For Lori Garcia, a mother and grandmother from San Marcos, Texas, the long journey to being diagnosed with primary biliary cholangitis (PBC) required patience. Now Lori works to raise awareness about PBC while also focusing on managing her own medical care.

Searching for Answers

Lori’s symptoms began long before she received the correct diagnosis. For nearly two years, she sought answers from various health care providers who attributed her problems to a different liver condition. “I saw three different doctors who all kept telling me that I was diagnosed with fatty liver,” Lori explained.

However, her symptoms persisted. After Lori underwent a colectomy (surgery to remove all or part of the colon), her laboratory results showed worsening numbers, indicating that something else was wrong with her liver. Finally, after her primary care provider (PCP) partnered with a third gastroenterologist, Lori received the correct diagnosis: primary biliary cholangitis, a chronic autoimmune condition that damages the liver’s bile ducts (slender tubes that carry bile — digestive fluid — to other organs).

“The journey was long and hard,” Lori said. “It took almost two years and one major emergency surgery to get the right diagnosis. My PCP and the third doctor finally ran the right tests to figure it out.”

PBC can be hard to diagnose because many people don’t have noticeable symptoms. Some of the early symptoms, such as fatigue and itchiness, commonly occur with other medical conditions, too, making diagnosis tricky. Like Lori, some people with PBC may find that the journey to a diagnosis is lengthy.

Lori was relieved to finally have answers, but she also needed to adjust to a new reality of managing a lifelong condition.

Building a Trusted Medical Team

Finding the right medical team was an important but challenging step for Lori. At first, she didn’t feel heard or supported by her gastroenterologist. However, Lori found an ally in her PCP, who continued to advocate for her and push for more testing.

Eventually, Lori connected with a gastroenterologist who listened to her concerns and worked to confirm the diagnosis. The third gastroenterologist “took the time to listen to all of my symptoms and ran the appropriate tests,” Lori said.

This collaborative approach helped Lori feel more confident in her care, and she developed a trusting relationship with her providers. Lori’s journey also shows the importance of advocating for yourself and voicing your concerns or questions to your health care team. If you feel that you need more from your health care team, let them know. You might also have to meet with different providers until you find the right one for you.

Educating Herself and Making Lifestyle Changes

Once diagnosed, Lori took an active role in learning about her condition. She joined a PBC support community to connect with others living with the disease. She also sought information from her medical team. “I asked a lot of questions of my provider,” she said.

Lori also made some lifestyle changes to help manage her symptoms. One of her most challenging symptoms is itching, a common issue for people with PBC. To address it, she learned ways to better manage the itchiness.

Healthy eating became an important focus, and Lori began following a Mediterranean diet, which emphasizes whole foods like fruits, vegetables, and healthy fats.

Lori prioritized her mental health as well as her physical health. She learned to recognize when to rest and found strategies to manage anxiety.

Finding Support From Family

Lori credits her family with being a consistent source of encouragement throughout her journey to diagnosis and adjustment to life with PBC. “My family has been extremely supportive,” she said. They “go out of their way to make sure I’m doing great.”

Sharing Her Story

Lori’s experience in navigating the health care system and facing delays in her diagnosis inspired her to share her story. As someone who works in health care, Lori is particularly aware of potential barriers to getting the right care.

“I believe a lot of people are misdiagnosed or not diagnosed appropriately,” she said, reflecting on her experience. By sharing her story and connecting with others who have PBC, Lori hopes to help inspire others to push for the answers they deserve.

If she could give one piece of advice to someone newly diagnosed with PBC, it would be to “not lose hope,” Lori said. “The outcome is not as bleak as it seems, and there is so much support out there.”

Moving Forward With PBC

Today, Lori continues to focus on her health while staying connected with the PBC community. In addition to managing PBC, she lives with several other autoimmune conditions and health anxiety, making balance and self-care an essential part of her daily life.

Lori’s story highlights the importance of persistence in finding the right diagnosis and the value of a supportive medical team and family. By sharing her experiences, she hopes to make the path a little easier for others facing similar challenges.

Connect With Others Who Understand

On myPBCteam, the social network for people with primary biliary cholangitis and their loved ones, more than 1,700 members come together to ask questions, give advice, and share their stories with others who understand life with primary biliary cholangitis.

Have you been diagnosed with PBC and relate to Lori’s story? What changes have you made to help manage your symptoms? Share your thoughts in the comments below, or start a conversation by posting on your Activities page.