Blog

For years, my son grew up as a perfectly healthy kid, despite being diagnosed with CF-related metabolic syndrome. But when he suddenly developed pancreatitis, I had a hunch it was actually related to cystic fibrosis.

After my son, Julius, was diagnosed with cystic fibrosis, I adjusted to his daily treatments and medical routines, and though I feel guilt and sadness seeing him becoming so familiar with his CF equipment, I’m learning to embrace our new normal. 

Living with CF — and undergoing a double-lung transplant — is extremely difficult physically and mentally. But with help from my support system, I’ve fostered a positive mindset that drives me to continue the fight. 

My evolving relationship with cystic fibrosis brings feelings of guilt and jealousy but also a deep sense of gratitude and understanding. 

I got dangerously sick while waiting for double-lung and liver transplants. But then I got a second chance at life after starting Trikafta, even though I have two rare mutations.

Living with cystic fibrosis means constantly navigating the emotional and physical strain of waiting. Despite the exhaustion and uncertainty, waiting reminds us of our ability to endure in the face of overwhelming challenges.