I've been lurking since getting my diagnosis of cirrhosis in July last year and I wanted to share my story.
For some backstory, I had abdominal pain and a distended abdomen for several weeks which I just saw as me putting on weight due to the lockdown. So I started to make improvements to my diet and I have never been much of a drinker, as well as increase my exercise. The weight continued to pile on unfortunately and on the 21st July I woke up bright yellow. The doctors first assumed it was my gallbladder that was causing the jaundice and ascites but after a CT scan, my liver showed massive amounts of scarring.
I was admitted into hospital onto a Covid ward due to the lack of availability of rapid testing and luckily I didn't catch it from the other patients. I was moved to a Covid negative ward where we found my liver was decompensated and my spleen was enlarged. I had chronic end-stage liver disease. They arranged for me to be discharged and have an endoscopy as an outpatient which revealed I had very low grade varices caused by portal hypertension, but they are so minimal they didn't prescribe me anything for them.
I was referred to St James in Leeds and I underwent a transplant assessment, where I had numerous tests including a transjugular liver biopsy (which is honestly not that bad if anyone is waiting to have one, worst bit is it going through your heart but not painful at all, just uncomfortable). The results showed my liver was burnt out and I would require a transplant but they still don't have a cause? All my tests came back perfectly normal bar my liver and my clotting. I'm not diabetic, my blood pressure is normal, bones are healthy, kidneys are fine as are all other major organs (bar the minor varices).
I'm on a low dose of amiloride and I haven't suffered with ascites since starting the water tablets. I also haven't suffered with hepatic encephalopathy or any confusion for that matter. My doctors think I've been dealing with the ongoing damage to my liver for most of my life but it doesn't add up with anything they're used to coming across. They just keep telling me I've been very unlucky. I'm doing my best to remain as positive as I can, I'm focusing on getting as healthy as possible and getting my body in the best shape for the eventual surgery.
I've now been on the transplant list since November and going through all this during Covid, I will admit has been hard. I lived almost 28 years not knowing anything was wrong with me, and then finding out my liver was diseased and within 4 months being on the transplant list. I don't know anyone personally who is going through a transplant, let alone anyone with cryptogenic cirrhosis. It would be really nice to hear if there are any similar stories to mine?