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00:00:00:00 - 00:00:28:19
Cecilia
I wish someone had told me that when you live with PBC, it feels like your life is going to be turned upside down, but if you just stop and you listen to your body and you take care of yourself, and you honor the fatigue, and you honor the pain and the itching, instead of trying to push it away, you can absolutely live a fulfilling life and continue to remain to be active.
00:00:28:21 - 00:00:47:05
Cecilia
A typical day for me when I am not working is waking up immediately going for a walk, because I feel like that really energizes me. It clears my head, but it also gives me that motivation to keep going. I find that if I sit on the couch and enjoy my coffee, I'm not going to get up because that fatigue is really bone crushing.
00:00:47:07 - 00:01:16:21
Cecilia
From there, I will do my household chores if I can. If I'm not having pain, I will do day-to-day mom stuff, laundry, dishes, and then picking up the girls from school. On days where I work, I actually have to give myself more time in the mornings. Go on that walk. I start work late, so I start about ten or eleven, depending on the day, and I have to be home by six because if I'm not, the fatigue can sometimes get to the point where I can't drive home, and my husband has to come pick me up from work.
00:01:17:02 - 00:01:34:15
Cecilia
So I've learned to really just listen to my body. My family has been really supportive and if I do need help or the fatigue gets too bad, my husband's always a phone call away. On days when I have the severe itching on the bottom of my feet, I have learned that I am not going to wear socks and shoes that day.
00:01:34:17 - 00:01:57:03
Cecilia
What I found with the itching is ice or using something that has acupressure points. I've been on this journey since 2021, and I think the biggest take home for me for other patients who have been diagnosed with PBC, or maybe are at the beginning of their journey is don't give up. Always, always keep writing, and using your voice and connect.
00:01:57:04 - 00:02:06:21
Cecilia
Make connections because you're not alone. We're out there and we want to help.
A primary biliary cholangitis (PBC) diagnosis can be life-changing. But it doesn’t have to feel that way. This is the sentiment of Cecilia Dueñas, who, in this video, talks about her life with PBC and how she made adjustments to manage her disease without sacrificing the daily activities she loves.
Dueñas highlights the need to listen to your body and honor your feelings — to rest when dealing with fatigue and to use tools like ice and acupressure when dealing with severe itchiness. “You can absolutely live a fulfilling life and continue and remain to be active,” she encouraged.
Your PBC symptoms, their severity, and how they affect your daily life might look different compared to others with PBC. PBC can cause various symptoms, including fatigue, jaundice (yellowing of the skin and whites of the eyes), and pain. In addition to physical symptoms, mental health effects of living with PBC like stress and anxiety can impact your quality of life.
As PBC progresses it can cause serious damage to the liver, resulting in complications like cirrhosis (liver scarring), an enlarged spleen, vitamin deficiencies, osteoporosis (weak bones), and decreased mental functioning.
Working closely with your hepatologist (liver specialist) is one of the best ways to effectively treat your PBC and manage its impact on your daily life. In this video, Dueñas discusses several tips to incorporate into your life while living with PBC and managing your symptoms:
Your daily life with PBC doesn’t have to look very different from your daily life before a PBC diagnosis. Work with your PBC specialist to find the right treatments to best manage your symptoms. Ask them for tips and recommendations to better manage your symptoms at home. If you’re feeling mental health effects, tell your PBC specialist. They can connect you with the right resources to help improve your quality of life.
On myPBCteam, the social network for people with PBC and their loved ones, members come together to ask questions, give advice, and share their stories with others who understand life with PBC.
Do you live with PBC? How has it affected your daily life? Share your experience in the comments below, or start a conversation by posting on your Activities page.
More Videos
After a disappointing encounter with a hepatologist, Cecilia decided to research specialists to find one who would fit her needs. She focused on hepatologists who specialized in PBC and had experience treating an ethnically diverse population.
Cecilia highlights the importance of having a trusting relationship with your PBC specialist and talks about how she approached a change in treatment when her current PBC treatment stopped working.
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Elizabeth Wartella, M.P.H.
is an Associate Editor at MyHealthTeam. She holds a Master's in Public Health from Columbia University and is passionate about spreading accurate, evidence-based health information.
Learn more about her here.
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