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.
Sunday, December 18, 2011
Friday, December 2, 2011
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.
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.
Thursday, November 24, 2011
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.
• 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.
Sunday, November 20, 2011
L'chaim: To Life!
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.
Friday, November 18, 2011
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.
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.
Friday, November 4, 2011
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:
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?
Monday, October 31, 2011
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.
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.
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.
Wednesday, October 26, 2011
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.
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.
Wednesday, October 5, 2011
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!
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!
Monday, September 19, 2011
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.
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.
Wednesday, August 31, 2011
The Arkansas Traveler
So, where are all the hot springs?
Oh, I see. There's a town in Arkansas called Hot Springs. Sorry. My bad.
OK, then, where are all the little rocks?
Better little rocks than kidney stones, I suppose.
I finally made it to the state capital of Arkansas last week to attend the 38th annual convention of the American Association of Kidney Patients (AAKP), my reward for winning the Renal Network's 2011 Robert Felter Memorial Award. And I hope that the citizens of the great state of Arkansas and the South in general understand that all those disparaging, smartyboots comments I've made in previous blog posts about taking this trip were simply for comedic effect and never intended to be taken at face value.
Kinda.
But seriously, folks, I found Little Rock to be a quaint and captivating little American city, filled with some of the most disarmingly friendly people one could ever wish to meet. Southern hospitality is alive, well, and living in a land that celebrates Bill Clinton and feral hogs, not necessarily in that order.
It is the smallest town ever to host the kidney conference. I asked Jerome Bailey, communications manager for AAKP, if this was the first time the convention ever had been held outside the organization's home state of Florida.
"Oh, no!" he replied. "We've held it in Los Angeles, Las Vegas, Chicago...."
Nice award. Wrong year. I coulda had Vegas!
I was impressed by signs in Little Rock National Airport informing arriving visitors of "Airport Angels" scattered throughout the terminal who were ready to offer directions, answer questions and generally act as ambassadors for their beloved village.
At Detroit Metro Airport, the only angels you're likely to see are Hell's.
This is the lobby of the hotel where the convention was held, the historic Peabody, billed as the most lavish accommodations in the state.
The lobby alone is enough to dispel whatever stereotypes I may have held about Little Rock. The Peabody is opulent, its rooms upscale. As you may know, however, in summer Southern Heat is far different from Northern Heat. In August, Northern Heat feels like a thick wool blanket wrapped around your entire body. Southern Heat is the same blanket, but soaked in hot water and pressed against your face as well.
To compensate – and possibly to appease us cranky Northerners – the interior of the Peabody was air conditioned to a temperature somewhere around sub-Arctic. Never have I been so cold in a large building before. By the second day, at every session I was wearing the heavy sweatshirt I was so thankful I had packed.
The Peabody chain, as you might know, is world renowned for its Peabody ducks, a tradition begun in Little Rock. Every day, promptly at 11 a.m., a flock of five ducks waddle down a red carpet and dive into the hotel's lobby pool, where they flap and frolic until 5 p.m. when they return to their evening quarters with much pomp and fanfare.
A word to the wise: If dining in the hotel restaurant, never ask for the roast duck entrée. Bad form.
I did make it to the William J. Clinton Presidential Library and Museum, which as you can imagine is a source of great pride to the local citizenry.
Regardless of your political leanings, you should visit presidential libraries whenever you get the chance, if for no other reason than to touch a period of American history. The Clinton museum was hosting an Elvis Presley exhibit, which if you remember Bill Clinton makes complete sense. The museum also has on display the saxophone Clinton played on The Arsenio Hall Show the night he essentially secured the nation's black vote.
However, I looked all over for the one thing I really wanted to see, but never found it: the definition of what "is" is.
The three-day convention offered breakout sessions with titles like "Preparing Yourself for Dialysis" and "The National Kidney Registry: Understanding the Kidney Exchange Program." They were extremely informative, but no more so than my fellow attendees.
Here I am with my new friend Brad Mayfield. (No relation to the late R&B immortal Curtis, as far as he knows.) Brad and I talked at length about our individual journeys. I got to ask him how it felt to receive a kidney transplant, lose it through organ rejection and then rebound, physically and emotionally.
The greatest component of the AAKP convention was the feeling of being surrounded by hundreds of people who could relate exactly to what you've been going through. I met people who have been on dialysis for 30, 40 years and are still going strong.
No place for a scintilla of self-pity here. What's that old saying, "I cried because I had no shoes until I met a man with no feet?"
Just call me Shoeless Jim.
