Heather and Kaila’s Story

Growing up, sisters Heather Kostelnik, 21, and Kaila Sass, 26, of Sheboygan, dreamed of something different than most children. They wanted to breathe effortlessly. Diagnosed with cystic fibrosis as infants, they’ve spent much of their lives in and out of hospitals, working their way through treatments and trying to stay ahead of the progressive disease. CF is an inherited, chronic disease that causes thick mucus to clog the lungs, obstructing airways and causing infections. It also hinders the body from breaking down and absorbing food.

“I’d always want to get a big hospital room because I didn’t want to be alone,” Heather said, preferring to be with Kaila, who always looked out for her. “When I was in high school, my lungs were in such decline it was hard to do anything,” Heather said. “I was using oxygen full-time.”

In 2008, Heather was added to the organ transplant waiting list and within a month donor lungs became available. When news came that Heather’s lung transplant was imminent, Kaila rushed to her sister’s side. A young adult, Kaila had married and moved to Colorado, but was experiencing a serious downturn in her health as well.

“Away from Wisconsin, I didn’t have the continuity of care,” Kaila said. “I also was extremely sick and very skinny.” By July 2012, Kaila, then age 24, was struggling to work and do everyday activities. The relentless progression of Kaila’s advanced-stage lung disease ultimately necessitated a lung transplant.

Grateful to have a new lease on life, the sisters are able to breathe in a way that, as children, they could have only imagined. Now their lives as lung transplant recipients are a mix of determination, resilience and making choices that lead to optimal health. Heather and Kaila’s transplant coordinators keep them on track with medicines and appointments, as well as helping manage the decisions and potential hazards they face as transplant recipients. The sisters are determined to be good stewards of the lifesaving gifts they’ve received, leaning on and supporting each other as they navigate their new lives.

“I have so much to do,” Heather said. “I want to go places. The doctors did everything they could on the medical level, and I am responsible for doing everything I can to keep myself healthy.”

“Being able to breathe is the greatest thing,” Kaila added