Being in and out of the hospital and unable to recognize my own body was taking a toll on my mental health. But after my liver transplant, my family stuck by my side and helped renew my positive outlook on life.
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I underwent liver and kidney transplants in 2021 after a successful lung transplant in 2012. For a number of reasons, the recovery from second transplant was much more difficult.
As someone who does not qualify for Trikafta®, I took particular interest in the first plenary of the North American Cystic Fibrosis Conference, which discussed potential treatments for people with nonsense and rare mutations. I learned that researchers are exploring a variety of options, and some early research has shown promising results.
While I’ve had the incredible opportunity to participate in clinical trials for cystic fibrosis, my nonsense mutations mean I can’t benefit from modulators. I was inspired by the North American Cystic Fibrosis Conference’s second plenary session, which discussed how we can evolve clinical trials to develop treatments for all people with CF.
The third plenary at this year’s North American Cystic Fibrosis Conference focused on the changing needs of the CF population that are compelling an evolution in CF care. As a person with CF, this evolution in care directly affects me as I face the challenges of living longer with this disease.
After two kidney transplants and one double-lung transplant, I am currently doing dialysis treatments as I wait for my third kidney transplant. Keeping a positive attitude and having friends and colleagues who support me have helped me adjust to life on dialysis.
The award — the highest scientific honor awarded by the Cystic Fibrosis Foundation — recognizes those who have made significant contributions to our scientific understanding of CF.
The Quality Care Awards recognize Cystic Fibrosis Foundation-accredited care centers that have continuously demonstrated a commitment to improving the quality of care they provide to people with cystic fibrosis.
The Bonnie Ramsey & Richard C. Talamo Award recognizes individuals who have spent their careers researching and caring for people with cystic fibrosis and whose contributions have altered the course of this disease.
Even though I haven't cultured for nontuberculous mycobacteria, I was excited to learn more about the treatment for the bacteria in people with cystic fibrosis during the virtual session at the North American Cystic Fibrosis Conference.