Tuesday, August 23, 2011
Rockin', Just a Little
This is the week I fly to Little Rock, Ark., to accept my "prize" for winning the 2011 Robert Felter Memorial Award from the Renal Network. My reward is an exciting weekend in exotic, romantic Little Rock, to attend the annual convention of the American Association of Kidney Patients (AAKP).
What's more, I get to write about my experiences for the Renal Network. For free. As a professional writer who makes his living getting paid to string words together, I can't begin to tell you how happy that prospect makes me. Seriously, I can't tell you. Is there no end to the wonderfulness stemming from this honor?
The 2010 AAKP convention was in Tampa, Fla. Like Maxwell Smart used to say, "Missed it by that much."
This week the AAKP sent out an email titled "Things to Do in Little Rock!" It reads, in part:
"Little Rock is an exciting city with a vibrant downtown and entertainment district, a wealth of unique sightseeing, day trip and tour opportunities, excellent restaurants, shopping and museums!
"Famous as President Clinton's first capital city, the cradle of the civil rights movement, and the center of the beautiful Natural State, no city represents a bridge from the treasured past to the exciting 21st century than Little Rock."
Really? No other city? Anywhere? Wow!
Sounds to me like they're trying to suck up to the members who loved meeting in Tampa last year.
And did you know Little Rock was the "cradle of the civil rights movement"? I always thought Rosa Parks boarded that bus in Montgomery, Ala., not Little Rock. Maybe she got a transfer.
"Say you had only 24 hours to take in the sights and sounds of Little Rock?" the email asked. "What would you do?" Well, I probably would stay in my hotel room. But the convention hosts suggest:
• The River Market and downtown Little Rock (every city has a downtown, and almost all have markets; keep going)
• The Old Mill (as apposed to the New Mill?)
• The William J. Clinton Presidential Center (OK, they've got me there; presidential libraries are typically way cool. Wonder if Monica's dress is on display?)
• Little Rock Central High School National Historic Site (where, in 1957, nine brave black teenagers stood up to a raging, racist mob protesting integration at the school, providing the first major test of the Supreme Court's Brown vs. Board of Education decision. Maybe Little Rock isn't the cradle of civil rights; more like the incubator.)
• Craters for Diamond State Park (I didn't book a hotel room so I could go camping; unless, of course, this park has real diamonds.)
The message also pumps Little Rock as "the dining capital of Arkansas," which I trust isn't the same as "the cesspool capital of New Jersey." They recommend eateries named The Pantry, Whole Hog Café & Catering, and Brave New Restaurant. Brave New Diners might be more like it.
Open mind. Open mind. Little Rock is a state capital, after all. Then again, so are Lansing, Springfield and Cheyenne.
I always try very hard to have a good time no matter where I happen to be. I'll let you know if my track record remains intact after this weekend.
What's more, I get to write about my experiences for the Renal Network. For free. As a professional writer who makes his living getting paid to string words together, I can't begin to tell you how happy that prospect makes me. Seriously, I can't tell you. Is there no end to the wonderfulness stemming from this honor?
The 2010 AAKP convention was in Tampa, Fla. Like Maxwell Smart used to say, "Missed it by that much."
This week the AAKP sent out an email titled "Things to Do in Little Rock!" It reads, in part:
"Little Rock is an exciting city with a vibrant downtown and entertainment district, a wealth of unique sightseeing, day trip and tour opportunities, excellent restaurants, shopping and museums!
"Famous as President Clinton's first capital city, the cradle of the civil rights movement, and the center of the beautiful Natural State, no city represents a bridge from the treasured past to the exciting 21st century than Little Rock."
Really? No other city? Anywhere? Wow!
Sounds to me like they're trying to suck up to the members who loved meeting in Tampa last year.
And did you know Little Rock was the "cradle of the civil rights movement"? I always thought Rosa Parks boarded that bus in Montgomery, Ala., not Little Rock. Maybe she got a transfer.
"Say you had only 24 hours to take in the sights and sounds of Little Rock?" the email asked. "What would you do?" Well, I probably would stay in my hotel room. But the convention hosts suggest:
• The River Market and downtown Little Rock (every city has a downtown, and almost all have markets; keep going)
• The Old Mill (as apposed to the New Mill?)
• The William J. Clinton Presidential Center (OK, they've got me there; presidential libraries are typically way cool. Wonder if Monica's dress is on display?)
• Little Rock Central High School National Historic Site (where, in 1957, nine brave black teenagers stood up to a raging, racist mob protesting integration at the school, providing the first major test of the Supreme Court's Brown vs. Board of Education decision. Maybe Little Rock isn't the cradle of civil rights; more like the incubator.)
• Craters for Diamond State Park (I didn't book a hotel room so I could go camping; unless, of course, this park has real diamonds.)
