What do you wish others knew about PBC?
There are plenty of misconceptions and a lot of unknown information about primary biliary cholangitis. What's something you wish people understood about the condition, or your personal experience living with it?
What causes it and how it affects your health and there is no cure but a liver transplant. I wish they knew about you having good days and have some days that just make you stop and rest.
I hear you. I think one of the biggest things people often miss is how much understanding and empathy can make a difference. Even if someone can’t fully relate to PBC, just recognizing that some days are harder than others and giving space for rest can make living with it feel a little less lonely. How have you been lately? -Latoya (Team Member)
That you can't just automatically be added to a transplant list. There are certain criteria you have to meet and you can't just buy one at Walmart. And just because I have cirrhosis doesn't mean I am an alcoholic. I had to call an ambulance for myself in December due to HE and even the paramedic immediately judged me looking around for alcohol bottles. And had the nerve to ask me if I was an alcoholic. I was so angry that he assumed this. And the physician who treated me at the hospital worked with me....also ran an ETOH level on me when admitted. I was just hurtful. I don't even drink alcohol.
In a moment when you needed help, you were being judged instead of supported…yeah, that’s really hurtful. That would’ve upset me too! You shouldn’t have had to explain yourself like that, especially to medical professionals. I’m really sorry you had that experience. -Latoya (Team Member)
I wish they knew how serious us patients are about PBC. First, I think when they ask what it is ... the words are too big or something since they've never heard about it. And if they ask and I tell them how I'm feeling at that moment... they give that look like I'm a whiney , wimpey kid who wants a pity party or something like that. Or they'll say....but you look so good! (on the outside - yeah)
Hi there! My name is Bridget, and I work at Health Union, who owns and operates this community. We're currently looking to recruit some folks living with PBC to participate in a video interview on site. This would take about an hour of your time and be a paid opportunity. Please email me bridget.gawinowicz@health-union.com if you'd like to participate! I hear you. Most people have never heard of it, so they either tune out when the medical terms start or they assume it’s not a big deal because it’s not something common like diabetes or cancer. And the “you look fine” thing can be so dismissive without them even realizing it because they don’t see the fatigue, the discomfort, or the stuff going on internally. Sometimes you just wish people would trust what you’re saying about your own body and show compassion even if they don’t exactly understand the pain you’re experiencing. -Latoya (Team Member)
My husband had cholangiocarcinoma in 2004. We were blessed to find it early. Dr. Attila Nakeeb at.IU.hospital performed 11 hour surgery after liver Specialist Dr Paul Kwo conferred with him. This was followed by five years of chemo (gradually reduced). At that point he was considered cured. He passed after 18 years from COVID. The cancer never came back. His oncologist was Dr Patrick Loehrer at.the Indiana cancer pavilion at IU hospital.
I’m so sorry for your loss 🤍 Losing him to COVID after everything you both endured just feels so unfair. But it really sounds like you both fought hard and had an amazing medical team in your corner. I’m really glad you shared this. His story matters, and so does yours. Be encouraged, Latoya (Team Member)
