City/State/Country: Radford, VA, USA

Disease(s) of Loved One: Cirrhosis (2012 – Present)

I first heard the word “cirrhosis” in March of 2012. At the time, my husband was battling sepsis – going into septic shock, being ventilated, and staying in the ICU for over a week. As doctors searched for the cause of his infection, they determined he had cirrhosis. My husband was uninsured, but thankfully his medical costs were covered by the Catholic hospital where he was being treated. With the help of a support group, I quickly learned about cirrhosis within 60 days of my husband’s diagnosis. Caregiving is a 24 hour job: I schedule my husband’s doctor’s appointments, accompany him to his doctor’s visits, and cook healthy meals for him. Without insurance, my husband remained at home during his bout of hepatic encephalopathy, and I stayed awake for four days to ensure he didn’t get out of his bed unknowingly. But, as a caregiver, you can’t love the patient enough to make them want to live. If they don’t want to fight, that’s when, as a caregiver, you feel defeated. Luckily, my husband fought to live despite how challenging the journey has been. 

Almost a decade ago, I began leading online cirrhosis support groups. People need compassion, empathy, and hope – all of which I try to give to patients and caregivers whom I’ve met through Facebook groups. As someone who’s always been the “quiet one”, I’ve learned to find my own voice through my work in advocacy. Equally important, allowing others’ voices to be heard will help those going through a similar journey because we can learn a lot from each other’s stories. 

Since my husband’s cirrhosis diagnosis, we’ve both been more conscious of our health – cooking with fresh ingredients, using less salt in our food, and eliminating high fructose corn syrup in our diet. With the rising cases of NASH and NAFLD, which are risk factors for liver cancer, I wish more people would realize that there are so many answers to maintaining one’s health other than just another prescription. Nutrition is perhaps the best medicine we can have, and I am determined to promote healthy eating within and beyond the liver health community.