I was a healthy kid living in rural Wisconsin when, at age 11, I passed out at an elementary school track meet. I was diagnosed with pulmonary arterial hypertension (PAH), high blood pressure in the arteries leading to the heart. The lungs become damaged and it becomes more difficult for the lungs to supply blood and oxygen to the body.
I developed PAH due to a mutation that causes hereditary hemorrhagic telangiectasia (HHT), a genetic disorder that causes abnormal blood vessel growth.
For several years, my condition was well managed with several medications, but the anemia worsened my PAH. Shortly after graduating nursing school, I coughed up blood and ended up in intensive care.
I had terminal PAH and respiratory failure and needed treatment. double lung transplant. I knew my PAH diagnosis would ultimately require a transplant as there is no cure, but to be told that at the age of 22 was incredible. — When I felt like my life really began — It was a big blow. Basic activities like getting dressed, cooking a meal, and walking to the car took up a lot of me.
Multiple lung transplant centers across the country said they would not accept my case due to concerns about increased blood loss due to HHT. but Dr. Luke Benvenuto His team at NewYork-Presbyterian/Columbia University Irving Medical Center took a chance on me.
After all, my life wasn't over yet. It was just the beginning.
After a successful double lung transplant in March 2023, I not only regained the ability to breathe easily, but also learned more about myself. My physical and mental strength is more than I even thought I had.
I had the best support system in my family and friends, both here in New York and back home in Wisconsin. Almost nine months after my transplant, I ran a 5K with my transplant team. Doing that with the people who literally saved my life means more than I can explain.
I became a program coordinator for the HHT Center of Excellence at NewYork-Presbyterian Hospital/Columbia University Irving Medical Center, and now I am able to give back to patients like me.
Not only do I live in New York City, but I can also run through busy streets if I'm late for the bus. In summer you can jump into the middle of the lake and swim for hours. Cheer on your team at a sporting event or your favorite music artist at a concert. I have come to cherish being able to jump, dance, and scream with my new lungs without thinking. This transplant gave me my life back. I am living a dream I never knew I had.
