Kidney Transplant Patient Shares His Story
Dramatic Journey: In life, there really is such a thing as a second act, as one man’s experience of waiting for — and receiving — a kidney transplant proves
Nov. 18, 2011, is now my second birthday, the official first day of the rest of my life. However, if I still lived in Detroit, there is no doubt in my mind I would be dead today.
Not because of the city’s reputation as Danger Central, its violent crime percentages, nor the lunatic motorists playing NASCAR on the Lodge and I-275 every workday afternoon. No, I would have had my memorial service by now because, after being downsized out of my full-time job here in early 2009, I was left without a speck of health insurance and far too broke for the extravagance of COBRA.
And if there’s one thing I desperately needed in 2009, it was health insurance.
In the summer of 2008, I received a diagnosis of Stage IV kidney failure. This is not exactly a death sentence, but it’s as close as you want to get without languishing in a cell. (At Stage V, doctors say, relatives should begin gathering around your bedside.) Kidneys are the body’s unsung heroes — filtering impurities out of 200 quarts of blood a day, stimulating your bone marrow to produce red-blood cells, regulating blood pressure — and like most unsung heroes, you don’t fully appreciate them until they stop doing their job.
One byproduct of my kidney collapse was an agonizing, debilitating case of gout in both feet, necessitating the use of a walker outside the house and crawling around on my hands and knees at home rather than even consider the notion of placing weight on them. The editor of this publication prodded me, against my best judgment, to write a first-person account of my illness and subsequent battle with gout for a medically themed “Top Docs” edition of Hour Detroit (“Best Foot Forward,” October 2009).
What I needed was a kidney transplant. It would not be an end-all remedy — doctors also say that transplants are “a treatment, not a cure” — but it would be vastly superior to the strain of long-term dialysis therapy and would improve my quality of life. Living in Detroit, with no health coverage, the chance of my receiving a kidney — or going on dialysis, for that matter — was about as good as my taking a Verlander fastball deep at Comerica Park.
Now, however, maybe I’d better grab a bat. Today, I am the dumbfounded yet overjoyed owner of a new deceased-donor kidney, bestowed upon me at Barnes-Jewish Hospital in St. Louis in a three-hour operation Nov. 18 (hence the “second birthday”). The serpentine, almost inconceivable, path that brought me from here (Detroit) to here (transplant) is the kind of journey from which renewals of faith are kindled.
First, to my surprise, I got remarried. While scanning an online dating service — solely for the occasional dinner or movie companion, 25-mile radius only — I was contacted by a delightful, very attractive woman named Karen in Illinois. How she slipped through my parameters, I’ll never know. We called, texted, emailed, voicemailed, Skyped — even met in person — before exchanging vows March 27, 2009. The date is significant: Karen suggested moving it up in order to get me onto her health plan as soon as possible.
As it so happens, Karen holds a 10-year, high-ranking position at a major company. Her benefits are excellent. (At one point, she volunteered to move to Detroit so I could remain in my comfort zone; after wiping the tears of laughter from my eyes, I told her to hang onto that job with both hands.)
Still, I had misgivings: I was older than she, and sick. I didn’t want to be a burden to her before our honeymoon had ended.
I’ll never forget her words: “It doesn’t matter if we have 20 years or 20 weeks. All that matters is the quality of time we have together.”
Upon moving from Detroit, I was fortunate to find a nephrologist (a physician specializing in kidney disease), a jolly and proactive Egyptian named Abdel-Moneim Attia, who embarked on an aggressive course of care. He placed me on dialysis before it was necessary in order to bolster what little kidney function I had remaining and help alleviate the gout symptoms. I would remain on in-home, peritoneal dialysis — an eight-hour regimen, seven days a week — indefinitely.
Every time I saw Dr. Attia, he seemed genuinely surprised I had not yet received a transplant. “It will be coming very soon,” he would say, grinning, probably because Illinois has among the shortest organ-donation waiting times in America. I was unconvinced. For one thing, my blood type is O — the universal donor. I could give you every organ in my body, but my donor has to be an exact match. That lowered my odds.
Plus, my body adapted well to dialysis. And as I toured clinics and met patients in the renal community, I saw people in far greater need of a transplant than I. Relatively speaking, I was OK. That feeling was reinforced last June, when we actually received “the call” that a matching kidney was available. We dashed to St. Louis, I was prepped for surgery, family and friends filled my hospital room with joyous anticipation — then, at the last possible moment, a Stage-V patient at Johns Hopkins got the organ instead. I reckoned it would be that way forever.
Wrong. It turned out “forever” was two years. On Nov. 16, “the call” came again. Not only did Karen and I expect another false alarm, but we also had arrived home just minutes earlier after nine straight days on the road for business and personal matters. It was probably just as well: We were too exhausted to be nervous, and our luggage was still in the trunk. We turned around, got back in the car and headed for the Gateway Arch.
I learned who my donor was, although I wasn’t supposed to. Nurses couldn’t contain themselves: It was a young suburban female whose sudden death was covered in the media. Dr. Jason Wellen, surgical director of kidney transplantation for Barnes-Jewish (“Our Golden Boy of kidneys,” one nurse described him), who performed my operation, said a kidney from a living donor is always preferable, but given this person’s age, overall health, and lack of vices, Wellen deemed it “a dream kidney” for me.
Most transplant literature says the procedure involves a small C-shaped incision into which the new kidney is neatly tucked and attached to arteries. They lie. Because of my size and weight, they cut me like a prize hog being dressed for the butcher, 6 inches along the side of my abdomen and all the way across from hip to hip. They must have folded back my midsection like a flap, then closed it with the aid of 24 staples.
Upon my release from the hospital five days later, I was bedridden for two weeks and in constant pain for a month. Karen, my angel, was there every day, changing my oozing dressings and helping me stand and walk. It took nearly four months to regain full strength, and my new regimen consists of taking 40 medications a day. Anti-rejection drugs. Anti-fungal. Anti-viral. With all these “antis” in my life, you’d think I might have a more negative outlook.
But I know that every year, more than 4,500 Americans die while waiting for a matching kidney and the second chance I have received. I’ve seen the six-figure bill for the surgery, hospital stay, and medications: It might be valet money for Prince Fielder, but I could never pay it off in what’s left of my lifetime. Let us now offer a prayer of thanksgiving for health insurance.
The catheter and mountain of supplies from my dialysis are gone. I’ve dropped nearly 40 pounds, largely fluid buildup. I have a “dream kidney” implanted by the “Golden Boy of kidneys” the week before Thanksgiving. It’s functioning superbly and, within a year, through the wonder of the human body, it will grow to fit the requirements of my larger frame. Do I believe in providence? In miracles? Yes! Thanks be to God!