Spread the Word: September Is PF Awareness Month

Spread the Word: September Is PF Awareness Month

A large number of people with pulmonary fibrosis (PF) were unaware this disease even existed before they were diagnosed.

I was diagnosed with idiopathic pulmonary fibrosis (IPF) in December 2014 and received a lung transplant a year later. Doctors speculated that I had been living with IPF for several years, but the symptoms were not severe enough to affect my daily activities.

After an exacerbation caused by a viral infection, my supplemental oxygen needs increased exponentially, requiring me to begin the evaluation process for a transplant. Upon my diagnosis, I had opted to take ownership of my disease and become an advocate for my own healthcare and the care of others.

Each September, the PF community raises awareness among the general public and raises funds for research and proper medical care. This year, the month is more meaningful because of something happening to someone close to me. A lung transplant friend is currently fighting for his life.

My friend was listed for transplant before me and received his gift of life almost immediately afterward. Unfortunately, some complications occurred after surgery, including primarily gastroparesis. His recovery was slow, but he began to overcome the complications and lead a normal transplant life.

About a year after transplant, however, he had to move to another city and receive care from another medical institution. He began to have complications several months later and was hospitalized periodically. He eventually moved back and was immediately admitted to an area hospital. I was only able to see him through a glass door because doctors were still trying to rule out an infection, but we were able to communicate through hand signals and loud talking on my part.

The Pulmonary Fibrosis News forums are a place to connect with other patients, share tips and talk about the latest research. Join today!

He is currently in a specialty hospital being weaned off a ventilator. I was able to visit with him, and when I walked in, he gave me a smile and we fist-bumped. He is under heavy sedation and only able to stay awake for short periods of time, but I do think he feels my presence in the room. I want him to overcome this obstacle and get stronger because he may have to get another transplant, if he becomes eligible.

When I see him in the hospital bed, I picture myself lying there. When I leave him, many scenarios are rushing through my head. None of them are positive. As a friend, I feel helpless in his fight, but I have hope.

Each September, the PF community raises awareness and funds for research and medical care. (Courtesy of Mark Koziol)

At the moment, my friend is not suffering from IPF, but from lung transplant complications. However, his condition is a direct result of the IPF he battled for several years before he was able to receive his transplant.

I hope there is a major breakthrough in research and clinical trials related to pulmonary fibrosis that will fight off the scarring. We patients know what it feels like to have our oxygen restricted and to fight for each breath. Please spread the word about pulmonary fibrosis. Make people aware of this disease. I tell anybody who will listen about my medical condition. Anyone and everyone can make a difference.

***

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.

Mark is a survivor of Idiopathic Pulmonary Fibrosis and subsequently a single lung transplant recipient. He is a former educator and now has been offered an opportunity to share his journey with the readers of Pulmonary Fibrosis News. Mark resides in Cleveland, Ohio and is an avid sports fan supporting the professional teams in Cleveland. Mark has not let his diagnosis curb his enthusiasm for life.
×
Mark is a survivor of Idiopathic Pulmonary Fibrosis and subsequently a single lung transplant recipient. He is a former educator and now has been offered an opportunity to share his journey with the readers of Pulmonary Fibrosis News. Mark resides in Cleveland, Ohio and is an avid sports fan supporting the professional teams in Cleveland. Mark has not let his diagnosis curb his enthusiasm for life.
Average Rating
0 out of 5 stars. 0 votes.
My Rating:

2 comments

    • Mark Koziol says:

      Hello Donna, thank you for reading and commenting. You can get the bracelets on the Pulmonary Fibrosis Foundation website. Take care, Mark.

Leave a Comment

Your email address will not be published. Required fields are marked *