Monday, December 28, 2009

Dialysis Boot Camp

I've driven past DaVita dialysis centers ever since I can remember, but began eyeing them more warily once the diagnosis of my crappy kidneys was confirmed. I think I may even have started slowing down to take a closer look as I passed them. I liken it to driving by the cemetery where your plot is located: you know you're going to end up there eventually, but you're in no particular hurry to visit.

Nothing I imagined about what goes on inside those places, however, could have prepared me for the experience of what I lovingly term "Dialysis Boot Camp."

Because I chose the option of Peritoneal Dialysis (PD), which is self-administered at home instead of at a clinic, my DaVita nurse Diane King wanted to make absolutely certain I could perform the procedure on my own before giving her consent. So for the better part of an entire work week in December – from 9 a.m. to mid-afternoon Monday through Wednesday, a day off Thursday to stop my head from spinning from the overload of information and training, then a four-hour "final exam" Friday at our home – this sweet little woman who had guided me gently through the stages of my renal disease suddenly turned into a drill instructor. She became Sgt. Carter to my Gomer Pyle.

"I've been told I can be a little demanding in these sessions," Diane said softly on the first day. No kidding! It was like going to a job again! No, worse: It was like cramming for a master's degree in Dialysis in one week. She even gave quizzes!

Over and over again she drilled me on the steps involved in dispensing PD: Sanitizing the worktable; the seven essential items required to begin (bag of solution, thermometer, plastic clamps, mask, hand sanitizer, new end caps for my catheter, paper towels); inspecting the solution; preparing the bag; hand washing and sanitizing; connecting and disconnecting the bag of solution to my catheter.

We learned the difference between "sterile" and "clean." Every time I thought I was getting the hang of things, there were new details to absorb. My wife, Karen, and my mother-in-law, Linda, patiently sat through the entire ordeal with me. Whenever I felt as if my eyes were about to glaze over, I looked at Karen, who reassured me with her warm smile and compassionate eyes.

We created a "cheat sheet" so we can review the steps in case we forget something. And on "final exam" Friday, Diane visited our little house on the prairie, inspected the lighting, layout and area where the PD would be performed, and deemed us worthy to fly solo. I've been proud and happy to pass a lot of tests in my lifetime, but few that were actually a matter of life itself.

I can dialyze myself now, thank you. Let the cleansing process begin!

Friday, December 18, 2009

I'm Beautiful, Inside and Out

Recently Karen and I returned to Carle Hospital in Urbana, IL, for a followup visit with Dr. Michael Neuwirth, the brilliant surgeon who performed the catheter insertion for my dialysis. I know he must be brilliant because every health care professional I've met with since the operation – and I've met with a mess of 'em – refers to him and his work in hushed tones of reverence. That makes for one contented patient.

Actually, I didn't meet with Dr. Neuwirth in person (brilliant people are often busy, too), but with his physician's assistant, who asked to remain nameless here for professional reasons. Henceforth we will call her Unidentified Physician's Assistant, or UPA, which is not to be confused with "Yooper," the slang term for a native of Michigan's Upper Peninsula. Which, as it just so happened, is where the UPA was from.

The UPA was extremely pleased to see that, as she told us, my surgical wound showed no evidence of dehiscence, which from this point on will be our Word for the Day.

(de • his • cence, (de-HISS-cents), n.: a bursting or splitting along natural or sutured lines; a splitting open. Separation of the layers of a surgical wound. "We may have to suture him again, Al; the blood indicates his incision is showing signs of dehiscence.")

She didn't stop there, however. UPA went on to gush over how beautifully the edges of the incision were coming together, and that the healing process looked "awesome." By my count, she used the word "beautiful" or a variation seven times during our brief visit, along with "awesome," "perfect" and "excellent" once each.

Well, let me tell you, it's been a very long time since any person of the female persuasion looked at me and said "beautiful" that many times, even if it was in regards to the two-inch slit in my belly.

Leaving the hospital that day, I kept hearing the voice of Natalie Wood in West Side Story sounding in my head: "I feel pretty, oh so pretty, I feel pretty and witty...." UPA made me so proud, I could have just dehissed.

Saturday, December 12, 2009

The 1.5, 2.5 and 4.25 Percent Solutions

Earlier this week – even earlier than promised, actually, and how often does that happen these days? – a blue-and-white Baxter delivery truck about the length of Toledo pulled up in front of our little house on the prairie and dropped off my first supply of "Dianeal, Low Calcium, Peritoneal Dialysis Solution with 1.5% Dextrose" (let's just call that PDS for short) I'll be using for my manual daily dialysis exchanges that begin this month.

Baxter, I'm sure you don't know, is "a worldwide leader in providing lifesaving products and services for patients who suffer from kidney failure." I know this because Baxter told me so on its self-produced instructional video, "Going Home With Confidence." The Baxter delivery driver could not have been friendlier or more informative, which is important when some burly trucker you've never seen before wheels into your house with 13 cases of sugar-water-in-a-bag.

(The video says to make sure you check the driver's identification before letting him into your home; I think an 80-foot tractor trailer pulling up to your front door with "BAXTER" emblazoned across the side would be a pretty strong hint that the guy's legit.)

And yes, I said 13 cases of solution – which, since my dialysis cycle is beginning in the middle of a month, is only a partial shipment! The driver told me a typical delivery in months to come should average as many as 30 cases! Thankfully, we have a small nook just inside our front door and next to the fireplace that I cleared out beforehand to make room. But imagine trying to find space in your place to accommodate 30 new packing boxes of anything.

                   What 13 cases of dialysis solution looks like in a corner.

Each case contains a half-dozen bags of fluid, 2,000 millileters apiece, about the length of a football and as heavy as a half-gallon of milk. Every bag is encased in a larger plastic bag for protection and includes its own pair of connecting tubes (one for fluid in, one for fluid out) and drainage bag for the liquid's final resting place. It's a modern miracle of in-home medical technology.

Not all the bags are mixed with 1.5 percent dextrose. Some have 2.5 percent, others as high as 4.25 percent. My nephrologist, Dr. Attia, will determine which concentration is best for me as my condition changes. As the manual exchange program calls for pouring in and draining out four of these puppies a day, the supply is likely to disappear quickly.

                                     The bag inside the bag.

Here's the kicker for me: the DaVita office arranged for the first home delivery, but I have to schedule every subsequent shipment myself. That will mean calling Baxter at least two weeks before I need supplies, making an order and keeping a running inventory so I know what I have in stock and what I need to request. Any lawyer, accountant or tax preparer I've ever had in my life is laughing uncontrollably right now over the idea of me keeping accurate records of anything.

I think the empty bag isn't the only thing that will be draining.

Tuesday, December 8, 2009

A Precious Gift, A Sacred Trust

On Monday I had a long introductory phone conversation with Diane Herche (pronounced Herky), the dialysis coordinator for our insurance carrier, Health Alliance. (And may I say here that I think Herche is one of the coolest surnames I've heard in an eon. I'm strongly considering changing my name to Jimmy Herche.) She is not to be confused with my dialysis nurse at DaVita, Diane King. I'm beginning to think everybody in the kidney game has to be named Diane.

My wonderful wife, Karen, has done a phenomenal job taking the point to coordinate our coverage, satisfy co-pays and ask questions of the appropriate people when we get lost in the insurance jungle, but this was my first time actually speaking to our carrier's representative voice to voice.

Diane is an extremely engaging woman and our conversation soon danced into a variety of kidney-transplant related subjects. With Health Alliance's approval, last week I called Barnes-Jewish Hospital in St. Louis, one of the Midwest's leading transplant centers, and said, "I want to be considered for a kidney transplant, please." (I was told I had to call Barnes personally and make my request with precisely those words in order for their evaluation process to begin. It's like a game show: "Oh, we're sorry, Mr. McFarlin, you didn't phrase your application in the proper form. What do we have as his consolation prize, Johnny? A can of kidney beans! Thanks for playing! And who's our next lucky recipient?")

We have to make sure that Health Alliance is on board with our decisions at every turn. As I explained to Diane, the reason I had to remove myself from the transplant waiting list in Michigan is that my previous carrier refused to pay for the monthly blood screenings that are required to remain under consideration for a donor organ once I moved out of state, and the cost was too prohibitive – more than $300 a month, as I recall – to foot the bill ourselves.

