February 16, 2021

Living with PBC: A Patient’s Journey with a Rare Liver Disease

By Shivani Chinnappan, SWHR Programs Coordinator 

This post is part of SWHR’s blog series to raise awareness about liver health issues that impact women. Read our previous post about sex and gender differences in liver health.

Laurie Garza celebrated New Year’s Eve in 2003 as many people do — with good friends and a couple of Cosmos. At the age of 34, she was not expecting this celebratory evening to mark the beginning of a new stage in her life.

Garza found herself feeling sick that night and continued feeling fatigued for days afterward. “It felt like there were concrete blocks on my arms and legs. I had a dry mouth and itchy skin. I was not able to digest food well,” she said. “I knew something was wrong, but I just had no idea what it was.”

After discussing the symptoms with her health care provider, she was quickly referred to a hepatologist, a specialist in managing problems of the liver, gallbladder, bile ducts, and pancreas. Garza was diagnosed with primary biliary cholangitis (PBC) just 8 weeks after the onset of her symptoms on New Year’s Eve.

PBC is a chronic autoimmune liver disease where the body’s immune system mistakenly targets healthy cells in the bile ducts of the liver, which can lead to cholestasis, or decreased bile flow. This can cause a buildup of bile acids in the liver leading to inflammation and scarring known as fibrosis. There is no known cause for PBC and no definitive cure, although there are medications to mediate the progression of the condition.

“I got really lucky that I was sent to a specialist who was familiar with PBC and treated other patients with it,” Garza said. On average, it takes women 12 months to receive a PBC diagnosis and three years for men. About 9 in 10 people with PBC are women, which likely contributes to the greater diagnostic delay for men.

Timely diagnosis is critical because PBC is a progressive condition and will worsen over time without access to medication that slows the rate of progression. Garza was prescribed ursodiol, a therapeutic that aids in the removal of bile from the liver. “After diagnosis — probably the first five years — things were going well,” she said. “I took my meds, there was not a lot of noticeable symptoms, and I was feeling fine. There were a few minor lifestyle adjustments, but nothing extreme.”

As the years continued, however, Garza began to experience “flare-ups” in her condition, often related to stress or changes in routine. She worked with her health care team to make more medication and lifestyle changes to keep her symptoms at bay. But then, in 2018, Garza found herself in the hospital with a variceal bleed, a possible indication of cirrhosis. She began to make preparations for the possibility of a liver transplant.

Garza remains optimistic though, as she has throughout her patient journey. She credits this in part to the support she has received from her medical team. Garza stressed the importance of building trusting relationships with her team of health care providers over the years. “I know that they want me to get better, they want me to be healthy,” she said. “I’ve grateful to have found medical professionals who want we to healthy and lead a productive life.”

Garza also found an outpouring of support in her personal life. Her husband is very engaged; he attends all her appointments, can accurately understand her condition, and has also built strong relationships with her medical team. Her family and close friends are also well-versed in her condition and are there to provide support when its needed. “That makes it less overwhelming for me, knowing that I don’t have to go through this alone,” Garza said.

Having a support system is indispensable in easing the burden of managing a chronic, progressive illness like PBC. “To get a transplant you have to identify a specific group of people as your support team,” Garza explained. “People who will step in to take you to appointments, to give the primary caregiver a break, and to be actively engaged and involved.”

As patient advocate with a naturally warm disposition, Garza has learned over the years how to clearly convey the complexities of living with PBC while also countering the stigma often associated with liver diseases. “When I start talking to someone about [PBC], I don’t ever start with calling it a liver disease,” she explained. “I start with, ‘I was diagnosed with a chronic illness, the cause is unknown, and there is no cure. It’s progressive, and over time I may need a transplant. This diagnosis is not a result of any lifestyle choices — it is the way my body is made. … So even before I even talk my story, there is a non-judgmental context for the disease. It completely flips the conversation.”

To her fellow PBCers, Garza recommends figuring out how to incorporate PBC into your life, rather letting it dictate how you live. “You learn to make adjustments to continue to do those things that give you joy, as opposed to letting it stop you from living your life;” she said.

Talking to others with PBC can help with that. Garza lamented that although she was diagnosed 18 years ago, it took nearly 10 years until she was able to connect with another PBCer. Today, it has become much easier to connect with fellow PBC patients through groups like PBCers and Living with PBC, or through local organizations, which can be found on Facebook.

As Garza prepares for the time when she may need a liver transplant, she maintains her positive attitude and talks about the importance of the research taking place to improve the outlook for patients with this rare disease. “Our best way forward is more research and more treatment options,” she said.

SWHR’s blog series on women’s liver health is supported by a grant from Intercept Pharmaceuticals Inc. SWHR maintains editorial control and independence over blog content.