Bev’s Story
Bev has Primary Biliary Cholangitis (PBC), a rare condition that affects the small bile ducts (the network of small tubes that carry bile in the liver). Bev describes what it was like to get the diagnosis, how she lives with PBC, and why it’s important to ask for help if you’re feeling overwhelmed.
Transcript
I’d been having annual blood tests for cholesterol and liver function for years and it just so happened that I hadn’t been for a while.
So next time I saw my regular GP, I said to him ‘Look we probably need to do one of these tests’.
And I said to one of my closest friends – I don’t know why I said – ‘I don’t think I want these results’.
And I got a phone call from my GP, which was really unusual, and he said ‘Look, I need to see you and I need to see you soon’.
And I said, ‘Don’t play around, something is obviously wrong, what’s going on?’
And he said to me, ‘Look, your liver function’s really high I need you to go see a specialist.’
And when I went in there, he was somebody I knew quite well, and he kind of said, ‘What are you doing here?’ and I said, ‘Look at my bloods.’
And he saw how high they went, and we both kind of thought it was fatty liver. And he asked me to have a whole bunch more tests, which I did.
And he said to me ‘I’ve got something important to tell you, it’s really serious.’
And then he started giving me a whole lot of the detail and I just kind of went, ‘Stop, I feel overwhelmed with the detail, just give me the headlines.’
And he did, and he wanted to give me some information to go and read up.
And I said, ‘Look, you know I know myself, I would prefer to tackle that.’ Because I then had to have a biopsy for them to stage it. I said, ‘When I’m ready I’ll have a look at it, but I don’t want to live in a space of fear, well I don’t know what I don’t know.’
So we arranged the biopsy and when it was done and then I went to get the results to what stage it was at and I just saw him gulp and I thought, ‘Shh, that’s not good.’
And he said it was like late stage 3 early stage 4.
Now I have to say I did not have any symptoms, so I felt well. The only thing I had was a bit of long bone pain. And he looked at me and he said with such intensity and care, ‘This is my area, I will see you through this.’
When I was having a follow-up session with my specialist, he mentioned the fact that there was the potential for a trial. And honestly, as far as I was concerned, anything that was going to help I was there for.
And they nominated a clinical trial co-ordinator and I was like a heat seeking missile – ‘What’s happening? When’s it going to come?’ Because there was a real question as to whether it would come to Australia or not, and it did.
And when I finally got the call that I was in and that it was happening I was delighted because there were so few things at that point that had real efficacy with PBC, so whatever it took I was signing up for I honestly cannot tell you the level of gratitude I have for that trial.
There are moments of worry, I cannot lie, that when I have blood tests is going to show elevation, but it’s not an unmanageable stress about it, it’s just this is what it is – and my life really isn’t any different on a day-to-day basis.
If you are overwhelmed and you’re asking for help, there lots of tools available, and a big one is the Liver Foundation.
And I encourage you to use whatever is available.
There – and that’s the diagnosis story.
