Antonia’s story: “I’m extremely grateful for my donor and hope that my liver works well for as long as possible.”

Antonia had been living with chronic liver disease since childhood but her consultants could not find a cause for it. She felt very well until the age of 15 when she began to experience fatigue and after further tests, she was assessed for a liver transplant. Thank you for sharing your story, Antonia

I was diagnosed with chronic liver disease in 2006 when I was just six years old. The corners of my eyes had turned yellow and not long after I was completely jaundiced. My parents took me to the doctor who referred me to my local hospital for tests. Before long I was referred to Birmingham Children’s hospital where it was confirmed I had chronic liver disease. They carried out several tests but could not find a cause for it, so my liver disease was referred to as cryptogenic. For most of my childhood I was really well - I had occasional biopsies and endoscopies but was able to keep up with other kids and you wouldn’t really have known that I had liver disease.

When I was 15 I became extremely tired and pale and was bruising easily. After attending the local hospital we discovered I was bleeding from varices and I was taken by ambulance to Birmingham Children’s hospital where it was banded during an endoscopy and I was assessed for a liver transplant.

I was quite shocked as prior to this a transplant had been mentioned for the future. I was unaware of how it worked and as far as I was aware I assumed they cut you open, gave you a new liver and then sent you on your way. I didn’t know anything about anti-rejection medication, risks of cancer or possibility of rejection so this was quite hard for me to process. I was on the list for about a year before I was removed as new medication I had been taking was working well and I was back to my normal self.

Medication becoming less effective

That was until 2021 when my local consultant referred me to the Queen Elizabeth Hospital in Birmingham. I had been experiencing more oedema at the time and my ascites was slowly progressing, with water tablets becoming less effective. In May 2022 I was assessed for a liver transplant. At first I was rejected as my blood results weren’t too bad, but as I was experiencing a lot of symptoms such as ascites, my consultants appealed the decision and I was listed in September 2022.

I managed well until the summer of 2023 when my ascites became worse and I was having frequent drains. I had lost a lot of muscle and suffered with three bouts of spontaneous bacterial peritonitis (SPB). On the third occasion I became jaundiced and the consultant at my local hospital told my parents that if I didn’t go to Birmingham soon, she was afraid I would go into multi-organ failure.

I was transferred up to Birmingham and on November 15th they found me a liver. The bigger lobe was going to be mine and the smaller lobe would go to a child at the children’s hospital. I don’t remember much post-transplant as I quickly became unwell and the surgeons informed my parents that the first liver was failing and I needed to go back onto the ventilator. I was put on the super-urgent list for a second liver and on the 22nd of November I was transplanted for a second time.

Consultants found a rare tumour on my original liver and went to Great Ormond Street Hospital for advice

The transplant went well and after a week in intensive care I was taken to the ward. However, the recovery didn’t go as well as we’d thought. I was bleeding from the duodenum in multiple spaces and the doctors and surgeons weren’t sure where exactly from or why. I needed frequent blood transfusions and was sent back to intensive care. There were lots of things that the doctors tried to sort the bleeding, but nothing seemed to stop it.

At this point myself and my family were informed that the pathologists had now looked at my original liver and found a rare tumour on it. The consultants and surgeons had said they’d never seen it before and it had only previously been seen in children. They went to Great Ormond Street for advice on what to do and how to treat it. They weren’t sure how long the tumour had been on the liver so at this point it was making a plan on what was best for me. Eventually my anti-rejection medication was changed to sirolimus which has been known to help stop bleeding.

Transplanted liver working well

At this point I was told that a clot in my liver had been found and I’d need a third transplant. I was assessed for it, but it was decided that it was best that this didn’t go ahead and luckily enough my liver levels returned to normal and so far my liver seems to be working well.

I spent Christmas, the new year, my parents’ birthdays and my 24th birthday in hospital, but luckily enough in February, when I was just under three months post-transplant, I was allowed home. Since then I’ve been doing well. I’m extremely grateful for my donor and hope that my liver works well for as long as possible.

Antonia meets her friend's new baby
a few days after leaving hospital

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