The message also pumps Little Rock as "the dining capital of Arkansas," which I trust isn't the same as "the cesspool capital of New Jersey." They recommend eateries named The Pantry, Whole Hog Café & Catering, and Brave New Restaurant. Brave New Diners might be more like it.
Open mind. Open mind. Little Rock is a state capital, after all. Then again, so are Lansing, Springfield and Cheyenne.
I always try very hard to have a good time no matter where I happen to be. I'll let you know if my track record remains intact after this weekend.
Monday, August 1, 2011
Left Holding the Bag
I have just returned home from a grueling 11-day sojourn to Chicago, Florida, back to Chicago and off to Muskegon, Mich., to research my current book, conduct interviews and act as emcee at the wedding of my childhood friend's youngest daughter. Eight different cities, five different hotel beds and countless restaurant meals in a week and a half.
I'm pooped. And just a bit backed up.
And at every stop along the way, my trusty Baxter Home Choice® Automated PD (Peritoneal Dialysis) Cycler machine has been by my side. I realized recently that I haven't really said much about my PD cycler in these musings, which is a sin and an oversight because it's the primary reason I continue to feel as well as I do. In the latest issue of LifeLines, the national patient newsletter of DaVita, a fellow PD user from San Antonio named Jack White describes the procedure more simply and completely than I could:
"The process is so simple most anyone can use PD. First you need a port inserted in the wall of your abdomen. This requires a minor surgery. The cavity in our abdomen that contains the stomach and intestines is called the peritoneal cavity. The lining of the cavity is called the peritoneum and is filled with tiny blood vessels.
"In PD the peritoneum acts as a filter. The peritoneal cavity is filled with a dextrose solution that draws the impurities out of the blood in all of those blood vessels in the lining.
"We hook the solution bags up to the port in my abdomen. The entire process works on gravity. [There's a] drain bag on the floor for the bad stuff.... First the old stuff is drained out of my abdomen into the bag on the floor. The new dextrose solution fills my abdomen and the exchange is done. I'm ready to resume my daily activities. The PD cycler machine is a little computer that directs the swtich back and forth from drain to fill."
The miraculous Baxter Home Choice® PD Cycler.
It really is an amazing device, especially when you consider that the alternative is traveling to a faraway, antiseptic dialysis clinic multiple times each week, having all your blood sucked out of your body and pumped back in, and being surrounded by masked attendants and fellow sufferers you don't know.
I could not possibly travel as freely and frequently as I do without my cycler. And let me just take a moment here to tell you how wonderful Baxter is. On this trip, after almost two years of near-daily use, eight hours a day, my trusty cycler emitted an ear-bending beep and breathed its last. To make matters worse, its death occurred on the last day of my hotel stay in Sarasota, Fla., and I had not yet reserved my next room somewhere near Miami.
I called Baxter's technical support line and explained my dilemma. "Well, where will you be tomorrow?" my tech, Matt, asked.
"I have an interview in Miami Lakes at 11 o'clock," I said.
"How long will you be there?"
"Two hours or so, I guess."
"Bring your old machine with you. We'll have someone meet you there and swap it out for a new one."
And, sure as the IRS, the next day a Baxter driver arrived at my interview location with a brand spanking-new cycler, dropped it off with the receptionist and took the old unit away before my appointment was concluded. Who says service has gone the way of the Nehru jacket? Very impressive.
The cycler weighs more than 30 pounds, and since it costs more to replace than I'll probably make this year, it never leaves my sight when I'm on the road. I carry it with me on board planes, usually without hassle from the TSA or flight attendants, and because I never know how far it is from my airport arrival gate (why is it always Gate 99?) to the baggage claim, I often swallow my pride and request a wheelchair assist from the gate. Usually, once I sit in the chair and they pile my cycler and briefcase in my lap, no one can see me anyway.
I have tried to make the trek from the gate without a wheelchair. In my slightly weakened condition it feels like dragging a boulder across the desert. At least, that's what I look like I've done by the time I reach the carousel.
Here's my rub: While the cycler rides for free, the supplies it needs to operate – the drain bags, filtering cassettes, clamps, tape and the like – take up so much space they require a separate bag of their own. And American Airlines, which I flew on this trip, licking its greedy chops over the prospect of additional gouging, charged me an extra $60 for that bag of supplies each way of my journey.
That's right. Pick on the sick kidney guy.
I try very hard to fly Southwest, which has no oppressive add-on baggage fees, whenever I can. But there are some places Southwest doesn't go. I'm told there is a way around the extra charge for essential medical supplies. and if anyone knows about this, please educate me. Meanwhile, I'm going to do some research on my own.
I've got another trip, to Little Rock, set later this month. I don't want to be left holding the bag again.