I told her I wanted to ensure that Health Alliance would pay for the blood tests, do whatever they could to help me get my accrued time on the Michigan waiting list transferred to Illinois and approve all the costs of a potential transplant at Barnes even though the hospital is out of state. Her confident voice and obvious experience with the system quickly reassured me that everything would be all right whenever a donor kidney becomes available – possibly within 1-2 years, as opposed to the 4-5 years estimated for Michigan. Amazing how states without motorcycle helmet laws have shorter waiting periods!

What struck me most about our telephone chat, however, was Diane's closing comments about aftercare following a transplant. She stressed that everything I'm doing now – taking my medications religiously, limiting my diet, keeping regular appointments with my specialists – becomes even more imperative after I receive a new kidney.

After all, she noted, while a replacement kidney isn't a cure for kidney disease, it is a gift of life and improved health. They could have given the kidney to any suitable donor, she said; when my time comes at the top of the list, my transplant team wants to know that they've made the right decision and I will respect and maintain the organ I receive.

I never thought about the process quite that way before. When I'm chosen – if I'm chosen – a lot of people will be expecting me to protect their investment in my health. Part of another person's body is going to be entrusted inside me to prolong my life. It's an honor, a privilege – and one huge responsibility.

Monday, December 7, 2009

Painful As All G'Out

 While writing my recent reflections on Thanksgiving and the many things I have to be grateful for (see "Am I Thankful? Are You Kidding?" Nov. 30), I made an accounting of the remarkable list of life-changing events that have happened to me in 2009. I revisited that list today and was astonished to realize that I completely failed to mention my nearly three months of suffering from gout in both feet, brought about by the inability of my kidneys to filter my blood as effectively as they should.

It was the focal point of the article I wrote about my crummy kidneys for HOUR Detroit magazine last summer (see "Best Foot Forward", if you haven't already), but I haven't even mentioned it in the four months since I've been writing "Just Kidneying." Just goes to show you: This year has been such a dizzying whirlwind of emotion and change that I totally forgot the crippling condition that left me dependent upon canes and a walker just to move around, at the same time I was trying to pack to move from Michigan to Illinois!

In hindsight, I have no idea whether it was the succulent, Béarnaise sauce-drenched steak dinner I enjoyed with Karen at Motor City Casino in Detroit that threw my body's ecosystem into default. What I do know is, two days after savoring that incredible meal, my already imposing tootsies – about 15 DDs, depending upon the shoes – ballooned to almost twice their size, excruciatingly painful to both touch and pressure.

Imagine trying to walk steadily on a pair of small inflatable rafts, each with 100 nails sticking up into your feet. Now double that. That's close to the pain I was suffering.

Maybe the experience was so horrific that I have pushed it out of my memory! I only had one pair of shoes that would fit me, a pair of stretchy black sandals Karen bought for me on a whim. (Thank the Lord it wasn't February in Michigan!) At one point the misery became so unbearable that I would actually crawl around the floor of my apartment, my feet slightly elevated off the floor behind me and tears streaming down my face, rather than even consider the possibility of placing weight on my delicate dogs.

Once I moved to Illinois, I found a general practitioner, Dr. Randall Megeff, who had the courage to prescribe a combination of anti-gout drugs (which are potentially hazardous to the kidneys) in a well-monitored dosage, and I have had no problem with pain or swelling since. But I must tell you about the incredible act of kindness that took place during this ordeal.

Karen and I were in West Michigan for the weekend – I was getting around haltingly by means of a walker – and having Sunday breakfast with our friends Frank and Lisa Johnson from Ann Arbor. I went to high school with Frank, who now owns a very successful heating and cooling business, and have considered him a good friend for decades.

I casually mentioned the fact that we were trying to pack for my move to Illinois and having a devil of a time due to my infirmity. Without missing a beat, Frank looked up from his cup of coffee and turned to his wife.

"Lisa, have we ever been to Champaign, Illinois?" he asked.

"No, we haven't," Lisa replied.

"Would you like to go? It's a college town, you know."

"Fine with me."

"You'll need a truck. We have trucks," Frank said. "I'll just borrow one for a weekend. Tell me when you want to move."

Not only did we escape a truck rental fee, but the Tuesday before we had scheduled the move Lisa and Frank called me. "Are you at home?" Frank asked.

When I indicated I was, about an hour later he and Lisa showed up at my doorstep in a panel van, wearing old clothes and ready to work. They played Ninja Movers with the "priceless" junk I had accumulated over the years.

They sat me in a corner (I still couldn't walk, remember) and proceeded to lay boxes of my stuff before my swollen feet.

One of them would open the lid. "Can you tell me what's in this box?" they asked.

If I couldn't identify the contents within five seconds, I lost the box.

"Not going!" they would shout, and carried the box into their panel van. I was horrified!

By the time they left, they had completely filled the van with boxes of my time-honored garbage, destined for donating, recycling or plain old trashing. Talk about being proactive!

And you know what: to this day I can't tell you everything they took that night, and I haven't missed a single thing.

Needless to say, I cannot begin to imagine how difficult moving would have been without them. God sends angels into your life at the most unexpected moments. Sometimes it can be people you've known for years.

I've said it to them, and to anyone else who would listen, but let me now say it in writing: Thank you, Frank and Lisa. You are amazing human beings. You almost made having gout a blessing in disguise.

                   Me with Lisa and Frank Johnson

Friday, December 4, 2009

It Just Came Pouring Out

At the end of our initial visit to the DaVita dialysis center in Decatur earlier this week (see "Hey! This Stuff Is SERIOUS!" Dec. 2 and "Port of Entry" Dec. 3), we met with the facility's social worker, Theresa Kircher. She presented the mountain of paperwork I had to sign in order to make sure my insurance pays DaVita for its efforts and that they're absolved from liability in case my stomach makes like the classic scene from Alien and something bursts out.

But near the end of our meeting, Theresa hit me with a question I totally was not expecting.

"How do you feel about being here and getting ready to begin dialysis?" she asked.

No one had ever inquired about my state of mind concerning my condition quite so pointedly before. Maybe it was because I was in a particularly vulnerable or emotional state, having just completed my first Peritoneal Dialysis practice session. But when I opened my mouth to answer, not even I could believe the words that came rushing out.

I can't remember my words verbatim, but I sure can recall the general sentiment.

"I'm angry, and I'm disappointed. Like Mickey Mantle said in his last press conference, if I'd known I was going to live this long, I would have taken better care of myself. I'm seething with the knowledge that I brought most of this upon myself by not controlling my high blood pressure much sooner, and I feel mortal, weakened, like damaged goods.

"I hate the idea of being dependent on outside sources or mechanical contraptions to stay alive and healthy. I hate having to take more than a dozen pills every day, having to schedule a week's worth of training sessions here to learn my dialysis procedure, having three different specialists sending me bills.

"I hate being pushed and poked and prodded, having my blood drawn so often that I feel like I'm stocking the Red Cross singlehandedly, having all my bodily functions monitored on a constant basis. I hate knowing that this DaVita center soon will become my second home, since I'll have to come back at least once a month for checkups.

"I hate knowing I have to wait for someone else to die, or for a suitable donor with my rare blood type to emerge, before I can even think about receiving a replacement kidney. And I particularly detest the idea that the goal I'm ultimately working toward is to have my body sliced open, getting a foreign organ stuck inside me and praying that my body won't reject it.

"So no, all things considered, I'd rather be anywhere else than here right now. Even Hell seems like a preferable alternative."

The room fell silent. Theresa smiled and said something about a lot of people feeling that way at first.

I don't believe I've ever been so honest about my thoughts about dialysis and my medical condition before – not even to myself. Usually such confessionals can be cathartic, cleansing for the mind and spirit.

Me, I just grew sadder. I felt very empty inside.

Thursday, December 3, 2009

Port of Entry

Yesterday we discovered the impressive list of health dangers – up to and including death – associated with peritoneal dialysis (PD), my chosen method for future kidney treatments. But I neglected to show you the results of the operation that will make PD possible in the first place. Maybe I unconsciously channeled my old ad agency experience and waited an extra day to heighten excitement for the big "reveal"!

At any rate, before my training session could begin at the DaVita dialysis center in Decatur, the surgically-created new hole in my belly had to be inspected, cleaned, sterilized and have its dressings changed. (Beware: the following images may not be recommended for the faint of stomach.)

First, the dressings applied during my outpatient surgery on Nov. 24 had to be removed:

There had been some seepage after the procedure during the healing process. Notice the dried blood at the point of incision. (Also note how ashy my stomach had become after a week of being covered by the clear plastic tape that held the gauze in place!)

