After being diagnosed with a life-threatening lung disease like idiopathic pulmonary fibrosis (IPF), many patients reluctantly accept that their life span will be shortened. Even if we’re lucky enough to receive a lung transplant, it isn’t a cure, and it essentially swaps the management of one chronic illness for another.
My mom, Diana, long hoped to outlive both her mother and grandmother. She accomplished that goal some years ago, and thanks to her single-lung transplant last May, she sets a new record every day. Still, everything feels fleeting. Over…
Next month is the five-year anniversary of when I first heard the words “idiopathic pulmonary fibrosis.” I was diagnosed by a pulmonologist at a local respiratory care center, where I’d finally been referred after 13 months of dealing with persistent shortness of breath, dry cough, and fatigue. I try…
I have mixed feelings about getting the COVID-19 vaccine. It’s not what you might expect, though. I am not conflicted about whether I should get it. I am not afraid or suspicious of it. I don’t think the vaccine’s fast creation makes it unreliable or unpredictable — merely unprecedented.
Spending a month in San Francisco is a good way to get out of your head. Some people come to the mountains, where I live, to clear their minds. I like to go where the action is in the city to fill my head with things besides my…
Last Saturday, Bionews, the parent company of this website, celebrated Rare Disease Day with a virtual event. We planned the event for about 300 participants from the rare disease community who would get together and discuss mental health and chronic illness. They included patients, caregivers, researchers, and…
I have a problem with inertia. The forces that get my engine firing seem to start late, work slowly, and then combust and burn all at once. It’s a long fuse to a full gas tank. Forget the spark plugs and the carburetor. Whether it is…
We talk a lot about the importance of finding and maintaining hope in the rare disease community. While I agree this is important, I also want to acknowledge it isn’t always easy while living with idiopathic pulmonary fibrosis (IPF), a rare and life-threatening lung disease that eventually steals your ability…
I don’t know if humans will recover from this pandemic: the lack of touch, the resocializing to keep our distance, the physical isolation. I have dreams where I’m in groups of happy people touching … and those dreams are actually nightmares. My mom is a hugger.
Since the start of the pandemic, levels of stress, frustration, and confusion have risen to troubling levels. It seems that many of us also are experiencing more concern over new, rapidly spreading coronavirus variants. When I first heard about the variants, I broke down and cried. I felt defeated…
Get regular updates to your inbox.
