It Takes a Village to Care for Someone with IPF

Many people are apprehensive about asking for help when faced with dire situations. Fortunately, I haven’t had to ask for help with my idiopathic pulmonary fibrosis (IPF) needs. Those in my circle have stepped up in the biggest ways possible and have been there for me when I needed their help most.

Shortly after my IPF diagnosis, I contracted the respiratory syncytial virus (RSV). The illness caused an exacerbation that subsequently kept me out of work for a little over three months.

When I contracted my awful and little-known disease, I was skeptical as to how my colleagues would react. Would they think I caused this disease because of smoking or some self-gratifying behavior? Are they going to look at me in pity because I am a shell of the person I used to be? You just never know.

Going back into the mix of things at my school workplace was daunting. Upon my return, I was tethered to an oxygen tank, which made things surreal since I last walked those halls relatively healthy.

I knew I would need help but didn’t expect the tremendous support I got. I have more people to thank than I can fit in this column, and there is no way to fully express my vast gratitude. I hope caregivers or friends of people with pulmonary fibrosis will read this and brainstorm about how to support those with the diagnosis.

As an instructional coach at an elementary school, I had many duties at the school administrative level. My main responsibility was to guide teachers toward effective strategies and techniques. I also worked with other school employees in things like state testing and professional development.

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

My colleagues kindly reached out to help before I’d even returned to work. My union chapter president notified my colleagues that I would need donated sick days to avoid a pay gap, and the maximum amount was donated. My principal set up a system that allowed me to work from home for a short time, eliminating the need to use valuable sick days. Another colleague ordered bracelets from the Pulmonary Fibrosis Foundation for all the staff members to signify unity.

While homebound and recovering from RSV, many colleagues visited with goodies, gifts, and much-needed prayers. One visit especially stood out: A co-worker felt compelled to come to my house and pray for me and another colleague joined her. They asked permission to pray over me, then the first co-worker got down on her knees and took my hand. The prayers, done mostly in Spanish, lasted over 20 minutes. They were emotional and heartwarming for me. It was surreal. How could someone who didn’t know me well care so much about me?

Upon my return to work, I required an electric scooter to get around. The custodian and his assistant reserved the first spot nearest the entrance for me. Every day, either one or both of them would meet me at my truck with my scooter and help me get situated with my oxygen. They made sure I had enough oxygen tanks for the day — each lasted 90 to 130 minutes — and then they took the tanks from the back of my truck and placed them in their custodial area holding racks. Looking back, I can’t imagine a way I could have even attempted to go back to work without these two gentlemen taking care of me.

At work, it seemed like everyone was genuinely concerned about my well-being. Co-workers constantly flowed into my office to check up on my condition. They also would check the oxygen level in my tank; if close to empty, they lovingly scolded me. My co-workers’ compassion and empathy will never be forgotten.

My wife and I are forever grateful to my co-workers for their assistance in my time of need. I hope everyone going through an awful illness can return to work with the assistance necessary to function on the job. The little things count!

Please share your workplace experiences. How have people helped you? What do you want your co-workers to know about how to best assist you?

***

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.