Once DaVita nurse counselor Diane King took the old dressings away and cleaned the area around the incision, you could clearly see the dialysis port.

See how the tube was inserted in the midsection cleanly – Diane confirmed that my surgeon, Carle Hospital chief of interventional radiology Dr. Michael Neuwirth, is one of the best in the region at this procedure – then burrowed about an inch under my skin before being inserted into the peritoneal lining of my abdomen.

After being cleaned, the site was ready to accept its first dialysis test run to see if the solution that's used for the PD process would flow in and out of my tube smoothly.

Diane set out the materials she needed for the dialysis run-through, including the 2500cc bag of fluid that would eventually find its way into my body, then drain out again.

She disinfected her worktable two times with bleach water, scrubbed her hands for 45 seconds with antibacterial soap, switched latex gloves at least three times and placed masks on everyone in the room to reduce airborne contamination before she began the procedure. All this for the run-through? Hokey Pete! I don't know how you would react, but I was getting plenty nervous and creeped out.

She affixed what's called a transfer set to the end of my tube; that's the attachment that actually hooks to the tubes coming out of the fluid bag. The whole process of filtering the solution into my body takes no more than 10-15 minutes. Then the idea is to keep the solution inside my body for at least two hours at a time (that's called letting the solution "dwell"), draining it out and repeating the process four times a day. Eventually, after I master this manual technique, I can upgrade to a "cycler," a bulky but portable machine that will accomplish the same function overnight when I attach my transfer set to it.

So much to learn, so many precautions to take, so many details. It's all very overwhelming. We will have at least three training sessions of 4-5 hours each, then a home visit by Diane as my final exam, before being allowed to do the manual PD treatments by myself.

We all can rise to challenges as they're presented to us, no matter how great. That's what being human is all about. But I'd be lying if I told you I'm looking forward to this one.

Wednesday, December 2, 2009

Hey! This Stuff Is SERIOUS!

On Tuesday, Dec. 1, 2009, the first day of the rest of my life arrived. As you may remember, a week ago, on Nov. 24, I underwent outpatient surgery at Carle Hospital in Urbana, IL, to have a catheter tube permanently implanted in my midsection in preparation for peritoneal kidney dialysis treatments to come. Yesterday, at the DaVita dialysis center in my new home of Decatur, IL, the surgical dressings were removed for the first time since the operation, the incision site was inspected, cleaned and sterilized, and a practice dialysis session was held to show me how it's done and to make sure the catheter is working properly.

Notice the look of uncontrolled terror in my eyes.

Right off the top, we (that is, my wife Karen, my mother-in-law Linda and I) received some discouraging news. Diane King, the delightful and extremely knowledgeable DaVita dialysis nurse who conducted our initial two-hour training, relayed the information that my kidney specialist, Dr. Attia, had decided to move up the start of my dialysis from sometime in January, after the holidays, to as soon as my incision completely heals in around two weeks. My latest lab results, from blood drawn on Monday, were not encouraging. My potassium levels were up, and my creatinine markers (the waste molecule generated by muscle metabolism that's an indicator of kidney function) were elevated.

Reality hit us all between the eyes. After talking about the possibility for many months, it was time to get started on daily dialysis treatments. Karen's eyes briefly filled with tears.

This is me with Diane King, the DaVita dialysis nurse. She has a voice like Pollyanna's, which somehow makes disheartening news easier to accept.

But then, before the training process begins in earnest, the first document among the mountain of paperwork I am required to sign is the "Authorization for Consent to Peritoneal Dialysis Procedure." And on the first page, the "significant risks associated with the procedure" are outlined. They include the possibility of:

• Contracting an infection in the peritoneal cavity (called peritonitis), the catheter tunnel or the exit site;

• Developing hernias in the groin from the pressure of the dialysis fluid;

• Erosion or perforation of the bowel walls by the catheter;

• Being stricken with hydrothorax, the leaking of dialysis fluid into the chest cavity;

• Sclerosis or scarring of the peritoneum, which can result in obstruction of the bowel, and, of course,

• Death.

Whoa! Hold on! Back the truck up! I don't recall anyone ever mentioning any of this before the catheter was stuck inside my belly, when peritoneal dialysis (PD) was being praised as the more convenient and advantageous form of kidney assistance. I tend to be the kind of person who looks at the glass as half full, but come on!

Well, we're in this all the way now, come what may. More on the first dialysis run-through treatment tomorrow.

Monday, November 30, 2009

Am I Thankful? Are You Kidding?

Last weekend was just about as wonderful a Thanksgiving season as anyone has a right to enjoy. On Thursday evening, seated around our sumptuous dinner feast, we instituted a new holiday tradition: We went around the table and asked each person to say what they were most thankful for this year.

A few tears were shed in the process, and I'm not ashamed to admit I may have dropped one or two into the turkey gravy myself. I think they finally had to ask me to shut up before the meal got cold. What am I most thankful for in 2009? How about everything?

You know how some years seem to blend into each other with the passage of time, and it becomes difficult to remember exactly what milestones happened when? That certainly never will be a problem for me when it comes to 2009.

It isn't every year that a guy gets married, loses a job, leaves the city where he's lived for 30 years, moves three times in six months, relocates to his in-laws' basement, becomes a co-parent to 9-year-old twins, passes out on the bathroom floor and gets hospitalized for a gash on his forehead, and has a catheter implanted in his midsection in preparation for kidney dialysis. Yeah, it'll be a hard year to forget.

Through it all, I'm extremely thankful for my health, odd as that may sound. I don't have to look too far to find people in much worse shape than I'm in, Vicodin is a miracle in terms of lessening the pain from my recent surgery, and all in all I'm feeling great. People who oughta know tell me I should
begin feeling even better once my dialysis begins and my body receives the help it needs to cleanse my system properly. I'm looking forward to finding out if they're right.

I'm also thankful for a wonderful, caring family that has taken me into its fold as if I was a prodigal son, expressing love for me in so many ways despite the physical infirmities I brought along as baggage.

But what am I most thankful for? That's easy. Anyone who has met my wife, Karen, comes away remarking about what an amazing person she is, and if you haven't met her, my sincere hope is that you get to someday.

Regretfully, I've had a bit of experience assessing wives in my lifetime, and no man could ask for a more supportive, loving, objective, cheerful, committed partner than the one God has blessed me with. There is no doubt in my mind that the Lord brought us together, because I cannot think of another possible scenario where a guy living in the 'hood on Detroit's East Side could meet and fall in love with a woman residing and working in central Illinois.

Karen is truly one of the nicest individuals I have ever known, and I am a better man today for having her as such an integral part of my life. Happy Thanksgiving to me.

And she can make some mean stuffing, too.

Wednesday, November 25, 2009

Wanna See My Scar?

Well, you can't. I haven't even seen it yet, and probably won't for at least a couple of weeks.

Here's what we all can see, the surgical dressing placed tightly over the site where my dialysis catheter was inserted, then taped down tighter than an Adam Lambert liplock. If you look hard, you can see the outline of tube that's now sticking out in the suburbs of my belly button.

The whole procedure went very well (or so I was told; I was out like a power shortage) and thank you all for your prayers and support. I could feel your encouragement.

I had to wait more than two hours in prep before finally being wheeled into the coldest operating room I can ever remember. Surgery in a meat locker; how invigorating. The delay did give me time to watch "Divorce Court" and "The People's Court," however, and allow me to extol the virtues of Xanax as a quality mood relaxer!

Dr. Neuwirth, the surgeon who implanted the catheter, said he was going to put me into "twilight" for the operation. It might as well have been "midnight." I remember remarking to him that his "third cousin," actress Bebe Neuwirth, is playing Morticia Addams opposite Nathan Lane in The Addams Family musical in Chicago through January. We chatted about that briefly; the next thing I knew I was in recovery. I love it when operations go like that!

So, like Uncle Joe, I'm a-movin' kinda slow, but I should be able to sit upright and take nourishment – especially with Thanksgiving just two days away! The tube is inside me now. The adventure continues.

Tuesday, November 24, 2009

The Hole Truth

OK, I've really been obsessing over the implanting of my dialysis catheter.  I didn't want to annoy anyone – especially you – by whining and wailing about it the past few weeks, but I've really been able to think of little else.

