Carol was diagnosed with fatty liver disease in 2009 and had a scan every year, until 2021 when her colleagues began telling her she looked very yellow. Thank you for sharing your story with us, Carol
Hello, my name is Carol, I’m 66 years old and my liver journey started 15 years ago. I had to have my usual yearly blood test for my thyroid function as I was on 200mg thyroxine daily, I remember always feeling tired with no energy and was starting to itch.
I was called into the GP a week later to discuss the results. This is where I was told I had an abnormal liver reading and the GP would write to my local hospital to see the gastroenterologist.
When I did see him I had a CT scan and it was confirmed I had a fatty liver and was to have a yearly CT scans. Well, that was basically it. I had my CT scans every year with no change to my fatty liver although I was very itchy and not once did I ever think I had anything wrong with me and was never told anything other than I had a fatty liver.
I carried on as normal with my life until September 2021 I was working and one of my work colleagues told me I looked very yellow but I couldn’t see it myself. So put it to the back of my mind, then again in November and December 2021 more of my colleagues were telling me how yellow I had become, so I eventually went to my GP who had bloods done. He also got in touch with specialist at my local hospital and I was seen by him within a month. By this time I was off work and feeling so tired I couldn’t get out of bed some days,
I then had an endoscopy in April and more bloods which showed a very high bilirubin level. A liver biopsy in May showed I had cirrhosis of the liver and I was asked how I was feeling – I was exhausted. I hadn’t done any research into this liver problem as I still didn’t know just how ill I was. Then one Friday night at the beginning of June 2022 my GP phoned me at 9.30pm and asked if I was feeling OK, I thought it was a bit strange to be honest.
I got my appointment with a liver specialist within two weeks
Then at 10.10pm the specialist from my local hospital also phoned me to ask how I was feeling and said he was worried because my bilirubin was 198. I hadn’t a clue what he meant by this, he then said he would inform King’s Hospital, because I needed to see a liver specialist and I got my appointment within two weeks,
I was then told I would need a liver transplant and just a week later I was in King’s having my assessment which took four days, I had lost nearly three stone in four months and was so weak, but this all happened so quickly I didn’t have time to think about it because I had so much to take in about my transplant. I went home from King’s on a Wednesday, was listed on a Thursday and had my call on a Friday and the transplant that same night.
To think I had been left all those years without seeing a single liver specialist, then I was told I was on a super-urgent list as I was near end of life. I just can’t get my head around it all, but I’m a strong person and made a good recovery.
I was home on day nine, not bad for a 64-year-old. It hasn’t been an easy journey and I couldn’t have done any of it without my husband by my side. He took six weeks off work to be my nurse/ carer. I had a few hiccups but was all sorted by my amazing surgeon and his team at kings.
I’m forever grateful for my gift from my donor and I can’t thank the donor family and King’s liver team enough for saving my life. I’m 21 months post now and still think about that special day everyday.
