Ways to celebrate — yes! — life with a rare disease
My mom, Holly, was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2018. An acute exacerbation booked her a one-way ticket to the intensive care unit for a four-month wait for new lungs.
Courage to Care — Christie Patient
In 2019 Christie Patient relocated to San Francisco to care for her mother, Holly, before and after her double-lung transplant. Holly’s idiopathic pulmonary fibrosis diagnosis came only months before an acute exacerbation that led to a four-month stay in the intensive care unit, and her eventual transplant. Years later Christie is still writing about the experience, in hopes that her family’s story will connect readers to all the beautiful and terrible parts of the transplant journey. Holly has returned to her home in the Sierra Nevada mountains, and Christie currently resides in Hawaii with her husband, Jonny, and their two four-legged friends.
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Reflections on my mom’s 5-year transplant anniversary
Five years ago today, the phone rang early in the morning. “We have lungs,” the voice on the other end announced. The first words I heard that day were months in the making.
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Healthcare literacy is the unsung hero of improved patient outcomes
As patients, it’s crucial to know our bodies and the care they need. Understanding the complex ways that a chronic condition like pulmonary fibrosis may affect us over time, as well as the…
‘Truth in transplant’: Gratitude and suffering coexist after ‘the miracle’
Amy Silverstein’s second memoir, “My Glory Was I Had Such Friends” (2017), left a lasting impression on me. It wasn’t just because of the way Silverstein’s devoted friends attended to…
When friends guide the way through the dark days of transplant
In May, my mom, Holly, told me about a memoir she’d just finished reading by Amy Silverstein, a writer who had died of cancer the previous day. Silverstein attributed her impending…
My worst nightmare: I brought COVID-19 to my mom’s house
Last April, COVID-19 took up residence in our house again — or so we thought. My husband, Jonny, had a raging set of symptoms, and I had a sore throat. Our at-home tests…
Unpacking the emotional layers of transplant: guilt, gratitude, and grief
This week, while my husband, Jonny, and I sat at home in isolation after our tests for COVID-19 were positive, I struggled to feel joy. My friend sent me a video of someone…
How pulmonary fibrosis robs people of sleep, and what to do about it
Good morning, readers. If it’s not morning when you’re reading this, let’s pretend for a moment that it is. You just rolled out of bed, made a hot, caffeinated beverage, and now you’re checking…
Accessible activities to add to your Hawaiian vacation itinerary
Whenever my family visits my husband and me here in Hawaii, I can’t help but reflect on my first trip to the islands right before my mom, Holly, was hospitalized for an acute exacerbation…
Finding Clarity, Connection, and Constellations in Dark Times
Unlike members of the band Green Day, I could happily live through an entire year of Septembers. Januarys though? Wake me up when that ends. I always find myself exhausted and burnt…
I Feel Most Human When My Heart Is Heavy
For all the time I’ve spent in my 31 years “sitting in the U-bend, thinking about death,” as Moaning Myrtle from the “Harry Potter” series says, facing the loss of a loved one hasn’t…
In a Sea of Grief, Compassionate Connection Can Be a Lifeboat
Greetings from Griefville. This column comes in three parts. Part 1: Grief is the worst Five years ago, I lost my cousin Charlie to lung cancer. He went to the emergency room with what…
