As I write this, I have been living with a rare disease for 1,413 days. On April 7, 2016, my life was transformed from an active young adult to a chronically ill patient when I was diagnosed with idiopathic pulmonary fibrosis (IPF). I remember how naive I was about…
Much of my young adult life was molded by my fears. I have talked about the effects in past columns, and how my mom’s hospitalization helped me find my courage. After surviving months in the ICU, a double-lung transplant, and a rocky start to her recovery, my mom is…
When thinking of chronic lung conditions, you may visualize the use of supplemental oxygen or a person struggling with physically demanding tasks, such as walking up a flight of stairs. People living with idiopathic pulmonary fibrosis (IPF) often struggle with daily tasks. As our disease progresses, our ability to exchange oxygen…
When my mom, Holly, had an acute exacerbation of her idiopathic pulmonary fibrosis, she was transported to the University of California, San Francisco (UCSF) Medical Center. She spent the first three weeks in the intensive care unit recovering enough to get on the lung transplant list. When at last…
After a lung transplant, a patient should not partake in some tasks or continue with certain behaviors. For example, I used to love to do yardwork, such as gardening and keeping my lawn in shape. But my transplant doctor recommended against it. I can’t do other activities as well, but…
Idiopathic pulmonary fibrosis (IPF) is a cruel disease. Characterized by progressive scarring in the lungs that prevents oxygenation, IPF slowly steals a patient’s ability to breathe. There is no cure for IPF, and the only approved medications to slow the development of lung fibrosis are Ofev (nintedanib) and Esbriet…
Have you ever had to persuade yourself to do something? I often negotiate with myself to complete tasks I don’t want to do by rewarding myself with something enjoyable afterward. That worked when I was in school and cramming for exams: If I just get through this last chapter, I…
As an English major with an interest in psychology, I am constantly analyzing the effect that words can have on people. Words are magical units of meaning that we can combine in infinite ways to convey ideas and thoughts. Some combinations can be healing, while others can have the…
Most of the conversations in the Pulmonary Fibrosis News Forums are about the physical and medical aspects of living with idiopathic pulmonary fibrosis (IPF). But occasionally we steer off-topic and talk about who we are as people first and patients second. We talk about our families, travel plans,…
A roadblock to your future could be any number of things. Perhaps it is a new skill necessary to advance your career or the finances needed for a big purchase. Those are normal hurdles that many have to overcome to achieve their goals. A life-threatening lung disease is an abnormal…
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