I'm pooped. And just a bit backed up.
And at every stop along the way, my trusty Baxter Home Choice® Automated PD (Peritoneal Dialysis) Cycler machine has been by my side. I realized recently that I haven't really said much about my PD cycler in these musings, which is a sin and an oversight because it's the primary reason I continue to feel as well as I do. In the latest issue of LifeLines, the national patient newsletter of DaVita, a fellow PD user from San Antonio named Jack White describes the procedure more simply and completely than I could:
"The process is so simple most anyone can use PD. First you need a port inserted in the wall of your abdomen. This requires a minor surgery. The cavity in our abdomen that contains the stomach and intestines is called the peritoneal cavity. The lining of the cavity is called the peritoneum and is filled with tiny blood vessels.
"In PD the peritoneum acts as a filter. The peritoneal cavity is filled with a dextrose solution that draws the impurities out of the blood in all of those blood vessels in the lining.
"We hook the solution bags up to the port in my abdomen. The entire process works on gravity. [There's a] drain bag on the floor for the bad stuff.... First the old stuff is drained out of my abdomen into the bag on the floor. The new dextrose solution fills my abdomen and the exchange is done. I'm ready to resume my daily activities. The PD cycler machine is a little computer that directs the swtich back and forth from drain to fill."
It really is an amazing device, especially when you consider that the alternative is traveling to a faraway, antiseptic dialysis clinic multiple times each week, having all your blood sucked out of your body and pumped back in, and being surrounded by masked attendants and fellow sufferers you don't know.
I could not possibly travel as freely and frequently as I do without my cycler. And let me just take a moment here to tell you how wonderful Baxter is. On this trip, after almost two years of near-daily use, eight hours a day, my trusty cycler emitted an ear-bending beep and breathed its last. To make matters worse, its death occurred on the last day of my hotel stay in Sarasota, Fla., and I had not yet reserved my next room somewhere near Miami.
I called Baxter's technical support line and explained my dilemma. "Well, where will you be tomorrow?" my tech, Matt, asked.
"I have an interview in Miami Lakes at 11 o'clock," I said.
"How long will you be there?"
"Two hours or so, I guess."
"Bring your old machine with you. We'll have someone meet you there and swap it out for a new one."
And, sure as the IRS, the next day a Baxter driver arrived at my interview location with a brand spanking-new cycler, dropped it off with the receptionist and took the old unit away before my appointment was concluded. Who says service has gone the way of the Nehru jacket? Very impressive.
The cycler weighs more than 30 pounds, and since it costs more to replace than I'll probably make this year, it never leaves my sight when I'm on the road. I carry it with me on board planes, usually without hassle from the TSA or flight attendants, and because I never know how far it is from my airport arrival gate (why is it always Gate 99?) to the baggage claim, I often swallow my pride and request a wheelchair assist from the gate. Usually, once I sit in the chair and they pile my cycler and briefcase in my lap, no one can see me anyway.
I have tried to make the trek from the gate without a wheelchair. In my slightly weakened condition it feels like dragging a boulder across the desert. At least, that's what I look like I've done by the time I reach the carousel.
Here's my rub: While the cycler rides for free, the supplies it needs to operate – the drain bags, filtering cassettes, clamps, tape and the like – take up so much space they require a separate bag of their own. And American Airlines, which I flew on this trip, licking its greedy chops over the prospect of additional gouging, charged me an extra $60 for that bag of supplies each way of my journey.
That's right. Pick on the sick kidney guy.
I try very hard to fly Southwest, which has no oppressive add-on baggage fees, whenever I can. But there are some places Southwest doesn't go. I'm told there is a way around the extra charge for essential medical supplies. and if anyone knows about this, please educate me. Meanwhile, I'm going to do some research on my own.
I've got another trip, to Little Rock, set later this month. I don't want to be left holding the bag again.
Tuesday, June 28, 2011
This Award-Winning Blog
In all the recent kidney konfusion, I nearly forgot to tell you: Today I am an award-winning blogateer.
You are looking at – OK, to be perfectly accurate, you're reading – the recipient of the 2011 Robert Felter Memorial Award from the Renal Network, Inc., given to "honor individual renal patients for their contribution to fellow patients and their families through service, outreach and education." Impressive, no?
I'd never heard of it before either.
Actually, it was the social worker at my DaVita dialysis clinic in Decatur, Ill., Theresa, who knew of the award and encouraged me to fill out a nominating form.
