Chance or Destiny: A CF Story
By Megan Carroll
Before I get into too much detail, let me start by saying this entire tale is centered on cystic fibrosis. This story has two main characters- Tori and myself. We met at the University of North Carolina at Greensboro after joining the same sorority. We barely knew each other when we were paired to live together. In August of 2014, I stepped foot into a room the size of a walk in closet. There sat Tori sitting cross-legged, unpacking, in a sports bra and shorts. Quickly I noticed two scars across her stomach. “Oh yeah, I guess I should tell you I have cystic fibrosis,” she said as if it was a way to start small talk. I didn’t know what that really meant, just as I didn’t know what Tori would become to me. Throughout that year, I was introduced to nebulizers, vest treatments, coughing attacks in the middle of the night, high calorie diets, and the dozens of medicines taken everyday. I found out that the scars were from a bowel resection and a feeding tube that Tori had at some point in her childhood. That year, I was also introduced to a girl who was brilliant in her kindness, despite her dark, sad story. I was introduced to a girl who was utterly admirable in her strength, and who was unlike anything I can describe. It was during this year that I decided “best friends” is an overused label. Tori wasn’t merely a “best friend”. She became so much more. She was comfort. She was honesty. She was a voice of patience and understanding and reason. Her brain seemed entwined with mine- viewing the world with the same angry questioning, yet awestruck eyes that I did.
I don’t think there is a word strong enough to describe what we became to each other. Our stories before we met each other were heartbreaking and sometimes I think the world knew I needed someone who’s bitterness matched mine, but who still saw the beauty in the world. I think there was more than luck in meeting Tori.
We lived together the following year in an apartment. I slept in her bed more than I did my own. I went with her family to New Orleans for New Year’s Eve. I watched her oldest sister get married in Bald Head Island. Tori shaved my head for St. Baldrick’s while together we raised thousands of dollars for childhood cancer. I went to Disney World, proudly claiming the title “Megan Tamborino”. It was during this year that Tori was hospitalized with a lung infection. I remember calling my dad sobbing while sitting in the hospital lobby. I remember crying and saying something like, “she actually has it, dad. She has cystic fibrosis.” It had never registered until that moment. Sure, I watched her do the medicines and knew she went to clinic appointments, but I had never seen her like that. It’s amazing to me that when our loved ones get that sick, it somehow feels like we’re the ones that are going to die.
Let me deviate for a minute and tell you about the Tamborino family. Tori’s family consists of her parents and 4 other siblings, 3 of which were diagnosed with CF as children as well and one has since passed away from battling both CF and leukemia. This is not a chapter of their lives that I experienced with them, but from the stories and feelings they express I will simply say this: never in my life have seen a family go through so much, yet still find so much love in the world and in each other.
Now flash forward a bit. Tori and I both graduated college in December of 2016. I was planning on going to South Korea to teach English as a way to see the world and to save up some money before applying to physician assistant schools. Tori was staying in North Carolina, finding a job. I went back to St. Louis for the weeks before South Korea because I knew I needed sinus surgery. I was deaf in my left ear from many ear infections; I had polyps, underdeveloped sinuses, and needed to figure out my health before I went abroad. My ENT took a full history- from the day I was born until that very second sitting there talking to him. That history consisted of hospitalizations for pneumonia, many ear infections, sinus infections, bronchitis, being underweight as a child, unexplainably passing out multiple times at track practice, going into pulmonary arrest after getting my gallbladder out at age 21, multiple GI problems, and many other issues I dealt with while growing up. He looked me dead in the face and said, “I don’t think anyone is this unlucky to have had so many random health issues in their life. I think there’s a bigger issue.”
The “biggest thing” it could be was cystic fibrosis. Two days later I got a sweat test. One day after that, I was diagnosed with cystic fibrosis. Tori cried and left work early the day I told her. I think she was sad that I would now enter that part of her world and would have to feel some of the pain she feels on a daily basis.
I’m sure if you somehow were able to calculate the odds of two girls living together in a school in North Carolina, while they both (unknowingly at the time) have CF, you would find that it is something like a one in a billion situation. Eighty percent of CF people are diagnosed before age 2. Now, CF screening is a part of newborn testing. But I was diagnosed at age 23. I was almost relieved to be diagnosed. Everything in my life made a little more sense. I passed out at track practice because I wasn’t replenishing the salt I lost. I was underweight and small because my body couldn’t absorb vitamins and nutrients like a normal person. My colds turned into pneumonia or bronchitis because my lungs couldn’t rid themselves of the mucus trapped there. I was never afraid. I knew everything I needed to know. I immediately started on pulmozyme and hypertonic saline. I knew how to set up nebulizers. I knew how often to do vest treatments. I knew everything that CF was because of Tori. I wasn’t mad. I was okay because of Tori. I often wonder how to thank her for that. How do you thank a person for preparing you so fully for the hardest thing life will hand you?
In the last two years, I have been hospitalized a dozen times for lung infections, surgeries, kidney infections, bowel obstructions, and kidney failure. Tori has had multiple PICC lines (a type of permanent IV) for IV antibiotics. I am currently on 37 medications. Tori is on “twenty something”. In the cystic fibrosis community, they say we’re supposed to remain 6 feet away from each other at all times. They say we grow bacteria in our lungs and that by being so close to other people with CF, we are at risk of sharing our bacteria and getting each other sick. Tori and I say, “who cares?” I would rather live in a world where Tori and I laugh too hard and talk too much and wonder about the crazy universe that merged our stories together, than live a dull life far from her.
If you’ve stuck around to read this, I hope you were able to get a glimpse of what this story is. It is a story centered on a kind of bond that has yet to be labeled, but is felt by so many. It’s a story about two girls, who had no idea how that small dorm would change them. It is a story about the unknown and the unquestionable, the dark and the light, and the illness and the silver lining. I don’t know what we want out of this story being told: awareness maybe, of CF and cancer? Or maybe we just want others to wonder with us about whatever force or God or universe brought us together? Or perhaps, we just want our story out there- so anyone else who has a friend that’s more than a “best friend” can smile and laugh. Maybe people who have lost someone can remember for a second that there’s still goodness out there? I don’t know, I just know I was compelled to tell you a little about our magic. And I hope that whoever is reading this enjoyed getting to know my CF story.
About the Author: Megan Carroll was born and raised in St. Louis MO. After graduating high school, Megan graduated with her Bachelor of Science Degree in Kinesiology: Sports Medicine from the University of North Carolina at Greensboro in 2016 She is currently pursuing a Masters of Science Degree in Athletic Training at Azusa Pacific University. With an upcoming internship with the Arizona Diamondbacks, she hopes to continue working with athletes at a professional level following graduation. Eventually, Megan would like to continue her education in pursuit of a Doctorate Degree, focusing on research involving cystic fibrosis and athletes. When not taking classes, Megan enjoys all things sports. Her favorite teams are the St. Louis Cardinals, the St. Louis Blues, and all USA Olympic teams. She is an avid runner and book reader and loves spending time with her friends and siblings.