This morning at about 10 a.m. EST, Dr. Michael Neuwirth, chief of interventional radiation at Carle Hospital in Champaign, Ill., (doesn't that sound impressive?) will cut open a new hole in my midsection, stick a wire inside it and use the wire as a guide to insert a tube into my peritoneal cavity. The tube eventually will carry fluid to cleanse my blood the way my kidneys would if they were working properly.

I realize I'm probably making a mountain out of a meatball, and the reality of the operation likely will be far less ominous than the horrors I've concocted in my mind. But I'm extremely sensitive to the fact that after today, my body image will be altered for a long time – possibly forever. And having a tube sticking out of your side changes the way you do almost everything, from taking a morning shower to getting dressed, to exercising – I'm not even sure I'll be able to sit the same way anymore.

I guess one fortunate thing is that I do have some personal history to refer to here. Back in 2002, my family doctor detected a lump in my neck during a routine physical and recommended I get it checked by a specialist. A year later, during my annual physical, my doctor asked, "Whatever happened with that lump?"

"What lump?" I asked, channeling the comedic timing of the late Marty Feldman in Young Frankenstein.

(Those who know me recognize that I have a memory like a sieve.)

This made the doc pretty steamed, and he insisted I make an appointment with a specialist while I was sitting in his office. A week or so later, the ear, nose and throat surgeon gave me the news: He was going to have to operate and cut the lump out of my neck for examination.

I remember looking in the mirror the night before the surgery, staring at my face and thinking, "I will never, ever look this way again." The eight-hour operation went smoothly, the growth turned out to be benign, and the recovery process was painful but brief. I had a tube coming out of my neck and into a small bag at my side for nearly two weeks to collect excess blood and fluids while the healing took place.

Eventually, though, the tube came out (with a large sucking sound, as I recall), and today the scar behind my ear is virtually invisible. So as horrible as I thought having neck surgery was going to be, time truly does heal all wounds.

One unusual side effect remains, however: During the operation, surgeons had to remove my saliva gland along with the tumor. Now my body has never recognized the fact that the gland is no longer there, so every time I eat something particularly spicy or flavorful, the "ghost" gland on the left side of my neck begins to sweat. (Someone once said my neck is spitting, but that seems a bit distasteful.) I asked my doctor about it and he says he's never heard anything like it before.

So that operation made me unique long before the procedure I'm having today. If you think about it, though, send up a prayer or a few good wishes for today. And if I'm ever having a meal with you and you see my neck begin to perspire, you'll know I'm really enjoying my food.

Monday, November 16, 2009


I had a most productive and interesting five days in Detroit last week. In addition to meeting the dynamic and compassionate philanthropist Doreen Hermelin (see recent "Doreen" and "Rootlessness" posts), I spent a fascinating afternoon with a Detroit historian, John Green, who seems to be waging a valiant – but losing – one-man war to ensure the achievements of African Americans throughout Michigan history aren't forgotten.

I spent one evening "receiving visitors" at Dino's Lounge in Ferndale, MI, and caught up with two beloved friends I don't see hardly often enough: Bill Jentzen (left), my former assistant at Wayne State University, and Santiago (why he prefers "Jimmy" I'll never understand!) Martinez, who had been part of my life in Detroit for decades.

I spent an extremely enjoyable and constructive Wednesday morning in the office of my longtime friend Carolyn Krieger-Cohen, one of Metro Detroit's most creative and effective PR executives. In the course of three hours we came up with at least a half-dozen ways we could work together to support some of her clients and make me some money!

Thursday morning may have been the unexpected highlight of my trip. Got a call from my old friend Brian Pastoria, who with his brother Mark runs the Harmonie Park recording studios in downtown Detroit, asking if I could squeeze in time to come in and record the voiceover introduction to "Christmas in Detroit 3," their annual benefit CD featuring holiday songs recorded by local artists. He wanted me to do it because of my many years working with Detroit musicians in my role as a music critic. It's very nice to be remembered for past accomplishments, and may I add that I nailed the intro in one take! Yeah, I still got it!

I also ran into another great guy at the studio, Jimmy Risk, currently publisher of the online publication Your News Detroit. All in all an extraordinarily delightful visit!

               Jimmy Risk, Mark Pastoria, me and Brian Pastoria

And just before I dashed out of town, I got the chance to have lunch again with my "media lunch bunch," including Specs Howard School of Broadcast Arts VP Dick Kernen, marketing exec Michael Seltzer and the always delightful Terry Bommarito Holmes, who I've known since I first moved to Detroit in the late 70s. Let me tell you, we laughed until we cried – especially when I went into my shtick about the differences between Detroit and my current life in central Illinois.

             Me with Yoda (Dick Kernen), Terry Holmes and Michael Seltzer

Wherever I went, it seemed, I would hear someone say, "You look great!" as if they were more than a bit surprised. They would say it the way people say it to someone who's returned home after major surgery, or a person who'd dropped 40 pounds since the last time they were seen. And the people who made such exclamations later said that they had been reading this blog.

Made me think: I've got to start emphasizing the fact that despite my kidney ailments, I'm still feeling fine. I'm getting the sense my Detroit friends and acquaintances expect to see me on crutches, hooked up to filtration devices or rolling through in an iron lung!

Monday, November 9, 2009

Feeling Different

I didn't even know I was receiving comments on some of these blog entries until last week, when my wife pointed out that a number next to the word "Comments" at the top of the page meant that someone had responded to what I'd written.

Hey, I never claimed to be real bright.

So immediately I raced back through all my postings, from the very first, to catch up on the reader comments and reactions. Many were quite gratifying, and my sincere thanks to everyone who took the time to write back. But one recent note really stood out from the rest. I don't know if you have the ability to read the blog comments along with me (darn, I wish I was smarter), but in case you cannot I won't identify the writer by name. Suffice it to say the reply comes from a woman I do not know.

"Jimmy, if you are like me," she wrote, "the only time you feel like you are really different from everyone else is when the doctor looks at you and says, 'I don't think you realize how well you are doing for as sick as you are.'"

She goes on to describe her debilitating, life-altering affliction: ulcerative colitis with systemic disease that has affected her entire gastrointestinal system as well as her eyes, skin, liver and joints."I have been what I call 'real sick' intermittently over the past 20 years, but I do not think of myself as real sick," she wrote.

"Have you felt like people treat you differently after they find out? I have. Anyway, changes are hard, especially when they seem so invasive."

The funny thing about my condition is, I don't feel any different. At all. I think about it when I swallow my handful of pills a couple of times a day, but physically I feel exactly like I did before I knew anything was wrong with my kidneys in the first place.

But I understand what she's talking about with the reactions of other people. When they ask, "How are you doing?" you can sense the deeper meaning. Some people say it the way they would to a senior citizen in the hospital. And if you look into their eyes, often you can see the hint of sympathy, or concern, or pity, or – I'm not sure what the emotion is, and it may be different for different people, but you can tell there's something going on behind their faces.

That's why I try not to talk much about my kidneys or health (he says, writing about them in a blog). I try to politely answer questions when I'm asked, but I'd really rather talk about almost anything else. I get tired of thinking about it, and my condition is going to do what it's going to do. Talking about it isn't going to improve it, far as I know.

Sometimes, however, that approach will come back to bite me. I'll casually mention something about dialysis in a conversation, for example, and the person I'm talking to will say, "Dialysis? What? What are you talking about?" Then I realize I may have done too good a job of keeping the details to myself.

Thanks for that provocative comment, you-know-who-you-are. Keep 'em coming, y'all.


Well, I had an amazing first evening back in Detroit Sunday. Drove seven hours to spend 30 minutes with my interview subject, an amazing woman named Doreen Hermelin who I'm profiling for HOUR Detroit magazine. (See "Doreen," Friday, Nov. 6 post.)

A half hour was literally all the time she could squeeze in for me, as she was dashing to fulfill family commitments and business details before boarding a flight to Argentina this morning. I was happy and thankful for every moment. Writers know that face-to-face contact, however brief, still is infinitely better than telephone or Internet communication when you're assignment is to capture the essence of a person through words.

When I arrived at her home for the interview, however, I literally could not believe my eyes. You hear so many Chicken Little stories about the doom and death of Detroit that, even though you know better, you sometimes tend to forget that everyone here is not in foreclosure or waiting for their government bailout.

This is the view from the front gate of her home:

And yes, like a goober I stopped to take a picture, like those gawking tourists on the Hollywood home tour, because little brown people who grew up in Spring Lake, Mich., just don't get invited to places like this every weekend.

