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Bel Kambach
My symptoms started in the summer of 2009. I had a very active lifestyle. I’m a geographer and a lecturer on world cruises. I was the picture of health. I had traveled to 104 countries, carrying along beside me a toddler. It started with extreme fatigue and an irrational itch, an itch that started in my feet. I was not so concerned about tiredness.
00:00:32:15 - 00:00:56:19
Bel Kambach
I just thought I overworked, like many of us; however, the itch was unbearable. You can’t even sleep with it. So immediately I went for a dermatologist. Dermatologist says, “We need a blood test because it’s not your skin.” The blood test showed very high liver numbers. So they immediately said, “We have to send you to a hepatologist. We need to start you on steroids.”
00:00:56:21 - 00:01:30:11
Bel Kambach
My local hepatologist diagnosed me with autoimmune hepatitis that I doubted, so I went straight home. Just research and research. After reading everything, I knew deep inside of me that the symptoms and autoimmune hepatitis did really not match my way of life. So I said, “I really want a specialist,” and usually when you have misdiagnosis, it’s a team of 10 or 20 hepatologists that go over your case to kind of decide what you really have.
00:01:30:13 - 00:01:59:01
Bel Kambach
It was kind of like fresh air to get my real diagnosis, and I felt like I was put on a dose of prednisone just because of what I look like — “Ah, so this is a woman of color. She kind of fits the profile” — not taking into account what my lifestyle was or what I do for a living. I think — and I suggest this to every woman — be your own advocate.
00:01:59:06 - 00:02:21:08
Bel Kambach
Write down questions for your hepatologist. Go with the list. Go with a little pad, so that you ask them and you don’t forget. No. 1 is: So I do have PBC. OK, what stage am I in? How do I know what stage I am? What’s my treatment? Does my insurance cover these treatments? What can I do on my own?
00:02:21:10 - 00:02:34:07
Bel Kambach
No one knows your body like you do. My name is Bel Kambach, and I’m a member of myPBCteam.
Like many people with primary biliary cholangitis, Bel Kambach found that the journey to getting a PBC diagnosis didn’t take a straight path. What started with severe itching on the bottoms of her feet turned into a visit to a dermatologist (skin specialist). That was followed by a visit to a hepatologist (liver specialist), starting a prescription medication, and a misdiagnosis of autoimmune hepatitis. It was another two years until Bel got an accurate diagnosis of PBC.
Diagnosing PBC may be a difficult and lengthy process. The main challenge is that PBC symptoms can be very general. For example, itching can be a symptom of many dermatologic conditions, and fatigue is also a part of many different chronic conditions.
Your health care provider may use several medical tests to diagnose PBC. These include blood tests that examine the status of your liver, check for substances that indicate autoimmune conditions, and evaluate your cholesterol levels. Your doctor may order imaging tests like an ultrasound, a fibroscan, or a magnetic resonance cholangiopancreatography (MRCP) to get a picture of your liver and bile ducts.
Bel felt relief when she finally received her PBC diagnosis. Her experience with an initial misdiagnosis gave her some valuable insights she hopes to impart to others living with the condition or trying to get a diagnosis.
Bel stresses the importance of being your advocate during the process of getting your PBC diagnosed and treated. Being your own advocate means taking an active role in your care and being clear about your needs and goals during your PBC care journey. Here are some ways to advocate for yourself in a medical setting:
Bel recommends writing down your questions and concerns before every medical appointment. When discussing a new PBC diagnosis with your doctor, you may want to ask questions such as:
In addition to advocating for yourself, 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.
What was your PBC diagnosis journey like? Do you have any advice for others recently diagnosed with PBC? Share your experience in the comments below, or start a conversation by posting on your Activities page.
More Videos
When starting treatment for PBC, Bel Kambach asked her PBC specialist a lot of questions. Here are some of her suggestions.
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.
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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