(Click here to read about ALD in our Liver Disease Guide)

My name is Amanda Casali, I am 54 years old (young!) and a liver transplant recipient. I was first admitted to hospital in July 2018; I went to Emergency Department (ED) because I had trouble breathing and thought I was having a heart attack. The ED doctor was alarmed by my liver enzyme levels and spoke to the liver team in St. Vincent’s University Hospital (SVUH). As it was a Saturday, he was advised to put me under observation and contact them after the weekend. I was put into an observation ward and my condition rapidly deteriorated. By Wednesday I was rushed to resuscitation in SVUH and subsequently admitted to St Brigid’s Ward (Room 20 – it’s funny the things you remember!). I had encephalopathy (confusion and agitation) at that point and kept trying to leave. All I remember of this was face planting on the floor while trying to get out of bed, so they put me under special supervision and had someone ‘guarding’ the door of the room.

I don’t remember much of this time. I was moved to another ward where I spent about two months with medical staff trying to stabilise me. I was told in November that I needed a liver transplant, which came as a huge shock as, until I was admitted in July, I had no major health problems. I was told when I was about 35 that I had a fatty liver, but it was never explained to me and I basically just thought “well, the rest of me is fat and now so is my liver” – and I carried on as normal
I have been excessively overweight for most of my life and in the latter years became quite a heavy drinker – a bottle of wine every night with a couple of glasses more each night at the weekend, and it was the combination of this that lead to liver cirrhosis.

Before I was placed on the transplant waiting list, I had countless tests and assessments both physical and psychological; the latter was to ensure that I had committed to never drinking alcohol again.

I was finally placed on the waiting list on 6th June 2019. One week later I was admitted with a bad infection in my knee from a fall. I developed an allergy to the antibiotics I was prescribed which led to a drastic reduction in my platelet count for about six weeks which suspended me from the waiting list, so not the most auspicious start!

I had various ups and downs while on the waiting list, mainly downs if I’m honest! I had a problem with ascites (a build-up of fluid in spaces in the abdomen) which wasn’t possible to remove as the fluid didn’t collect in one cavity but in numerous pockets so inserting a drain into many areas would cause an infection risk. I also couldn’t take furosemide (a common diuretic) orally as it reduced my sodium levels, so I had to be admitted to have IV furosemide and albumin treatment to get rid of the fluid. I settled into a routine of going in for five to six days, losing10 to 12 kg of fluid, going home, gaining 10 to 12 kg of fluid over two weeks and going in again for a week, etc, etc.

I had bad veins and canulation and taking blood was always a major problem/challenge; I had to have a PICC line (peripherally inserted central catheter) on each admission, to allow access to the larger central veins close to my heart, so eventually I was sent home with the PICC line. Unfortunately, this got infected, and I ended up with sepsis. I also had pneumonia and a recurring chest infection. I was put on a permanent antibiotic and, thankfully, this resolved the infection.

I was 18 months on the waiting list – covid-19 didn’t help that situation – when finally I received my transplant. There was no drama about getting to the hospital as I was an inpatient at the time, which I felt a bit deflated about as I had imagined the dash to the hospital so many times. It’s funny what goes through your head at times like that!

During the transplant surgery, a gastric sleeve was undertaken at the same time to get a lot of weight off me to give the graft / donor liver the best chance. I was five days in ICU and went home 22 days after my transplant. Unfortunately, I was admitted two weeks later with blood clots but since then I have been relatively problem-free. I have lost 30kg, am going to the gym regularly and I have signed up for a triathlon in July of this year.

I suppose my reason for sharing my story is that there is light, health and happiness at the end of that dark tunnel and no matter how desperate, scared, hopeless and alone you feel, that it DOES get better, you will get your transplant. I think this sounds better coming from someone who has been on that journey, the professionals know it is true and tell you it’s true but I am living proof of that, and, hopefully, you will be too.

Amanda xx