Karen Kinsey, Virginia

I received my double lung transplant in January 2023 at NYU Langone in New York City. I was diagnosed with LAM in October 2002 after my second lung collapse and VATS surgery with talc pleurodesis. My first collapse, a partial, was in September 2000.I live in northern Virginia, just outside Washington DC, and began participating in the NIH LAM protocols in 2003. I participated in the MILES trial and began Sirolimus in 2011. In that year, I also began using supplemental oxygen.

My transplant journey began in 2018 when my DLCO was about 30%. During the extensive evaluation process, I learned that I have very high antibodies in my blood that would likely reject the lungs of virtually all donors. In addition, the talc used in the 2002 pleurodesis had become almost cement-like, making the removable of the lung a considerable challenge. Because of these factors several centers did not accept me as a candidate. The fourth center, my local hospital, accepted me as a single lung candidate.

Thanks to a COH Zoom meeting in early 2022, a fellow Lammie suggested that I contact NYU Langone. Their immunologist was able to identify only 1 antibody that needed to be avoided. In compliance with their request, I was off Sirolimus for a month before I was listed in October 2022.