Jacqui’s Journey with Pulmonary Fibrosis

Hello! My name is Jacqui and I feel very privileged that you have taken the time to join me on my journey with Pulmonary Fibrosis.

My journey began in 2010. I was supposed to have surgery on my sinuses and the anesthesiologist was checking me over to make sure I was fit for surgery and noticed a few things. She questioned me about each of the issues. My fingernails were spoon shaped and there were red raised areas above the cuticles on my fingers. She listened to my lungs and felt I should see an internal specialist and made an appointment for me.  I was examined by the internal specialist and deemed fit for the surgery, but she felt more follow up was needed.

Pulmonary Fibrosis is not a well known or understood disease. Over the next few months, the doctors did the best they could to diagnosis my issue, but I was misdiagnosed 2 times and treatment was given for each diagnosis. This was an especially challenging time for me…we had lost my father (stepfather, but to me he was my Dad) to lung cancer and so many things were rushing through my mind. I struggled with each medical treatment I was given for each diagnosis.

I was then sent to see Dr. Richard Hodder. He was an excellent pulmonologist (respirologist) who was very kind and understanding. I had done some preliminary tests and then it was my turn to see him. I remember the overwhelming feelings of relief I felt, thinking I was finally going to get a diagnosis and hopefully some treatment. The nurse called my name and I went an sat in his office. He sat across from me and told me I had pulmonary fibrosis. I remember thinking….. what is that?

He then went on to explain the lung tissue becomes scarred and over time, as the scarring becomes thicker and more widespread, the lungs lose their ability to transfer oxygen into the bloodstream. As a result, patients become short of breath and the brain and vital organs are deprived of the oxygen necessary for survival. The only treatment is a lung transplant. At that moment I went on autopilot. I nodded my head in agreement like I understood. He asked me if I had any questions. I shook my head. I was still trying to get my head around the words….pulmonary fibrosis and lung transplant.

I thanked him and he said he would see me in 3 months. He also said if anything goes wrong, you call me right away. I nodded in a agreement. I raced for my car and when I finally got in and sat down. I was overwhelmed by feelings of shock and everyone’s friend at one time or another denial. I sat in the driver’s seat for a long time with my seat belt on, hands on the steering wheel tapping it with my thumb. Trying somehow to make sense of all this. I kept thinking “this cannot be right” and then the words “lung transplant” kept racing into my thoughts. Fighting hard to hold the tears back…I just wanted to turn the car stereo up as loud as it would go and speed off. I knew speeding was not an option, but turning up the car stereo was….so I did and drove home.

In the months that followed, Dr Richard Hodder passed away. I was heartbroken. He was a great doctor who had treated my father and then me.

I am looking forward to the writing the next blog.  Cheers and have a great week!

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Page Last Updated: 22/08/2018