Raising awareness of Primary Biliary Cholangitis

Living with Primary Biliary Cholangitis (PBC) has changed my life beyond recognition. Never heard of it? Well, this chronic condition can cause progressive destruction of the bile ducts in the liver and affects about nine women to every one man.

hands all linking togetherIt’s an autoimmune disease, with no association with alcohol or drug abuse. And there’s no known cause or cure.

Where it all began

Back in 2002 I had a really severe bout of flu and never properly recovered. I lost a stone and a half, ending up weighing just six stone. I looked and felt awful. I did start to feel better, but I was tired all the time. Five years later I went to my GP and was diagnosed with underactive thyroid.

For the next three years I was back and forth to the GP with extreme fatigue. I can’t explain how exhausted I was. I used to fight it but at times all I wanted to do was to just stay in bed and sleep all day.

I also started to suffer from extremely itchy feet, in the arch of each foot. It drove me insane, I remember scratching it with a knife once to try and get some relief.

My GP sent me to a dermatologist who promptly diagnosed me with trench foot and put me on steroid medication. To my horror, two weeks after that my hair started to fall out, leaving large bald patches.

I had to buy a wig which, as you can imagine for a woman in her thirties, was very depressing indeed. On top of all my other ailments it was really hard to cope with. A haematologist ran some blood tests and told me that I had a high white cell count and low blood count but she didn’t know why.

I felt as if I was being passed from pillar to post, and I’m not ashamed to say that at times I felt almost suicidal, the hair loss being the biggest contributor to this.

Even when the dermatologist stopped the medication my hair didn’t grow back and the exhaustion and itchiness in my feet was getting worse. It would wake me up at night and sometimes I made them bleed. It didn’t help that one GP I saw told me that my bald patches weren’t really there and that I was imagining my symptoms. At times I felt very frustrated that the doctors just didn’t believe me.

A diagnosis at last

PBC foundation website

PBC foundation website

Finally, after two more years of misery my dad persuaded me to go and see another doctor. This time she listened to me, ran a liver function test and rang me up to say my count was high but she was almost certain it was nothing serious. Two months later I was diagnosed with Primary Biliary Cholangitis.

I was put on a drug called Ursofalk and after a couple of months my liver function test was back to normal, my itchiness was much more manageable and my hair had started to grow back. The fatigue didn’t improve but I find ways to manage it – my philosophy has always been to fight it. Even when I was at my worst I never took a day off work, instead taking annual leave to attend hospital appointments.

Spreading the word

Now my mission is to make more people aware of PBC. It’s not that rare but I understand that many women are, like me, going undiagnosed for far too long.

The healthcare professionals don’t seem to know about it either. I saw several GPs over four or five years and two separate consultants from two different specialities and not one picked up my PBC. If they had, I could have been spared an awful lot of misery. I hope I can help others to get diagnosed much sooner than I did and get the help they need.

I now run a self-help group for people in the Nottinghamshire area, which gives them a space to share their experiences of living with PBC. It’s easy to get depressed, but hearing others in the same boat talking about what they’re doing and how they’re coping helps you realise that everything will be alright.

I’ve been on TV and done a live radio interview with members of the group. They mean so much to me, they feel like part of my family.

Coping with PBC has been tough, but I refuse to let it take over my life. Let’s try to raise awareness of this condition and help as many people as possible get the right diagnosis.

Find out more…





Wendy Wheat

About Wendy Wheat

I’m 43, single and live in Nottingham. I have two children aged 18 and 21, and was diagnosed with PBC in 2012. I am a Co-ordinator Volunteer for Nottinghamshire for the PBC Foundation. I’ve set up Nottingham Peer Support for PBC and can be contacted on 0758 402 6815 or wendywheat71@gmail.com.

  • mango

    Amazing what Wendy has achieved in such a short time.

  • Deborah

    It is! Particularly managing with all her symptoms – don’t know how she did it. Fantastic Wendy!!

  • Thanks Wendy for helping to raise awareness.

    For those of you that are interested, Wendy is our regional volunteer for Nottinghamshire and provides support for our members in the Nottinghamshire area. We have 45 volunteers like Wendy throughout the UK, providing similar support in their local areas. If you have been diagnosed with PBC and would like to become a member and take part in activities in your local area, along with receiving support from our head office in Edinburgh, then please visit our website by clicking this link


  • Deborah

    Thank you PBC! We think what you do is great!

  • moirathrop

    I’m so glad you got your diagnosis. My Mum was in her 60s when she was diagnosed – after a bout of pneumonia. It took a long time for the symptoms to become really bad – when she was in her mid to late 70s – but I know that itchiness was maddening. It is a devastating illness and all of us girls in the family were tested for signs of PBC as a result as I believe it can be hereditary. Luckily all our blood tests were fine but it’s good to be aware of it – and yes every time I tell people about my Mum I have to explain that it’s not because she was an alcoholic! Good luck with your campaigning and best wishes to you for the future.

