Indre’s story: “I hoped my ascites was ‘lockdown weight'”

Indre had a liver transplant in March 2021. She blogs about her liver health story and has shared a summary with us. Thank you, Indre!

I am full of surprises like a giant Kinder Egg!

My name is Indre and I am a mother of three wonderful boys. I was diagnosed with autoimmune hepatitis (AIH) in 2005.

At the time of diagnosis, I already had cirrhosis. Later, an MRI scan found evidence of primary sclerosing cholangitis (PSC). Both were controlled with medicine and I lived pretty normal life.

After 13 years, things started to change and I developed portal hypertension with varices, which required endoscopic treatment with banding. For nearly a year I was going to hospital every 4 to 6 weeks for some more banding, after which I couldn’t eat for a week. The pain was horrible and I lived on mashed food. In ten months the varices was gone - it was such a relief. I hoped that I could finally rest from frequent trips to hospital and boring mashed food.

Ascites

I had a nice break for about a year, but in December 2019 my tummy started to expand. The feeling was new and very uncomfortable. I thought it was bloating but at the same time I was having that bad feeling it might be ascites. Overall, I felt well so I didn’t rush to A&E.

Unfortunately it didn’t go away, so just few days after new year I had to go to hospital. They ordered a scan which later showed a tiny bit of ascites. It was a very scary time for me to hear the word ‘ascites’ but I still was hopeful that with a low salt diet it would go away and it really helped for some time.

Towards the end of January of 2020, I had my yearly endoscopy. I was really positive and was sure that all going to be ok, but it wasn’t. I had stage 1 varices and my dose of beta blockers was increased again.

Lockdown

Then in March 2020 the world was shaken by Covid-19. The first lockdown happened, schools were closed and home learning started for my kids. It was a crazy busy time as you can imagine with three boys at home. But it helped me to forget my problems and carry on with my life. Day to day I was noticing that I was getting tired quicker. My legs were swelling and my tummy was expanding again.

At first I was hopeful that it was just a bit of ‘lockdown weight’, but it wasn’t. This time ascites was building up at an incredible speed and by July of 2020 I looked six months pregnant. I had to think twice before going out, so people wouldn’t congratulate me on my 4th pregnancy.

In July I had an appointment with my consultant at King’s College Hospital and my ascites was confirmed. I was started on diuretics which helped me amazingly! I lost about 6kg of fluid from my tummy and legs in less than a week. However, in few weeks ascites started to build up again. I was really tired but my sleep was terrible.

In September 2020, my doctor mentioned the word transplant. I knew it might happen one day, but still was very shocking to hear that this might be sooner than I thought.

October 2020 I had a CT scan as part of my transplant assessment. It found a clot in the splenic vein and a blockage in my bile duct. Bloods showed anticardiolipin antibodies which meant my blood was too thick. I am full of surprises like a giant Kinder Egg!

Transplant

Early November I had my transplant assessment which went well but the decision couldn’t be made as I first needed a procedure called ERCP. While I waited, the days were slow, and I felt very emotional not knowing if I would be on the transplant list or not.

In January 2021 I caught Covid. Luckily it wasn’t as bad as I thought it would be. I lost my sense of taste and smell, had low grade fevers and extreme tiredness but in a few weeks it was gone and I finally got a call with the date for my ERCP. On 17th February 2020 I was placed on the liver transplant list and soon after I received my liver transplant on 21st March 2021. Three weeks after transplant I was discharged from hospital and continued my recovery at home.

 

Please do not reproduce or republish the patient stories on this website without our express written permission. If you would like to use this content please email at us media@britishlivertrust.org.uk to discuss. You can view our full websites terms and conditions here.