I never thought I would have gone through two double-lung transplants before the age of 22, but I was able to get through it with the support of my family — from sleepless nights in the hospital with my mom to sleepovers with my sister that consisted of painting each other's nails and watching endless reruns of our favorite rom-coms while eating our favorite ramen. My brother would come stay at the hospital as much as he could so my mom could go home and cook me my favorite meals. He would stay with me until visiting hours were over, giving me endless massages and whatever else I wanted.
When my mother was six months pregnant, my father and her were one of the first families to get genetic testing done at St. Luke's Hospital in New York City. Shortly after, they were told I would have a 25% chance of having cystic fibrosis. When I was born, a sweat test was performed, and I was diagnosed with cystic fibrosis at 2 weeks old. Besides the occasional hospital admissions, I was OK for the first few years of my adolescent life. But when I was 6, I was admitted to the hospital to receive a G-tube. Then, more frequent hospital visits caused my veins to no longer be viable, so at 14, I received my port. At age 16, I had just come back from a family trip when my health started to take a bit of a decline, and I started needing supplemental oxygen more frequently.
One night around this time, I went into a spasm of coughing that I couldn't control, so we called 911. I can’t recall the following three weeks because I had been put into a medically induced coma. While I was under, they put me on ECMO — a life support system that took over the jobs of my heart and lungs — and performed a tracheotomy. But all the while, they had the pediatric and adult lung transplant teams working to get me listed for transplant. I was later woken up from my coma and became the first pediatric patient to walk with ECMO in New York-Presbyterian Children's Hospital.
I then received my first double-lung transplant on Sept. 27, 2019. My health was great the following three years and I even had my G-tube removed, along with my port. But on the fourth anniversary of my transplant, I started experiencing an antibody reaction, which meant that my antibodies were starting to fight my donor's antibodies. I had to get plasmapheresis, a dose of Rituxan, and a constant BiPap. I was also relisted for my second double-lung transplant. It was a huge wake-up call to me about how valuable and fragile our lives can be with cystic fibrosis.
On Oct. 19, 2023, I received my second double-lung transplant, but along the healing journey, I faced multiple obstacles — sepsis, GI bleeds, learning how to walk again, and so many chest tubes I lost count. I knew I would need something that motivated me to keep on going, so I created a non-profit called The Air I Breathe as a way to give back to my community. I made a go-fund-me where people donated in order to buy the products I knew would be useful to those in a hospital setting. Multiple small companies donated products that I was able to donate to the patients, parents, and staff at the PICU, NICU, and transplant step-down floor. Those things consisted of notebooks, skincare, blankets, fans, mouthwash, restroom wipes and covers — things I knew would have made me feel better if I were to receive them.
If having CF has taught me anything, it's that, yes, it is a disease, but that doesn't define us. What we become — and how we see ourselves — is shaped by our families, friends, and everyone else around us. They are a big influence in our lives, and we should always treasure that. That is why my goal is to be more involved in my community, whether that be public speaking or mentoring others with CF.
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