Chronic Cryptogenic Cirrhosis at age 27 - British Liver Trust

British Liver Trust

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Chronic Cryptogenic Cirrhosis at age 27

worldprincexx
worldprincexx

Hi All,

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?

Sean.

5 Replies

I can't say I've experience much of that. I'm just dealing with some RUQ pain and a long history of alcohol abuse. Hopefully it doesn't come to that for me. It will be extremely difficult for me to get on a transplant list what with the prior history. You sound like a young, well put together guy though. There are plenty of people here living healthy normal lives now thanks to a few doctors and someone's immeasurable gift. I hope that gift finds you well. Keep us updated. Sometimes it helps just to talk to people going through similar things.

worldprincexx
worldprincexx in reply to Yarkis

I'm sorry to hear that, I experienced RUQ pain for some time before being admitted last year, but I'm fortunate that I haven't experienced any since being discharged. I hope the pain eases for you soon!!& I completely agree, this forum has been incredibly helpful just reading other people's stories and experiences whilst navigating this. Thank you for the well wishes!

Hi Sean,

I went a long time without getting a formal diagnosis and my cirrhosis too was categorised as cryptogenic for a long time. Unlike you though I was at least aware something was wrong with it, lol, just not the cause. You've probably looked this up already, but cryptogenic just means they don't really know the cause, lol.

I did eventually find out the cause, but only after I had my transplant. It turned out I had PSC in the end which was one of the early suspicions given the blood test patterns observed. It just wasn't clear on any of the scans or biopsies I had.

I wouldn't jump to the conclusion you too may have PSC. I only say this really to let you know that in some cases finding a cause can be problematic and can take quite some time, many years in my case. Even though your disease is quite advanced, it is is still early days since you first presented to the doctors. It may therefore be that as time progresses you may end up with a more clear diagnosis. It may even be after transplant. The good thing is that your management will not be that much affected.

Hope you get your transplant soon. It made a massive difference to me, and finally getting a confirmed diagnosis was also a relief too.

If you have any specific questions about the transplant feel free to ask. Even if its just the more practical and mundane stuff, being prepared I always found really helpful and reassuring.

Good luck 😊

Kristian

Thank you Kristian, that's incredibly helpful! I completely agree, I'm not too hung up on the reason that has led me to this point, my only thing with it is to make sure it's not something within my control that has led to it and that I don't repeat that behaviour.

Trust5
Trust5Administrator

Hello,

From being ok (or so you thought) to being told you need a liver transplant is an awful lot to get your head round. When you do get transplanted and the pathologists get a chance to have a close look at your removed liver it is very likely that they will be able to come to a conclusion as to what has caused your liver disease.

Most transplant centres will have support groups of some kind - for those

waiting for transplant and for those who have had a transplant. There is nothing quite like having the opportunity to speak to someone who has been through the process. Your transplant coordinators will be able to tell you what is available.

The British Liver Trust does have some 'virtual' support groups although these are not specifically aimed at just transplant. If you are interested , here is the link:

britishlivertrust.org.uk/br...

regards

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