After being diagnosed with a devastating disease like idiopathic pulmonary fibrosis (IPF), life tends to come to a momentary halt. I was OK mentally after the initial diagnosis, but I then contracted respiratory syncytial virus (RSV) in January 2015. This secondary illness, caused by my IPF diagnosis, put me in a position I never thought I would be in at this point in my life. I realized my life would never be the same.
I had a successful career in education, but I knew this would change. My job as a peer coach required me to be in the building I was assigned. If I needed a transplant, a plan was put in place for me to work at a district administrative building. But this was dependent on labor relations approving the assignment. After a three-month hiatus from work due to my illness, I went back to work and was productive, completing necessary data reports and end-of-the-year quantitative reports for the school I was assigned.
Summer vacation came, and I was in lung transplant pre-evaluation status. My plan was to go back to work when school began. I would need a wheelchair, but using my own strength wasn’t a viable option. I found this out rather quickly. My doctor then wrote a prescription for a powered scooter that was light enough for me to take apart and place in my truck. Fortunately, someone else always was around to do this for me. I am a lucky person to have so many people who care and watch out for me.
Going back to work was an endeavor. Every day, I needed help showering and putting on my clothes. The wake-up call was quite early because my wife had to take care of herself and me. She never complained. There were some obstacles, but we pushed through. I worked until I received the call for transplant. It was a long 24 hours before surgery began at 12:04 a.m. on Dec. 4, 2015.
Several months after surgery, I was ready to contact labor relations regarding a new position to accommodate my ADA needs. I could no longer work in a school environment because of immunosuppression caused by the lung transplant. I wasn’t upset at being denied the position, but I was disappointed by how it was handled. My co-workers came through again, and over the course of a year and a half, they donated 150 days of sick time for my use. I was paid for another year after my transplant. I have so much gratitude for their kindness.
During the summer of 2016, I applied for disability retirement through the State Teachers Retirement System of Ohio (STRS). I anticipated that I would be approved because it was impossible for me to work in an environment surrounded by children. I was approved and did not miss a paycheck.
After my approval notice, I began to contemplate what I wanted to do to keep busy. I felt I stayed busy enough, but I needed something more. I just didn’t know what I wanted. There are very few jobs out there that allow me to work from home and make a few extra dollars. STRS of Ohio also must approve the position. Any type of occupation related to education or government would not be approved.
Last January, I answered a Twitter ad and applied for a columnist position with BioNews Services. The job is in my wheelhouse — I can work remotely and don’t require an extreme number of hours. My brain also gets the necessary exercise it needs.
Since I received the transplant, I felt I have not been using my brain as much. The anti-rejection medicine I take has given me troubles with short-term memory loss. The medicine also causes me to think a little harder when I am looking for the right words when writing. This sometimes makes writing frustrating. In the past, words flowed easily, although I was doing a different type of writing. A month into my column position, I was offered a co-moderator position for the Pulmonary Fibrosis News Forums.
I love to advocate for pulmonary fibrosis and lung transplantation. I feel it is my calling in life to help others cope when dealing with these medical conditions. Although I sometimes have problems trying to find the right words, both positions bring me satisfaction. I will tell my story to anybody who listens — and sometimes, even when they don’t listen.
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
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