As I drove down the long, winding road, over the bridge for the creek that runs through the property and past the gigantic lawn sculptures, I kept looking over my shoulder waiting for security guards to demand some identification, then escort me off the grounds. When I finally got to the door, Ms. Hermelin took me into her dining room, an immense space dominated by a long table surrounded by 12 chairs. And there, in one corner of the table, was a tuna fish sandwich on rye she had prepared for me.

Now, in the 35 years or so I've been interviewing people for a living, I cannot remember any subject ever making me a sandwich. She said she was going to make it when we spoke on the phone as I was racing to her house, but I genuinely thought she was kidding. But as she repeatedly said, she knew I had driven a long distance just to speak with her, and figured I had to be famished.

(Problem with eating tuna fish sandwich while conducting an interview: hard to ask questions when your mouth is full, and you don't want to appear ungrateful by not eating it.)

As I drove away from this magnificent residence, though, I got to thinking. I love Detroit, and I always will; I became a man here, and there are so many fantastic people who live here that I'm proud to call friends. One of them, Larry Kaplan, who was the photographer for the first rock concert I ever reviewed for The Detroit News back in 1979, has devoted a room in his condo exclusively for me so I'll never have to worry about accommodations in my travels back to Detroit.

But this isn't home anymore. I'm so thankful to have a place to stay when I'm here, but I don't have an address to call my own after 30 years of living in this city. When I'm here, I long to return to the pastoral surroundings and endearing chaos of my home in Decatur. When I'm in Decatur, I'm girding up to return to the bustle and intensity of a working visit in Detroit. Right now, I feel like a man without roots. That will change with time, I'm certain, but it's a very strange sensation I've never experienced before.

About the only place I truly feel at home these days is behind the wheel of my car – usually driving between Decatur and Detroit.

Friday, November 6, 2009


Last month I was assigned a big feature by my editor at HOUR Detroit magazine, a profile of a southeast Michigan woman named Doreen Hermelin. I had heard her name before, but I think it's fair to say, especially since I now reside at the end of a road in Decatur, Ill., that we don't travel in the same circles.

I had other stories to finish before turning my attention to her article, and I knew I would need to sit down across from her in person, like Mike Wallace used to do on 60 Minutes, if I really wanted to capture the essence of the woman in our brief time together and embellish the story with detail. So, I figured, I would track down Ms. Hermelin this week, solicit her interest in doing the feature, then drive to Detroit sometime next week to meet with her.

Should be more than enough time, right? After all, I'm clearing an entire week on my schedule to meet with her for less than an hour. How busy can any one person be?

Well, did I ever find out the answer to that question! After finally locating Ms. Hermelin and getting her on the phone (no simple task in itself, let me tell you), the cooperative and very gracious lady explained that she was getting on a plane Monday morning to fly to Argentina on business, will travel from there to New York, and doesn't expect to be back in Detroit until a day or so before Thanksgiving.

Hokey Pete! I thought. It turns out, as you may know, that Doreen Hermelin is an internationally renowned professional fundraiser, national president of the educational organization ORT America, former U.S. ambassador to Norway and probably a dozen other things I don't know about yet.

After several minutes on cellphone negotiations, it was decided that she could squeeze in 45 minutes to talk to me while she was packing for her trip to Argentina – and after her grandson's soccer match on Sunday afternoon.

Nobody should be that busy, I thought to myself. Then again, every time we think our lives are too jam-packed and hectic, we run into someone like Doreen Hermelin and realize that by comparison, we're nearly in semi-retirement.

Yet with all that, she makes time for a grandchild's soccer game. I think I'm going to like her.

Wednesday, November 4, 2009

Tube Stake

Well, the die officially has been cast: After considerable negotiation (and a bit of whining on my part), we have set the date and time for the operation that will insert a permanent catheter through my midsection and into the peritoneal lining of my abdomen. It's 9 a.m. Tuesday, Nov. 24, and if you'd like to send up a little Thanksgiving prayer about that time I certainly wouldn't oppose it.

My nephrologist, Dr. Attia, assures me that this doesn't mean dialysis will begin right away. But my kidney function continues to deteriorate, he says, and when the time does come he wants the dialysis port to be fully healed and ready for operation.

I think it never actually dawned on me that my recent consultation with Dr. Michael Neuwirth, the surgeon who's going to do the implant procedure, would mean plans were in place to do the operation so soon (see "The Doctor With X-Ray Eyes," Oct. 30). I'm not ready. I don't think I'll ever be ready.

When I got the call from Dr. Attia's office, I was told they wanted to do the operation next week. Whoa, too quick! Besides, I plan to be out of town on business next week. I suggested the week after, but Dr. Neuwirth is on vacation. (Whew.) That pushed the creation of my second belly button back to our current compromise date of Nov. 24.

If I've learned anything over this past year or so of infirmity, it's that the body is nothing more than a housing for our soul and spirit – and not a particularly sturdy one, at that. We spend so many years of our youth protecting it and pampering it, trying to keep it smooth and sleek, yet as we grow older we end up patching holes and replacing parts anyway. But there's something about this catheter that really has me rattled.

I think it's because an appendage sticking out of my gut might make me feel weaker, or sicker, more vulnerable – less whole. I had a very soft and intimate conversation with Karen the other night before we went to bed and suggested as much to her.

She looked me in the eye and said, "That won't matter, Jimmy. It'll just be something different. You'll always be sexy to me." What a magnificent life partner I have.

Monday, November 2, 2009

Taking Inventory

I think that any month that includes such phrases as "whooping cough," "overnight hospital stay for observation," "CAT scan," "head gash" and "unconsciousness" deserves a bit of quiet reflection once all the dust and blood have settled. So as we turn a page into November, and because so many of you have asked (thank you), let me give you an accounting of my current condition.

The vicious, body-shaking cough that led to all this foolishness is all but gone. And after a full week of uncontrollable hacking, I can't begin to tell you how welcome the sounds of silence are. The combination of cough medicine with codeine, a prescription cough drug called benzonatate and antibiotics, along with much rest and the natural passage of time, seemed to do the trick. (Antibiotics came into play because doctors at St. Mary's Hospital in Decatur elected to treat my illness as if it was whooping cough even though it probably wasn't, because the symptoms were so similar.)

The lump over my right eye, the result of my passing out in the bathroom at 5 a.m. last Wednesday and banging my head against the sink (I guess, since I was momentarily unconscious; someone could have snuck in the toilet and beat me upside the head with a socket wrench for all I know), has reduced to a swollen ridge behind the gash where I hit the sink, sort of like an eyebrow in 3-D. The cut was fastened at the hospital with super glue instead of stitches; the glue is starting to wear away now and there's an overwhelming urge to rip it away and see how well the wound has healed, but if I do I know there's a good chance my little blood geyser may erupt again.

         Me in St. Mary's Hospital, Decatur, IL, 10-28-09

My eyeball itself is still extremely red and bloodshot, very sensitive to light, and my right eyelid is swollen. I am astonished at how much resulting damage occurred after an injury above my eye. I shudder to think what would have happened if the blow had struck my eye directly.

I really haven't had much time to think about my kidneys the last couple of weeks, which in some ways may be a good thing, although I continued to take all my medications every day as well as the anti-cough prescriptions.

I still get very brief flashes of the body surges I felt just prior to my blackout spells (which I think may have been caused by a negative drug interaction on top of the coughing attacks), so I'm trying very hard to keep all my body functions under control. It's like I'm running system checks every few minutes. "Head OK? Lungs all right? Eyes? How you doin?'"

And before I forget, the arrival of November means that the HOUR Detroit magazine article I wrote in October regarding my kidney adventures is now available online in its complete version. So if you didn't have the opportunity to read the last half of the piece or were too frugal to buy a newsstand copy of the magazine, you can read the entire story at  HOUR Detroit_Best Foot Forward.

Friday, October 30, 2009

The Doctor With X-Ray Eyes

No, he's not a mad or evil doctor, although in keeping with the eerie and bloody theme of my Halloween week that certainly would be appropriate.

Actually, Dr. Michael Neuwirth is a very friendly and forthcoming fellow – and since he's the man who someday will insert a semi-permanent tube through my belly and into the peritoneal lining of my abdomen, his cheerful personality makes me happy, too.

Karen and I met recently with Dr. Neuwirth (no relation to the actress Bebe – I know because I asked, which should give you an idea of how our conversation went), the chief of interventional radiology for Carle Clinic. I'm not sure, but I think "interventional" in this case is medical-speak for "I'm gonna stick something in ya."

