Maybe the Greatest Thing Ever Invented

My blood tests this morning to monitor my kidney function went like every other blood sample sucked out of me every week for the past six months – that is, until the supervising nurse spied the green bracelet with the medical symbol on my right wrist. "What is that?" she asked.

What, indeed. I have been meaning to tell you about my Care Medical History Bracelet for the longest time, but it has grown so comfortable on my body that I'd all but forgotten about it until the nurse roused my memory.

Shortly after my kidney transplant last November, my magnificent wife, Karen, realizing that my list of medical advisories, medications and other vital information suddenly increased a dozenfold, went online to http://medicalhistorybracelet.com/, found this brilliantly simple little band and gave it to me as a gift.

The Care device is the next generation, 21st century edition of the medic alert bracelet. It fastens securely around your wrist, but when you pull it apart – Viola! A computer flash drive is contained within.

Plug it into your home computer and, with the aid of some pre-loaded software, you can input every bit of essential information about yourself and your medical condition – medicines, dosages, blood type, primary physicians and specialists, emergency contacts. There's even a place to download a photo to prove it really is you wearing your bracelet.

So if you are involved in a major calamity or trip over a chair in your office and knock yourself loopy, everything any emergency medical technician would need to know about your health is available to them via their nearest computer without you having to mumble a word. And the information is easily updated, making Care a huge upgrade over the traditional engraved alert bracelet.

It only costs about $30, and takes no more than an hour or so to fill in the necessary blanks. (If you've been careful to compile all your data in advance, that is.) In a perfect world, I'm thinking, every man, woman and child would have one of these bad boys strapped on tight. Next step: Computer chips implanted in your ear, just like your Cockatoo!

The Care website says the bracelet is waterproof, but I take it off when I bathe anyway. Can't be too careful where metal and water are concerned. Two drawbacks, though. Far as I can tell, the flash drive software is readable on both Macs and PCs, but you can only input data on a PC. So if you're an Apple addict (like me), you'll probably have to borrow a PC from somebody to complete the process.

Second, and more critical, as my supervising nurse noted today, YOU CANNOT LOSE THIS THING. More than wearing your heart on your sleeve, with Care you literally are wearing your life on your wrist. And since there's apparently no way to lock the flash drive's info (nor would you really want to), the Care Medical History Bracelet could be an identity thief's wet dream.

But the positives far outweigh the negatives, in my view. You just need to take extreme care with Care. And like the infomercials say, "Makes a great gift."

Facebook Goes Organ-ic

Oh, what an historic start to May 2012 this has been!

Not because it was my first sober Cinco de Mayo in memory. It's because last week, through the massive social media miracle of Facebook, Mark Zuckerberg and his dorky disciples in Silicon Valley made the world a better place by making it easier for millions of people to register as organ donors.

Can I get a big, resounding "YAY!" on this?

The news broke wide on May Day, prompting one of those "D-uh!" moments for most of us. Of course! How obvious! How did we not think of this ourselves? 

Facebook is the driving Internet power connecting countless masses of us on a daily (some would say a moment-by-moment) basis. Every day more than 18 people still die waiting for a matching donor organ that is never located. (Which, by my precise calculations, is exactly 18 people too many.) Maybe one reason more organs aren't available is that more people don't realize how dire the crisis is or how to register as a donor. 

Pairing the need with a vast network of potential givers. It's a match made in cyberspace heaven. 

Even though I registered as a donor years ago in my native Michigan, long before I ever dreamed I would actually need one of the little buggers myself, I registered again through Facebook for my current residence in Illinois primarily to see how simple the process was. And let me tell you, it is easy-peasy-lemon-squeezy.

Just go to your Facebook Timeline – I know you still don't like it but it's here to stay, so get over it – and under your disarmingly cute profile picture click on the words, "Life Event." That will take you to a drop-down menu of five items; slide down to the one reading "Health & Wellness," scroll over those words and the FIRST ITEM you should see at the top of the list to your right will read "Organ Donor."

Click on "Organ Donor," take about 33 seconds to register your intention to donate in your state of residence through Donate Life America, and your organs are officially up for grabs. It doesn't hurt. In fact, it may make you feel much better. 

