Elsbeth’s story: “Without these groups, I wouldn’t feel as ‘good'”

Elsbeth is on the liver transplant waiting list and has been diagnosed with a combination of Primary Biliary Cholangitis and Primary Sclerosing Cholangitis. She explains how the British Liver Trust's support groups have helped make the waiting a little easier. 

I was diagnosed with a liver issue, after routine blood tests showed problems with my liver function.  Initially they didn’t quite know what it was, maybe fatty liver. I was really surprised as I didn’t feel particularly unwell. No-one really explained what was wrong with me, I just thought of it as having a dodgy liver.

For a few years afterward I had regular check-ups until February 2018 when my consultant told me that my liver function had gone really downhill and diagnosed me with a combination of PBC and PSC. I could potentially need a transplant and/or the chances of (liver) cancer were higher than normal, depending on which condition it actually was.  I was so shocked; I didn’t feel ill and did not expect this news at all. I cried all the way home on the bus.

The liver transplant waiting list

By September 2018 I was on the transplant list.  No one really understands what it’s like to wait for a call that can change your life.  My mobile phone is glued to my hand, whether I’m out walking the dog, or popped to the shops.  For the first six months you jump every time the phone rings thinking – is this it?

I’ve been waiting two years now.  They tell me that my liver function is stable, but I actually feel a lot worse.  You just have to learn to live with the stress and the symptoms. People who tell you they are tired too, have no idea what this kind of tiredness feels like.  The worry is something else.

Online support

I started going to the patient support group in Renfrewshire for pre and post transplant patients but when Covid came along they had to be stopped and we all started shielding at home.

Then the British Liver Trust online groups started up.  Before I would have been the person to shy away from technology and hide from the camera, but things have changed and it’s second nature now to logon to an online group.

Ordinarily I rely on public transport so I’ve only ever attended groups close to home – but now I’ve met lots of people online that I would never have met before, from all over Scotland.  I’ve connected with some really great people who have made a big difference to my outlook.

Amy and Gillian who run the British Liver Trust support groups are amazing.  They really care and they remember what everyone says, the details, so you really feel like your situation is important and you know someone is looking out for you.

In my everyday life if people ask me how I am, I say I am good.  It’s not true, but it’s not worth going into it, and feel like I am burdening everyone with it.  That’s why I love the groups, because the people there know what it’s like, what you are going through.  You can ask anything, find out if someone else has had the same thing happen, or ask what to expect. Not everyone has the same condition, there are so many different liver conditions, but a lot of the symptoms are similar.  Just knowing someone is there and someone will answer your question is a huge relief.  It’s a big part of helping me to cope.

Without these groups, face to face or virtual, I wouldn't feel as "good". I would still have a lot of unanswered questions etc. I regularly see a consultant, but there are always questions you forget or are a bit embarrassed about asking. Or you feel like they're silly questions and you don't want to waste the consultants' time. Having a group of people there to support you, makes it easier to deal with the health condition.

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