Incurable Optimist

His words echoed in my mind—your kidneys are damaged, your kidneys are damaged—as the walls seemed to fold in. Is this room getting smaller? “You will need to have a biopsy to determine the extent and cause of the damage,” he explained. His eyes traversed from my newly created medical file to my stunned face.

“A biopsy?” Isn’t this a cancer word? I fidgeted in my chair and stared at him like he was speaking a foreign language. What happened to the standard doctor line? You have a simple case of (fill-in-the-blank) and I will prescribe (fill-in-the-blank) and voilà, better in three to four days. I’d take a cold, maybe the flu, a simple strep throat—one of those familiar ailments, please. But “biopsy” fell outside my medical comfort zone.

He said they’d found protein in my urine (officially known as proteinuria), which was causing the fluid retention. Protein has no place in urine. The tiny filters in healthy kidneys, the nephrons, do not allow protein to pass through, just as a coffee filter does not let coffee grounds pass into your coffee pot. My kidneys’ nephrons were like a lousy coffee filter with holes. Microscopic holes.

“The biopsy will help us diagnose what’s causing your kidneys to leak protein,” he explained.

Right away, I called home. My mom booked the first flight from Minneapolis to Seattle. I learned later she’d experienced an immediate sinking feeling after my initial call three days earlier. She’d heard something in my voice, and ripples creased her tight-knit maternal fabric—she felt sure I was experiencing something far from the flu.

My parents urged me to have the biopsy in Minneapolis, my hometown, because my dad knew and trusted a nephrologist, Dr. David Brown. My dad built custom homes, and years earlier, he had contracted a lovely place for Dr. Brown and his wife. But we’d never expected to seek Dr. Brown’s expertise in kidney care.

Lisa sat by my side when I called Nick to tell him the news. He asked, “What are they looking for with a biopsy?” His voice shook.

“The cause of damage. I’m going to Minneapolis to find out what’s going on, and then I’ll be back for Sarah’s party.” Lisa stood to face me, cocked her sweatpants-clad hip, and widened her ice-blue eyes. (Sarah was another Seattle resident and college friend.)

“Jen,” Lisa said, narrowing her gaze, “Sarah’s party is not your top concern. It’s in two weeks.” Nick said the same thing, but two weeks seemed like a long time to me.

“Well, I better be on the mend by then,” I suggested to Nick on the phone, to Lisa in the room, and to the Fix-It gods who may have been eavesdropping.

The next day, I picked up my mom at the airport, and her Julie Andrews-esque auburn hair, fair complexion, and lovely countenance ushered in a familiar wave of safety. We stopped at the grocery store, picked up a few items, and headed home.

“Nice,” Mom said when she took in our greige-stained wood floors and freshly painted walls. I showed off our new digs and set her suitcase in my room. After we unloaded the groceries into our spare cabinets and nearly empty refrigerator, she said, “You don’t have any food. What do you girls usually eat?”

Lisa and I shared a glance. “Stuff that doesn’t go in the oven,” I replied, and we laughed. The three of us sat together at our little white hand-me-down card table (this was the first time we actually set the table too), and the Mom-made hot dinner nourished us.

“What do you think is going on?” Mom asked as she lowered a napkin to her lap. “I don’t know … it doesn’t make sense. I eat healthy, I’m not into drugs—I even floss. Sometimes.”

“Flossing is overrated,” Lisa said. She smiled as she moved a chunk of her thick blond hair behind her ear. Mom laughed too, but when her smile faded, I saw a flash of concern flood her eyes. Later, she shared that when I greeted her at the airport, she knew her instincts were right. I was not well.

But for me, until this point, “not well” prompted Vitamin C or chicken soup for my soul. Quick fix. Move on. I thought that’s how it always worked. I had a lot to learn. The next day, Mom and I flew to Minneapolis. It was late November 1987, and the chain of events had just begun.

The next morning, I sprawled facedown on a stiff bed in a sterile hospital room. While I waited for the procedure to begin, the thin blanket that covered me was no match for the cold circulating air. My muscles twitched.

While my parents sat together in the nearby waiting room, a nurse by my side shot a magic elixir into my IV, and within seconds the tense, frosty edges melted away.

Dr. Brown stood next to me. “How do you feel?” he asked.

“Floaty.”

A squirt. Cold, slimy gel on my back. Dr. Brown explained he would place five tiny needles into one of my kidneys, guided by ultrasound.

“You will feel pressure and hear a loud click from the needle punch,” Dr. Brown said. His description was accurate. The pushing sensation was painless, but the sound startled me—as if a cap gun fired into my back.

“We’ve done one. Okay? Now we will do a couple more.”

Push. Pressure. Punch. Click. Wince. Breathe.

Push. Pressure. Punch. Click. Wince. Breathe.

Push. Pressure. Punch. Click. Wince. Breathe.

Push. Pressure. Punch. Click. Wince. Breathe.

I could not believe this was happening. I was fine less than two weeks ago.

“We’ve got some good samples,” Dr. Brown said. “Now we wait. I want you to stay on bed rest for 24 hours.”

An attendant wheeled me from the procedure room, deep in the bowels of the hospital, up to my room on the fourth floor. A nurse placed sandbags on my back to prevent bleeding. As instructed, I lounged as still as possible, but my insides fluttered. What the hell?

