Our Story

Sara was diagnosed with Cystic Fibrosis at birth, after experiencing problems with meconium ileus. Her older brother also has CF. Cystic Fibrosis (CF) Cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time, eventually resulting in respiratory failure, as well as affecting the pancreas and other organs. There is no cure for CF, but often times a life saving double...

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Trikafta Update


"Welp, the Trikafta is working. My old average was like 35-39% and then two days after Trikafta I was 40%. My first pre bronchodilator pft was 42% and... Continue Reading »

I’m being listed!


"HAPPY HALLOWEEN! I'm officially being listed for a double lung transplant!  Please DONATE to COTA in honor of me, it would be a treat! Also, hope the Trikafta... Continue Reading »

Decision Date


"The final decision on whether I will be listed for transplant now or later will be made on Halloween. If you are interested in being a part of... Continue Reading »

Procedure Update


"Went down for my EGD and Bravo placement. Everything went well as far as I know. Except, I bit my lip and have a sorer throat than normal... Continue Reading »

Transplant Evaluation Update


"I got admitted on September 28th and started on IV Tobramycin and Zosyn. I actually coughed during treatments which was a little different and had bad headaches and... Continue Reading »

Health Update


“Turns out I’m having even more of an allergy issue with Cefepime than before.. not just itchy but starting to spread and get a rash even with all... Continue Reading »

Transplant Evaluation Decision


"The transplant team has officially decided that they want more testing done and then they'll have another meeting on when/whether to list me. They said they usually will... Continue Reading »

Transplant Hopes and Fears


"I can't imagine what it would be like to have energy to run and play with my child. I can't imagine breathing clear breaths or being able to... Continue Reading »

The Transplant Process Q&A


I'm starting transplant evaluation next week. However, there seems to be a lot of confusion on what the actual transplant process is, so I decided to write this... Continue Reading »