When Louise started getting dizzy spells, she struggled to convince her GP of the need for a blood test. And after more tests she was diagnosed with autoimmune hepatitis and just a couple of years later was told that she needed a liver transplant. Now post transplant, she has so much more energy and stamina than before. Thank you for sharing your story with us, Louise.
I am a director of a PR agency and my husband is a landscape gardener. We enjoy the countryside, walking our dog and drinking lots of tea – it’s a nice little life.
I had no liver disease symptoms but started getting dizzy spells in 2016. I thought it might be poor blood sugar, but when I asked my GP for a blood test she said: “You won’t be diabetic, so there’s no point”. I dug my heels in and said: “My mum has an underactive thyroid which is hereditary – could it be that?” (even though I didn’t think it was) until she finally agreed.
Two days later I got a phone call telling me to come in as my platelet count was very low and if I started bleeding and it didn’t stop, I should go to A&E! I saw a different doctor at the practice then who was lovely and she said my spleen was a bit bigger than it should be, so referred me to haemotology at the hospital.
Haemotology carried out a bone marrow biopsy, an ultrasound, CT scan and more blood tests, but nothing was coming up. Then they looked more closely at my CT scan and passed me on to hepatology. I got the official autoimmune hepatitis diagnosis (AIH) after a liver biopsy and was started on steroids and autoimmune suppressants. Apart from fatigue I was ok – I was living a decent life and going out and about, but then in December 2018 a year after the diagnosis I was out with a colleague and suddenly felt really hot and threw up over two pints of blood in the street. Surprisingly, I felt quite calm in the panic that surrounded me. I’d read a lot on the British Liver Trust’s website so I knew what was happening – I was bleeding internally and had burst varices, and I needed to get to hospital ASAP.
The ambulance came really quickly and I was admitted to St Thomas’ where I stayed for six nights. I was given a transfusion when I got there and the reaction speed from the NHS team was very reassuring, but I’d lost a quarter of my blood and my veins had collapsed! While I’d been having CT scans and my blood was monitored up to then, I hadn’t had any endoscopies so the pressure had been building up in my varices due to the damage to my liver. One of the consultants at St Thomas’ asked if anyone had talked to me about being on the transplant list. No, they hadn’t. I went on a banding programme and was put on beta blockers and everything was supposedly under control, but I was concerned.
My own consultant didn’t think I needed to be referred for a transplant assessment – he said he would put it in my notes and I didn’t hear any more about it. I did push for endoscopies every six months because that had been remiss and there was no way I wanted to go through that again. They showed that the varices were being kept in check, so I trusted the experts.
Covid hit the UK in early 2020 and later that year I got a new consultant who, after our first virtual appointment, referred me immediately to King’s College Hospital. After the two days of assessment the surgeon and senior hepatologist said putting me on the list was an open and shut case. I had obvious AIH with significant liver damage and inflammation but was young and the chances of me surviving the surgery were good.
It was big news to take in – again. Every time something happened I was digging a bit deeper to be brave and this was part of the journey.
The first call about a new liver was about six months after joining the transplant list
I’d never even had an operation before and had no idea what to expect. The British Liver Trust website was a great resource to find out more and find out about other people’s experiences, and I packed a bag and put it by the front door so I felt prepared on a practical level. Then it was a case of waiting and having my phone on me all the time with the volume up. I was on the list for 21 months. Through that time my blood results were in range so the medication was working, but the fatigue was always with me.
The first call about a new liver was about six months after being listed, at around 2am and I was told the ambulance would be with me in about 30 minutes.
I got to the hospital and was taken up to the ward and shown to a private room. I didn’t know what to expect, but there was a flurry of activity. A nurse took my observations, did Covid, MRSA and pregnancy tests, then the transplant coordinator talked me through the process and how Iong I’d have to wait until I knew it would go ahead.
I had an ECG and was taken down to x-ray, then asked to have a wash, put on compression stockings and a canula was put in. A member of the surgical team then talked me through the consent form and I signed it. I had a few hours after that where nothing happened, but I’ll be honest it was nice to rest, so I read my book and texted a few people. At this point I was in limbo.
