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.