Emma was just 17 when she was diagnosed with autoimmune hepatitis had rarely been ill before. Now aged 39 and a liver transplant recipient, she reflects on her time on the transplant list and thinks about her donor and their family every day. Thank you for sharing your story, Emma
It started with the itch and I would scratch myself everywhere until it bled. I visited my GP for a couple of months and each time I got sent away with meds for scabies and told it was allergies. I then went yellow and spent three weeks in hospital while they worked out what it was.
I was diagnosed via biopsy which they say is the gold standard of diagnosing AIH. This, along with many blood tests, showed that I had the antibodies and severe inflammation with some scarring. At this point they said they could control it with medication and being monitored very closely. Luckily the high dose of prednisolone worked, so I never thought I would need a transplant.
Once discharged, I was in clinic once a week until it all settled down and eventually my appointments got down to every three months. I stayed like this for years, with just a few hospital admissions, including one long one for cmv complications. After I had my son in 2012, I had a massive flare-up – my liver enzymes went very high and I was jaundiced again. They tried many different immunosuppression tablets which either had to be discontinued due to side effects or just didn’t work. My numbers were bumbling along, not high but at the higher end of normal, but eventually I ended up with cirrhosis as there had already been significant damage when I was diagnosed.
Severe portal hypertension
I lived a relatively normal life for 12 years with varices that needed banding, severe portal hypertension which caused a huge spleen and surveillance every six months for any sign of cancer (which is the protocol for cirrhosis). I also had to go in every week for an infusion as my body could not control my electrolytes anymore.
Fast forward to November 2024 – I have always worked and loved my job, but I was feeling a bit off. I was struggling to get up and get through my shift, kept getting dizzy and also noticed my eyelids were really puffy. I mentioned this at my next clinic and had a phone call that afternoon telling me to come in straight away because I was in kidney failure. That also pushed me into decompensated cirrhosis and I ended up with ascites and encephalopathy.
I had no idea I had encephalopathy and thought I could hear all the nurses talking about me and saying nasty things, obviously it wasn’t true, it was the toxins going to my brain. I would also call my mum to tell her they were giving me drugs to keep me quiet, but I needed to gain evidence of it before saying anything, so she should keep quiet about it. It was very scary because it felt so real, but I could see my family didn’t think it was true and I was put on medication to hopefully prevent it or at least lessen the effects.
Being told I needed a transplant was a huge shock, I didn’t feel ready at all and kept thinking that things would change and I would push through like I always had
My team at my local hospital, along with my team at King’s, agreed now was the time to put me on the transplant list. Being told I needed a transplant was a huge shock, I didn’t feel ready at all and kept thinking that things would change and I would push through like I always had, but my liver was in such a bad way that I would never get better without a new one. I passed all the tests on the liver transplant assessment and was put on the waiting list. 
Come January 2025 I needed drains most weeks and kept ending up in hospital with silly infections that would turn into serious ones. I also had an episode of severe encephalopathy, so they ordered an MRI which showed a brain aneurysm. I was suspended from the transplant list until the neurosurgeon teams could decide if it was safe, which they did. They also noted on my MRI that I had deposits of manganese on my brain. My consultant said that showed just how bad my liver was – it wasn’t filtering anything, just shunting it back into the blood stream.
I was put back on the transplant list on March 24th. At the end of April I arrived at one of my weekly paracentesis procedures looking extremely jaundiced and when the doctors saw my bloods, they said that I would be admitted until my transplant as I wasn’t stable enough to be at home. I was getting sicker day by day, but didn’t get one call about a potential new liver. Even though I hadn’t actually been on the list that long, it felt like a very long time.
The time I spent in hospital was very hard. I looked unrecognisable – I was swollen with so much fluid, bright yellow and my eyes were so yellow they looked green. My son didn’t want to visit anymore because it was scaring him – he’s only 13. I couldn’t even look at myself so I wasn’t surprised, but I missed him so much and didn’t know if I would see him again. I could see the strain it was putting on everyone, my family tried to put on a smile but I could see on their faces they were losing hope. I couldn’t eat anymore, I couldn’t wake up, everything hurt and deep down I knew I had days, if that. 
So grateful to donor
So when that call came at the end of June I was in shock. We were blue-lighted up to Kings and told it was 50/50 if it would go ahead, it did. As soon as I woke up in ICU after the transplant I felt better and already my head was clear. It was like a switch had been turned on and I was me again.
I’m so grateful for my donor and her family and think about them every day and will write to them when a bit more time has passed.
It’s been so hard on my family, they are the ones who got me through all of it and when I could feel the fight leaving me I summoned that last little bit to be here for them. I feel absolutely amazing now, I’ve had a few little bumps, including rejection, but I’m here and it feels great to be alive again.
I will be forever grateful to my family and the amazing liver team at Derriford who have basically kept me alive for 22 years – they are my guardian angels and also the amazing team at King’s. My colleagues at work have been super supportive throughout too, it’s a bad enough situation and work is the last thing you need to stress about so a big thanks to them.
If I can give any advice, it would be to remain as positive as possible and take one day at a time. Surround yourself with your closest ones and try and stay as fit as you can.