I had common goals for my life at the time. As twentysomethings do. I planned to launch into a public relations career after my performance as a star intern. In my professional dealings along the way, or in my robust Pacific Northwest social circle, perhaps, I would meet a rom-com-worthy guy. A soulmate? Sure. He would be so rock-solid, so handsome, so irreverent that I would regularly think, How can I be so lucky to have caught this guy? (Though Nick and I had been dating for a few years, he wasn’t the one I envisioned in this scenario.)

Mr. Perfect and I would live blissfully in a lovely and oh-so-happy home, where I’d whip together meals that would be today’s version of Instagram food porn. I’d pump out photogenic babies and display my perfect family on annual holiday cards. All the while, gracefully keeping it together as a how-does-she-do-it professional career woman. Nicely wrapped up and tied with a bow.

Well, maybe that is the amped-up and glossy version. But boiled to the essence, my peers and I expected to travel a path that led us into the epitome of adulthood—career, love, family. Up until this point, happy was my default setting; I’d never really considered an alternate state.

And now, plucked from the West Coast and Puget Sound, I shivered in the frigid winter of Minnesota, in a hospital with Mom, Dad, Dr. Brown, and yet-to-be-understood kidney damage. The end of my 22nd year spun off the path of grandiose expectations and careened right off a cliff.

My parents and I had to wait a week for the biopsy results. The window narrowed on Sarah’s party, but I still entertained the idea. I returned to my parents’ suburban home, where I had grown up with my older brother, Steve. My dad built this home for our family when I started kindergarten and Steve first grade. Like a two-story stationary time capsule, it was chock-full of childhood memories.

I retreated into my childhood room, looked at my swollen ankles, and felt the pressure from the extra fluid invading my cells.

How sick am I?

The following Monday, Mom, Dad, and I sat in the lobby of Dr. Brown’s clinic. It appeared far more polished than the doctor’s office in Seattle, and I stared trancelike at the bronze-toned wallpaper.

A nurse escorted us back to a clinic room. The hard edges of the plastic chair mirrored the discomfort of my mind and body. Dr. Brown sported a bow tie and tweed suit, greeted us curtly, and sat down. He adjusted round wire-rim glasses and ruffled through the pages in my chart.

My dad leaned forward on the edge of his chair like a take-charge CEO ready to tackle an issue. I saw a focused anticipation in his brown eyes. Coarse dark hair topped his round face, which made him look younger than his 52 years. My mom’s eyes were deep wells of blue, reflecting worry. She rested her hand on mine. Dr. Brown set the papers on the desk and delivered six words: “You have a progressive kidney disease.”

For a moment, I considered myself a character in a cheesy soap opera who gets bad news—the words reverberated inside my mind while my face registered a melodramatic pause.

Progressive disease.

Progressive disease.

Progressive disease.

What?

Dr. Brown explained a condition called nephrotic syndrome was causing inflammation in the tiny filters of my kidneys. The three of us sat with dazed expressions as he continued to educate us about my problem. I was grateful to have my parents in the room because I had trouble focusing. As we sat together vested in my outcome, I felt like a middle school student receiving negative feedback at a teacher conference.

“The biopsy indicates focal segmental glomerulosclerosis.”

“That’s a mouthful,” I said, stunned.

“Also known as focal sclerosis or FSGS,” Dr. Brown explained.

“How does this happen?” Dad asked.

“Larry, I can’t answer that. Jennifer has an autoimmune dysfunction, and we don’t know the cause.”

“Do you know the cure?” An excellent question, Dad. But the word itself seemed surreal. Cure. This was uncharted territory—sitting in a small clinic room conversing about a progressive disease that had afflicted me out of the blue. 

“What we need to do now is monitor the kidneys and try to stop the damage with a medication called prednisone.”

“Will prednisone fix it?” I asked. I wanted a simple answer and did not realize how complicated the question was.

Dr. Brown told us there is a child-onset nephrotic syndrome that responds well to treatment. “It’s unclear, Jennifer, at 22, if you are experiencing a late child-onset case, or if your case will be more advanced. I would like to consult with some colleagues and see you back here in a few days.”

The child-onset route seemed the better of the two syndromes. So I pinned my hopes on having the kid version. That scenario could make this condition go poof and evaporate with prednisone. I planted this idea firmly in my mind.

Child onset. Please. Child onset.

I had trouble sleeping that evening, focusing on the goal of being an adult with a child’s illness. I remembered when my mom used to tuck me in and wish me sweet dreams, way back when pastel wallpaper flowers surrounded me. With Steve one room away, our dog Gus asleep downstairs, and my parents nearby at the end of the hall, the world had seemed nothing but safe.

And now, unsettled, I tossed and turned and pulled up the window shade. Cold air wafted from the chilled panes of glass and hit my face. I looked at the November snow-covered landscape, a frozen version of Seattle rain, and hoped prednisone would bring me back to the place where I belonged.

I saw two outcomes to this situation. Heal or fail. I wanted to heal.

Jennifer Cramer-Miller ’87 has endured four kidney transplants; she is delighted to have just celebrated the 12th anniversary of her last transplant and describes her health now as “happy, hopeful, and holding.” She is a writer and speaker, chairs the board of the Minnesota National Kidney Foundation, and is an ambassador for Donate Life. Her book, Incurable Optimist: Living with Illness and Chronic Hope, was published in August by She Writes Press and is available at the Logger Store (either on campus or at bookstore.pugetsound.edu) and other locations. Cramer-Miller lives outside Minneapolis with her husband and dog.