She knew of my other kidney educational endeavors: working as a contributing editor on the "Live Now: Rethink Kidney Disease" website hosted by Baxter, the company that makes my dialysis supplies; public speaking engagements on behalf of Peritoneal Dialysis for the Baxter corporation and in front of the Michigan Legislature; joining Baxter's patient advisory board, speaking to dialysis patients one-on-one at clinics in Michigan and Illinois. But if you ask me, it was far and away this goofy, occasionally informative blog that helped to put my entry over the top.
If you subscribe to JK, read it regularly or have ever read it before, thank you. I appreciate you more than you could ever imagine.
The late and memorialized Robert Lee Felter, who died in 2002, was a kidney patient himself and is described by the Renal Network as "a champion for dialysis and transplant patients, and a guiding force for patient-centered activities." To answer The Wife's (and possibly your) immediate first question, no, there is no monetary award involved. However, as the Felter winner, I do receive an all-expenses-paid trip to an upcoming national convention that focuses on dialysis or renal research.
Ah, there's the rub. After extensive (and I do mean extensive) investigation, the best convention I could find for the remainder of 2011 was "Bridging the Future of Kidney Care," the 38th annual gathering of the American Association of Kidney Patients.
It's taking place Aug. 26-28 at the Peabody Hotel in Little Rock, Ark.
That's Arkansas. In August.
Second prize: A free weekend in Hell.
But hey, the horse is a gift. Who am I to check its choppers?
I will show up in Little Rock with the enthusiasm of a female intern meeting Bill Clinton, and we'll play it as it lays. So to speak.
And whatever befalls, rest assured I'll tell you all about it.
In this award-winning blog, of course.
You are looking at – OK, to be perfectly accurate, you're reading – the recipient of the 2011 Robert Felter Memorial Award from the Renal Network, Inc., given to "honor individual renal patients for their contribution to fellow patients and their families through service, outreach and education." Impressive, no?
I'd never heard of it before either.
Actually, it was the social worker at my DaVita dialysis clinic in Decatur, Ill., Theresa, who knew of the award and encouraged me to fill out a nominating form.
She knew of my other kidney educational endeavors: working as a contributing editor on the "Live Now: Rethink Kidney Disease" website hosted by Baxter, the company that makes my dialysis supplies; public speaking engagements on behalf of Peritoneal Dialysis for the Baxter corporation and in front of the Michigan Legislature; joining Baxter's patient advisory board, speaking to dialysis patients one-on-one at clinics in Michigan and Illinois. But if you ask me, it was far and away this goofy, occasionally informative blog that helped to put my entry over the top.
If you subscribe to JK, read it regularly or have ever read it before, thank you. I appreciate you more than you could ever imagine.
The late and memorialized Robert Lee Felter, who died in 2002, was a kidney patient himself and is described by the Renal Network as "a champion for dialysis and transplant patients, and a guiding force for patient-centered activities." To answer The Wife's (and possibly your) immediate first question, no, there is no monetary award involved. However, as the Felter winner, I do receive an all-expenses-paid trip to an upcoming national convention that focuses on dialysis or renal research.
Ah, there's the rub. After extensive (and I do mean extensive) investigation, the best convention I could find for the remainder of 2011 was "Bridging the Future of Kidney Care," the 38th annual gathering of the American Association of Kidney Patients.
It's taking place Aug. 26-28 at the Peabody Hotel in Little Rock, Ark.
That's Arkansas. In August.
Second prize: A free weekend in Hell.
But hey, the horse is a gift. Who am I to check its choppers?
I will show up in Little Rock with the enthusiasm of a female intern meeting Bill Clinton, and we'll play it as it lays. So to speak.
And whatever befalls, rest assured I'll tell you all about it.
In this award-winning blog, of course.
Tuesday, June 21, 2011
Just Kidneying – For Real
The chief transplant surgeon swept into my room at Barnes-Jewish Hospital in St. Louis, seemingly pulling the entire medical staff of the hospital behind him. lnterns, his surgical team, associates, student fellows – it was the "white coat swarm" that my nurse, Renee, warned me would be coming into my room to stare at me for a while.
But they were more than an hour late in their appointed rounds, which should have told me something.
The surgeon fixed his eyes and set his jaw. "I'm afraid it's bad news," he said solemnly.
Another doctor proceeded to give us the details: the kidney that had been designated for me, the one that prompted Karen and me to toss our clothes in a bag and race 200 miles to St. Louis at a moment's notice on a Sunday afternoon, the one that kept me overnight in a hospital though I wasn't sick, the one that necessitated a chest X-ray, EKG, blood screenings and a battery of other tests to make sure I was healthy enough to receive it – that kidney wasn't coming.
In keeping with the arcane rules and protocols of organ donation, at the last nanosecond another hospital in the region stepped up to claim the kidney for a patient whose condition was far more dire than mine. The doctor said a lot of other things, most of them apologetic, but I became lost in my own thoughts after that. The next thing I remember hearing was the chief surgeon saying, "You can get dressed now," before the swarm drifted back out of my room.
