Pinny’s story

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 Cholangitis. 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. I was prescribed ursodeoxycholic acid, steroids, calcium, alendronic acid and many other different medications over the years. If I got an illness it would make me feel more unwell and for longer than other people had it for. I did have the itch that can go with the illness at first, but thankfully that side of things disappeared for me. 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 gradually started to suffer more as the years went on, with 2014 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 2014 my GP told me enough was enough, I just wasn't fit to work any more, and he signed me off work. In the 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 2015. 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.

Back at home some days were tougher than others but I very gradually recovered. 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.

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 spent 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, www.mylovelyliver.co.uk where I am writing a blog about my journey.

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