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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…

During the evaluation process for a lung transplant, the patient’s attention is drawn to a number of conditions. Most of these refer to the things you cannot do; you don’t hear much about what you can do. Being listed for a lung transplant is not a right, it’s a…

Following my diagnosis of idiopathic pulmonary fibrosis (IPF), I took some time to research the available information to learn about my disease. Despite discovering a lot of useful material from brochures, online sources, and support networks, I’ve found that connecting with other patients has helped me the most since my…

The day after my mom, Holly, got on the transplant list, the doctor who had delivered the news said, “You’re at the top of the list. If we got lungs for you today, would you be ready?” It was scary to consider what stood between my mom and…

Being diagnosed with a life-threatening illness and learning to live with it is not for the faint of heart. There is an abundance of emotions that accompanies a diagnosis plagued by a grim prognosis and no cure. No one can prepare you for how it feels to hear the words,…

Even before I was officially diagnosed with idiopathic pulmonary fibrosis (IPF), I could feel my health declining and my enthusiasm to complete yardwork diminishing. I always took great pride in my meticulously landscaped yard. When I moved into my wife’s house, I immediately tore up the yard, planted new…