The correct way to talk about lung transplantation in relation to pulmonary fibrosis is to call it a “treatment.” I learned this early in my caregiving journey through a combination of education from my mom’s medical team and a few not-so-gentle comments from strangers when, in…
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As parts of the world begin to partially open up again amid the COVID-19 pandemic, I can’t help but feel fearful and anxious. Those of us with chronic respiratory illnesses like idiopathic pulmonary fibrosis (IPF) must regularly take precautions to avoid getting sick throughout the entire year. However, the…
I have always advocated for good mental health and promoted the importance of self-care. I preach regularly about this to friends, family, colleagues, and other patients with idiopathic pulmonary fibrosis (IPF). Since being diagnosed with this life-threatening lung disease, my physical health has been a priority. I do…
As I sat in my mom’s hospital room on the day of her long-awaited discharge, I felt like we were bringing home a very fragile adult baby. Her body had been through a series of assaults starting with an acute exacerbation of IPF and ending with a double-lung transplant.
As I continue to recover from an acute health setback I wrote about earlier this month, I’ve been seeking ways to prioritize and improve my mental health. While I’m not completely alone, it has been tough to remain indoors and away from the many people I love, especially as…
There is a phenomenon in psychology known as “lost possible selves.” Possible selves are the heroes in our life story that we create within our inner narrative. They are made from goals and wants, fears and risks. They represent the infinite possibilities, expectations, and desires for our lives.
I write a lot about the importance of person-first language and illuminating the identities that make me who I am. I often point out that my diagnosis of idiopathic pulmonary fibrosis (IPF) is just one part of me. In narrative therapy, we call these our preferred identities, a…
A Yiddish proverb states, “When a father gives to his son, both laugh; when a son gives to his father, both cry.” This is true when giving gifts of time, energy, and love, as in caregiving. A parent caring for a child is an act of…
Many Pulmonary Fibrosis News readers know that during the last few months, I have had several acute illnesses. As a patient living with idiopathic pulmonary fibrosis (IPF), a life-threatening lung disease, I ended up quite sick as a result. Since mid-November, I have been recovering from pneumonia, influenza A, strep…
Last week I wrote a column about energy expenditures and how I choose where to invest my energy in the multiple tasks vying for my attention. Unfortunately, since being diagnosed with idiopathic pulmonary fibrosis (IPF) four years ago, I just can’t give everything the energy I’d like. As a…
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