That's it. False alarm. So sorry. Just kidneying.
How ironic.
I was disappointed, of course, and very weary after a night of being poked, prodded and roused from my sleep every few hours on those wonderful hospital beds. The drive back from St. Louis seemed to take days. But I was neither upset nor discouraged. This revived relationship I have with Jesus Christ has given me an amazing sense of calm in matters such as these. It must be what the Bible means by "peace that passes all understanding." God knew this wasn't the right kidney for me, even though all the outward signs suggested it. When the perfect organ for me comes around, He will handle all the paperwork. God is in complete control.
What this experience showed me was the incredible fragility of this organ donation process. If an organ becomes available and if it's undamaged; if it's an acceptable blood and tissue match; if the potential recipient can get to the hospital in time; if he or she doesn't have a low-grade fever, undetected infection or some other physical impediment to surgery. Even then, there are no guarantees the transplant will actually take place. So many things have to go exactly right. It's a life lottery.
What saddens me most is not that I missed out on the transplant. It's that so many other people, who had offered up so many prayers, positive thoughts and good wishes, seemed more disappointed than I was. I'm told my father-in-law cried openly when he heard a matching kidney had been found. Larry is my personal version of John Wayne; he's not a cry-at-the-drop-of-a-puppy kind of guy.
My wife's BFF took the day off from work and drove to St. Louis to be at the bedside with Karen. My in-laws showed up to lend their support, bringing the twins with them. Madison, who really is becoming a talented young artist, used the trip to create paintings to adorn my hospital room, including one with a Bible verse she selected herself. We taped it to the front door of my room.
The passage is from Psalms 73. It reads, "My health may fail, and my spirit may grow weak, but God remains the strength of my heart; He is mine forever."
My pastor, Tony Caffey, and his wife, Sanja, drove in from distant Arthur, Ill., arriving about 90 seconds after we heard the unfortunate news. The gang truly was all here, and ready to rejoice. Their joy, alas, was short-circuited. So we all gathered in a circle and prayed instead.
So many of you put forward so much love, prayer and support on my behalf, I could actually feel it in my room at Barnes-Jewish. It's a phenomenal feeling to be cared about that deeply. Thank you. Thank you so very much.
The good news is, this call means I am at the top of the transplant list. I was told there have been instances where patients have been called in four or five times before they actually receive the transplant. (Oh, Lord, tell me that's not going to happen!)
I'm going to keep praying. You keep praying, too. Together we'll get through all this. And someday, after I've had a healthy replacement kidney for years and am doing better than any of us thought possible, we'll look back on these days and laughhhhh.
But they were more than an hour late in their appointed rounds, which should have told me something.
The surgeon fixed his eyes and set his jaw. "I'm afraid it's bad news," he said solemnly.
Another doctor proceeded to give us the details: the kidney that had been designated for me, the one that prompted Karen and me to toss our clothes in a bag and race 200 miles to St. Louis at a moment's notice on a Sunday afternoon, the one that kept me overnight in a hospital though I wasn't sick, the one that necessitated a chest X-ray, EKG, blood screenings and a battery of other tests to make sure I was healthy enough to receive it – that kidney wasn't coming.
In keeping with the arcane rules and protocols of organ donation, at the last nanosecond another hospital in the region stepped up to claim the kidney for a patient whose condition was far more dire than mine. The doctor said a lot of other things, most of them apologetic, but I became lost in my own thoughts after that. The next thing I remember hearing was the chief surgeon saying, "You can get dressed now," before the swarm drifted back out of my room.
That's it. False alarm. So sorry. Just kidneying.
How ironic.
I was disappointed, of course, and very weary after a night of being poked, prodded and roused from my sleep every few hours on those wonderful hospital beds. The drive back from St. Louis seemed to take days. But I was neither upset nor discouraged. This revived relationship I have with Jesus Christ has given me an amazing sense of calm in matters such as these. It must be what the Bible means by "peace that passes all understanding." God knew this wasn't the right kidney for me, even though all the outward signs suggested it. When the perfect organ for me comes around, He will handle all the paperwork. God is in complete control.
What this experience showed me was the incredible fragility of this organ donation process. If an organ becomes available and if it's undamaged; if it's an acceptable blood and tissue match; if the potential recipient can get to the hospital in time; if he or she doesn't have a low-grade fever, undetected infection or some other physical impediment to surgery. Even then, there are no guarantees the transplant will actually take place. So many things have to go exactly right. It's a life lottery.