This meeting was simply a consultation, a "how you doin', glad to meet you" session. None of us have any idea when I will need to begin dialysis – the kidney function numbers will tell us that – but people around here are big on preparation and information, so my nephrologist, Dr. Attia, set up this get-together so I would have an idea of what to expect.

Whenever it happens, the operation will be an outpatient procedure performed while I'm under heavy drugs (yay!) and take about two hours to complete. I get to pick the side where the catheter will live, but Dr. Neuwirth says most people prefer the right side. (Which makes no sense to me, since most people are right handed.)

"I go in four fingers to the right of the belly button and two fingers up," he explained. "That's where I do it. I use ultrasound to look for the entryway in. I insert a needle and watch the needle the whole way, as it goes through the skin into your abdominal cavity. Then I insert a wire and the tube goes in over the wire.

"This is all done with image guidance, so I see what I'm doing the whole time. I don't just open you up, stick a tube in and close you up. I do this with X-ray vision."

He's done this procedure hundreds of times, he says, and I feel really good about the fact that when the time comes, Dr. Neuwirth will be performing the surgery. I don't know, I guess you could call it....

Wait for it....

A gut feeling.

Wednesday, October 28, 2009

My Halloween Horror

Imagine this: You wake up in the middle of the night, as you do far too many nights, to go to the bathroom. One second you're sitting on the can, thinking about nothing in particular. You begin to cough.

The next thing you know, you're on your hands and knees on the bathroom floor, surrounded by blood. There's blood on your clothes, blood running off your hands and down your arms, blood dripping off your chin. What the blazes is going on here? you think. Suddenly, you realize the blood you're immersed in is yours!

You clamber to your feet, look in the bathroom mirror and discover there's a huge gash above your right eye – and you have no idea how it got there!

Sounds like the beginning of some hackneyed Halloween fiction, right? Well, it actually became fact for me in the wee hours of Tuesday morning, necessitating an overnight stay for observation in St. Mary's Hospital in Decatur, Ill.

What we now believe happened is, I blacked out while seated on the toilet, pitched forward and bounced my head off the corner of the bathroom sink – missing my right eye by no more than an inch – then came to on the floor. For someone who's never passed out before in his life, and coming on the heels of Saturday's terrifying out-of-body experience (see "Death," Oct. 26), I was quite frankly scared a-plenty.

                     Me in St. Mary's Hospital, Decatur, Ill.

    The offending gash – superglued, not stitched! Ain't science sumthin'?

Of course, nothing similar occurred Tuesday night in the hospital. Karen, who spent the night with me, watched over me like a loving mother hen and insisted on walking me to the restroom anytime I had to go, and besides, you know whatever's wrong with you instantly feels better when the doctor's around. Except for the swollen right eye (that's something to see, isn't it?), a stiff neck and bruised knees, I feel pretty fine, everything considered.

Here's the best thinking now about why this happened: I've had a horrible cough for more than a week, but when I begin coughing uncontrollably (which happened in the bathroom Tuesday) the oxygen literally cuts off to my brain for a moment and causes me to black out. Or, the medication prescribed to help ease my coughing spells, Benzonatate, has dizziness as one of its possible side effects. Or a combination of the two. The doctors don't believe I have whooping cough (which would make me feel about 95 years old), but they have decided to treat my condition as if it is, because my symptoms are similar.

Whatever, as I check out of St. Mary's today, I can't help but think about how much differently this incident might have played out if I still lived alone, and to be soooo grateful for my new family: a wife who cares passionately, a father-in-law willing to be awakened from a sound sleep at 5 a.m. to drive to the hospital, and a mother-in-law willing to get on her hands and knees and clean up the bloody bathroom after we departed.

My mother-in-law, Linda, said yesterday, "Things like this are the reason we are supposed to be living together." I think she's very wise.

Monday, October 26, 2009


I have gone back and forth over whether to share this with you today. But I haven't been able to stop thinking about it since it happened, so perhaps writing about it will prove cathartic. Let's see.

I experienced one of the most terrifying moments of my life over the weekend. It was a moment, too, no longer than that, and unlike anything that's ever happened to me before.

As I may have told you, I've been suffering from a chest cold of some kind for a week or so, distinguished by a bone-rattling cough that sends shivers down my timbers. It's been exacerbated by the fact that, because of my delicate kidneys, there's virtually no cough or cold medicine I can take for relief. On Saturday night, after hacking every 15 seconds or so while trying to fall asleep, I finally got out from under the covers and sat on the side of the bed in frustration.

Suddenly my coughs began coming in rapid-fire succession, one on top of the next, so quickly I could not catch my breath. My body began to shiver. My head pounded. I gasped for air. It felt like a giant ball of energy was gathering steam in the center of my body and trying to burst through the top of my head. I lost control of my bladder.

I actually thought I was about to die.

I felt my spirit trying to leave its mortal shell, and my body fighting to keep it inside. The two have been together a lifetime, you see, and breaking up is hard to do. I have never been around anyone at the moment of their death, but from what I've gleaned from people who have, what they have witnessed is very close to what I encountered.

The moment passed as quickly as it arrived, and I stumbled to the bathroom to clean up and make sense of what had just happened. I thought back to when I was a teenager and accidentally jumped into a lake much deeper than I expected. As I sank lower and lower into the darkening water, I was certain I would never see daylight again. My feelings then and now were eerily similar.

I thought about the suddenness and the inevitability of death. It's coming when it comes, and despite our  most meticulous plans there's not a doggone thing we can do to delay its arrival. I've always been a spiritual person and a practicing Christian, but I thought about how much closer I've grown to God since my kidney diagnosis and how guilty and hypocritical I feel about needing a serious life challenge to renew my faith.

I feel better today, and hope to be completely well by week's end. Thanks for the reminder, Lord. We are Yours, and in Your care. Today is a great day. I plan to live my life to the fullest until Saturday night's fever is more than a false alarm.

Friday, October 23, 2009

A Tree Blows in Decatur

If a tree falls across your driveway overnight and there's no one to hear it, does it make any noise?

Well, it certainly does the following morning. I had another topic in mind to share with you today, but the wild-eyed looks of excitement on the faces of Emma and Madison quickly convinced me that more pressing matters were at hand.

"The tree! Look at the tree!" they wailed in unison.

Well, it was something to see, all right. (That's my mother-in-law, Neena, and our new puppy Sophie surveying nature's revenge.)

Thank the good Lord no cars were damaged (we have four around the house now on a regular basis), nor the brand-new bedroom addition that was just completed for Karen and me. But a single tree branch threw our entire day into a tizzy. Who's going to drive the girls to school? Who's going to move who's car? What about Neena's trip to the doctor this morning? How are we going to cut this monster branch down to size? And what are we going to do with all this WOOD?

Much to my amazement, my father-in-law, Larry, a rugged "man's man" kind of guy if ever I've met one, does not own a chain saw. He's working the phones today, trying to find one he can beg, borrow or rent.

John Lennon has been receiving a lot of credit lately for having once said, "Life is what happens while you're making other plans." I don't know if he said it or not, but it surely does ring true today. My plans have been instantly reordered by forces much greater than you or I.

And watch for our huge blowout sale on firewood, coming soon.

Thursday, October 22, 2009

Mr. McFarlin Goes to Washington – Sort Of

I was shocked to say the least to receive a call Wednesday afternoon from Sally Joy, public policy consultant for the National Kidney Foundation of Michigan. Although we have never met, Sally knew way more about me than I did about her due to the first-person account of my crummy kidneys in the current issue of HOUR Detroit magazine.

(If you haven't seen the article, you can read half of it online at Best Foot Forward. HOUR only posts half its stories on the Internet during the month the magazine is on the newsstand to bait you into buying it, those sneaky rascals.)

Anyway, apparently the article has made me this year's poster child for kidney disease in Michigan, which I find the height of irony because my new medical insurance in Illinois won't pay for the tests needed to keep me on Michigan's donor list for a possible kidney transplant. Sally asked if I would consider appearing before the Michigan Legislature in Lansing next April 28 as part of the Foundation's annual Diabetes and Kidney Day.  

"I'd like you to talk about reducing risks for diabetes, high blood pressure and kidney disease by making smart choices about lifestyle behaviors," she wrote in a confirmation e-mail, "and taking the medications you have been prescribed that manage the health conditions you may have. Of course, a good dose of 'your story' intertwined is mandatory!"

