Karen Kinsey received her double lung transplant in January 2023 at NYU Langone in New York City. She was diagnosed with lymphangioleiomyomatosis (LAM) in October 2002 after experiencing her second lung collapse and undergoing VATS surgery with talc pleurodesis. Her first collapse, a partial, occurred in September 2000. Residing in northern Virginia, just outside Washington, DC, Karen began participating in the NIH LAM protocols in 2003. She took part in the MILES trial and started Sirolimus in 2011, the same year she began using supplemental oxygen.

Karen’s transplant journey commenced in 2018 when her DLCO was approximately 30%. During the extensive evaluation process, she discovered that she had very high antibodies in her blood, which would likely reject the lungs of virtually all donors. Additionally, the talc used in her 2002 pleurodesis had become almost cement-like, complicating the removal of her lung. Due to these factors, several centers did not accept her as a candidate. However, her local hospital eventually accepted her as a single-lung candidate.

In early 2022, during a COH Zoom meeting, a fellow LAM patient suggested that Karen contact NYU Langone. Their immunologist identified only one antibody that needed to be avoided, and in compliance with their request, she was off Sirolimus for a month before being listed in October 2022.