Chapter 2 – What The Heck is Cystic Fibrosis

My mom told me the story of how she found out what I was sick with. She was 21 years of age at this time. You have to keep in mind, in 1976 there was no internet, no wealth of answers at your fingertips, no support groups to lean on. At the time it was a disease that was relatively unknown and very often mistaken for pneumonia or bronchitis. It was rare and still is. There are only 70,000 persons born with it worldwide.

Some background on the evolution of the diagnosis. At the time we were living in Salmon Arm, BC. We had to travel to Kamloops, BC. For better care. After all these trips to the hospital and back to my paediatrician, mom and dad were getting desperate for some answers. On one of my visits to the doctor, he had a medical student trailing him. It was this med student who picked up on my symptoms and told my doctor that he had just read about this disease, cystic fibrosis, and maybe that was what I had. My doctor humoured him and ordered the only test available to diagnose CF, a sweat test. This was all before August 19, 1976.

On that day, my Dad (now 22 years old), was working on my parents’ friends’ house Phil and Jill, in Kamloops. My mom left my brother with Jill and her 2 boys, Cory and Tannis. As was often the case, mom was called into the doctors office. She expected to here the same old, she’s got pneumonia. Take her home. Upon arrival the doctor asked if he could talk to her alone, I frowned, knowing that he was about to drop a bomb, I then stomped away with the nurse. Even at my tender age of 4 I was able to read peoples energies. I still read peoples energies. It’s a skill I was blessed with. Anyway, she was by herself. She sat there also having that feeling that life was about to change. Once the diagnosis was verbally expelled from his mouth, Mom felt relieved but at the same time terrified. She had no idea what the heck cystic fibrosis was. We as a family had zero knowledge about a disease that shaped the rest of all of our lives. She knew that I was sick, she didn’t know that I was critically ill, until much later.

She was told the Coles notes version of what CF is and left the office in a state of shock. There were no pamphlets, little to no known research and my GP knew about the same as mom and dad did about CF. He told her that I would need to go to Vancouver General from now on for more answers. She heard everything come out of his mouth but didn’t understand it. “What do you mean prognosis is not great?”, she thought to herself. That was all she could remember him saying.

As soon as she got to the car she needed to get to Dad ASAP. She headed over to Phil and Jill’s where dad was working and told him the news. While she was trying to say cystic fibrosis, she broke down. Dad was numb. Shock and reality took months to grasp. They didn’t know enough about it to know that it was going to kill me. Again, no internet, no one in the family had heard of it, it was a ghost for all intents and purpose. I think this was a blessing in disguise, the not knowing the full extent of the seriousness of this disease. From that day forward I was NEVER coddled, partly from lack of understanding and partly from true grit. From that day forward all of our lives were changed forever.

Look for ‘Chapter 3 – Now What?’


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