Living

I hear a lot about survivor's guilt as a cystic fibrosis (CF) patient. I’ve had moments in my life I feel it creeping up when others talk about struggles with...

Families have many dynamics. There is a dynamic between the parents and children. The children in a family have their own dynamic. And the parents have their own dynamic, too...

We all hear the physios harp on about exercise but sometimes it can be daunting thinking about where to start. It took me many years and the breakthrough of modulator...

A recent article in the New York Times Opinion written by Dr. Daniela J. Lamas, a pulmonologist in Boston, detailed the story of momentous change occurring in the cystic fibrosis...

I love viewing my journey with cystic fibrosis (CF) through the lens of Joseph’s Technicolor Dreamcoat. If you’re unfamiliar with the biblical musical, just know that Joseph is gifted a...

Some of the fiercest people I know have CF. The strength, determination and sheer willpower to fight for another breath is formidable. To friends and family who don’t have the...

Getting a new medication prescribed can feel overwhelming. I was prescribed a new medication a few years ago. And this medication had very specific requirements and instructions. One of the...

I have CF. For most of my life, that has been public knowledge. I shared it with people nonchalantly, as I would my favorite food. It was so normalized to...

Living with CF, I know pain–all kinds of different types, locations, and degrees of pain. Pain from lung infections and coughing, abdominal pain or “CF belly” pain, joint pain, and...

The 25th anniversary of my diagnosis. It crept up on me without my noticing. I was on a meeting a week or so ago discussing when we started showing symptoms...

Painsomnia became more of an issue for me in my twenties when I felt it was a symptom often overlooked by CF doctors. I explicitly remember telling a ward physician...

I had cystic fibrosis (CF) exacerbations every other month for many years. The routine was pretty much the same. My doctors would tell me to call them if I felt...

Five years ago, when my daughter Caroline was two weeks old, she was diagnosed with cystic fibrosis (CF). Initially, we kept her diagnosis private, only telling close family members. This...

Receiving the gift of Trikafta didn’t feel like a cure, it felt more along the lines of a promise. It felt like it promised me a life back that I...

In late March 2020, I discovered two pieces of bad news. The initial transfer did not result in a pregnancy. I felt extremely disappointed and frustrated. There was so much happening...

Some things always go together, like cystic fibrosis (CF) and airway clearance. It’s no surprise that airway clearance is an important part of CF maintenance. For decades, most people with...

As a CF patient, one of the most heartbreaking realities is you must stay at least six feet apart from other CFers. I am willing to bet that 85% of us...

What did you do for Valentine's day? I feel like there are three groups of people when it comes to Valentine’s Day. Group one loves Valentine's Day. While group two thinks...

In my previous article, I explained why grey is an essential color in my journey with cystic fibrosis (CF). Back to the color grey. The grey awareness ribbon represents a...