How long can someone live with stage 4 cirrhosis?

[Memoore686]

I am new to this here and I have stage 4 cirrhosis I live in the u.s. and the doctors here are very judgemental. I have Cushing's disease which caused Nash. And by the time they figured anything out I was stage four. They won't tell me much I'm not sure why. I'm itching quite a bit and I get really minor nosebleeds, my question is how long can somebody live with stage 4 cirrhosis? I know it can vary , I feel like I'm teetering on decompensated cirrhosis.

[AyrshireK]

It's shocking that your doctors are being so judgemental when you really need their specialist care and help. No one can give you a time scale to liver disease, my husand has been diagnosed since April 2012 and in the grand scheme of things is 'doing ok'. His consultant has patients with cirrhosis on his books who have been diagnosed for 20+ years. It's a how long is a piece of string type question.

The British Liver Trust has page specifically for Non-Alcohol Related Fatty Liver Disease including NASH which you might take a look at and see if there is anything at all you can do (lifestyle wise) to help your condition although it might be difficult with your Cushings Disease too. Page is at:- britishlivertrust.org.uk/li...

For advice and further information about Cirrhosis there is a page on it too which might help you with symptoms and staging information. britishlivertrust.org.uk/li...

Now that you have a diagnosis you need to be regularly monitored by ultrasound scan and regular bloods to keep an eye on your liver and make sure there are no lumps and bumps occurring in the liver plus you might want to find out if transplant might be a treatment option in the future.

All the best to you, Katie

[Hidden in reply to AyrshireK]

Hi

It's awful the way you've been treated a agree with Katie, make sure you seen regularly to keep an eye on how things are doing..

I have Nash, this seemed to cause itching so my Dr out me on fexofenadine 180 mg, this has really helped. Hope you get some proper answers Lynne

[Memoore686 in reply to AyrshireK]

I was actually diagnosed with stage 4 cirrhosis 3 years ago but the doctors here are horrendous it's almost like saying a naughty word. If I have to go into emergency for anyting the minute I mentioned cirrhosis the whole attitude changes and not for the good. I'm kind of caught in a vicious cycle here I'm not eligible for a transplant because the Cushing's disease and they won't do surgery on the tumor in my brain that's causing the Cushing's because of the cirrhosis, uggg without tumor removal there's no hope to stop the cirrhosis. I had to fight for 2 years just to get a biopsy after I found out my liver enzymes had been high for over a year!

But I do have a question is it possible to get jaundice without the eyes turning yellow?

[Memoore686 in reply to AyrshireK]

Thank you so much for responding I have another question I keep getting diverticulitis and intestinal infection is that common with cirrhosis that you know of?

[AyrshireK in reply to Memoore686]

Sorry i've no idea about the bowel issues, certainly not something i've heard of as a cirrhosis symptom.

[Hidden]

Hi Memoore686,

Sorry to hear you aren't being treated well. We also live in the U.S., but both our GP and the liver doctor are great, not only with my husband [the patient]. but also with me even though I ask a lot of questions.

Is there a possibility that you could find different doctors or visit a nearby hopital instead of the one you currently deal with?

Wishing you the best.

Mary

[Thistle09]

Hello, Memoore. In my experience, doctors are reluctant to answer even simple questions to which they have no definitive answer. And the most honest physician may not feel comfortable saying "I don't know," if the condition is as rare and complicated as yours. To me, this is counterintuitive. In other words, one would think "they" would defer to a specialist in the latter situation, and promise to do a little research in the former. Sigh... In any event, it is inexcusable for medical personnel at any level to be rude and judgmental to you. If it's your own doctor, find another doctor. If it's a member of the medical staff, calmly register a complaint with the hospital and ask that that person have NO involvement in your treatment.

You have probably read this: mayoclinic.org/diseases-con... I offer it primarily to inform other readers at this forum. You've mentioned that the cause is an inoperable tumor, so I will leave it to you to explain further, only if you wish. Do explore the Mayo Clinic site, although much of the information is available only to doctors. You may be able to contact the Clinic to ask for recommendations of doctors near where you live. Also, there are online support groups, such as this one: dailystrength.org/group/cus... , as well as local groups. I found a bunch of them with a simple Google search.

My own recent intensive blood tests have shown that I had hepatitis A at some time in the past. I believe I know where I was (in a country where hep A is very common, indeed endemic), because I had other symptoms that fit, but no jaundice. In fact, I have never had yellow eyes OR skin, despite having now progressed to Stage 4 cirrhosis. Years ago I had a bout of itching all over, but not recently. I don't think one necessarily has to have ALL of the symptoms. Don't worry yourself with trying to fit everything into the jigsaw puzzle. It sounds as if you already have enough physical symptoms to frustrate a saint.

As for diverticulitis, here's the Mayo Clinic again: mayoclinic.org/diseases-con... Of course this condition can co-exist with NASH, but it sounds to me as if diet can keep it under control.

Best of health to you! I do hope to hear, very soon, that you've found a new doctor!