A sudden health setback turned my eventual lung transplant into an immediate one. Although the transplant didn’t go exactly to plan, my preparation helped the process go more smoothly.
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The Cystic Fibrosis Foundation awarded up to $3.5 million to Arrevus Inc. to test a potential treatment for pulmonary exacerbations in people with cystic fibrosis in a late phase clinical trial.
I wish people knew that even if I don’t look sick, I still struggle with the mental and physical aspects of cystic fibrosis. Even my family and friends don’t truly understand what this disease does to your mental health.
We knew nothing about cystic fibrosis when my first daughter was born with the disease. We quickly became experts and took on the responsibility of educating our friends and family about what our daughter needed to stay healthy and thrive.
My daughter was born with cystic fibrosis and with an aversion to food. Teaching her to enjoy meals has been crucial to helping her grow and stay healthy.
Although the initial diagnosis for cystic fibrosis seemed to elude our doctors, we knew in our hearts that our son had cystic fibrosis. When we advocated for and got a CF doctor, we began a relationship that became a partnership of mutual trust and respect.
NextBreath is a free, biannual virtual event that provides support and connection for people with CF and their family members who are living with advanced disease or navigating through the stages of the transplant process.
Even though Trikafta saved my life, I am still dealing with the emotional trauma of being so close to death and missing the person I was before I got so sick.
On our journey to become parents, my wife and I experienced several disappointments and began to question the entire process. Meeting our daughters made it worthwhile.
I initially struggled with how to share about my cystic fibrosis with people I met when I started college. Here’s what I learned.