  • Valerie Pinfold

    I went to my GP back in 2000 because I had been suffering with diarrhoea for rather a long time. I was referred to a consultant, Dr. Ellis at the Horton hospital, Banbury. When he looked at my blood test results he found that I had the anti-mitochondrial antibody which can sometimes lead to Primary Biliary Cirrhosis. And unfortunately for me it did. This was confirmed in July 2007 and led to checkups, various tests and scans over the years, which gradually increased as time went on. If I got an illness it would make me feel more unwell and for longer than other people had it for. The main thing that I suffered with was the extreme tiredness. I worked part time, lived with my two daughters (teenagers at the time), had a dog and a house to run, life was quite tough sometimes! I suppose for the last three to four years I really started to suffer, with last year being the worse. I also got ascites for the first time and eventually had two drains. A consultant from the John Radcliffe hospital in Oxford told me that it was looking like transplant time and in November my GP told me enough was enough, I just wasn’t fit to work any more, and he signed me off work. In December I went to see a consultant at the Queen Elizabeth hospital, who confirmed that I did now need a transplant very soon. In the first week of January 2015 i stayed in the hospital for a week and had all the tests for the transplant assessment. I was told that I was fit enough to undergo the operation and was put on the list.

    I got the phone call in the evening of Saturday 22nd February. After swearing, crying, telling Robyn and Leah (my two daughters) and getting my last minute things packed, Robyn, Leah and Gary (my partner) set off for the Queen Elizabeth hospital. After I was admitted we all decided to try and get some sleep! I was taken to theatre for my liver transplant in the early hours of Sunday morning. My surgeon was Mr Mirza.

    I think the operation went quite smoothly from what I have been told. But in the afternoon of the following day my family were told that the liver was failing, my arterial vein was too small and half of the liver was without blood. So I was put onto the super urgent list and again my family were told that another liver needed to be found for me within 72 hours. So just in time, on Friday 27th February I was taken to theatre for my second liver transplant. My surgeon this time was Mr Muiesan and he was assisted by Dr Mergental. This operation was a lot more tricky, took rather a long time, i had some infection from the failing first liver, I lost a lot of blood, and at a later clinic appointment I was told by Dr Mergental that they only just saved me in time.

    Then followed my time in critical care. Obviously at first sedated, then woken up to start my recovery. But i was one crazy lady! I had such detailed dreams, which all involved the doctors and nurses looking after me, but were set in different places. But worse than that for my family, was that I was horrible to them and I was swearing, shouting, screaming. I was also like this to the doctors and nursing staff, refusing to have things done. I must have made it very difficult for them to do what they needed.

    After a while I was moved out of critical care to the liver ward. Physically ready but definitely not mentally – I was still crazy there for a while! Then I got pneumonia … a very scary time, I just could not breathe. So back to critical care I went for further treatment. Thankfully I recovered from this too.

    When back on the ward again I slowly started to recover and got stronger with my walking. Apart from a few days when I got severe diarrhoea, didn’t feel well and lost weight, I also started to feel much better and after 5 weeks and 5 days I was discharged from the Queen Elizabeth Hospital Birmingham.

    Now back at home some days are tougher than others but I am gradually recovering. I know I am very lucky to still be here today. My surgeons are now my heroes and I thank all the doctors and nursing staff from both critical care and the liver ward, that looked after me during my long stay in hospital. I am extremely grateful to my donor’s family and always will be. How can I ever forget them. My mum died just last year so I know what they are feeling right now and it’s not easy at all.

    After reading this, if any of you would like to talk to me or ask me any questions, I am very willing to do this. I can be contacted through my email address – vpinfold03@aol.com. I also have my own website, http://www.mylovelyliver.co.uk where I am writing a blog about my journey.

  • As an update to my earlier comment, on 27th February 2016 I reached my first anniversary of my second liver transplant. I do still get extremely tired but I am doing well.

    During my first year I have been able to go to Cornbury music festival, go to Cornwall for a summer holiday and had a short break to Brighton with my daughter, had various day trips out with my family including a day on a canal boat and been with them all for various birthday and other celebrations. I have been to Yorkshire, spent the day in a spa, talked on two different radio stations about my experiences and been featured in local newspapers.

    I have gone back to work for a few hours a week and I have bought myself a red mini and am now back on the road after not being able to drive for over a year. I have also been lucky enough to meet some very special people who unfortunately have not been as lucky as I have been so far.

    I have been able to help to promote organ donation and have raised money for the British Liver Trust and I want to continue to raise money for different charities that mean a lot to me. I enjoy spending this extra time I have been given with my family and doing the ‘normal’ things again that I haven’t been able to do for a long time without struggling.

    My new project is to volunteer in the liver ward at the John Radcliffe Hospital in Oxford and talk to the patients there who are suffering with their own different liver illnesses. This is still in the process of being arranged but I really do hope I am successful. I am extremely grateful to my two donors and their families and always will be. How can I ever forget them. Without them I quite simply would not have been here to do any of the above.

    After reading this, if any of you would like to talk to me or ask me any questions, I am very willing to do this. I can be contacted through my email address – vpinfold03@aol.com. I also have my own website, http://www.mylovelyliver.co.uk where I am writing a blog about my journey.

  • Great to hear that you’re well and doing things you enjoy. Congratulations on your volunteering, I’m sure so many others will benefit from what you can offer, sharing your experience.

    Hope everything continues to go well for you Valerie xx