Samantha was deeply upset by the stigma she faced from some members of the medical profession. When her liver function readings were high her GP suggested she hid bottles of sherry in her kitchen cupboards. She was later diagnosed with Primary Biliary Cholangitis and had a liver transplant. Thank you for sharing your story with us, Samantha
During the latter part of the 1990s, my mother-in-law sadly passed away as the result of a brain tumour, my daughter was about to start school and I began to feel unwell.
The doctor thought it was depression, but I did not feel this was accurate. I was prescribed beta blockers and sent for blood tests. Results showed that my liver function readings were high and it was suggested it was alcohol induced. The GP suggested I was a secret drinker who had hidden bottles of sherry in the kitchen cupboards! This was very upsetting and I strongly denied it. To investigate further, I had my blood tests repeated and was told not to consume any alcohol during this time.
At a follow-up appointment, the GP continued to suggest my heightened liver function readings were linked to alcohol and shockingly said his wife had mentioned to him that I had chosen a bottle of wine in the local playgroup raffle. It was obvious he had discussed my case with her. I should have raised the alarm about this, but as I was young and in my late twenties, I was not very confident or assertive.
Three months later, my liver function readings were even higher than before and I was referred to a liver consultant. A liver biopsy and an endoscopy showed I was suffering from an autoimmune condition, Non-Cirrhotic Portal Hypertension and Primary Biliary Cholangitis. When I went to see a different GP, a locum, for a sick note, he handed it to me in a very dismissive way. He asked why I needed a liver biopsy and I said that I was unsure. ‘It’s obviously alcohol related’ was his reply (though he just presumed it was alcohol related).
I don’t judge other people but alcohol wasn’t the cause of my liver disorder and I didn’t want the label attached to me and all the negativity and stigma related to it. If it had been Joe Public I would have put it down to ignorance, but it was members of the medical profession. It’s now written in my medical notes not to say that the problem is alcohol related.
My condition was managed with prescribed medication and until June 2019, I generally remained in good health and had regular check-ups. I had no outward symptoms but at times felt quite unwell with nausea and extreme tiredness which I controlled by taking myself to bed for half a day.
Three years ago, I started getting more symptoms, which included fluid buildup in my stomach and increasingly breathlessness. The consultant suggested I may require a liver transplant as medication no longer seemed to be the answer. I was devastated and it took me many weeks to come to terms with it.
My stomach continued to increased in size and I became increasingly breathless and was very unwell. Eventually I was admitted to hospital when I fell at the top of the stairs and was unable to stand up.
I had a series of tests to assess my suitability for transplant including physical, medical, and psychological assessments and was then accepted onto the National Transplant Register. It was a very emotional day.
Following an episode of hepatic encephalopathy, I was admitted to hospital and between January 2020 and September 2020, went back every two weeks for ascetic drains. Between 4500 – 6300 ml of fluid was removed each time. This is the equivalent of 4.5 - 6.3 kilos (9 – 13lbs). The physical symptoms I experienced at this time were difficulty sleeping, encephalopathy, extreme itching and tiredness, feeling and being sick, fluid retention, generally feeling ill, jaundice, oesophageal varices and an umbilical hernia.
Some of the psychological symptoms that I occasionally suffered included were fear of dying, feeling worthless, and a loss of control.
I received a telephone call to say that a donor liver had been found
On 26th September 2020 at 2.15am I received a telephone call to say that a donor liver had been found and I needed get to Birmingham as soon as possible. I was taken to theatre about 8.45am and the operation was completed by 2pm. Once transferred to the ward, I was able to speak to my family and friends which was fantastic. I made really good progress for the first week. However, on Saturday 3rd October, I began to feel unwell. I was in pain, was sick and had diarrhoea.
By 7th October, I had deteriorated significantly and was sent back to ICU as I had had a seizure, thought to be caused by immunosuppressant drug overload. I was given a lumbar puncture to check for infection and a biopsy to check for rejection.
I don’t remember a great deal about my time in ICU, but I do remember being annoyed with the doctors, as I ‘knew I was dead’. Back on the ward I couldn’t understand what a daughter was and thought the building was spinning.
I was finally discharged two weeks later. It was such a fantastic feeling to be finally returning home and feeling so much better than I had for many months. I had lost 10kg since having the transplant.
Tennis had always been my passion, but I thought that I would never play again. I was very apprehensive at first, but was able to hit the ball much better than anticipated. I’m hoping to play weekly and one day to compete in the Transplant Games.
At a later appointment at the post-transplant clinic I was quite shocked that things were not going to plan. My gastroenterologist said the test results suggested cirrhosis and it could mean going back on the transplant register. I was devastated.
I was feeling increasingly unwell, tired, extremely breathless and my stomach was increasing in size. I thought I was going to die. It was decided I should be fitted with a stent due to a narrowing of the portal vein which was carried out on my birthday! Now I no longer looked pregnant and could breathe normally. I feel like a completely different person, it’s like a miracle has occurred.
My liver function readings were somewhat deranged
A year later, despite several setbacks, I felt amazing and on the road to recovery. Onwards and upwards is my philosophy. However, by November, I accessed my blood results online and was horrified to see the liver function readings were somewhat deranged.
I was diagnosed as having acute rejection and narrowing of the bile ducts. The rejection was treated with steroids and within two weeks, blood results showed a marked improvement.
However, I still feel very hurt about the stigma I experienced. It will never leave me. Even recently I was speaking to a lady about my transplant and felt I had to say it was not alcohol induced. For a very long time it was just me and my husband who knew about my illness. I felt unable to talk to friends about my condition because I was worried they would judge me, but I was very wrong in that assumption. I gradually told them over time and they’ve been amazing.
Before I would have a glass of wine every now and then, but that’s it. Since the transplant I haven’t had a drink at all out of respect to the lady who donated her liver. I’ve not been told that I shouldn’t but I can still socialise without having a drink.
Despite having gone through an extremely difficult time, I want to highlight the positive experiences. I feel a different person, do not take anyone or anything for granted and appreciate life more than ever. Materialistic possessions are not important, all I want is to live and be happy. I am in awe of all the treatment and care I received and am so grateful to the NHS and all who have been involved in my care. Whilst I am no longer able to work, which has been difficult to accept, I want to remain mentally active and volunteer in research which I hope others will benefit from. I have given a talk to a group of Physiotherapy students from Coventry University regarding my illness and time spent in ICU.
This makes me feel that I am ‘giving something back’ to society. I am looking forward to a long and fulfilled life and will embrace all that the future holds. I am loving being a Nanny and look forward to watching Leo grow up and our children being happy and content in all they do.
