Always, always, always seek another opinion. As time passes, things change, so seek more opinions. With support from my Penn Pulmonary Transplant extraordinaire doctor at Penn in Philadelphia, we spoke with every top lung transplant program and surgical team nationwide. After months of having every lung transplantation test (respiratory, labs, CAT scans, x-rays, antibody, etc.) and procedures imaginable, you are told if you will be a candidate for their program. It’s like applying to college, but the focus is on your body, not your mind. And it’s 100 times more intrusive.

I received calls and letters from hospital transplant programs informing me that I could not be successfully transplanted for a second time and that I wouldn’t survive. It was crushing to hear, and I felt deserted. One top program told me that they could transplant me. Still, they’d have to remove my esophagus since they were worried that the stent I had placed connecting to my pulmonary artery years after my first transplant probably melded with my esophagus. Their plan A was to remove my esophagus, and I’d be fed through my neck with a feeding tube for the rest of my life! What? This is Plan A? That offer was a hard NO!

So, in 2022 (2 years after my rejection began), I was accepted by only one transplant hospital in the greater Philadelphia area. The surgical team thought they could perform a successful surgery, but with no guarantees that my esophagus would remain intact. So, I waited and waited for my new lungs as my rejection disease progressed with my one offer. After two and a half years of waiting, I felt like I was suffocating, and no lung offers had been received for me.

In February 2024, my mom and I asked my Penn pulm transplant doctor to contact other transplant programs nationwide again since new transplantation surgical approaches always arise. That’s when we were introduced to NYU Langone in New York City! We met with the pulmonary transplant and surgical team, and I had to repeat tests for my candidacy evaluation. I couldn’t believe it! I received great news just a month after my assessment that I was accepted as a candidate for their program! I was so excited that I could be on two lists in different regions.

So, I had to undergo labs and breathing tests at hospitals in different states and regions for the next six months. It was tough for me, with my high oxygen needs, to be driven back and forth from Philadelphia to NYC for more tests, doctor appointments, and hospitalizations in NYC, lasting between 2-3 weeks in March, May, and July. If you want to follow my story and learn how I received an extremely rare direct organ donation from an FBI family, click here.

I suggest you keep going when you hear no time after time and feel like you’ve reached a dead end. Never accept no for an answer! It also helped me to spread the word about my situation to family and friends because there is always that slim chance of a miracle. Oh, and my NYU Langone surgeons weren’t concerned about my stent or the need to take out my esophagus! I had a successful double-lung transplant on August 18, and I’m expected to make a full recovery!