Once upon a time… That’s how fairy tales usually start. This story is not exactly a fairy tale but a tale, nonetheless, about taking risks, fighting the odds and all those other cliché sayings that fit so nicely into a neat little package.
So, as I was saying…once upon a time…my doctor presented me with the news that I had only one kidney – this after performing some basic lab tests after I complained about how tired I had recently been. Upon further testing to find out why I had a single kidney, they determined it occurred during the embryonic stage and that I was only born with one – as opposed to my kidney being impaired by some mysterious condition.
“Relax,” he said, once he saw my head spin a la Linda Blair in the Exorcist. “Many people only have one. You just have to take good care of the one you have. Don’t go play any powder puff football.” No problem, I thought. I’m no Sporty Spice.
Silence is Not Always Golden
Which all brings me to the silent disease known as CKD (Chronic Kidney Disease). I was lucky that he steered me to a nephrologist (kidney doctor). With his help after a diagnosis of glomerulonephritis (inflammation of the filtering units, called glomeruli), I remained healthy for years through a steady maintenance program – sticking to a kidney-safe diet and browsing kidney forums on the internet.
For years I did beat the odds, and I gloated when reminding my nephrologist of each new item on my bucket list as he scoured my lab results and got that fatherly look in his eyes. “Talk to the hand,” I’d say. “I have plans.” He smiled in quiet resignation and said, “Okay. I’m just trying to prepare you.”
What it did do is produce a feeling of urgency to live my life to the fullest while I still could. The first thing on my list was taking my daughter to Rome. We jumped on the plane, and I dug my heels in – literally speaking – along the cobblestone corridors of Rome. I scoffed at the fickle finger of fate. Mission accomplished. So take that, Doc.
With each follow-up visit to the doctor, I reminded him of my next harebrained scheme – ignoring the little ticking time bomb inside of me . He’d smile and say, “You have a great attitude, and that’s half the battle.” Got that right, I’d think to myself. Damn the torpedoes. I don’t care what those lab reports say. I feel great, and there’s nothing you can do to convince me I’m sick. Yup, still in denial.
Slowly, my labs began to show that my lonely little kidney was tired of doing all the work. And once your numbers reach a certain danger-warning level, you are automatically added to the Kidney Registry List. Since you can be on a waiting list for years, their intention is “the sooner the better.”
I remember getting my first call once I was listed on the registry. A soft-spoken specialist called at 4:00 a.m. indicating they had found a match. The call went something like this:
Me (rousted from a deep REM sleep): “Uh, wait…no. Wait, what?”
Her: “Do you want me to give you a minute while you think about it?”
Me: “A minute!? Really!?”
I finally told her that I was going to pass…I felt fine…not on dialysis yet…yadda, yadda, yadda…and to give it to someone else…someone struggling on dialysis…someone in much more need than I was. Oh, yeah, and I was still in denial.
This scenario played out four more times in the next two years. I felt like Lady Luck was on my side because I was still not yet on dialysis, I felt fine and, besides, someone else was benefitting from my decision to turn down yet another kidney. And, yes, I was still in denial.
After a long run, though, my tired kidney recently took a sudden turn for the worse. “Do NOT turn down the next kidney offer,” said my nephrologist. His words rattled me to the core and, in that very moment, I knew what I had to do…except I had something else to scratch off my bucket list. My son was getting married in one month. My brain did the math: It takes about six weeks to recuperate from a kidney transplant. What are the chances I’d get a call anytime soon and, if I did, could I recuperate in time to walk him down the aisle?
Miraculously, my cell phone rang days later with an offer of a kidney. “Yes, I’ll be there!” I screamed into the phone. Although saddened to hear a fairly young man had passed away and I was to be the recipient of his kidney, I also realized that not only was this an omen, but perhaps this family’s burden would be lifted having known he did not die in vain, and someone would be the recipient of a very special gift from him.
I’ve had my new kidney for four months as I write this. Having made such a pre-emptive decision, I felt in control and confident that I had made the right choice. Yes, I was going to be in the hands of strangers and unseen risks, but it was the path I chose to take. I also had a good incentive to recuperate quickly and, exactly one month later to the day, I walked arm-in-arm with my son and handed him over to his beautiful bride. I beamed. He cried.
The New Beginning
It’s still early and, yes, I have to deal with anti-rejection drug side effects and costly medical costs. But I alone decided this fate of mine. To this day, I never look back and think about the “what ifs.”
The nephrology world often uses the terminology “end stage,” referring to the last stage in the progression of kidney disease. I learned that we can turn the tides, and we all have our own “end stage” options. We just have to know when to recognize them and when to use them to our benefit in order to live the very best life we possibly can.
Update: An implantable bioartificial kidney is slated for testing in patients between 2016 and 2018. The Kidney Project brings together scientists, engineers, and clinicians to create a surgically implantable bioartificial kidney to enable end stage renal disease patients to live longer, healthier lives free from dialysis. Funding to-date has been primarily through U.S. government research grants and private support. Learn more at http://pharmacy.ucsf.edu/kidney-project/
Printed in the Feb/March issue of I AM Modern magazine at