Celebrating Chronic Disease Month

One morning in November 2021, American Liver Foundation (ALF) patient advocate, Jessie Boyd, woke up sick to her stomach. Initially, she thought it was a simple case of food poisoning, but instead, something much more sinister was going on inside her body. Jessie, an elementary school physical education teacher, lived an active lifestyle, was an avid hiker and had never experienced any major health issues before, but as her health continued to decline over the next few days and her stomach started to bloat, her mom, Debbie, and boyfriend Justin, strongly encouraged her to visit the emergency room. A scan of Jessie’s abdomen found a hole in her intestine which, left untreated, could cause sepsis or death. She immediately underwent emergency surgery.

While in surgery, doctors discovered Jessie’s liver was cirrhotic, or severely scarred, but why? Jessie said, “They ran what seemed like a million tests and after a week, diagnosed me with Budd-Chiari Syndrome, a rare, chronic liver disease which causes the portal veins in the liver to become narrow and blocked. They told me that I had been born with it and that the hole in my intestine is most likely what triggered it. Either way, I was told I would need a liver transplant to survive.”

Fast Facts About Budd-Chiari Syndrome

• Budd-Chiari Syndrome affects approximately one in 100,000 people
• It is usually a chronic or long-term condition, but can be sudden, or acute
• Budd-Chiari Syndrome affects men and women equally and is usually diagnosed between 20 and 40 years of age.

Despite now knowing what they were dealing with, Jessie’s health had deteriorated so much that it was determined she was too sick to survive surgery and therefore, denied a lifesaving liver transplant. Jessie was in such a dire condition that she fell in and out of consciousness making it completely impossible for her to self-advocate. With just days left to live, Jessie’s family sprang into action. Jessie said, “My mom and Justin refused to accept no for an answer and fought with everything they had for me. Mom and Justin just kept telling anyone who could listen that you have to do something; there must be something you can do.” Jessie’s stepfather, Randy, even asked a family friend and a clergyman to give Jessie a blessing while in the hospital, knowing that her only chance of receiving a liver transplant was to somehow, miraculously, improve her health. Shortly after receiving her blessing, Debbie and Justin convinced Jessie’s doctors to send her case to a major transplant center in the area for review, and her health began to improve. A few days later, she got word from the transplant center that she had been accepted as a liver transplant patient and would be medically transported there shortly. On the day of transport, Jessie said, “My mom, Randy and Justin were all there and it is in this moment, I felt God. I felt the sun. I felt love. It’s very hard to express how truly divine and beautiful this moment was to me.”

Jessie went through all the necessary tests and evaluations to determine if she was a good candidate for liver transplantation. On Christmas Eve 2021, Jessie was taken into surgery and by 3:30am on Christmas morning, she had received the best Christmas gift of all – the gift of life, a true Christmas miracle. Jessie’s recovery was long, and the disease took an immense toll on her body. She lost over 50 pounds, suffered severe muscle loss and in the beginning, relied on Justin for everything. Jessie said, whenever I knew something was going to hurt, such as changing my wound vac, I would ask Justin to blast the Country music band, Midland, on his phone so I could drown out the pain. He even did this for me one time when they removed over 50 staples – Midland is a big part of my journey.” Jessie worked hard on her recovery and within a few months had transitioned from a wheelchair to a walker until eventually she was walking on her own again. She was determined to get back to hiking and being active with friends and family. In July 2022, Jessie returned to work full-time and on Christmas Day 2022, exactly one year after receiving the gift of life, Jessie completed her first hike post-transplant.

July is Chronic Disease Month, and we celebrate all the patients, families, caregivers and friends affected by chronic liver disease. Thank you, Jessie and family, for sharing your story and for raising awareness around liver health and how important it is to listen to your body. For more information about liver disease, health and wellness visit liverfoundation.org.