Welcome to ‘Everything’s Coming Up 65 Roses,’ a Column About My CF Journey

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by Nicole Kohr |

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I was busy in June 2019. I had been evaluated for a double-lung transplant earlier that March at the Hospital of the University of Pennsylvania (UPenn) after a drastic decline in my lung function due to cystic fibrosis (CF). Years of wear and tear from acting auditions and rehearsals had finally caught up to me.

I had started out in community theater and worked my way into television. The upkeep was tremendous and included rehearsals, classes, and keeping up with school, all in addition to my CF treatments.

My initial plan for college was to major in musical theater, but my FEV1 tests, a measure of lung function, said otherwise. Instead, I majored in public relations and pursued a career in nonprofit organizations shortly thereafter. I had just retired from that short-lived nonprofit career when my transplant evaluation began.

At the time, my 79-pound body was gasping for air, and my 6-liter oxygen sidekick, which I’d nicknamed “O2D2,” was no longer doing the job.

While I was being transported from Robert Wood Johnson University Hospital, in New Jersey, to UPenn, I opened my laptop and stared lovingly at an original musical comedy I’d written about a girl with cystic fibrosis. It had been collecting dust in my “random” folder since 2011.

I didn’t tell many people, other than an occasional teacher or theater director, that I had CF. I wanted to be known as an entertainer and a writer, not as a patient. So, I’d never bothered to show my musical to anyone besides my mom and my fiancé.

My secret disease had given me strength in the beginning, but by March 2019, it had become a hindrance. Over the years, friends didn’t understand why I turned down every party invitation, why I decided to major in something other than musical theater in college, or why my hair was falling out.

I worked up the courage to write to the Cystic Fibrosis Foundation. “Hi, my name is Nicole Sigur. Other than small donations and a cool ‘Great Strides’ T-shirt, you don’t know who I am — but I want you to.”

I told them about my performing arts background, my lung transplant evaluation, and how desperately I wanted my musical comedy to be seen in some capacity. Someone from the foundation told me to apply for an Impact Grant, a program that provides up to $10,000 to groups or individuals who benefit the CF community. I applied during my transplant evaluation.

On May 31, 2019, the day before I married my husband, Jared, I received an email. “Congratulations,” it began. I dropped O2D2’s handle, sending him falling to the ground.

Mom! Jared! I won the grant!

The Cystic Fibrosis Foundation had awarded me and my friends $10,000 to produce “Fall Risk,” my original musical comedy. The next day, I married Jared in the Disney-themed wedding of our dreams. Thanks, Mom!

A couple weeks later, on June 14, I received my double-lung transplant. I’ve been on a journey of transparency, producing, and advocacy ever since.

In the past, I’ve used the phrase “stop and smell the 65 roses,” but now I think it’s a flawed phrase. One reason for that is because most people have no idea the phrase “65 roses” is a nickname for CF, originating from the way children often mistakenly pronounce cystic fibrosis.

Secondly, I can’t smell. Thanks, CF-related sinus disease.

So, I’ll leave you with a slightly updated phrase. When life gets complicated, and you have to choose between your dream and your disease, just remember Mama Rose’s famous line from the Broadway musical “Gypsy”: “Everything’s coming up [65] roses.”

Nicole and her medication. (Photo by Nicole Kohr)

Check back weekly to read 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

AhnaB avatar

AhnaB

Bravo! Great post. Can’t wait to read more!

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Judy Moreland avatar

Judy Moreland

My very best wishes, Nicole. At one time in my life (before I was diagnosed at age 42), I wanted to write, direct, and star in a play.

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