You can proudly boast on your Facebook Timeline that you now are a registered organ donor (I did), or keep the information just between you and Donate Life America. The choice is yours.

Did Facebook do this to make itself look a little more human and humanitarian in advance of its humungous IPO this month? Did Zuckerberg's longtime girlfriend Priscilla Chan, a med student, apply gentle persuasion to get him to consider such a compassionate act?

You know what? To the next patient withering from organ failure and nearly out of hope who hears his or her doctor say, "We've found a matching donor for you" because of Facebook's remarkable reach, I don't think the motive will matter one teeny bit.

Learning to Share

Getting the news that you have a serious, potentially fatal illness – like Stage IV kidney failure, for instance – can be a senses-shattering event. I remember when I was hearing about my Chronic Kidney Disease (CKD) diagnosis for the first time, there was a moment where the doctor's voice morphed into the teacher from the Charlie Brown cartoons: "Bwah-BWAH-bwah-BWAH-bwah-BWAH."

The initial reaction for most of us, I believe, is to want to internalize and hold all the scary details inside. Still, once you come to grips with the reality of your situation, you've got to tell somebody about it. For comfort, for advice, for the illusion of control – if nothing else, so that someone will know what's happening to you and where to look should you drop off the grid for a few days.

Despite what you read in this blog, I find it hard to talk about myself and my illness. Maybe you would, too. Recently I was asked by the "Live Now: Rethink Kidney Disease" website, for which I am proud to serve as contributing editor, to write a piece offering suggestions on how to share the facts about your CKD with others. I'm guessing some of the advice could translate to any other disease, or simply to bad news in general.

I would reprint the piece here in its entirety, but then you probably wouldn't visit the "Live Now" site and they would stop paying me. Hey, Mama didn't raise no fool!

So here is the link to the article, and I hope you find something of value in it. I even interviewed other people for their insights, so it's not only me babbling. The piece is called, appropriately, "Telling Others About Your Chronic Kidney Disease".

Now It's REALLY an Award-Winning Blog

The FedEx driver scared the boogaloo out of me the other morning, banging on our front door to drop off a package. Now, I'm accustomed to receiving overnight deliveries – usually DVDs to review in my capacity as a television critic – but since I was deep in thought and less than three feet from the door at the moment, I had to swallow hard to get my heart out of my throat and back to its normal location.

Ah, but this particular package was no skinny disk or press kit. It was way too heavy, and felt kinda wooden. To my great surprise, it was a plaque!

It's not every day you receive an award via FedEx (well, maybe you do, but I live a fairly humdrum existence), so I ripped the packaging apart like a 6-year-old on Christmas morning. It was my 2011 Robert Felter Memorial Award from the Renal Network, Inc., which I proudly announced last June in a post titled "This Award-Winning Blog."

The inscription reads the award "Is Proudly Presented to JIM McFARLIN (hey, that's the way it looks!) For Working on Behalf of Kidney Patients."

Aw, shucks.

As I've noted before, I'm certain the award wasn't bestowed solely because of this "Just Kidneying" blog. I've made numerous speaking engagements the past few years on behalf of Peritoneal Dialysis, kidney disease prevention and organ donation, including an appearance before the Michigan Legislature, and visited dialysis clinics to talk to patients one-on-one and lend encouragement. I'm contributing editor for the "Live Now: Rethink Kidney Disease" website, and I've written articles for HOUR Detroit magazine and several other publications concerning Chronic Kidney Disease (CKD).

But virtually none of those things would have happened had it not been for "Just Kidneying," which brought my CKD and my feelings about it to the attention of decision makers, dialysis clinic personnel and convention planners in many places. So, just like at the Oscars, I accept this award on behalf of my blog. I'm extremely honored to receive it.

I didn't expect it to arrive in a plain white FedEx envelope, however. Initially I was told the Robert Felter (I think I'll call it "The Bobby") would be presented in a semi-formal dinner ceremony, most likely somewhere near the Renal Network's regional headquarters in Indianapolis. But the congratulatory letter that accompanied the plaque regretfully informed me "that the organization with whom we were collaborating on the patient meeting was not able to secure the necessary funding. Thus, there was not a Network-sponsored patient meeting."

