For far too many patients fighting the valiant fight against chronic kidney disease (CKD), tragically, the call never comes.
The cavalry call.
Almost every year, more than 4,500 Americans die waiting for the news that a matching donor kidney has been located and their lives can be renewed.
I received such a call Nov. 17. 2011, and it changed my life. Honestly, though, I never believed the cavalry would arrive in time to rescue me.
Despite my 2009 diagnosis of Stage IV renal failure, thanks to a two-year regimen on peritoneal dialysis (PD) -- my treatment of choice -- I was doing OK, relatively speaking. My body adapted well to Continuous Cycling Peritoneal Dialysis, or CCPD, filtering my blood internally through the aid of a machine, and I experienced no serious complications on what my family lovingly christened "the box."
I never suffered a complete loss of kidney function or stopped urinating, as some CKD patients do. (Although I sometimes wondered what it would be like to watch an entire football game without leaving the sofa, I was thankful for every restroom visit.)
What's more, in my frequent appearances on behalf of PD and organ donation (yes, I managed to turn lousy health into a revenue stream), I encountered many people in desperately greater need of a kidney transplant than I was. I almost felt guilty being on a waiting list when others clearly were in deeper distress.
That sensation was reinforced in June 2011, when we actually got "the call" from my transplant center, Barnes-Jewish Hospital in St. Louis. A potential matching organ had been identified from a deceased female donor, and how fast could we get there? My wife, Karen, transformed into Danica Patrick, the Gateway Arch her finish line, as we entered the hospital's admitting area in record time.
I was prepped for surgery the next day. By the following afternoon, friends and relatives packed my hospital room. Our pastor and his wife made the 2.5-hour drive to St. Louis. It was a jubilant, pre-op party... until the entire transplant surgical team walked into my room.
"I'm afraid I have bad news," the lead surgeon said softly. "Your kidney was diverted at the last minute to Johns Hopkins, to a patient in extremely critical condition. We did not foresee this happening. I'm sorry.
"You may get dressed now."
You could actually hear the excitement whoosh out of the room. I was disappointed, of course, but I felt worse for our friends who looked absolutely crestfallen. "Fool me once," I thought.
As the Bible says in Matthew 25:13, however, "Watch therefore, for you know neither the day nor the hour." So it was that, upon returning from a nine-day November road trip that included two presentations for Baxter and a weekend wedding, Karen and I heard the telephone ringing the moment we walked through our front door. Barnes-Jewish. A potential matching kidney, a deceased female donor, how fast could we get there?
Our luggage was still in the trunk! We turned around, got back into our car and drove to St. Louis -- this time, with all deliberate speed. And we told nobody.
The second time around, though, was... different. Because the story of my donor was in the local media, I probably learned more about her than I should have. She was a young girl who suffered a brain aneurysm, leaving all her organs in pristine condition. And this time the surgery would be performed by Dr. Jason Wellen, surgical director of kidney transplantation at Barnes-Jewish. The head man. "Our Golden Boy of kidneys," one nurse knighted him.
Wellen was warm and reassuring. Next to a kidney from a living relative, he said, this organ -- young, healthy, unsullied by smoking, hypertension or other ills -- was the next best thing. "It's a dream kidney," he beamed.
The next morning, Nov. 18, 2011 -- aka my second birthday -- Wellen and his team performed a successful three-hour surgery. Much of the transplant literature I'd read stated the procedure typically involves a small semicircular incision into which the kidney is slipped and arteries connected. Lies! Due to my size (6'3") and weight (over 280 pounds), Wellen explained later, they had to enter from the front: a six-inch cut down one side of my abdomen and a horizontal slice from hip to hip. They must have peeled open my midsection like a snack pack, requiring stitches and 24 staples to close it back.
Five days in the hospital followed, then almost a month in bed at home as healing progressed. The pain was bad. Prescription painkillers are good. The outcome was even better.
Another, minor operation was needed to remove my dialysis catheter, hopefully once and forever. The new little lady in my life deserves a big hand: My donor kidney is working magnificently -- so well, in fact, that I think she's trying to show up my two older organs with her youthful enthusiasm! I'm peeing like a teenager! And, through the miracle that is the human body, I'm told that within a year the kidney will grow to accommodate the needs of my larger frame.
There are some negatives: I will take upwards of 40 pills a day, the most I've ever swallowed, the rest of my life (anti-rejection, antiviral, everything but antipasto), and tracking what's on hand and when to refill requires the skill of an accountant; I'm battling steroid-induced diabetes, brought on by the surgery; I must have blood tests every week to ensure everything remains in balance. And I have written a thank-you letter to my donor's family -- my heart longs to hug them and blend our tears -- but they have not responded. They may never reply. That's their prerogative.
However, the "box" and the mountain of supplies that fed it are long gone. I've dropped 40 pounds, much of it fluid buildup from dialysis. I feel great.
In sharing the good news with one of my wonderful dialysis nurses, Marion Lukow, she presented a perspective I'd never considered.
"Do you not think people have been evaluating you ever since your kidney failure was diagnosed?" she asked. Medical professionals in at least three cities were watching to make sure I could tolerate dialysis, that I was committed enough to perform my own PD, that my body was a fit candidate for transplant, that I had the mental attitude to be faithful with post-transplant care, that my insurance plan would pay for procedures and prescription drugs.
I guess the cavalry was just over the hill all along.
Jim McFarlin is also a blogger at LiveNow.info, an educational site for patients about living with kidney disease.
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