Real Story: The Cavalry Call
For many of us on transplant lists, it's the call we've been waiting for.
The cavalry call.
The news that a matching donor kidney has been located and our 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. Every year, thousands of Americans die waiting for a donor kidney.
Despite my 2009 diagnosis of Stage IV renal failure, thanks to a two-year regimen of peritoneal dialysis (PD) – my treatment of choice – I was doing OK, relatively speaking. My body had adapted well to continuous cycling peritoneal dialysis, or CCPD, filtering my blood internally with the aid of a machine that my family lovingly christened "the box."
I experienced no serious complications, I never suffered a complete loss of kidney function, and I never lost the ability to urinate, 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 public appearances to tell audiences about PD and organ donation (yes, I managed to turn lousy health into a revenue stream), I encountered many people who were in desperately greater need of a kidney transplant than I was. I almost felt guilty being on a waiting list for a donor kidney when others were clearly in deeper distress.
That sensation was reinforced in June 2011, when we actually got "the call" from my transplant center, in St. Louis. A potential matching organ had been identified from a deceased female donor. How fast could we get there?
My wife 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 into my hospital room. Our pastor and his wife made the two-and-a-half 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.
But you never know when disappointment will turn into opportunity.
So it was that, four months later, upon returning from a nine-day road trip that had included two presentations a weekend wedding, Karen and I heard the telephone ringing the moment we walked through our front door.
Another 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. 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 the surgical director of kidney transplantation at the hospital. The head man. "Our Golden Boy of kidneys," one nurse knighted him.
The surgeon 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 – a.k.a. my second birthday – the surgeon and his team performed a successful three-hour surgery.
Much of the transplant literature I'd read stated the procedure typically involves making a small semicircular incision into which the kidney is slipped. Lies! Because of my size (6'3") and weight (over 280 lbs.), the surgeon later explained, 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 up.
Five days in the hospital followed, then almost a month in bed at home as healing progressed.
The pain was bad. The prescription painkillers were good. The outcome was even better.
A 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 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, for the rest of my life (anti-rejection, antiviral… everything but antipasto). 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 need 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, 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.