Oh, that shouldn't be a problem. I KNEW there was a good reason to do this blog! I'll have my testimony in Lansing written, rehearsed and polished to a high gloss repeatedly before April rolls around.

"Is it going to be anything like Mr. Smith Goes to Washington?" Karen asked. "Probably," I replied, "but I promise not to filibuster, cheese off the legislators or pass out in a dead faint before I'm through."

The end of Sally's e-mail gave me an unexpected dose of hope as well. "Best of health to you," she wrote. "I hope that in April 2010 you're still living with a stable creatinine [level] and un-hurting feet. – Sally, kidney failure 1985 and a working kidney transplant since 1986."

Twenty-three years with a transplanted kidney? No wonder her name is Joy.

Wednesday, October 21, 2009

Sick and Tired

I caught a bug this week. Not in the literal sense, although there seem to be millions of bugs available for catching out here in the wilderness.

Sometime Monday my throat began to feel like I had been gargling sandpaper. Then the sweats began, followed in close order by chills, stuffy nose and a cough that makes my whole body shudder. No, it's not the swine flu, but it certainly makes me feel like a porker.

I know how this happened. In between moving out of Champaign and into Decatur, I was also trying to find time to write six stories last week on deadline. I was working late hours, deep into the night, and not taking very good care of myself. Now, voluntarily quarantining myself in bed Tuesday and today and feeling like warmed over doo-doo, I'm paying the price.

I certainly don't want to infect the in-laws, school-going girls and tiny new puppy who live here with me. (Karen's out of town on business this week, so she's immune from my plague.) Ironically, I was afraid that the girls might bring home some deathly virus from their classmates that would find its way to me. Instead, I'm the carrier. And what's worse, with all the medication I'm taking regularly for my kidney distress, there's virtually no over-the-counter cold medicine I can take that won't cause further damage. So I sniff, drip and honk. A lot.

All this is making me think, though, about how much better care I will have to take of myself in the future when (not if, unfortunately) my dialysis regimen begins. Sterility and consistency are such vital parts of the whole Peritoneal Dialysis routine – hooking myself up to a machine every night through a catheter implanted in my body, one of the few downsides of the procedure is the threat of infection at the connection site.

As my lifestyle changes to accommodate my health care needs, I'm going to have to become much more organized and regimented in terms of when and how long I work. And if you know me, that'll be like asking me to become shorter so I won't have to worry about big and tall sizes. I've always contended, "You can't control the muse! You have to write when the inspiration hits you!"

Well, my muse had better buy a watch.

Tuesday, October 20, 2009


Say hello to the newest member of our happy new little family in Decatur, IL: This is Sophie, a 10-week-old Lhasa Apso puppy Karen drove 90 minutes into the country to acquire Monday night. (And if I think I already live in the country, you can only imagine where Karen ended up having to go!)

We promised the twins, Emma and Madison, that we would get a puppy for the household after Karen and I moved and got settled in. (That's Emma's right hand hovering affectionately in the photograph.) And although we are faaarrrrr from settled in, we realized after making a few preliminary calls that the cool puppies tend to be snatched up quickly once ads are placed in the newspaper. He who hesitates has an empty leash. So once we saw the classified for home-raised Lhasa Apsos, we leaped into action like the A-Team.

Our new addition had to be a puppy, too; we didn't want to have to deal with an older dog's bad habits. If our dog's going to have any bad habits, by gum, she's going to get them from us!

You can only imagine the response when Karen arrived home with this little hairball in her arms. "Is that our puppy?" Maddie squealed with delight. After watching the whole family, including my mother- and father-in-law, interact with her, I have no doubt Sophie will be the most loved and attended-to puppy in all of central Illinois, if not the nation.

For her part, Sophie was very slow to warm to us. Karen was told that she didn't have a lot of interaction with people because she had been promised to a family member who eventually decided against taking her. (How can that be?) I got to thinking how extraordinarily traumatic this whole experience must be for a dog. One second you're hangin' in the barn with Moms and the rest of the litter, not a care in the world, and the next you're swept up by some stranger, tossed into the back seat of a car and driven away to parts unknown. It's a doggie kidnapping!

She was shy, and I'm betting she was terrified. But the girls couldn't keep their hands off her, of course. And I actually saw the bonding moment when, while in Madison's arms, Sophie realized we weren't holding her for ransom and might actually be OK people. Her tiny tail began wagging, her tongue slithered out into licking position and her chubby little bod began waddling with a lilt in her step.

We all need those bonding moments, when it suddenly hits us that we are loved, we are protected, and none of the people surrounding us are going to let anything cause us harm. Welcome home, Sophie.

Monday, October 19, 2009

A Moving Experience

                          A Swarm of a Few Good Men Descend Upon Our Home

Well, our move from Champaign to Decatur, Ill., Saturday could not possibly have gone smoother. Six (count 'em!) husky, prairie-strong young men – Ryan, Jeremiah, Rick, Mark, Alan and Michael – from Harvest Bible Chapel where my in-laws are members drove the 50 miles from Decatur to our apartment with pickup trucks, strong backs and cheerful attitudes.

It wasn't so much that they volunteered their free time to haul the furniture, beds and appliances of near strangers on a Saturday morning, though that was remarkable enough. It was the way they did it. You know how sometimes you agree to help out with a big, physical task on the weekend, then dread having made the commitment once the weekend arrives? Not here.

Every one arrived with a smile on their face, goodwill in their heart and a tangible sense of camaraderie. These guys clearly enjoyed being in each other's company, and it showed. Many hands didn't just make light work; they made lighthearted work. We were completely finished in less than four hours, including the one hour for transportation.

Words cannot even begin to express my, and our, appreciation for their efforts. I was deeply touched, and thankful. And the next day at church, they were still happy to see us! Imagine that. The simple acts of caring and compassion, the willing spirit; this is how being a Christian manifests itself in daily life.

And when Emma looked Karen in the eye Sunday night and asked, "Now are you going to be living with us forever and ever and ever?" all the sweat and muscle aches seem justified.

Friday, October 16, 2009

Busting a Move

Knock, knock.
Who's there?
Chaos who?
Total chaos.
Oh, I've been expecting you. Come on in!

No, it's not funny. And I'm not laughing. As the crowning blow to this dizzying rollercoaster of a year (and month!), this is the weekend of the Big Move.

On Saturday, at least four wonderful men from Harvest Bible Chapel in Decatur, Ill., where my in-laws are members but we are not, will make the 50-mile trek to Champaign-Urbana to help Karen and me move from our Champaign apartment to the basement of my in-laws' home. I feel like such a slacker whenever I say or write those words, and I've had some fun watching the reaction of my friends. "Yes, we're moving into Karen's parents' basement," I'll say, mournfully. "You know, times haven't been good...."

Actually, they've been very good. The real reason we're relocating is to help take some of the parenting pressure off my in-laws, Linda and Larry, as we all try to raise Emma and Madison, the 9-year-old twin girls entrusted to their care. (And, although we don't talk about it as much, to provide some family assistance in case my condition worsens or I receive a kidney transplant and need continuous care.) The basement has been remodeled, a new bedroom and closet space constructed, and it's all quite nice and cozy.

Now, I can't begin to tell you how impressed I am that Harvest Bible parishioners would give up a chunk of their weekend to help essentially two church visitors move their household. I don't know a single person on earth who enjoys moving in any fashion, and as far as I'm concerned this is Christian charity in action and we are extremely grateful. But if you count the year I spent in a Ferndale, Mich., apartment before marrying Karen and coming to Champaign, this will be my third move in two years. I am plumb sick of moving.

On top of it all, after writing four feature stories on deadline this week, today is the first day I've had time to assist Karen with packing and organizing. One day to prepare for a major life change. Whoopee.

Since our lease in Champaign doesn't expire until the end of the month, our plan is to move the furniture and big items out Saturday and keep a TV and air mattress here so that Karen and/or I can spend the last two weeks cleaning out the place. This actually doesn't sound too bad to me; in Ferndale, I slept on an air mattress in my living room every night, even though I had a bed in my bedroom, because I wanted to stay close to my 50-inch TV. I've never claimed I was sane.

So at least until November, I'll be living in two cities and not completely entrenched in either one. Meanwhile, I'll be packing, discarding, recycling and working steadily. Chaos, as long as you're here, hand me that empty box, willya?

Thursday, October 15, 2009

Prescription for Terror

Yesterday I visited one of the most frightening places in my new lifestyle: the drive-thru prescription window at Walgreens.