Then the transplant coordinator came in and apologised that it wasn’t going ahead. They offered me a cup of tea and a sandwich before calling me a car. They took the canula off, I got changed and walked out of the hospital and was at work the next day. In fact, I was relieved, as I realised I wasn’t really mentally or emotionally ready for it, but it was a good test run.
From there I went to King’s College Hospital every three months to see their pre-transplant consultant and felt very well monitored and looked after.
The next call came just short of a year later, in March 2022, but it was a very similar process to before, and after 16 hours I was sent home. I got the next call in August 2022, but unfortunately the requirements for the liver to be viable weren’t met, so back home I went. By then I had been on the list for more than 18 months, so when my phone went again just a few weeks later in September, I knew I wanted this to be the time, even if it would be the thing I’d been dreading for so long. And, thankfully, this time it went ahead.
I woke up feeling groggy and sore. I was just so relieved to have come through the liver transplant surgery
I walked with the anaesthetist and transplant coordinator to a tiny holding room just outside the operating theatre to confirm my signature of consent. Then I walked into theatre and thought: “Right, that’s it then.”
I woke up in feeling groggy and sore. There were tubes, but they didn’t feel uncomfortable and nothing was hurting really badly – perhaps my mind just didn’t connect with having pain as I was just so relieved to have come through the surgery.
I spoke to my husband on the phone for about 15 minutes (although I really can’t remember what we talked about!) and they had me sitting up an hour or two later. It seemed insane that they wanted me to move so much when they’d only stitched me up about four hours ago – why wouldn’t my entire insides just pop out?
It was uncomfortable, and even trying to turn over or move was urgh, but I felt quite lucid and the pain was manageable. I just wanted to keep lying down and for the uncomfortableness to pass but the next day, just 12 hours after waking up, the nurse said: “Up you get, you need to sit in the chair.” And later that day I was moved to a ward.
I won’t lie, it wasn’t easy, but every day got slightly better and I was discharged nine days after the transplant. It felt fast. I thought I could manage at home physically, but emotionally, did I feel ready to leave? The hospital felt a bit like a safety net and everything had changed so quickly.
I tried to stay as fit and healthy as I possibly could before the transplant and I’m sure that helped my recovery
I wasn’t sure how I would get up onto our bed so I slept on the sofa for a few weeks and thankfully we have a downstairs bathroom. My mum came to visit a lot and helped with the washing and cleaning because you’re not allowed to really do anything, while my husband dug into his cooking skills. Our dog did a lovely job of simply keeping me company on the sofa!
I tried to stay as fit and healthy as I possibly could before the transplant and I’m sure that helped my recovery. My body seems to be functioning really well, my bloods are stable, and I have so much more stamina and energy than before. I went back at work in the second week of January and I’m walking our dog 4-5 days a week again, 4-5km every Saturday and Sunday and during the week I’ll do a few 45- minute walks. I couldn’t have done that before.
Autoimmune hepatitis can be very well managed for most people, but some of us face the prospect of a transplant. It was the last thing I wanted to hear in 2020 and hard not to be scared — I was — but I feel more positive and healthier for coming through it. I was listed for 21 months, but I always tried to think about it as not waiting on the list, but living the best life I could before my call came. The transplant became part of my journey and under King’s I felt I was in the very best of hands.
It's now February 2024 and I’m coming up to 18 months post-transplant with no complications and living a full and happy life. It’s a daunting thing to be told you are on the transplant list, and to go through such a major operation, but the post-op care and attention from the transplant teams continues to ensure everything is as successful as possible.
To anyone who’s just been diagnosed or is facing being placed on the transplant list, I’d say don’t be afraid to get support. There are no silly questions. Finding people who understand and reading about other stories was really useful — and don’t go down rabbit holes on Google!
My consultant suggested looking at the British Liver Trust website in one of our first appointments and it was good to find information specifically for the liver, and a place that recognised a rare disease. Most importantly, The British Liver Trust don’t judge you and they are active in trying to remove the stigma of having liver disease.
