Learning to cope with a chronic illness is an ongoing process — and never easy. My entire world was flipped upside down when I was diagnosed with idiopathic pulmonary fibrosis (IPF) in April 2016. I didn’t know anything about interstitial lung diseases and felt bitter that I had to…
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I’ve spent a lot of time reflecting these last few weeks. I don’t know why — I haven’t hit any special milestones such as a birthday or diagnosis anniversary. But I’ve been thinking about the adversity I’ve faced since my diagnosis with idiopathic pulmonary fibrosis (IPF) as…
I don’t have children yet, but like most people, I learned nearly everything I know about parenting from my parents. I grew up watching them and learning from them. I have taken note of their good strategies and of the things I might do differently with my kids. My husband…
As a condition of being placed on a lung transplant list, I had to show that I had social support. My wife was my main caregiver, but she would need a break now and then. Fortunately, several friends offered to help with caregiving duties. However, our need for…
Goal setting is an essential part of a balanced life. Regardless of whether the goals are related to fitness, finances, or learning a new skill, having targets gives you something to work toward and opportunities for improvement. I recently read a post titled, “8 Benefits of Goal Setting,” and…
Have you ever been in a position in which you wanted to disclose something but were worried about how it would be perceived? Were you concerned that you’d be treated differently as a result of the disclosure? Unfortunately, I’ve been in this position recently, as I continue to navigate the…
I recently spoke to Dr. Heidi Engel, the physical therapist who directed my mom’s pulmonary rehabilitation while she was in the ICU at the University of California, San Francisco. We discussed ICU relationships and how providers can better support family members who are experiencing the trauma of having…
I was diagnosed with a fatal lung disease called idiopathic pulmonary fibrosis (IPF) three years ago. Since then, my life has been full of ups and downs — most of which my peers, who are other young adults, cannot relate to as a result of living a healthy life.
When someone you love is in a critical care unit, your life changes dramatically. If you choose to be present with them in the ICU, your world shrinks to about 100 square feet. It can be easy to lose track of time, other responsibilities, and even your sense of…
Chronic illnesses inevitably cause physical changes in a person’s body. These alterations include scars from surgery, procedures, and the placement of a medical device such as a port-a-cath or a peripherally-inserted central catheter, or PICC line. Since being diagnosed with idiopathic pulmonary fibrosis (IPF), I’ve experienced many physical changes…
