Originally posted by Cystic Fibrosis News Today.
I didn’t tell my boyfriend — now husband — that I had cystic fibrosis when we started dating.
We were in college, and I wanted to be known as the girlfriend with blue hair, not the girlfriend who frequently uses nebulizers. On top of that, I didn’t want to burden him with my baggage, especially so early in our relationship.
I did extra nebulizer treatments to reduce the amount of coughing. I brushed my teeth several times a day to alleviate my Mucomyst breath. I even hid my medications in my closet.
Nicole and Jared at Kean University in January 2013. (Courtesy of Nicole Kohr)
However, my secret didn’t last long. Jared suspected that I had a disability after seeing my port-a-cath. The bigger hint dropped a month or so later when I left my email open. I was in touch with the disability center every day, so a list of emails titled “your IV medication” was a big clue.
I disclosed to Jared that evening. He asked a lot of questions. I swallowed the cry that I was holding deep in my throat, assuming that was the end of our relationship. Instead, he said, “OK,” and cracked a joke. Our date continued as if nothing had changed. It was exactly what I needed — a feeling of normalcy.
Nicole and Jared during one of Nicole’s tuneups at Robert Wood Johnson University Hospital in 2014. (Courtesy of Nicole Kohr)
As our relationship continued, I became more transparent. We would visit each other’s family on the weekends, and he’d cover for me if I was struggling with transparency. I remember his mom being taken aback when my mom picked Jared up to “stay with me at the hospital.”
When I was diagnosed with Mycobacterium abscessus, one of the deadliest CF infections, my junior year, my mom and I had a long talk about my health, school, and next steps. Despite my care team’s suggestion to take a break from college, I did not want my college life to come to an end. That included Jared. I self-administered IV treatments for seven months while continuing my full class load. This put a huge strain on my relationship, at least in my brain.
I could only shower once per week because of my visiting nurse’s weekly schedule. I became allergic to the IVs, so I had a full body rash for most of the treatment. I didn’t have the energy to tend to my looks, so I was apologetic. I struggled to be the perky girlfriend Jared had come to know.
At one point, Jared broke into my dorm room because he heard me crying. I’d been avoiding him because I was indecent. “He doesn’t deserve this,” I’d think to myself. He tended to my care the whole night. Turned out, Jared was the reason I made it through all the indecent parts.
When we graduated from college, Jared moved in with my mother and me. He got a job in the IT department at my local hospital. Then, Jared proposed at Walt Disney World in September 2018. I was taken by surprise, and it was a nice break from the hospital environment I’d been trapped in for over a year.
From left, Jared’s parents, Julie and Steve, Jared, Nicole, and Nicole’s mom, Patty, at Disney World in September 2018. (Courtesy of Nicole Kohr)
By March 2019, my care team decided it was time for a lung transplant. Jared and my mom held my hands through the three-day evaluation. Jared also accepted a job offer for a remote IT position. On one call, someone would ask, “What color napkins do you want at your wedding?” The next caller would ask, “Do you have a living will?” The last would ask, “Will your fiancé be accompanying you on your new job training across the country?”
Nicole and Jared at the Hospital of the University of Pennsylvania in March 2019. (Courtesy of Nicole Kohr)
Our wedding was scheduled for June 1, 2019, but my transplant team advised that we cancel. “You could receive the call for lungs at any time,” they said. Jared, Mom, and I had yet another long talk about our options. Again, despite some hesitation, I wanted to move forward with our plans.
Nicole and Jared at the Lambertville Station Inn in New Jersey on June 1, 2019. (Courtesy of Nicole Kohr)
Jared and I were married on June 1, 2019. We danced to “Grow Old With You” from “The Wedding Singer,” an appropriate song considering our wedding night included painkillers, high-flow oxygen therapy, and sleep.
Fourteen days later, I received the call for lungs. Jared kissed my head the moment I woke from surgery, then hopped on a plane to California for his job training. It was like a fairy tale — an unorthodox and traumatic fairy tale.
Jared and Nicole just hours before her transplant surgery at the Hospital of the University of Pennsylvania in 2019. (Courtesy of Nicole Kohr)
While most young couples spend their time navigating the superficial aspects of their relationship, Jared and I spent ours overcoming hurdles that we shouldn’t have faced until our 10th wedding anniversary.
Jared, Nicole, and their two dogs, Roxy and Lucy, at their home in New Bern, North Carolina, in 2021. (Courtesy of Nicole Kohr)
Now, when I listen to “Grow Old With You,” I’m reminded how thankful I am to have Jared by my side. It takes a very special person to love and care for a chronically ill spouse. Now that we’ve mastered growing old together, I’m looking forward to navigating the simpler aspects of a relationship. I wonder if he’d like purple hair on me.