I first encountered my now-husband, Chris, in October 2017 on an online-dating app. We followed each other on social media, and I remember seeing posts from a well-rounded man who spent lots of time with his family, made amazing art, and sang and played the guitar. Despite my somewhat legendary social media sleuthing skills, I missed something big -- Chris had cystic fibrosis and was listed for a double-lung transplant.
We started dating and I started planning. I scoped out parking situations ahead of time to avoid unexpected long walks; I called my friends and family before we came over to make sure no one was sick; I read everything I could about cystic fibrosis and the lung transplant process so I knew what to expect.
In March 2018 -- five months and one hospitalization after we met -- Chris started getting “dry run” calls for lungs. I thought I was prepared for my role as the girlfriend of a transplant recipient; I thought I really didn't have to do much. He already had a care plan in place with his dad for after transplant; he has five siblings (including two with CF) who provided a lifetime of support; and he had all of the insurance issues worked out. When he finally went into surgery on June 12, 2018, I found out that, emotionally, I was not prepared at all.
It had been easy to forget just how sick he actually was. Through all of my careful “end-stage-lung-disease-friendly” planning, I had crafted a reality where I didn't have to constantly think about his low lung function and health. We didn't hike, travel, go on bike rides, or even leave the house for more than a few hours so he could keep his nebulizer schedule.
It was our normal and it felt normal. In reality, I was just seeing what I wanted to see.
While Chris was a few hundred yards away in the operating room at University of California, San Diego, I went to the parking lot to take a video call for the CF Foundation's 2018 MiniCon: Transplant planning committee. The members of that committee, including fellow “CF spouses,” were some of the first people I told about Chris's transplant. Some couples had been together for decades, and some, like Chris and me, had been together for only a short time. I had known Chris for only seven months, so my experience with CF was still new and confusing. In the hours since his surgery began, I felt like I had already burned out my family and friends with my extremely specific worries, so just being in the (virtual) presence of so many people I didn't have to rehash the nuances of CF and transplant to was liberating. I needed this very unique support system.
Like many of the spouses and loved ones I have met since then, I still deal with crippling anxiety over health issues; I still experience disturbing flashbacks to beeping machines and piles of tubes; and my blood pressure soars every time I hear Chris cough.
Of course, I wish Chris wasn't born with cystic fibrosis, but I embrace the experiences because of CF that give us a common, powerful, goal to always work toward. We became a new family when we walked out of the hospital together, 15 days after transplant.
Since then, my journey as a transplant spouse has pushed me into, and through, nearly every emotion that human beings are capable of.
Soon after Chris's transplant, we got engaged and moved to Orange County. On Oct. 3, 2020, we were married in front of our immediate families -- complete with masks and lots of hand sanitizer. It felt like both a beginning and an end -- we had been through so much to get to that point but we also knew it was just the start of a lot more.
Our day-to-day is much like many other couples: never knowing what we are going to have for dinner, movie nights on the couch, and road trips to visit family. We are lucky that most of our days are like that. But, right now, the home health nurse is here administering a routine three-hour infusion and there is a giant box of medication on the counter waiting to be put away. And Chris spent hours on the phone this week trying to straighten out his insurance that lapsed after we got married.
Because of CF and transplant, some things are very different in our house and in our marriage. Most of these differences are fairly imperceptible and we don't always choose to disclose. However, CF and transplant are major forces in our lives.
Usually, they propel me forward in positive ways but sometimes they make me feel helpless, afraid, and at the mercy of chance. I struggle with feelings of guilt that I'm the healthy one and I have not had to personally deal with the physical and emotional struggles of a CF and transplant patient. I had to, and have to, deliberately accept that my situation is valid and worthy of support, too. That's why the virtual connections I've made through the internet continue to be so important to me; I cannot do this alone.
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