I’ve survived to the age of 63, searching for air with cystic fibrosis.  

When I was born in 1963, I looked like a perfect, beautiful 6-pound precious bundle of joy to my two young parents, who were just 16 at the time. Obviously, I was a great surprise to both of them.

Although I looked perfect, I was born with a terminal disease no one could see and only I could feel. Unfortunately, in the 1960s in Wyoming, my doctors didn’t have the experience, knowledge, or ability to recognize what was wrong with me. So, I’ve spent my whole life searching for air, trying to breathe. 

Back then, my mom took me to every allergy doctor in Colorado since the Wyoming doctors couldn’t figure out why I was struggling to breathe. After testing, I was told I was allergic to 99 out of 102 things. So, then I thought it was all the things you could not see in the air that was making me sick, and I adjusted my living situation to accommodate these allergies.

I would close all the air vents in my room and car to keep the air from blowing through ducts and onto me. I was afraid the air would have dirt and dust that would make me cough, my nose run, my eyes itch, and all the things that allergies cause. I got allergy shots and allergy medicine all the time, and I still couldn’t breathe.  

When I was in the 6th grade, I was hospitalized for over two months with pneumonia, and I couldn't quit coughing. Back then, they couldn't figure out why I kept getting sick. The doctors told me and my mom the coughing was psychosomatic because my father left me... how screwed up is that? 

This made me hide my coughing more, as I didn't want people to say it's all in my head.  

I was sure it was the Wyoming dirt, the sage brush, and everything that I was allergic to that was making me sick. So, I moved to Nevada in the early 1980s to see if I could breathe better. I was an avid water skier, so I played on Lake Meade and being active outside was great. But I still had to take lots of allergy medicine because while I was able to be more active outside, I still struggled to breathe. The thing that helped me was long, hot showers in the morning, where I could cough up all the gunk.

Years later, in the summer of 2014, a friend asked me to visit him in Iqaluit, Nunavut, Canada where he was working for four months. So, I took the adventure, with plans to also go to Greenland and Iceland while I was there. It was an amazing summer with the Northern Lights. Being surrounded by snow and ocean, I thought I would be able to breathe wonderfully there. Unfortunately, the air was tainted by a dump fire that was allowed to smolder for months.

In October, I returned to Nevada from Canada, and I went immediately to the emergency room. I was sure I had contracted tuberculosis; I was so sick. I'd been coughing for a month in Canada, and it was getting worse and worse. My lungs felt huge and heavy inside of my body. 

Doctors started doing all sorts of testing, and when they told me they thought I had cystic fibrosis, I told them no way! I was known as The Rock Hard Lady; I was the queen of fitness. Children die from that disease. I couldn’t have cystic fibrosis…. 

But I did. That unseen disease, that nobody could figure out my whole life, was cystic fibrosis. So, I got started on the proper medication, diet, exercise, etc.  I was able to get my health back and I made a goal for myself to still be alive in 2025 — 10 years from then. And I worked hard every day to do everything I could to get better. My doctor suggested I move to an island without an active volcano.  So, in 2020, I moved to Molokai, Hawaii in a beautiful oceanfront condo where I was able to kayak every day. 

However, in 2023 my health took a turn for the worse, and I was sure I was at the end. I begged my doctors and insurance to approve Trikafta so that I could see if the medication would give me another chance… and it DID!!! 

Within the first week of using Trikafta, the quality of my daily life improved exponentially! I felt like a new person, and I was enjoying a quality of health and wellness I had never felt before! 

So, as I write this little bit about my journey, I’m also celebrating. Not only did I make it to 2025, but I made it to 2026. And now I have a new goal... living to 2063!  

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