From the Perspective of Patients and Caregivers

From the Perspective of Patients and Caregivers

Patient stories on experiences and life with interstitial lung diseases.

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Embracing the Uncertainty, Embracing One Another

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Oct 07, 2019
For Judy Amendola, the wait for a new pair of lungs has begun. After a long struggle deciding whether or not to have a lung transplant, she realized the potential benefits of replacing her lungs, scarred by pulmonary fibrosis, outweighed the risks. Due to progression of the disease, she is now on the active transplant list, awaiting donated lungs. Fortunately, her daughter Chloe is at her side, acting as her main caregiver and support.

Trust and Trustworthiness in Clinical Care and Research

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Jun 24, 2019
The healthcare system was foreign to me until I entered into my 30s. I had periodic visits for checkups and minor indications, always with an eagerness to keep the visits as short as possible. The encounters were not memorable, perhaps appropriately so. I believed that while doctors knew about disease, I knew better about health and wellness. Things have changed over the past 10 years.

Lung Transplant Evaluation

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Apr 01, 2019
After being diagnosed with idiopathic pulmonary fibrosis, Judy Amendola learned that the average time of survival was three to five years. But, luckily, she’s beaten the odds. “I happen to have a longer trajectory and have surpassed the five years,” she says. “But things are coming to a head.”
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