I had run out of Zemplar (sounds like the evil planet in a Star Wars spoof, doesn't it?), my Vitamin D supplement, and dropped off the empty vial the day before to have it refilled. It's the ultimate in convenience; you don't have to get out of your car, or even turn down the radio, for that matter. Just slow down long enough to toss the vial into the bank-teller-like drawer and speed off. After all, your name, address and the name of your drug are already on the container. What do they need you for? Walgreens goes so far as to send an e-mail alert when your prescription is ready for pickup, so you don't waste a return trip. All very smooth and easy.

The scary part comes when you go back to get the medication. Even though I have an insurance plan that greatly reduces the cost of most of my prescriptions – often no more than $10 – some of my drugs are so expensive that even with my deep insurance discount, the price is enough to make me swallow hard and break out in a mild sweat. And because the price isn't included on the label, it's always a guessing game how much any particular drug is going to cost. It's The Price Is Right, sickness or health edition.

I place my debit card in the slot, look mournfully through the glass into the pharmacist's eyes, and pray I can come closest to the actual retail price without going over my bank balance. The prescription and the card come back in the drawer. The receipt says $45.

Forty-five dollars! For these little bitty pills? If I knew what was in them, I'll bet I could make them myself for half that much! Shaking my head and wiping the sweat from my brow, I slowly place my debit card back in my wallet and suddenly remember that my Renagel, the phosphorus blocker, is about to run out, too.

It's at least twice the price. Horrors.

Wednesday, October 14, 2009

Do or Die-t

Our new nutritionist, MaryJean, prescribed a 1,500-calorie-a-day diet for Karen and me if we plan to lose weight in a steady, healthy manner. (In case you missed it, I need to dump around 30 pounds in preparation for the procedure that will insert a catheter next to my belly button for a form of kidney dialysis.)

I tried to explain to MaryJean that I can do 1,500 calories just by poking my head into the refrigerator, but she suggested a slightly stronger form of self-discipline may be required.

The major problem with trying to diet while working at home is that food is never more than a few steps out of reach. Like the old Richard Pryor routine about cocaine, sometimes when I'm very quiet I swear I can hear the food calling out to me from behind the cupboard doors.

"Yo, Jim! Jimbo! Got some mighty tasty chips in here. Bar-be-cue, too, just like you like!"

"Hey, what about us pre-cooked bacon strips? You know you want some of this, Jimmy Mack!"

"Don't forget about us sardines! We're packed tight, but we taste right!"

Great googly-moogly, do I love to eat. Sometimes I think I really just like to chew. Maybe if I could develop a cud, or Karen could bring home a chew toy from PetSmart, it might serve as a reasonable substitute.

Karen found a Web site called where you can input what you ate for breakfast, lunch, dinner and between-meal snacks and the site will calculate the amount of calories, fat, sodium, etc., that you consumed. We tried it for the first time today.

My breakfast was a piece of cake – well, not literally, but it was a simple computation for MyFoodDiary – a bowl of cereal with soy milk and a cup of decaf tea. I breezed through lunch as well, a simple garden salad with modest embellishments, and even the single serving of Skittles I had for an afternoon snack (thanks a lot to whoever brought over the Halloween candy!) wasn't too damaging.

But when Karen got home from work she appeared too pooped to poach, bake or broil, so we decided to GO OUT for dinner. Ooooooh. After some deliberation, we decided on Outback Steakhouse. We could order grilled chicken, rice, maybe a few shrimp on the side and a modest salad. We'll drink ice water, not pop. I mean, how bad could that be?

Yowza! Did we learn a first-night lesson! We blew the entire 1,500-calorie wad, and more, on that simple dinner alone. I feel like I should just relegate myself to bread and water, but I probably can't do the bread, either. This is all so new to both of us.

And will someone tell those sardines to shut up?

Tuesday, October 13, 2009

You'll Eat Nothing, And Like It

On our own initiative, Karen and I obtained a referral and made an appointment last week to see a nutritionist. I have not been ordered to begin a restrictive, "pro kidney" diet yet, but we figure I will at some point so I might as well get in the habit.

Besides, in order to have the permanent catheter needed for Peritoneal Dialysis inserted into my abdomen, I've been told by my nephrologist that I probably need to lose about 30 pounds of belly fat. (All my pants seem to agree.) Karen has lovingly decided to go on the diet with me, so I won't begrudge my lettuce while she's downing cheeseburgers.

We have tried to make better and wiser food choices to coddle my damaged kidneys, but Karen has found that the diet information she's researched on the Internet seems to be wildly contradictory from site to site. We decided to go to one professional source that we can actually look at and talk to, and abide by what the nutritionist says.

So we met with an effervescent wisp of a woman named Maryjean who asked me to come with a list of everything I'd eaten in the previous 24 hours, read it, then shook her head a lot. Obviously we'll need to eat less and exercise more if we intend to lose weight, but there's so much less to eat, too.

We received a list of foods that are naturally high in potassium, which is Kryptonite for kidneys, and generally should be avoided. That list includes:

Tomato juice
Tomato paste
Carrots (raw)
Baked beans
Potato Chips
Mushrooms (raw)
Lima beans
Melons (all kinds, including water!)
Orange juice
Brussel sprouts
Peanut butter
Hot chocolate

What's left, you ask? We asked, too. Maryjean smiled sweetly and talked about creative food alternatives, most of which sounded to me like eating wallpaper paste.

I don't think I'd mind so much having medical issues if I could at least eat what I wanted. The two best things I do in life are eat and sleep, and one of them is about to be severely compromised. I've said it before and I'll say it again: I foresee a steady diet of chicken – baked – and rice in my future.

Monday, October 12, 2009

Pill Popping

Back home after a jolly and fulfilling Homecoming weekend at my alma mater, Hope College, I'm putting away my rectangular lime-green traveling pill case until it's time to go wandering off somewhere again.

Karen gave me the plastic pillbox last Christmas as one of my stocking stuffer gifts. I laughed, but I also understood immediately the thoughtfulness behind her present. She knows I have to gulp a bunch of medications and supplements every day in my current condition, and being the extremely organized person she is (she's a FranklinCovey trainer, you know), she wanted to help me do so as efficiently as possible.

I can take them without water now. So adept have I become at swallowing pills that, except for the front-loaded morning dosage that can be as many as 11 pills at once, at the appointed times throughout the day I just pop 'em in my mouth like breath mints and let them slide down my throat. This is not a skill I wanted to become proficient in, but if practice makes perfect I should be nearly immaculate.

I've talked about my medications before but never in much detail, so I thought I'd like to introduce them to you.

Every day I take:

25 mg of carvedilol, a non-selective beta blocker to control my high blood pressure (thought to be the primary cause of my kidney distress), twice a day;

10 mg of prevastatin, to reduce my total and LDL cholesterol;

800 mg of renagel, used to reduce levels of phosphorus in people with kidney disease, at every meal;

100 mg of allopurinol, intended to decrease the levels of uric acid in my body and prevent a recurrence of searingly painful gout, twice a day;

160 mg of Exforge, also prescribed for treatment of high blood pressure;

25 mcg of Vitamin D, a supplement to replace the vitamin that healthy kidneys naturally produce to maintain proper phosphorus and calcium levels in the body;

one-half of a Centrum Silver multivitamin, as my kidney specialist was concerned about the potential effects of taking some vitamins at their full potency (it's bad enough that it's a Centrum "Silver," but then only half a pill? Boy, does that make you feel old!);

100 mg of Vitamin B-1, which I added on my own. I read somewhere that it could help in the treatment of kidney disease, and my doctors, while skeptical, admitted that it couldn't hurt.

In addition, every other day I also take:

0.6 mg of colchicine, also prescribed to prevent my gout from flaring up again, and

1 mcg of zemplar, (and I'm taking this off the Web site), "a synthetically form of Vitamin D indicated for the prevention and treatment of secondary hyperparathyroidism in chronic kidney disease."

It's quite an assortment. I don't know how AIDS patients feel, but I can empathize. If you didn't think or feel that you were sick, pouring a pile of pills into your hand every day certainly will serve as a reminder. When I travel for more than a few days, it takes me almost a half-hour to sort all my medications and supplements, recall the proper dosages and stick them in their appropriate Monday-through-Sunday slot in my neon green pill case.

I guess it's that shade of electric green so I won't lose the case.

Not that I wouldn't like to.