Going Through the Change

Be it underwear, socks or dialysis nurses, I am highly resistant to change. So it was a morning of great trepidation and personal upheaval recently when two events that signaled a major transition in my life occurred back to back: Diane King, my beloved kidney counselor, confidant and guide, agreed to meet me for a farewell cup of coffee the hour before I was scheduled to be examined by her replacement, a nurse named "Mar."

"Mar?" Sounds like something you do to a coffee table, not to a patient.

Anyway, Diane and her husband, Bruce, were packing their lives into a U-Haul and preparing to move to California and an uncertain future. (She told me the State of California had not yet accepted her license to practice nursing, so she wasn't sure when she might begin working there.) Yet she still made the time to drive downtown and meet with one of her patients at his insistence just so he could officially say goodbye, which should tell you all you need to know about the kind of person Diane King is.

She arrived at the coffee shop on Main Street with Bruce in tow. What an adorable little couple they are! They're the same height, they've begun to resemble each other the way married couples do after years together – they even sound the same! Ah, love.

Because I have referred to her often as my AWWOE (Angel Who Walks On Earth), I thought it fitting to buy her the gift of a small ceramic angel, holding a small circular sign reading "Thank You," as a token of my deep appreciation. I know, it'll just take up space and gather dust on her new office desk, but it's far more practical for California than the full-length mink coat I wanted to buy her.

      Diane opens the wrapped Haines and Essick gift box as Bruce looks on.

Angelic couple say hello to their little friend.

Then they said goodbye to their other one. We spent a delightful hour together. I'll never forget Diane. She taught me how to take care of myself and guided me through the emotional upheaval of dealing with this miserable disease. Then, with a lump in my throat and fear in my heart, I drove my Chevy at a snail's pace through the downtown streets to the DaVita office for my first examination by "Mar."

Mar. 

"Mar," as it turns out, is short for Marion. As you can see, she's quite attractive, and she retains the slightest hint of an accent from her native Germany. (Much to my disappointment, she does not wear a monocle.) 

"I need to tell you right up front," I said upon our introduction, "I'm sure you're a very nice person and an experienced, talented nurse. But it may take me a while to warm up to you because I was very close to the person you're replacing and...I'm...just going to need some time."

(In my mind, the pipe organ is reaching a dramatic crescendo.)

Mar was extremely understanding, kind and efficient. However, she may not be Diane's permanent replacement: she explained that her home office is in Springfield, and she's filling in at the Decatur office until a new nurse can be hired. (If you're looking for a fulfilling career, there is an ongoing shortage of dialysis nurses. The job features great one-on-one contact and the opportunity to teach and make a real difference in the lives of patients as well as their families.)

So for the moment, at least, my new full-time kidney confidant has yet to be determined. Maybe it'll be Mar. I hope so. But maybe not. No one knows for certain.

Change, they say, is good. What do they know?

Diane, We Hardly Knew Ye

My beloved dialysis nurse, Diane King, has been trying to reach me all week. We've been playing telephone tag, deluxe edition. I naturally assumed she was calling to congratulate me on my recent lab results. My potassium levels were deemed "Very Good," and I received the coveted gold star for my outstanding phosphorus report!

If only that was the news Diane had called to discuss.

"I just wanted to let you know that I'm leaving DaVita," she announced, in her ever-cheerful lilt.

Gasp.

"And Illinois."

WHAT?

HORRORS!

Clearly I was not hearing the words I was hearing. My own personal AWWOE (Angel Who Walks On Earth), the woman who literally took me by the hand and taught me how to dialyze myself, who came to my home to prepare me for the process – who has drawn my blood and analyzed my urine, for goodness sakes (and there aren't many ways you can get more personal than that!) – my lifesaver woman is announcing that she's leaving me – uh, leaving town?

Say it ain't so, Lady Di!

                                             Diane and me, in happier times.

It's so.

Her husband, a minister, is semi-retired, which allows the couple some geographic flexibility. Diane has found a job with a home Peritoneal Dialysis (PD) firm in Modesto, Calif., where she can be nearer to their son, who's also a minister, and her baby granddaughter. Awwww. How can anybody be upset about that?

Well....

Suddenly (so as to date myself), my mind cues up the lyrics of To Sir, With Love. "A friend who taught me right from wrong, and weak from strong/That's a lot to learn....." Although I guess in this version, I would be playing the part of handsome young Sidney Poitier and Diane would be warbling as Lulu. She's a lulu, all right.

Diane tells me her position as my primary dialysis nurse will be taken by some German woman. I tell her I will try to keep an open mind and not be frightened.

"The hardest thing is going to be leaving all my patients," Diane says.

No, Diane. The hardest thing will be us patients going on without you. Godspeed.

Brace(let) Yourself

Well, I received my shiny new medical ID bracelet in the mail last week, and it's a beaut. Sweet.

It occurred to me that if I was going to be spouting off about kidneys all the time like this, it might be a good idea to become semi-legit. So I sent in an application and donation to the National Kidney Foundation of Illinois, and in return the foundation sent me a spiffy silver medic alert bracelet with a red hexagon in the center and that snake wrapped around a stick, so in case I get bonked on the head or become otherwise unable to communicate everybody around me will know I'm not what you'd call 100 percent healthy.

