Our journey with liver disease began suddenly. Winter 2012, I was in the middle of my second year of law school, living in California with my then fiancé, now husband, Eric. Mom had been feeling under the weather since before Christmas; she had the flu which left her feeling exhausted much longer than it should have. Suddenly, one day she was feeling much worse and noticed swelling in her belly. Mom, as was true to her nature, called the doctor and drove herself to the emergency room. While Mom underwent days of testing, I remained blissfully unaware, likely driving myself crazy over Corporations or Community Property. I can’t remember exactly how things unfolded, only that my dad called to tell me Mom was in the hospital and not to get upset; my brother Matty called to assure me he had everything under control.
Mom was the one to call me and let me know “something was wrong” with her liver. It remained unclear what exactly was wrong. She had cirrhosis but they could not determine why. Eventually she was diagnosed with NASH, or non-alcoholic steatohepatitis. I learned NASH is the more advanced form of NAFLD, or nonalcoholic fatty liver disease. Her liver had stored extra fat, thought to be related to her history of high cholesterol and other factors; over time, this led to swelling, scarring, and eventual cirrhosis.
The tension and fear from those first few weeks soon turned into our new normal. I was told, in no uncertain terms, that I was to stay in California, no matter how I protested. Mom was a relatively “good patient.” She had no problems following her doctors’ orders, other than when it came to introducing a low sodium diet. Matty, who lived nearby, took on the role of food police. His was the unfortunate task of arguing with both Mom and Dad about how much salt was in the groceries they purchased. Otherwise, things stayed relatively stable.
My dad had died, suddenly, in September 2015. Losing Dad took a toll on all of us, but Mom had lost her best friend and partner of nearly 50 years. About six months later, in April, Mom’s health took a sudden turn when we had our first terrifying experience with Hepatic Encephalopathy (HE). HE occurs when toxins, like ammonia, are not correctly flushed out of the blood because the liver is not filtering properly; all of those toxins then back-up and begin to poison the brain, leading to personality or mood changes, mental confusion (similar to dementia, we called it “brain fog”), increasing fatigue, shakiness, and possible coma.
Mom was always a natural caregiver. She loved to do things for others and felt most accomplished when she could help someone else, though she often remarked she helped others in “small ways.” Looking back, we marvel at all Mom continued to do despite what liver disease was doing to her body, how exhausted and weak she felt for longer than we ever realized. I watched Mom care for Dad after a work injury damaged his spine and made it hard for him to walk. She reveled in caring for her first grandchild, the light of her life, Torin. Even her career allowed her to care for others: first comforting patients as a medical assistant and later working as a patient coordinator in a breast cancer center.
Mom’s liver disease worsened. Her cirrhosis shifted from being compensated to decompensated. This meant her quality of life began to decline rapidly with every new awful symptom. We began searching for ways her symptoms could be controlled so we could get her back to her life. She frequently told us she was far too stubborn to let liver disease control her life. Mom was eager to get back to living, spending time with her family—her grandchildren, me, my brother, our spouses, her siblings, her nieces and nephews. In October, 2016 we started attending education programming hosted by the American Liver Foundation. We got connected to a runner on the American Liver Foundation’s Run for Research Boston Marathon® team. We found answers and support.
Then, on November 2, 2016, Mom got the call from the Transplant Institute at Beth Israel Deaconess Medical Center. She was officially listed for a liver transplant. Even still, Mom’s MELD score (Model for End-stage Liver Disease) was low. The MELD score determines the organization of the transplant list. It is based on blood work and assesses the severity of chronic liver disease. Scores range from 7 to 40 (40 being very sick); in New England, the average score at the time of transplant is a 33. We were encouraged to think about live liver transplant instead of waiting on the list for fear a liver might not come in time.
One of Mom’s nephew, my cousin, immediately volunteered to be evaluated as a living donor. After what seemed like endless testing, he was approved to be a donor, and surgery was scheduled for February 21, 2017. Mom joked that she most looked forward to an end to the “damn itching,” a common and very bothersome symptom of liver disease. But in her more serious moments, Mom was always most concerned about her nephew undergoing surgery.
After more than 12 hours in surgery, both my cousin and Mom were doing well. But, over the next 8 months, Mom experienced almost every complication in the book and one or two that, at the time, weren’t. For 8 months Mom battled back from complication after complication, with some frustration and disappointment but with a whole lot of determination and strength. We had bad, scary days. But we also had trips outside and visits from Torin and Fiona (Mom’s favorite) and countless other family and friends. We even had a week where Mom got to wear a tiara and beaded necklace and practice her Queen Elizabeth wave, followed by knighting some of the unit staff. Our motto was one we had gotten from Dad, FIGHT ON. For 8 months, Mom fought on, with the team at BIDMC and my family, by her side.
And though we fought, long and hard, Mom passed away October 31, 2017 when her body could not fight anymore. But we continue to fight, for her and the many others, like her, who fought but couldn’t win. We fight against liver disease.
Our first Liver Life Walk was in June 2017 when Mom was still in the hospital, fighting. She had our team picture at her bedside and couldn’t wait to be our team captain the following year. We walk for Mom. We walk to remember her, her battle against live
r disease, and the life she didn’t get to live. We walk for Mom and those like her who missed out on their happy ending. From 2016 to 2017, liver disease and cirrhosis rose from the 12th to the 11th leading cause of death in the United States. We will continue to walk, whether in person, virtually, or with an appropriate 6 feet of social distance between us, for Mom, for the others who lost their lives, and for those who still fight