user icon

Staci D., KY

My mother passed away of idiopathic pulmonary fibrosis a few days ago. She had it for a few years, but was misdiagnosed. If only I had gotten involved in her care sooner, maybe I could have helped.

She was told her rheumatoid arthritis had spread to her thorax and ribs, deforming the bone, and was causing it to press against her lungs. She wasn't able to get a good, deep breath. She was put on oxygen. I never thought anything more about it. It caught up with her all of a sudden. She could not get out and go to church, or anywhere. She did not have the lung capacity. She could barely make it to the bathroom and back. I took her to the ER a couple of times throughout. She was given a shot of Lasix for fluid on her lungs. Not long after, she was admitted for two weeks in the hospital because she could not move an inch. She could not breathe.

She got better in the hospital. Things looked hopeful. She was sent to rehabilitation where things were promising the first week. I was so relieved. However, the second week didn't go so well. Her recovery time got longer and longer after exercise, as she struggled to get her oxygen back up to a healthy level. She was admitted back into the hospital. She was told she was going to die, and hospice was suggested. After discharge, she didn't even make it a week.

I watched her die a horrible death. Not that COPD and asthma aren't important illnesses, I have asthma, but there are medications that can reduce the inflammation and improve symptoms. With pulmonary fibrosis, there is nothing you can take for scaring, hardening of the lungs. I see where you can take medication to stop progression, but not reverse. I want to step in and be an advocate for this illness. I want to help other people. Maybe I can save a life. 

First Published: October 10, 2019

Asthma Educator Institute
Chicago, IL | Jun 06, 2023
Asthma Basics Workshop
, | Jul 21, 2023