On the back of the bracelet there's room for five tiny lines of engraved text. I consulted with my AWWOE (Angel Who Walks On Earth), DaVita dialysis nurse Diane King, to determine what those lines should say.

We agreed upon my name (although I probably could have figured that out on my own);

 Jim McFarlin 

my treatment;

Peritoneal Dialysis

the name of my nephrologist (though his full name, Abdel-Moneim Attia, is too long to fit on one line so we decided to shorten it to            

Dr. Abdel Attia     

I hope they can find him in a pinch);

his phone number, unnecessary here;          

217-DIA-LSIS

and my only known allergy.                             

Penicillin 

    

I now have four bracelets on my right wrist. I'm starting to feel like a Jamaican. In addition to the new silver lifesaver, I have the brown beaded bracelet with the butterfly in the center that our 10-year-old, Madison, made for me early in our relationship. I can't imagine taking that off anytime soon; maybe when she gets married. And yes, real men can wear butterflies.

Then there's the bright blue-and-green rubber bracelet I wear from AFSP, the American Foundation for Suicide Prevention (http://www.afsp.org). It's a cause I support and a bracelet I wear on behalf of Jake Kaidan, a beautiful and engaging teen who took his own life four years ago, devastating his mother and my dear friend Lisa Johnson and her husband, Frank. I don't think there's anything that affects me more deeply or intensely than teen suicide. What an incredibly tragic waste.

And there's the simple green plastic strand I wear because Madison thought it matched the color of the AFSP band. I use it to remind me to stay green (I'm a committed – some might say fanatical – recycler) and to make more green stuff any way I can. Wouldn't it be funny if emergency medical people couldn't find the medic alert bracelet amid all the other bangles? 

Hey, wait! That wouldn't be funny at all!

Washing My Hands of Everything

From the very beginning of this dialysis dance, one is taught that cleanliness is next to healthiness. You quickly learn the difference between "clean" and "sterile." (You can achieve the first; try never to mess up the second.)

The one teaching that stays with you throughout the entire process, however, is what is known as "The DaVita Hand Wash." I assume this means that DaVita invented this particular style of hand sanitizing. Otherwise, why would they put their name on it? DaVita is way too respectable an organization to claim something they didn't originate. (Can you see some emergency room doctor in Newark seeing this and shouting, "Hey, this is the way I wash my hands! Where's my lawyer's number?")

The DVHW is a multi-stage process which I will now proceed to demonstrate electronically through photographs. (Although this might be considered a rather antiseptic way to present it! Get it?)

As it was taught to me by my incomparable nurse, Diane King, first one must wet the hands thoroughly with warm water.

                                     Me, wetting my hands.

Apply antibacterial soap to the palms and rub vigorously.

               Pretend you're rubbing your hands together in wicked glee.

Don't forget the bacteria-filthy backs of your hands.

      When was the last time you ever washed the backs of your hands?

Or that virgin semicircle between the thumbs and forefingers.

                                This part is actually kinda fun.

Between your fingers, too.

                                But this part feels kinda silly.

Now, concentrate on scrubbing each of your 10 cuticles individually.

                   The doctrine of separate but equal, applied to fingers.

Then once around the wrists, the palms and backs of your hands again, and rinse thoroughly.

                                          Rub-a-dub-dub.

Use a paper towel – not cloth, too many germs – to remove the excess moisture from your paws.

The tricky part, after all that energetic scrubbing and sanitizing with the DVHW, is not to touch anything on your way from the sink back to the dialysis equipment. If possible, use a faucet you can turn off with your forearm rather than your fingers (see photo above), and hit the light switch with your elbow. It's a skill you can develop. Really.

I am firmly convinced that if every restaurant worker in America adopted the DVHW, we could eat at any fast-food joint in the country – maybe even White Castle – without fear.

You Like Me! You Really Like Me!

I think it's fair to suggest that very few people in the history of crappy kidneys have experienced a more enjoyable monthly checkup than I had last week at the DaVita clinic in Urbana-Champaign. Not only are all of my most important biological markers (phosphorus, calcium, protein and the like) at or above their recommended levels – "You are doing great," smiled my nephrologist, Dr. Attia – but my ego also received a major booster shot.

No fewer than five employees at the DaVita location, including the regional director herself, Ellie Suhl, took time out of their busy Friday to stop by my examination room to meet "the man who writes the blog" and compliment me on the quality of the work and for bringing attention to kidney disease and the outstanding work DaVita does in patient care. One woman said she especially giggled at my description of Diane King, my angelic dialysis nurse, as "Pollyanna," which meant that she not only really read the blog, she also had reader retention!

Now, this means two things:

(a) Many more people than you and me are reading these blatherings, to my great surprise, and

(b) I'm going to have to stop cussing in this blog and take it much more seriously every time out. After all, ladies are watching!

One nice added attraction of my appointment was being able to tell Ms. Suhl and several other people what I'm telling you now: DaVita's corporate marketing department in southern California somehow got wind of "Just Kidneying," and a delightful young woman interviewed me last week for a potential feature story in DaVita's national magazine!

Amazing. Life is a funny ol' dog, ain't it? Thirty-five years spent writing about other people in magazines national and local, and the first national article ever done on me comes as a result of renal failure.

Why, I could become the King of Kidneys! The Dean of Dialysis!

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!

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.

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.

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.