Our 2021 Blog Ambassador Kasey Seymour is back for another year! As a Double Lung Transplant survivor, Kasey shared her experiences living overseas with Cystic Fibrosis and her double lung transplant journey…
My name is Kasey Seymour and I am so excited to be a CF- transplant ambassador for the Lea Marie Faraone Foundation!
I am 29 years old and live in Hoboken NJ with my husband and dog (that I have spoiled rotten). I was diagnosed with CF when I was 4 and a half years old, when my family happened to move to Baltimore for my dad’s job. Growing up I knew that I was different; none of my friends had to go to the nurse before lunch, their moms didn’t come in to explain how they did physical therapy at night, and they didn’t have to spends nights in the hospital. It wasn’t until I was in the second grade that I met someone just like me: Lea Faraone.
Lea was a grade ahead of me at Cathedral, but my parents explained that she was sick just like me but that I wasn’t able to be around her because we could get each other sick. So, I would see Lea running to the nurse before lunch just like me, but we were both careful to hold our breath when we passed each other. Soon all my friends were holding their breaths when they passed her friends, to this day I’m convinced that if we had both stayed at the same school the whole 6th grade would have held their breaths when they passed the 7th grade and vice versa.
Lea and I went our separate ways after Cathedral, but we would reach out every now and then. From Cathedral my dad’s job moved us to London where I was not only exposed to a whole new world but a whole new type of medicine. I was hospitalized quite a few times in London but because they didn’t have a physical therapy nurse, they would tell my mom and I to get out and walk around the city all day! It was a freedom that I had never experienced being a patient at Hopkins. We spent three years living there, and my dad’s company wanted him to stay on for a 4th but my doctors back in the States said it was time to come home. So, we came back and I started high school at St. Paul’s School for Girls.
Throughout high school my health started to really deteriorate, and by the time I graduated my lung function was in the low 40s. Because I was so sick my family, doctors and I decided I should stay close to home for college and so began my four years at Loyola University of Maryland. I was able to live on campus, but it wasn’t always easy. I would leave at least 30 minutes before class to make it across campus to class on time. I missed more and more nights out with friends, I was constantly going to the doctors and often coming back with not great news. But despite my failing health I loved college; not only did I meet some of my best friends, but I also met my husband there. Jack and I started dating sophomore year of college and got married at Loyola 4 years after graduation. I always knew I wanted to study business and I loved that my dad’s job took us abroad, so I found the perfect major in international business!
Unfortunately, because I was only getting sicker my dreams of doing business abroad would have to wait, but I was lucky enough to get a job in finance in Baltimore. I started working right after graduation and was having the best time meeting new friends and living downtown! My health was still all consuming. I was frequently on IVs but because I didn’t want my employer to know how sick I was I would leave the building and do them in the car at lunch and then again when I got home late at night. I knew this was something I couldn’t keep up, but I loved working and I didn’t want to stop. After 5 months of working my doctor called me into his office (not a regular doctor’s appointment) and I knew something was wrong. He sat me down and told me that if I did not stop working that I would be dead by the end of the year. This conversation occurred in November. He had finally done what everyone had been trying to do; he scared me straight and I went on disability the next day.
Thankfully my company had long term disability insurance, so I was able to continue getting paid and keep my health insurance, but after working non-stop for 24 years taking a step back was difficult for me to come to terms with and I fell into a deep depression. Three months after I stopped working my CF team referred me to the lung transplant team at Hopkins. It was not a pretty transition and I fought everyone the whole way trying to convince them I didn’t need a transplant. But my body had different plans and Christmas 2015 I realized I wasn’t going to make it without a transplant.
I was listed in January of 2016 and it’s as if my body knew, I began deteriorating faster than I ever thought possible. I was on O2 and bipap. I couldn’t brush my own hair and I couldn’t eat anything without it being even more difficult to breathe. Thankfully on June 9th my family and I got the call and I received my angel lungs, with only 48 hours to spare. Life moved fast after my transplant as I went from death’s doorstep to the healthiest, I have ever been! Over the last four years, I have gotten married, moved, and started discovering new passions. But somewhere along the way I started talking to an old friend. Lea and I reconnected and were soon texting every day about everything from The Kardashians to transplant prep.
She was there for me through the ups and downs of CF life after transplant and I hope that I was there for her too. It is because of this amazing woman that the Lea Marie Faraone Foundation is now helping children with chronic illnesses around the world and I am honored to have a small part in that.