The Shocking Diagnosis that Fueled a Lifelong Mission
Evelyn Rivera, American Liver Foundation (ALF) Advocacy Ambassador and two-time liver transplant recipient, is a proud multi-generational New Mexican, a state she loves not just for its culture, but for its beautiful mountains, winding rivers, blue skies and bright sunshine.
In 1995, while raising a family of her own, Evelyn decided to participate in a blood drive at her daughter’s elementary school. The age-old saying, “no good deed goes unpunished” rang true when Evelyn received a letter from the blood bank letting her know that she tested positive for hepatitis C (HCV), and could no longer give blood. Evelyn said, “I was in shock and had no idea how I had contracted HCV. There was little information about HCV, but I knew that the few treatment options available carried very low success rates and horrible side effects, so I chose to wait, in hopes of a better treatment option in the future. My doctor agreed, and we closely monitored my liver enzymes and performed routine liver biopsies every five years.”
Chasing a Cure Across State Lines
Evelyn went back to life as usual with no symptoms of HCV until a routine CT scan, nearly fifteen years after her initial diagnosis, revealed liver cancer and cirrhosis of the liver. Evelyn said, “I was once again in complete shock and despite feeling totally fine, my doctor told me I would need a lifesaving liver transplant. Since the liver transplant center in our area had been closed, I was referred to a transplant center in Colorado for evaluation and commuted there regularly for cancer treatments.”
Liver disease is rising at an alarming rate in the U.S., and many medical professionals, hospitals and primary care providers are unequipped to identify, treat and prevent it. Furthermore, access to liver health specialists in rural areas can be challenging, making it difficult for individuals to seek the help they need to prevent, treat and/or reverse their condition. Evelyn said “I received my first lifesaving liver transplant on July 26, 2011. Unfortunately, ongoing complications required me to undergo a second liver transplant surgery in 2015. That transplant was successful, and I am grateful for the care I received; however, I know many people like me, from underserved minority and rural populations, do not have the ability to pick up and leave for medical treatment, like I did.”
Raising Hope for Minority Populations
Once recovered from her second liver transplant, Evelyn wanted to do more to help bridge healthcare gaps in her area. Evelyn said, “In the 90’s, there was very little information about organ donation online. I joined a small local organ transplant support group, but I felt like there needed to be more support and resources for people in our area. After my second transplant and seeing the immense gap in health equity first-hand, I decided to go back to school to earn my bachelor’s degree in social work to help others navigate their liver transplant journey. My goal is to raise awareness of liver disease, increase access to routine testing and advocate for better access to liver healthcare in New Mexico. ALF allows me to interact with other liver recipients and advocate for liver healthcare at the national level.”
August is National Minority Donor Awareness Month, and we thank volunteers and advocates like Evelyn for helping ALF break down barriers to transplantation and ensure that all liver patients have access to a life-saving liver transplant. ALF offers a wide variety of resources for patients and families seeking information on transplant including, a comprehensive list of transplant centers across the country, our living donor liver transplant information center complete with a toolkit and a five-part animated video series to help patients and families easily understand the steps they can take to find a living liver donor in their greatest time of need. ALF also provides transplant patients with several virtual support options including ALF’s newly launched Sharing the Journey, an ALF Support Network for Liver Transplant Recipients and Caring Connections—an ALF peer to peer support program, created to help those living with, or caring for, someone with any type of liver disease, including transplant, connect with others facing the same challenges.
Together, we can change the face of liver disease. For more information about ALF or to become an advocate today, visit liverfoundation.org/advocacy.
Last updated on August 2nd, 2024 at 11:49 am