Want to know why getting a flu shot is so important? I ignored my early flu symptoms, which ended up spoiling the holidays and leading to an exacerbation.
Before my double lung transplant, I experienced major body aches and poor posture due to my cystic fibrosis. Here are some of the ways I found to help combat this and ease some of my pain.
As a hospital administrator, I try to apply what I've learned from receiving care as a person with CF to provide better health care for my patients.
Life with cystic fibrosis is complicated, but there are ways to make things run a bit more smoothly. Here are some of my favorite ways to stay organized with CF.
Going on a camping trip is a great way to relax and unplug from the daily grind, but when you have cystic fibrosis, unplugging requires some planning and strategy.
At 34, I had no obvious symptoms or family history of colon cancer. My body was telling me something was wrong and compelled me to push for more tests to reach a diagnosis. Now every day I get up and learn to be comfortable living in the uncomfortable. With more screenings happening earlier, you may never have to.
Now that I am feeling healthy on Trikafta®, I no longer feel special for thriving despite the challenges of cystic fibrosis. I don’t feel like I belong in the CF community anymore, and I miss that sense of camaraderie that comes from a shared struggle.
Despite the scars and appearance-altering side effects of medications, I am proud of what my body has survived in the face of cystic fibrosis. Being a brand ambassador has lifted my spirits and led to a greater acceptance of my body, which has withstood a double-lung transplant, a feeding tube, and a port.
I decided that I wanted to live on the Caribbean island that I grew up on. Although it takes some planning and work, I'm thriving there.
As an individual with cystic fibrosis, I can give you all kinds of examples of how providers shouldn't treat their patients. However, it was my experience as a fictional patient that taught me how to be a better CF patient.