The Sun’ll Come Out — In 2 Weeks?

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by Nicole Kohr |

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Most cystic fibrosis (CF) patients are admitted to the hospital for “tuneups,” which are hospital stays meant for IV antibiotics and additional treatments.

CF patients are known for having frequent respiratory infections, and tuneups are done either proactively or reactively, based on a patient’s needs. Some patients have more tuneups than others, but all have one thing in common: They last about two weeks, and a course of antibiotics is usually prescribed for the duration.

While some tuneups today can be conducted at home, most of mine were done in the hospital when I was between the ages of 5 and 26. Tobramycin was a new medication when I was diagnosed at age 5, so I always had to be observed when I took it. I was immunosuppressed, and therefore wasn’t allowed to leave my room. I was accompanied only by my mom and a sign on the door stating, “Immune Suppressed Patient: Gown, Mask, and Glove.”

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What goes on during a tuneup?

Think of a tuneup as a typical day for a CF patient, except we’re on steroids. Well, more steroids than normal. Add four chest percussion therapies a day, and nebulizer treatments to loosen the mucus in the lungs. Vitals are checked around the clock, and IV antibiotics are administered.

Fluids are delivered at 5 a.m., and bloodwork is conducted at 8 a.m., along with assessments by the doctor and a care team. Also at 8 a.m., pills are doled out, and hospital food is served, followed by lots of TV-viewing.

Half the time, patients find themselves hiding in the bathroom to steal a moment of privacy. But minutes later, another medical professional will impatiently knock on the bathroom door.

The other half of the time, patients are isolated, bored, and hypnotized by the sounds of the IV and the call bell ringing, and ringing, and ringing.

Who is in the room?

The patient, hopefully a caregiver, and lots of medical professionals are in the hospital room at any given moment. My mother was a master of distraction. She and my grandmother would bring baskets of video cassettes for me to watch, mostly Shirley Temple movies, my favorite.

Mom was a “Pinterest mom” before Pinterest existed, and she’d invent cute activities that made even the child life specialists drool. Entertaining an anxious child 24/7 for weeks at a time was no easy feat. Mom was selfless, never went home, and spent every night sleeping on a chair that barely reclined. As I aged, Mom would go home to snag a few hours of sleep, but her phone was always on, anticipating that possible 1 a.m. phone call.

Where does a tuneup happen?

Before a local children’s hospital was built, I often was housed in a room without a window and with a broken clock, lit by a flickering pocket light, which added to seasonal depression. Mom decorated the room to make it colorful.

Respiratory therapists would burst into my room four times a day. “Beautiful sunny day out!” they’d exclaim in an attempt to prompt conversation. My mom would remind them that I hadn’t left the room for 12 days and had only seen pictures she had taken on the way in.

“The sun will come out tomorrow!” I’d shriek, because I’d just watched “Annie” for a third time.

When I was older, I transitioned to home IV antibiotics. This was both a blessing and a curse. Compressed balls of IV antibiotics were my jam, because they allowed patients to self-administer IVs without the need for an IV pole. The ball compresses over time due to gravity, so one can simply shove it into a backpack. This makes IV administration convenient and portable.

Home IVs also meant I could avoid the dreaded two-week hospital stay. No early morning vitals and bloodwork. No hospital chicken. Just rest and my favorite soup.

The downside is that in the comfort of my own home, I’m less likely to maintain a perfect hospital schedule. So, when my lungs were in desperate need of care, my doctors always encouraged in-hospital tuneups.

I’ll admit, sometimes I felt like a cool kid during tuneups. I knew everyone, I received a lot of attention, and my friends would visit for fun hospital play dates. But what the rest of the world didn’t see were the tears streaming from my eyes when I’d scroll through social media photos of parties I couldn’t attend. People didn’t see my mom’s sleep-deprived eyes as she tried to make the best of every situation.

I think back on those times and remind myself how lucky I am now. I haven’t had a tuneup in two years. I think that means the sun will come out — today!

Hospitalization tuneup | Cystic Fibrosis News Today | An old scrapbook entry shows a photo of a young Nicole with her mom, Patty, at a hospital in 2002. A note to the side, next to sheep stickers, states, "She is wishing for a nap."

Nicole and her mom, Patty, at Robert Wood Johnson University Hospital in 2002. (Photo by Patty Sigur)

Hospitalization tuneup | Cystic Fibrosis News Today | A second scrapbook photo set against a pink background with heart stickers shows a young Nicole with her mom, Patty, in the hospital

(Photo by Patty Sigur)

Check back every Thursday to hear more of my story!

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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.

Comments

Gisele F Lapointe avatar

Gisele F Lapointe

I've experience this life with my own daughter who passed away at age 43 after a lobe transplant. Take care of yourself!

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