Caroline was diagnosed with a rare condition called sarcoidosis which affected her liver to the extent that she needed a transplant. She urges people not to Google their condition, but seek out trusted sources of information like the British Liver Trust. Thank you for sharing your story, Caroline
My liver journey started with one of my eyes feeling very scratchy and being sensitive to light one evening in September 2018. During an emergency visit to the opticians, I was told I needed hospital treatment and was immediately called in to see a consultant who said there was high pressure in my eye and I was given some drops.
A few months later I seemed to have dropped a size in clothing, I was also itching at night and then woke up looking yellow. I called NHS 111 who told me to go to hospital, but the duty doctor there said I didn’t look yellow and my tests were fine. A couple of days later I woke up and was bright yellow – it was a real shock. Further tests through my GP showed something abnormal in my liver.
I was referred to gastroenterology at my local hospital and had lots of tests, but they couldn’t work out what it was. My bilirubin kept going up and I was admitted to hospital for more tests. I was there for two weeks and really bored. I had never been ill in my life and was so used to working that I couldn’t get my head around being in bed all day. So after I’d been seen by the consultant in the mornings, I would go down to the park or out for a walk with a promise that I would be back for lunch. My liver now started rejecting certain foods, a one-off McDonald’s and a chilli con carne containing beef both made me nauseous.
A liver biopsy finally revealed granulomatous hepatitis attributed to sarcoidosis which had first appeared in my eyes and then decided to target my liver. It’s pretty rare, my doctor said they might get one case every ten years. I was told I would probably not develop cirrhosis and was put on a course of Ursodeoxycholic Acid, but they started talking about a liver transplant.
So fragile
I was referred to Queen Elizabeth Hospital in Birmingham in July 2019 and had an overnight pre-assessment there. After a few appointments I realised I was too exhausted to do this on my own anymore and my family and friends arranged a rota to drive me to my hospitals and I moved in with my mother.
I also developed osteoporosis in 2019 caused by medication I was taking and shrank down from 5ft 4ins to 4ft 6ins. I was bent over double and developed Kyphosis and was so fragile that I screamed out in pain when my mother tried to hug me. I was now using a wheelchair as I had no strength left.
I was on the transplant list for six months before I got the call first call in May 2020 but that liver wasn’t suitable. I could feel my health deteriorating and I was experiencing extreme tiredness, pain, HE and I was also unable to see because I was waiting for cataract surgery on both eyes. I got the second call 18 days later and was waiting for five or six hours at the hospital, so I thought nothing was going to happen, but then a nurse came in and said they were taking me down.
I remember waking up afterwards and thinking ‘Oh my God I’m alive’ and then nothing. I was in and out of consciousness, but my brain was becoming crystal clear because the HE was gradually going. On the third day I wanted to go for a walk in ICU and I held onto a nurse on either side and did it! The next day I was moved onto the ward where I spent another six days. It was a bittersweet time, because while I felt great, there also were moments of sadness because I was thinking about my donor, the family and their loss.
My liver function is under control now and I’ve had no rejection issues. My last MRI showed a slightly fatty liver, which apparently is quite normal because of all the drugs I’ve been taking
I went back to my mother’s until I could do tiny bits for myself and was on crutches and still had the wheelchair for quite a few months afterwards. It was a slow recovery – I would go to the park where someone would push me and I’d get out and push the wheelchair as a walker until I got tired. I’ve got through seven walkers because of my determination to get back to some sort of normality and have managed to get stronger and straighter so I’m now 5ft, although I still have a curve in my spine due to osteoporosis.
My eye and my liver function are both under control now and I’ve had no rejection issues. My last MRI showed a slightly fatty liver, which apparently is quite normal because of all the drugs I’ve been taking and while there’s a slight discomfort at a short segment of narrowing of my biliary anastomosis but no intervention is needed at the moment so far everything appears to be fine.
Looking back, I still can’t quite believe what’s happened and that I’m still here. I obviously get very emotional on the anniversary of the transplant when I think about the families of both livers that I was offered, but generally I’m just a person who gets on with it. Sadly, I’ve not been able to go back to work because of my spine and I need to rest during the day, my eyes are still dry and my thinking isn’t as quick as it was. I’ve worked all my life, since I was 16 and it was my lifeline, so it’s taken a long time to come to terms with that.
Never Google
However, I’ve always been very active, it’s in my DNA, so I’m doing some light community work and also enjoy seeing how many steps I can walk with my walker. One day I went to the beach and saw a pram near the sea and wondered how it managed to get there. So with help and all my strength, I pulled the walker into the water, sat down on it and put my feet into the sea and it was the best thing in the world. That’s when I realised I’m alive and carrying out the wishes of my donor.
If you’re diagnosed with liver disease, never Google it because it can be terrifying and wrong information and images will always stay with you. I never did and that’s why I’m probably mentally clear headed. Visit the British Liver Trust’s website instead and you will see that people survive. Try to stay positive, difficult I know, and try to keep your fitness levels up. Listen to the consultants too because they are the experts but no one’s perfect, so if you have a gut feeling tell them. It’s a long journey but you will get there. Just keep going.
Read Caroline’s blog to find out more about her story 
