The very first episode of Rod Serling’s Twilight Zone features a man who finds himself completely alone in a city. While he sees many signs of life – lit cigars, brewing coffee, baking pies, and running water – no other people appear. Amid a crazed monologue, the man searches, screams, bumps into eerie mannequins, answers phantom phone calls, and finally smashes himself into a wall-sized mirror. His realization? He is trapped in a self-constructed dream from which he can not wake.
The man ends up finding a help button, which he presses repeatedly, while saying over and over, “I WANT TO WAKE UP NOW. I WANT TO WAKE UP NOW!”
In my life right now, there’s all manner of life. I’m breathing, talking, walking, eating, and even working a little. There are more loving and caring people than I know what to do with. But things aren’t so right, and it feels like a dream from which I can not wake. Feels like trouble, but I gotta look around.
Almost four years ago, I had a Twilight Zone experience. Having received a kidney from a living donor – a true warrior, a friend – was quite literally the most incredible thing that ever happened to me. A gift of life. I flourished with my adopted organ, and life had never been better.
But, as any transplant patient will tell you, things can be unpredictable. Life can be tenuous. Since late June (2015), I haven’t been feeling right at all. After 45 days in and out of the hospital – mostly with horrible abdominal issues, now the kidney is not looking good. My normal baseline creatinine, which had been 2.0, has jumped to the 5.5 – 6.3 range. Translation? Factoring BUN and other lab numbers, my kidney’s function is between 10-15%; on the razor’s edge of needing to go back on dialysis.
I want to wake up now.
It’s October 6th, 2015. I was hospitalized four days ago, and spent the weekend here, including the dourest of 46th birthdays. Over the weekend, I’ve had some great encouragement from family and friends. I get hospital visitors and text messages, phone calls and Tweets. Yet, I haven’t been able to deal well with how my body has dropped the ball. Didn’t juice enough kale? Didn’t get my APLA labs checked enough? Didn’t do enough yoga? Couldn’t manage the gift of life for even four years. Failure. Thanks, Laura and Nadia, but I failed you. I’m pressing the button to wake up now!
Being hankered with two auto-immune diseases has been a bugaboo in both diagnosis and treatment. I divide experts. I create heated debates. Oh goody, I’m a mystery. LUPUS and ANTIPHOSPHOLIPID ANTIBODY SYNDROME. What the hell? People get diseases. I get SYNDROMES.
During these good years, I have tried to dwell in the enjoyment of the day. The gratitude for small things, like your kids’ smiles. A dog’s quirks. The last bite of coffee ice cream. I stayed there for a while, generally able to stay out of the mental hopscotch of, “What if this kidney fails? When will it fail? How will I feel? Will I live to 60?”
But that gets hard in the hospital, when things become more and more real. In one dark hour of a sleepless Prednisone night recently, a terrifying thought struck me:
“What if they won’t transplant me again because of my complications?”
Just like in John Faherty’s incredible pancreas story, I do some simple, morbid survival math. But my formula is this:
This did come up (the Unwillingness to Transplant, not the whole formula :)) recently during a consult, and docs confirmed that, indeed, the next transplantation process would be “much more complicated”. My eyes widened at the thought of D.E.A.D. but I am also aware of further complicated patients who have received successful transplants. That’s simply not a worry I can pick up and run with right now. These same docs assured me that I would easily pass screening, but that the transplantation plan would be significantly more difficult.
Their tone didn’t exactly fill me to the gills with confidence.
Not sure what my labs were this morning, but I’m ready for a 3rd dose of Soliris, the WONDER DRUG which is supposed to help repair the microangiopathy* in the kidney (*devilish holes shooting through my kidney, killing it).
Right now, we don’t know if Soliris, combined with Mack-Daddy’s worth of steroid bombs, are going to work. I was on the brink of starting dialysis yesterday, but docs think we should wait. I’m Prednisone McFat Face walking around right now, so don’t flash that iPhone camera around me! But I’m breathing. I’m alive. Looking for the WAKE UP NOW BUTTON.
I know I harbor all the blame, and it does no good. And I find POSITIVES EVERYWHERE. But it’s good to vent while I update. I’m sad, yet still eternally grateful. Laura and Nadia, my friends, my heroes. Thanks for your love. I know I sound negative but I’m fighting. Thanks also to all of you for suffering the litany of everything. . . .