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00:00:00:00 - 00:00:23:20
Bel Kambach
The one thing that I would tell you is the same thing I tell my students: The only stupid question is that one not asked, especially when your whole life depends on it, and you have a family that you want to be around for. PBC specialists understand a lot more than you would think, and they can be very helpful in terms of medical treatments.
00:00:24:00 - 00:00:45:19
Bel Kambach
At the beginning of your diagnosis, chances are there are not going to be many choices, and you need to be very straightforward. And the first thing I think that you should ask is what choices of treatments are most suitable for you and why. You need to do a lot of research on your own. I would say Google the hospital, their department.
00:00:45:21 - 00:01:11:14
Bel Kambach
That’s the first thing that I did. Then I went and found out who were the top researchers in the field. They invited me to a liver conference, and there, I learned more than I would have researched in five years. The liver conferences are fantastic, and it doesn’t matter whether they’re for doctors or patients. There, I learned all the latest treatments available, and those were the only treatments that helped me a lot.
00:01:11:16 - 00:01:40:24
Bel Kambach
But you want to make sure you’re responding to treatment. Ask the hepatologist. Is there any other treatment that’s available that would work for me? PBC is not a death sentence. Read a lot and prepare yourself. Don’t take no for an answer. My name is Bel Kambach, and I’m a member of myPBCteam.
Primary biliary cholangitis is a chronic disease that you need to treat to reduce the chances of long-term liver damage. There are several mainstay treatments for PBC. Your hepatologist (liver specialist) will work with you to determine the best treatment plan for your specific case and symptoms of PBC.
In this video, Bel Kambach talks about her experience with treatment for PBC. She encourages open communication with your doctor about your goals for treatment. You should feel empowered to ask questions and speak honestly about your symptoms and how they’re affecting your life.
“The only stupid question is that one not asked, especially when your whole life depends on it and you have a family that you want to be around for,” Bel said.
When starting treatment for PBC, Bel asked her PBC specialist loads of questions. Here are some suggestions from Bel and additional questions to ask your hepatologist when discussing your treatment plan:
Write down your questions on a piece of paper or in a note on your phone before your medical appointments. That way, you won’t forget everything you intended to ask once you’re in the actual appointment. It might also help to bring a trusted friend or family member to your medical appointments for support and to help remind you of important questions you want to ask.
Since she’s an educator and researcher by trade, Bel chose to do a lot of research about PBC on her own — in addition to following guidance from her health care professionals. She searched online for information about PBC treatments from reputable sources and used that information to help craft the questions she posed to her doctors. She even attended liver conferences to learn more about PBC and available treatments.
Doing some research on PBC treatments may help you to feel more involved in your care, but it shouldn’t take the place of recommendations from your PBC specialist.
When looking for a doctor to treat your PBC, you may want to do some research on highly rated hepatologists near you, particularly those who specialize in PBC. This may be difficult, since PBC is a rare condition. Working with a doctor with experience treating people with PBC may help you to feel more confident in their treatment recommendations.
In addition to taking an active role in your PBC treatment journey, it can help to know you’re not alone. 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.
Have you started treatment for PBC? What has the process of determining your PBC treatment plan been like? Share your experience in the comments below, or start a conversation by posting on your Activities page.
More Videos
As an educator, geographer, and explorer, Bel Kambach was focused on working toward tenure and raising her young daughter when she was diagnosed with PBC.
Like many people with primary biliary cholangitis, Bel Kambach found that the journey to getting a PBC diagnosis didn’t take a straight path.
Elizabeth Wartella, M.P.H.
is an 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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There are no hematologist near me. The closest is approximately 2 hours away. The GI doctors don't seem to really know or care
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