My journey to a cystic fibrosis diagnosis was long and frustrating. It began when I was approximately 50 years old. I had been battling an infection, and after an X-ray was taken, my doctor told me I had chronic obstructive pulmonary disease (COPD). I asked, “How can I have COPD when I just rowed a 22-mile race?” I was convinced she had made a mistake.

At that time, I was a single parent working full time for the postal service. I had been a competitive rower until my daughter was born. I used to get in my car and say, “Got the boat, the oars, the seat…” and then it became, “Got the diaper bag, the bottles, the toys...” 

I kept getting lung infections that no one was able to help me with or explain how I was getting them. One pulmonologist told me I had large lungs because I was an athlete. More CT scans, X-rays, PET scans, all with different diagnoses. Meanwhile, my lungs kept getting worse. I was rushed to the hospital one day when my intestines twisted, and I had to have a colon resection. No one had any explanation as to why it had happened.

Years later, I told my daughter I was going to sell the house and buy a boat to live on. “Wait, what?” she said. We started looking at apartments for her and she fell in love with the first one. I drove to Lake Ontario to buy an old fishing trawler to live on. We were both off on our new adventures. 

My medical mystery took a back seat, that is, until I went to visit my brother in the hospital. He had been diagnosed with cystic fibrosis at the age of 45, after first being misdiagnosed for five years with Crohn’s disease. He was in the hospital battling Burkholderia cepacia and had told me it wasn’t contagious. I had driven his wife and my sister to Boston, and we visited him for two days in a row for hours at a time. I was wearing my mask, as I always do in hospitals. He was in a private room with the door closed.

I became deathly sick a few days after. My doctor ran tests and put me on antibiotics, but I kept getting worse. I missed three months of work. A bell went off in my head, “Wait, no one else got sick when we visited my brother, but people with cystic fibrosis are prone to cross-infection. Could I have CF too?”

I asked my pulmonologist to test me for cystic fibrosis. Positive. Finally, everything made sense.

This experience has made me become an intense advocate, not only for myself, but for others.

I wrote to all of my past doctors who tried to help me to let them know my diagnosis. It’s my hope that if someone else comes in with similar symptoms, they will now think to test for cystic fibrosis.

I find it heartbreaking when I hear of babies being born with cystic fibrosis and beginning their battles from day one. Or of the young people who struggle with treatments or have to have lung transplants. My heart goes out to them and their families.

I am one of the fortunate ones. I’ve had an amazing life. Even though I was sidelined along the way after the age of 50, I wasn’t really knocked down until I was diagnosed at 69.  

I still have mixed emotions when I see my friends rowing in the harbor, while I cannot climb seven stairs without getting out of breath. That’s OK. I allow myself the time to grieve what I can no longer do. I look at all I have been able to accomplish and am forever grateful.

I am now 71 and my daughter has been hounding me to write a book about my life. Perhaps a winter project, before my memory travels to places unknown.

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