testimony" with new sales reps, I thought that single run-through would be sufficient. It wasn't. I didn't have a clear Point A-to-Point B monologue, and I don't think I articulated it well.

I was delighted that the first followup question in the Q&A portion of my presentation went to Karen. But I think that speaks volumes as to how effective I was that day.

I think I also may have had an internal distraction. The gentleman who preceded me at the NKFI retreat, Baxter renal economic consultant Joe Connor, gave a very long and complex fiscal analysis filled with PowerPoint charts and graphs. It elicited numerous questions from the board members, and it was impossible to judge how long his Q&A session might last.

That was a dilemma, because I had to go to the bathroom! And I was certain that the moment I slipped out to find one, Connor would end his remarks and I would be MIA. So I stayed in my seat, my knees locked tight. I have no doubt my bladder predicament affected my concentration.

So that's the second thing I learned on this journey: When you're getting ready to speak in public and your nerves are running high, go potty before you really need to!

Yow!




 

It's the Pits

Admit it, guys: sometimes, when you're all alone in the bathroom getting ready to go somewhere and you suddenly realize you're out of deodorant, don't you sneak into the medicine cabinet and "borrow" a swipe of your lady's pit juice?

Well, I did one recent morning, and I must say I was shocked by what I found.

In my rush to leave the house I crept furtively onto Karen's side of the bathroom, slipped open her toiletries compartment and grabbed her Dry Idea antiperspirant. Dry Idea, as I'm sure you know, is perceived as a women's product, but SLAP! SPLOOSH! A quick stroke on each armpit, return it to its exact place on the shelf, close the door and no one will be any the wiser.

While placing it back in the cabinet, however, I happened to turn the container around and glance at its ingredients.

Here's what I saw:

In case you can't read the sentence smack in the middle of the label, it reads, "Ask a doctor before use if you have kidney disease."

Say WHA?

I can see consulting your nephrologist if you've been recruited to compete in a beer-drinking contest, or if you're thinking of going on that all-banana diet. But what kidney patient would ever think of asking a doctor's advice on what kind of deodorant to use?

I have scoured the Interweb trying to find information on why Dry Idea is the enemy of anyone with Chronic Kidney Disease. Nuthin'.

I am dying of curiosity. If anybody knows why this particular brand of stink pretty is Kryptonite to weak kidneys, please enlighten me.

In the meantime, this chance incident serves as a reminder to me to always read the product labels. On everything. It's a practice that's especially important when one's system is weakened by illness or disease.

Dry Idea's advertising slogan used to be, "Never let them see you sweat."

No kidding.