‘One Day More’ (Until Discharge)

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by Nicole Kohr |

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Transitioning home from a lengthy hospitalization was always bittersweet. While I longed for the comforts of home, being an inpatient for weeks on end turned into a strange “Beauty and the Beast” situation. I was a volunteer hostage, and I became dependent on my host.

Dependence

Like a zoo animal who was cared for in captivity, I’d forget what my life was like before I was hospitalized.

What did I eat before I got here? It couldn’t have been bland chicken.

What sort of pharmaceutical genius organizes her own medication? It’s much easier when nurses just hand you the pills.

How long is the walk to the car? The farthest I’ve walked in the past few weeks is around the nurse’s desk, and even that felt exhausting.

The “me” that existed before was a superhero, and the “me” that prepped for discharge was nervous.

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Independence

On the flip side, I couldn’t wait to go home. Nurses would ask, “What’s the first thing you’re going to do?” I’d stare out the window (or pretend to, if there wasn’t one) and smile.

  • I would see my family.
  • I wouldn’t be frightened awake at 3 a.m. by an impatient tech who needed my vitals.
  • My bed would be soft and wouldn’t make loud screeching noises.
  • Mom and my now-husband, Jared, wouldn’t have to drive in the rain and pay $20 a pop just to see my face.
  • My veins could heal from constant bloodwork.
  • The shower would soothe my anxiety instead of aggravating it.
  • My puppies would give me hugs and kisses.
  • I’d have access to Hulu and Netflix.
  • I’d be free from a bundle of cords that bound me to an IV pole.
  • I could leave my bedroom without permission.
  • I’d wear real pants and a bra.

The list goes on.

The last 24 hours

Telling a patient they’ll be discharged in the morning is like telling a child they’re going to Disneyland. The patient will not sleep, and they’ll wake up at 4 a.m. with a suitcase packed. The family transporting them home is no different.

“Are we there yet?” Mom and I would ask every healthcare professional as they conversed with us throughout the day.

“Who cares what my weight is on the last day,” I’d think to myself. “I’m going to McDonald’s!”

The promised 9 a.m. discharge time would be more like 6 p.m. Maybe.

Mom and I would spend that time ripping all of my magazine posters and family pictures off the wall. We’d check for every lone charger, blanket, and sock. Nine “Law and Order” episodes later, we’d get a time frame as to when I could escape, at which point Mom would nervously rattle off her to-do list.

It’s a strange feeling being reintroduced to your own dogs, your own bed, your own life. Dorothy Gale from “The Wizard of Oz” had it right when she said, “There’s no place like home.”

The song “One Day More” from the musical “Les Miserables” is my favorite group number. I sing it all the time. Imagine a group of people with conflicting emotions who have no idea what tomorrow will bring. That was me on the last day of my hospital stay.

“You can do it,” my mom would say encouragingly as we started toward the parked car in the distance.

“McDonald’s, here I come!”

Hospitalization / Cystic Fibrosis News Today / Nicole wears pajama pants and a face mask while standing outside the hospital with her IV pole.

Nicole Kohr on discharge day at Robert Wood Johnson University Hospital in 2012. (Courtesy of Nicole Kohr)

Check back every Thursday to read more of my story.

***

Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to cystic fibrosis.

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