What saddens me most is not that I missed out on the transplant. It's that so many other people, who had offered up so many prayers, positive thoughts and good wishes, seemed more disappointed than I was. I'm told my father-in-law cried openly when he heard a matching kidney had been found. Larry is my personal version of John Wayne; he's not a cry-at-the-drop-of-a-puppy kind of guy.
My wife's BFF took the day off from work and drove to St. Louis to be at the bedside with Karen. My in-laws showed up to lend their support, bringing the twins with them. Madison, who really is becoming a talented young artist, used the trip to create paintings to adorn my hospital room, including one with a Bible verse she selected herself. We taped it to the front door of my room.
My pastor, Tony Caffey, and his wife, Sanja, drove in from distant Arthur, Ill., arriving about 90 seconds after we heard the unfortunate news. The gang truly was all here, and ready to rejoice. Their joy, alas, was short-circuited. So we all gathered in a circle and prayed instead.
So many of you put forward so much love, prayer and support on my behalf, I could actually feel it in my room at Barnes-Jewish. It's a phenomenal feeling to be cared about that deeply. Thank you. Thank you so very much.
The good news is, this call means I am at the top of the transplant list. I was told there have been instances where patients have been called in four or five times before they actually receive the transplant. (Oh, Lord, tell me that's not going to happen!)
I'm going to keep praying. You keep praying, too. Together we'll get through all this. And someday, after I've had a healthy replacement kidney for years and am doing better than any of us thought possible, we'll look back on these days and laughhhhh.
Sunday, June 19, 2011
The Kidney Call Comes
I wasn't ready.
My best friend since kindergarten, Walker Parmelee, told me not long ago that no one is ever ready when the call comes that potentially could change the rest of your life. It's like the Bible says in Matthew 25, "Watch therefore, for ye know neither the day nor the hour...."
Our day was Sunday, June 19. Father's Day. Four days after my 5*th birthday. The same week the State of Illinois was ordered to extend, rather than totally revise, existing health care benefits for its employees – including Karen, whose medical coverage I am under. I should have known this would be the time God might choose.
The hour was 2:30 p.m., after Karen and I had returned home from church at Harvest Bible Chapel. Ironically, my phone rang just as I was sitting down to a delightful home-cooked lunch, and I opted to let it go to voicemail.
Moments later, it rang again. Now I'm getting a bit peevish. "Which one of my idiot friends can't figure out that if I don't pick up the phone, I don't want to talk right now?" I carped, my thoughts in the form of a mutter.
The ringing eventually ended on that call, too. Then Karen's cell phone sprang to life. She at least had the motivation to get up and look at the number.
"Do we know anyone in the 314 area code?" she asked.
"That's St. Louis," I said. Home of Barnes-Jewish Hospital, my kidney transplant headquarters.
My blood ran cold.
She put the phone on speaker and we talked to a very nice transplant coordinator named Trish. She said a potential kidney donor match had been located for me: a 54-year-old woman (whoo-HOO! Younger than me!) who died within the past 24 hours and is a solid blood and tissue match.
That's the way it often is in the transplant biz, tragically. Someone's got to die for the gift of life to be bestowed.
The hangup in this case: no one knows anything about the lady's medical history.
Surgeons will perform a biopsy on the kidney to see if there's anything wrong with it internally, but until the results of that test come back and doctors are satisfied that it's damage- and disease-free, we're in a bit of limbo. What's more, because of the questionable origin of the organ, I'm told I can say "No, I don't think so" right until they wheel me into the OR without penalty of losing my place on the donor list.
Pressure? What pressure?
It isn't that I'm not thrilled about the prospect of a kidney transplant, although on the three-hour drive to St. Louis I could feel myself growing quiet and sullen. The closer we got to the Gateway Arch, the harder it was for me to catch my breath. At one point I thought I was hyperventilating.
It's hard to explain. As much as I try to put my faith in God for all things, I think it was just the fear of the unknown that was sending my mind into the funk tank. I'm doing all right on Peritoneal Dialysis – better than all right, actually, I'm doing great – and even though I may not stay that way forever and a transplant is far and away the best alternative long term, I always have had a very tough time adjusting to change.
It's amazing to me how many questions and "what ifs," serious and silly, come to mind at a time like this:
What if there are complications in the surgery?
What if my body rejects this lady's little kidney?
Will I miss dialysis?
What will I do with all that extra time and medical supplies once I'm off dialysis?
How will I respond to the anti-rejection drugs?
Will I ever be able to eat sushi, or raw anything, again for fear of infection?
Will I have to wear a mask in public?
