‘Grow Old With You’: Lasting Relationships With Chronic Illness

Nicole Kohr avatar

by Nicole Kohr |

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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.

Cystic Fibrosis News Today | Nicole and Jared take a selfie in her dorm room. Nicole is sticking out her tongue and pointing her fingers, while Jared stands behind her with his arms out.

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.

relationships and CF | Cystic Fibrosis News Today | Nicole and Jared smile and hug one another in a hospital room full of monitors and IV bags.

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.

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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.

Cystic Fibrosis News Today | Nicole and Jared pose with their parents on a crowded street at Disney World.

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?”

relationships and CF | Cystic Fibrosis News Today | Nicole lies in a hospital bed while Jared sits beside her. They are both smiling and waving to the camera.

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.

Cystic Fibrosis News Today | A professional photograph captures Jared and Nicole on their wedding day. They are seated on a bench overlooking a river at sunset. Nicole has her legs flung over Jared's lap, and her veil billows out behind her.

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.

relationships and CF | Cystic Fibrosis News Today | Nicole lies in a hospital bed wearing a gown and covered with a blanket. She smiles and holds Jared's hand as he stands beside her.

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.

Cystic Fibrosis News Today | Nicole and Jared relax on a couch in their home with their two dogs.

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.

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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

Tim Blowfield avatar

Tim Blowfield

Thanks Nicole & Jared for sharing your story. We have grown old together, Reva and I - Reva approaching her 80th birthday with CF. Though we did not know she had Cf when we married 50 years ago we look back and see how it has affected our lives throughout. Not tolerating the altitude of 7500 feet when teaching at Egerton College in Kenya mid '70's, progressively malfunctioning bowel ending in an Iliostomy in 2004, progressive heart disease, hypertrophy of the Parathyroids, Adrenal failure, hyperkalaemia and Addisonian crises and more. We now recognize these as the result of the failed Chloride channel not just affecting mucous viscosity but the intracellular electrolytes. If Chloride is not being pumped out, it will be high within the cells and cations (K, MG, Na & Ca) will need be high to balance the anions. Occurs in every cell of the body but some organs are affected more than others.

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Mary E Shreck avatar

Mary E Shreck

Had tears in my eyes reading this, just as I did watching you dance with Jared at the wedding. I think most of your guests were tearing too. When Jared told us about you the first summer you were dating, Pap and I took him out for lunch and I asked him if he realized the severity of CF and he said he knew all he needed to know and also that he was in it for the long haul. This coming from my grandson who had driven me to the brink of insanity when he was growing up many many many times blew my mind. And he also told us just wait till we met you and he was so right. we fell in love with you the very first day and only has grown ever since. You two are definitely a match made in heaven! I also thank you for helping him grow into the amazing man he has become! love you both and your momma and doggies too!

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Paul & Debbie avatar

Paul & Debbie

Great Story, great Love. We salute you and Jared for embodying what Love is all about.
It was the great poet Rumi who already said:

"After my first love story, I started looking for you, not knowing how blind that was.
Lovers do not finally meet somewhere. They were in each other all along".

When I read your story, it is clear that this also applies to Jared and you.

When I met my dear Debbie, a stream of poems found its way through me, although I never made any before.
I wrote about one of those love poems in my Sunday Morning talks on the forum. You can find it here:
https://cysticfibrosisnewstoday.com/forums/forums/topic/sunday-morning-40-new/
Hope you and Jared enjoy.

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