That's the kind of award ceremony I would get: a package dropped at my doorstep.

Dang. I was actually looking forward to that rubber chicken.

Liquid Courage, or The Rinse Cycle

Last month we celebrated the life and legacy of that immortal American and civil rights icon Dr. Martin Luther King Jr. by purchasing a gleaming white new Speed Queen washer and dryer at a local appliance store in Champaign. Gotta love those MLK Day sales!

Because I have taken on the role of househusband during my two years of dialysis treatments and subsequent kidney transplant, Karen's excitement over our new acquisition made me feel a little like a character out of The Help: "Look, Jimmy, we bought you a brand-new washer and dryer so you can do more loads of wash for us than ev-ah!"

Oh, joy.

Truth to tell, I love doing laundry. There's a certain zen tranquility for me in making dirty things clean again and folding them with the precision of origami. What I didn't love even a tiny bit was schlepping pounds of clothes to the laundromat every couple of weeks, hoarding quarters and surrounded by strange smelly people.

But the laundromat was a necessity, because (and here's the tie-in to my kidneys, in case you were wondering) up until the transplant, we had to use the utility room in our apartment to hold all the cases of my dialysis solution.

In the way that life works, two days before we received "the call" that a donor kidney was available for me, the company that made my dialysis supplies dropped off its monthly shipment of 32 boxes of Peritoneal Dialysis fluid, about 2x2 feet each, with two five-liter bags of liquid in each box. I had used exactly one case before the transplant team called.

When we returned from Barnes-Jewish Hospital in St. Louis with my gleaming new kidney, we called the dialysis company and explained the situation.

"I'm sorry, sir, but we can't take the cases back."

"But they're unopened. Maybe someone else could use them."

"I'm sorry, but there's the possibility of contamination."

"Contamination? The boxes have the original factory tape on them! The bags of fluid are sealed in a second plastic bag to keep them secure! How on earth could they get contaminated?"

I'm sorry, sir, but that's our policy."

Somebody please, tell me again why the cost of health care in America is so high?

We called my dialysis nurses at DaVita Champaign. Same story. I never fashioned myself as the sadistic poisoner of Peritoneal Dialysis bags, but I must look that way to a sizable group of people. We're still looking for takers for the drainage bags, extension tubes and other paraphernalia that accompany the PD process. No questions asked. Just come get 'em! We'll even deliver!

So, discouraged by having no other option, Karen and I staged our own Seven Percent Solution at our kitchen sink: the Great Dialysis Juice Dump. Each of us armed with a tiny Olfa Touch-Knife (that I extolled in a December 2010 blog titled "Flashes From the Frontline"), we attacked the cases – slicing open the cardboard boxes, flattening them, cutting open the hard plastic coverings and piercing each five-liter bag, letting the dialysis liquid goosh into the sink. What emotional release!

It was a true team effort; even with both of us working shoulder-to-shoulder and focused on the task, the process took almost two hours to complete.

We ended up with a stack of cardboard boxes nearly three feet high and an overflowing pile of plastic bags. Being the dedicated recycler I am, I personally carried every box and bag outside to the nearest appropriate bin.

Karen applauded my effort.

We were both tremendously saddened to destroy so much lifesaving fluid in such a wasteful manner. However, in a very real way, our new washer and dryer represent far more than timesaving appliances that allow Jimmy to do more loads more often. They stand as constant reminders that the Peritoneal Dialysis that required their space and dominated so much of our daily lives is no more. Hallelujah!

All because of a new appliance of mine that's washing my blood every second. Oh, what a lucky man am I.

Direct to Video

I'm certain that some of you have seen this, but I'm just as sure that many of you have not, and it really should be added to the JK – Just Kidneying archives for posterity's sake if nothing else.

On the morning of Friday, Nov. 18, 2011 – a date that will live in happy history for me as the date of my kidney transplant – I was lying on a gurney in a pre-op area of Barnes-Jewish Hospital in St. Louis, flying high on that happy juice they pump into you to "relax" you prior to surgery, when my artificial bliss was interrupted by a complete stranger. 

