Primary Biliary Cholangitis (PBC)

Here Jenny shares her story:-

It started in my late twenties whilst working as a youth worker and studying for my degree. I had had issues with a frozen thumb on my right hand, which was limiting both my study and my social life. After a blood test, the presence of AMA (Anti-Mitochondrial Antibodies) was detected and I was referred to a local Gastroenterologist, which following biopsy, confirmed the diagnosis of PBC (Primary Biliary Cholangitis).

The biopsy was a very frightening. It’s degrading using bedpans, and horrendous lying motionless for hours afterwards. I have since had more biopsies, each one equally painful and traumatic - meaning time off from work for my husband or daughter. My symptoms progressed – the worst was the regular vomit of frothy green bile, diarrhoea and chronic fatigue. Everything I did was affected.

After a few years, I had a normal monitoring appointment where I was told I had HCC (Hepatocellular Carcinoma). This meant a prognosis of less than 4 years if I did not get a transplant. Later, this was reduced to less than just one year, and when my liver finally ‘went in the bucket’, my hero and surgeon Mr. Pollard of the Leeds Liver Unit said I would have been lucky to get another week out of it.

I had an 11-month wait on the transplant list from November 2011, having 2 biopsies in the interim. I thankfully received my transplant on the 26th October 2012, but whilst recovering in hospital, I experienced a rejection episode, which meant another biopsy. This being just after transplant and with my new liver, I was even more anxious. If, at the time, I would have had access to LiverMultiScan, it would have been far less traumatic for me at an already stressful time.

My PBC has since recurred and the prospect of more biopsies is quite scary. There is no fear at all with LiverMultiScan - I am one of those strange people who find MRI not too dissimilar to meditation!

I am so amazed by the clear, understandable results of LiverMultiScan. It is fast and pain-free. Having results in such a readable manner gives ownership back to the patient. So often, doctors mystify a process and are a bit precious of results. It is refreshing and enlightened to trust patients with their own data. We may not understand it as fully as medically trained people but we aren’t as stupid as we look in those gowns.