As soon as my mom, Holly, was out of the hospital following her bilateral lung transplant, our family began efforts to protect her immunocompromised body. Before she even got the call about available donor lungs, the University of California, San Francisco lung transplant team had educated my family…
The moment my parents, Diana and Jack, were in the clear two weeks after their second COVID-19 vaccine, they hopped on a plane to see their three grandchildren in Illinois. This was about a month shy of my mom’s one-year lung transplant anniversary. Their trip was everything they had…
On Aug. 14, 2020, around 10 p.m., my successful lung transplant was completed. Now I was in the daunting recovery phase. Before being discharged from the hospital, I had to meet three requirements: Walk 1,000 feet without supplemental oxygen. Walk continuously on a treadmill for 30 minutes. Have all my…
The Pulmonary Fibrosis News Forums offer a one-of-a-kind platform to learn about this life-threatening lung disease firsthand. Patients, caregivers, and professionals alike come together to discuss a plethora of topics pertaining to idiopathic pulmonary fibrosis (IPF). Many of those discussions focus on how to effectively manage the disease, and…
How do you learn to love your body while struggling with a rare illness? I used to ask myself this almost daily. I love to eat, and comfort food provides just that — comfort. Vegetables and fruits sound delicious, but they wouldn’t be the first thing I run to…
In the three weeks between my boyfriend Jonny’s proposal and our spontaneous elopement, we daydreamed about a big wedding. We decided to get married before he left for a year of training and school with the Army. Despite our legal union, we still wanted to celebrate with a ceremony of…
Excessive amounts of inflammation in the body often accompany chronic illness. For people living with idiopathic pulmonary fibrosis (IPF), a progressive and life-threatening lung disease, effectively managing inflammation is important to overall health and is a popular topic of discussion among IPF patients in our Pulmonary Fibrosis News Forums.
In February of 2016, I joined the Greater Kansas City Pulmonary Fibrosis Support Group. As I attended more meetings, I realized PF awareness was important, and I wanted to make a difference. Because I had a unique case of idiopathic pulmonary fibrosis (IPF) with ossification that excluded me from…
Throughout their lives, many people experience an array of ups and downs. Days, months, or even years can be plagued with challenges that seem unfair. Conversely, people also can experience prolonged periods when things go well. Rare disease patients who frequently experience ups and downs caused by their illness know…
My husband is retiring in a couple weeks. I’m not of retirement age, but sometimes life happens and decisions are forced upon us. (Photo by Ann Reynoso) My husband and I have quite an age gap. He is 16 years older than me, making our retirement stages uneven. While…
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