As a kid with cystic fibrosis, I never skipped a beat. I never saw myself being held back by CF, and for the most part, I felt completely normal. It wasn’t until my friends were all trying out for middle school softball that I realized I wasn’t quite the same as them. I ended up not trying out for the team because I couldn’t keep up with the exercise requirements during practice. In high school, I remember that’s when “the cough” set in. And college is where CF really sank its teeth in.
Whether it was due to normal progression of the disease, my stubborn noncompliance, or being on my own for the first time — I’m not sure. I had my first CF hospitalization and PICC line my freshman year. Every year after, I seemed to decline a little more and more. The day I graduated with my bachelor’s degree from Clemson University, I walked across the stage with a PICC line, having been released from the hospital for a flare up just two days before.
Still though, I was determined to push on and live the most normal life I could. I began working full-time after graduating and refused to let CF hold me back. I found a job where I proved myself to be valuable beyond my health issues despite the two exacerbations that led me to short-term hospitalizations. I accepted a job with my current employer in 2019, the year my life was changed forever.
I remember distinctly it was September 27, and I was at work feeling completely awful from what I thought was just a regular head cold. Determined as usual, I decided to just stick it out and thanked God the office was closing early that day. The next day, I felt even worse. I was so short of breath, and nothing was helping. The next day was no better. I know, normally, this is a red flag and would send most people with CF to the ER, but honestly, I don’t think anyone realized how serious it was at the time.
I had been pushing so hard for so long, I made it look like I was always OK somehow.
That evening, I knew something wasn’t right. I called my mother and told her we needed to go to my CF specialist in Augusta, Georgia the next day, either via the ER or a “pre-admission” like they had done in the past. We waited at the hospital in the pulmonary function suite for what seemed like forever until they finally had a room available for me.
Despite being on 5 liters of oxygen, I was still having trouble breathing. I pressed the call light, and several nurses rushed in to find that my O2 was around 70%. I was shocked. I don’t remember much about what happened after that. I ended up being sedated and placed on a ventilator. I had officially hit my limit of “pressing on.”
I woke up some 25 days later in a new hospital, in a new state, and had undergone a double-lung transplant. Before this, I hadn’t even been evaluated for a transplant. I had been transferred to another hospital, was officially listed, and waited 10 days until they found lungs for me. I was so disoriented when they told me, I couldn’t quite process it. I’m not sure how I would have handled this news had I been completely lucid at the time. I’m not sure how anyone could, to be honest.
I had my double-lung transplant on October 23, 2019 and would spend the next two months living at Duke University Hospital. It was, without a doubt, the hardest thing I had ever been through. My parents and sister uprooted their whole lives and moved to Durham, North Carolina to be near me and the hospital. My boyfriend, who I was living with at the time, was commuting four hours back and forth to see me while still working so we could afford our bills and mortgage. I spent Halloween, Thanksgiving, and my 28th birthday in this hospital. On December 19th, I was finally discharged to the townhome my parents were renting. I remember crying tears of joy as they wheeled me across the hospital foyer to the car waiting for me outside. I can’t quite describe the feeling and get teary-eyed to this day thinking about that moment. We continued to live in Durham for the next two months, as I had to complete pulmonary rehab and stay close to the hospital for my follow-up appointments.
In March 2020, shortly after I was finally able to move back home, COVID-19 set in. Slowly but surely, I adjusted to this new normal. I went on to get married in 2022 and after being together for almost 11 years, my husband and I finally decided to get serious about starting a family. He wanted kids so badly but knew I wasn’t ready before. When I was still in the hospital, one of the caseworkers told me I shouldn’t ever get pregnant due to my transplant. It was something I hadn’t even considered at the time due to my health issues, but it was still like a stab in the heart to hear at 28 years old. Stubborn as I am, I was determined to prove her wrong and figure out how to do it anyway.
Our first step was to see if my husband was a carrier for CF. When we found out he was not, I took it as a sign that we could actually do this. We met with a maternal-fetal specialist. She went over all the possible risk factors if I was to get pregnant. The odds were not good, to say the least. On the drive home from the appointment, I broke down completely heartbroken. Everything felt real and for the first time. It finally sank in that getting pregnant and giving birth was not something I could do. I realized that I had, yet again, hit my limit.
My husband was disappointed as well but remained strong and positive that we would find another way. So began our journey into the surrogacy world. We had absolutely no idea what this involved. We met with an agency who explained all the steps, along with the costs. Again, I was heartbroken because, frankly, we could not afford it.
We continued our research and found more information about couples who chose to go an “independent” route where they don’t use an agency. After discovering this, it finally seemed possible. The next step was to get me added to my husband’s insurance, since his plan covered fertility services and mine did not. This involved waiting four to six months for open enrollment.
During this time, we had a family member volunteer to be our surrogate, but it ended up falling through. Then a trusted co-worker of my husband volunteered, but again, it fell through. We’ve now been on our family-planning journey for about two years now, and it feels like a lifetime.
After the last option fell through, I decided to go public about our search for a surrogate and truly just laid it all out. I figured at this point, what could it hurt?
I decided to make a Facebook post so that more people would see it. After being shared and liked over 150 times, my heart warmed, and for the first time in a long time, I had hope again.
We still don’t know where our journey will lead, but I feel confident that one way or another, we will finally get the family we long for. As a 34-year-old with CF, I have found my new normal and feel confident knowing that while I may hit another limit in my lifetime, I know it’s not the end.
Interested in sharing your story? The CF Community Blog wants to hear from you.