Unbeknownst to me, the Just Kidneying blog had become very popular in certain sections of Barnes-Jewish, including the hospital's public relations department. My unknown visitor was a PR person for the hospital who had heard I was in the complex for my operation and wanted to interview me for the Barnes-Jewish transplantation blog, "The Rare Gift". 

Now? Right this very second? 

Karen, who was interviewed for the video clip as well, had spent the night before with me in this cramped room, losing sleep with nervous anticipation, and like me had not enjoyed the benefit of hot water, deodorant or a mirror. At that moment, I gained an inkling of how celebrities must feel when they are asked for autographs or photos at the most inconvenient times. 

But I have become such an advocate for transplantation, the Barnes-Jewish team and organ donation, I hardly could refuse such a request. 

This was the result:

Needless to say, I think I've been better! 

But as you know, all's well that ends well, and given how the surgery turned out it's been a long time since I've been any better than this.

Postscript: As we begin 2012 together, this post marks my 100th blog entry since I began Just Kidneying in September 2009. Pretty amazing for someone who never had any intention of ever writing a blog. As Bartles & Jaymes (remember them?) used to say on those wine-cooler TV commercials, "Thank you for your continued support."

The Edge of Darkness

Although it has diminished greatly, I remain in constant abdominal pain as I write this. I just ache. Every now and then, as my severed nerve endings begin to heal, I get eye-watering stabs along my incision line.

For now, most of the area surrounding my hip-to-hip incision is numb. People who've endured similar surgeries tell me full feeling may not come back for years. If ever.

My supply of the really, really incredible prescription painkiller, Percocet, is dwindling rapidly; I cherish every remaining pill like it could pay off the national debt.

My renal doctors in St. Louis have scheduled me for an ultrasound here in Champaign today to rule out the possibility of a blood clot in my new little kidney. Great. A few days later, my PD catheter, now a useless appendage hanging out of my side, will be removed in an outpatient procedure. More pain. More recovery.

My blood pressure, which had been kept artificially low at around 110/70 by medication prior to my Nov. 18 kidney transplant, is now soaring wildly out of control again, Today it was 165/90. The new cocktail of hypertension medicine I've been prescribed has yet to take effect.

Since it was high blood pressure that got me into this mess in the first place, I'm more than a bit frantic over it all. My current health care team doesn't seem to share my sense of dire urgency about the matter. The thought of surging blood relentlessly pounding my delicate, undefiled six-year-old kidney makes me angry and quite sad.

I'm taking more than 40 pills a day, or four times as many as I did on Peritoneal Dialysis (PD). I have become a pharmaceutical stockboy, constantly checking supplies on hand, making frequent restocking visits to my local pharmacy and calling St. Louis for transplant-specific drugs to be delivered by mail. The medications control my day. Half the drugs must be taken with food, the transplant drugs specifically on an empty stomach. I feel like the guy on that antacid commercial: "Eat now, pill now? Pill now, eat later? Wait to eat, pill now? Wait two hours, now eat?"

Until next March, my blood must be drawn every Monday to ensure certain levels are decreasing or maintaining on schedule. For as long as I have a transplant, my blood will be drawn for lab tests on a regular basis.

Did I mention that I can't stand needles?

I don't mean to sound whiny, and if I do, forgive me. I was told before the surgery that depression is frequently a natural post-op emotion, and I may be going through a touch of that right now. I know that ultimately, the pain will end, the medication regimen will become routine, my blood pressure will plunge. But I can't shake the feeling that in many ways, I was better off on dialysis. At least, I felt better. At the very least, I wasn't in pain all the time.

When I was on PD, I didn't worry about much. The daily routine just kind of rolled along, and I pretty much knew exactly what to expect. Now I find I'm constantly worrying about something – organ rejection, my lowered immune system and possible infection (my wife has a cold! Oh, NO!), taking my pills on time, the possibility of a blood clot.

On a conscious level, I know this is a transition period and if I remain patient, much of this will pass. But if having kidney failure has taught me anything, it's that you have to live in the now, that a healthy tomorrow isn't promised to any of us.

Well, I'm in the now. And now sucks.