You can drive yourself cuckoo-for-Cocoa-Puffs if you let your mind run free with all those "what ifs." Enough already. I'm much calmer now. Once we got to the hospital, got checked in and they started running diagnostic tests on me, I felt much better. Whatever's going to happen now is going to happen. It never was in my hands in the first place.
Right after my EKG was completed, out of the blue, a member of the church I belong to 180 miles away strolled into my hospital room. Dick Elder's wife, Kathy, is also a patient in this massive medical complex – and, as it turns out, in the room one floor above mine.
Small world, schmall world: you'll never convince me that's a coincidence.
Then the hospital technician, as she was drawing my blood, suddenly began softly praying aloud for my health and safety. "If it's for you, it's going to happen," she said, laying a hand on my wrist. "The Lord knows what's best for you. We ask you, dear Lord, to put this man's health in your hands."
Powerful stuff, this kidney transplant. Amen.
My best friend since kindergarten, Walker Parmelee, told me not long ago that no one is ever ready when the call comes that potentially could change the rest of your life. It's like the Bible says in Matthew 25, "Watch therefore, for ye know neither the day nor the hour...."
Our day was Sunday, June 19. Father's Day. Four days after my 5*th birthday. The same week the State of Illinois was ordered to extend, rather than totally revise, existing health care benefits for its employees – including Karen, whose medical coverage I am under. I should have known this would be the time God might choose.
The hour was 2:30 p.m., after Karen and I had returned home from church at Harvest Bible Chapel. Ironically, my phone rang just as I was sitting down to a delightful home-cooked lunch, and I opted to let it go to voicemail.
Moments later, it rang again. Now I'm getting a bit peevish. "Which one of my idiot friends can't figure out that if I don't pick up the phone, I don't want to talk right now?" I carped, my thoughts in the form of a mutter.
The ringing eventually ended on that call, too. Then Karen's cell phone sprang to life. She at least had the motivation to get up and look at the number.
"Do we know anyone in the 314 area code?" she asked.
"That's St. Louis," I said. Home of Barnes-Jewish Hospital, my kidney transplant headquarters.
My blood ran cold.
She put the phone on speaker and we talked to a very nice transplant coordinator named Trish. She said a potential kidney donor match had been located for me: a 54-year-old woman (whoo-HOO! Younger than me!) who died within the past 24 hours and is a solid blood and tissue match.
That's the way it often is in the transplant biz, tragically. Someone's got to die for the gift of life to be bestowed.
The hangup in this case: no one knows anything about the lady's medical history.
Surgeons will perform a biopsy on the kidney to see if there's anything wrong with it internally, but until the results of that test come back and doctors are satisfied that it's damage- and disease-free, we're in a bit of limbo. What's more, because of the questionable origin of the organ, I'm told I can say "No, I don't think so" right until they wheel me into the OR without penalty of losing my place on the donor list.
Pressure? What pressure?
It isn't that I'm not thrilled about the prospect of a kidney transplant, although on the three-hour drive to St. Louis I could feel myself growing quiet and sullen. The closer we got to the Gateway Arch, the harder it was for me to catch my breath. At one point I thought I was hyperventilating.
It's hard to explain. As much as I try to put my faith in God for all things, I think it was just the fear of the unknown that was sending my mind into the funk tank. I'm doing all right on Peritoneal Dialysis – better than all right, actually, I'm doing great – and even though I may not stay that way forever and a transplant is far and away the best alternative long term, I always have had a very tough time adjusting to change.
It's amazing to me how many questions and "what ifs," serious and silly, come to mind at a time like this:
What if there are complications in the surgery?
What if my body rejects this lady's little kidney?
Will I miss dialysis?
What will I do with all that extra time and medical supplies once I'm off dialysis?
How will I respond to the anti-rejection drugs?
Will I ever be able to eat sushi, or raw anything, again for fear of infection?
Will I have to wear a mask in public?
You can drive yourself cuckoo-for-Cocoa-Puffs if you let your mind run free with all those "what ifs." Enough already. I'm much calmer now. Once we got to the hospital, got checked in and they started running diagnostic tests on me, I felt much better. Whatever's going to happen now is going to happen. It never was in my hands in the first place.
Right after my EKG was completed, out of the blue, a member of the church I belong to 180 miles away strolled into my hospital room. Dick Elder's wife, Kathy, is also a patient in this massive medical complex – and, as it turns out, in the room one floor above mine.
Small world, schmall world: you'll never convince me that's a coincidence.
Then the hospital technician, as she was drawing my blood, suddenly began softly praying aloud for my health and safety. "If it's for you, it's going to happen," she said, laying a hand on my wrist. "The Lord knows what's best for you. We ask you, dear Lord, to put this man's health in your hands."
Powerful stuff, this kidney transplant. Amen.
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