My PBC
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At Liver Foundation, we understand that living with a rare and chronic illness can be isolating.
On this page, we can connect you with a community of people who understand and have their own PBC journeys to share, and to give you information to help manage your PBC by making the most of your clinician visits.
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Living with PBC
Meet Bev and Linda as they share their story of living with PBC.
Transcript
My name’s Bev, I’m from Queensland. I’m retired. I’ve got lots of grandkids, they keep me busy.
I like cooking, getting involved in the community. Sometimes we go caravanning with friends, other times it’s nice just to be on your own. You can have your own timetable then.
There’s some beautiful places in Australia, and that’s about me. I was diagnosed 28 years ago, so I was lucky that the GP actually did the test. When I was diagnosed with PBC, I really didn’t understand it.
I’d had lots of liver function tests in that time, but no-one ever triggered. But the ALP was elevated every single test. I actually forgot I had PBC.
And I just carried on with my life. I was in a happy place and I didn’t have any symptoms. They told me I was an alcoholic and a smoker, even though I said I wasn’t.
And I was very anxious because no-one would believe me. Fatigue has impacted my life big time, just the last three years. Sometimes I feel that fatigued, that I’m looking after the grandkids and I’ll have to ring up and say, come and pick them up early.
I find in the afternoons I’ve been rejecting nanny naps, but this tiredness just comes over you and you know you’ve got to have a little rest. I’ve got dry eyes, dry mouth, and I used to get a bit of an itch. My liver function tests at ALP were sky high for 28 years until last month when it actually came down to normal, first time ever.
I’m on a new drug. I credit it to that. I was elated.
I just beamed. I couldn’t stop smiling. It was a great result.
I’ve reached out to the Liver Foundation and they’ve been wonderful and given me lots of resources. There isn’t a hepatologist nurse at my local hospital like the Liver Foundation have where you can just call them. Maybe it’s just a simple question.
My feet are swelling. Is this part of PBC? And you’re not wasting everybody’s time that way, but you are satisfied. You’ve got more confidence.
I’m still learning. There are new trials out there and I’d like to participate in some of them if I’m suitable. Next for me, I’m heading in the caravan to the Kimberley’s.
I’ve always wanted to go there. That’s on the bucket list. So I’m really looking forward to that.
Might even buy a pearl, up in Broome or something. It’s going to be fun.
Transcript
My diagnosis came in 2023 and it took some time but initially it was a surprise. I went to the GP just to get a random script. She said to me, I don’t see you very often and because of that I’m going to send you for some blood tests.
I didn’t think anything of it. I probably had the form for a couple of months and then eventually went and did the bloods and again wasn’t expecting anything so I didn’t didn’t do anything, didn’t think about it until I got a phone call saying the GP wanted to see me. She said to me, look your liver function’s deranged.
Did another test, found the same thing and then she said, look I think I’m going to send you to a specialist and that’s kind of how it all started. He said, look this is what I think you have. Don’t google it because nothing you’ll read is good.
So he handed me a post-it note with PBC written on it and of course by the time I got to the car park I was on the phone googling. The initial research told me that I could be gone in 10 years. That was frightening until I did a little bit more and that turns out that that’s pretty outdated and there’s a lot more hope now.
Initially there was a lot of anxiety around what it actually meant and more so what the future was going to look like and even when I went back to my GP she said, I said what do you, so you’ve got PBC and I said yes and she said is there anything they can do for that now because when she’d been studying there wasn’t really much in the way of treatment. To me on a day-to-day basis it’s probably not that different. I do sometimes wake up in the morning and feel like I can’t do anything when the fatigue hits me but I have certainly taken a lot more care of my health.
I’m probably healthier now than I ever was. I changed my diet fairly significantly but at the same time I’m still eating most of what I like. I just cut out a lot of the takeaway.
I stopped drinking alcohol. I never drank a lot. I wish I’d been directed to a website like the Liver Foundation.
I felt a lot of anxiety around what the diagnosis meant, what the future was going to look like. I think learning that there’s a lot of research in the liver in particular and in PBC itself. There’s new drugs coming out.
There’s a lot of hope in that that it’s not going to be all all bad. If I had a perfect day for me it would be somewhere outdoors in a beautiful spot, by some water and just painting. Just painting what I see.
Fatigue can be a big concern for people living with PBC.
In this video, five people share their experience of living with fatigue as a symptom of PBC. We are helping to make fatigue visible.
Transcript
Melissa: “Fatigue for me can be debilitating. Some days I can spend nearly a whole weekend in bed. I cannot have it for weeks on end or months and then it’ll just hit me.
I can’t ride the horses. I’m too tired to cook. It just sort of stops your world there for that day, that week.”
Karen: “It does feel like someone’s got weights on your legs or you’re trying to move through molasses or treacle and I’ve heard other people describe it like that.”
Linda: “I find that I really have to schedule activities and that sort of stuff outside of work. So I try not to go out more than a few times a week because I know I’ll be suffering for it. I know that what my limits are.”
Sue: “Each day when I wake up it feels like I’ve got varying degrees of hangover. My legs feel like lead weights. I feel like I’ve got a weight on my head and that’s when I have really, really severe days.”
Bev: “Sometimes I feel that fatigued that I’m looking after the grandkids and I’ll have to ring up and say come and pick them up early. I just can’t cope and other times when I’m in the caravan, oh we better spend an extra night here. I just don’t feel comfortable sitting in the car for hours moving on.”
Karen: “When I wake up, I don’t know if you’ve ever seen that book, that children’s book called Flat Stanley. It’s about a little cartoon character that is completely flat. He gets mailed through the post.
I said to my husband that’s what I feel like, Flat Stanley, like someone’s rolled over me.”