What are your experiences?

[Eeyore1lucky]

Hello everybody. I am absolutely terrified as I have decompensated cirrhosis newly diagnosed. Lockdown has meant delays in seeing a specialist and I have oedema and ascites. Read online that life expectancy is 1 to 3 years and am just so scared. My fibroscan was 21.3kpa.

[AyrshireK]

Hi Eeyore, welcome to the forum, sorry to hear about your condition. When did you receive your diagnosis? Are you in the situation where you have not yet seen a specialist or plans put in place for treatment? - in light of ascites you should still be being seen to manage any necessary drains etc. Fluid from ascites can become infected so it is considered a medical emergency and you do need to seek medical help with it (regardless of the cv-19 situation). Your GP should be able to gain you access to emergency help and it might mean you do have to go to hospital. People are being urged not to neglect other health conditions even with the cv-19 thing going on.

Katie

[Hidden]

Welcome Eeyore1lucky

You may find it helpful to contact the British Liver Trust helpline:

[e-mail] or telephone [phone] (Mon-Fri 10am-3pm)

Best wishes.

[Bootandall]

Hey Eeyore,

Love your name, l played Eeyore in a community theater thing at the local mall when l was in high school! 🎭💞

No matter how manic Tigger got, l hung my head and said "Nobody likes poor old Eeyore" to a chorus of shouts, no, no, cheer up! The children kept patting me and l actually felt bad for them. LOL

Hope you get the care you need, l too am surprised you were diagnosed with ascites without any follow up.

Bbfn. x

[mattymoo33]

Hi there. I was diagnosed with decompensated cirrhosis in 2017. I stopped (with help) drinking, started to eat healthily and found some exercise I enjoyed. I am currently on the transplant list and despite several recent hospital admissions, I feel very positive.

Give the British Liver Trust helpline a call for more information and support.

Take care. 🌞xx

[Hidden]

Good morning Eeyore,

So sorry to learn of your diagnosis. With ascites, it shouldn't be left, regardless of the lock down. My son is in the same situation as you and had ascites drained, last week.

Take care, stay safe and stay well.

Annie

[Artemis61]

Hi, my brother was hospitalised with decompensated liver cirrhosis, ascites & odema as a result of regular heavy drinking & meds. Please see your specialist about the ascites and odema. I will tell you my brother's story, not to scare you, but to hopefully show that there's light at the end of the tunnel if you follow the medical advice if your specialist. My brother went yellow after quitting drinking, within days he was in hospital and to cut a long story short, given a 20% chance of survival. He had a drain for ascites, given water tablets for odema but most importantly, was given a feeding tube which made sure he got all the nutrients he needed to fight. 7 weeks later he left hospital, frail but alive. We're now 6 months on an all his bloods/readings are back to normal, and I mean normal for a person without cirrhosis. The only issue he has is low platelets, so he's extra vulnerable and this time with Covid-19. Our last visit to see the consultant in January resulted in the Dr saying that he probably wouldn't need a transplant for 10 years, IF at all..!

It's been a very traumatic time but I feel we have come through this, we're still not out of the woods but my brother is here and that's all that matters. As I said at the beginning, please see your specialist, get the ascites and odema under control and see a dietician, they really did turn things around for my brother. Also if you cirrhosis is a result of alcohol, please stop drinking if you haven't already. The liver can recover, my brother is proof of that. The scarring will always be there but, in my brother's case, his liver regenerated very slowly, but enough to make his numbers within normal range and this has removed/delayed his need for a transplant. Stay safe ❤️

[12345t]

Hi, sorry to hear that x you can be ok an manage it x I know it's frightening especially finding out at this worrying time anywsy. I can say my fibroscan was 25. I had acites too and decompensated with varicies. That was 2017, I went in rehab. Hospitalised for a drain. Now I'm compensated with no return of ascities . I eat low salt diet. And on carvelidol and lansoprazole. Hope this helps. Sending hugs🤗🤗🤗🤗❤. Grateful everyday .

[Eeyore1lucky]

Thank you all. I am not sure why alcohol related was tagged as mine is not. I am waiting to see the specialist but believe it to be NAFLD and I've had type 1 Diabetes for 33 years now. Am hoping to be seen soon. Wishing you all well and thanks again for the replies x