End Stage Liver Cirrhosis PBC/Alcohol/Fatty Liver

My husband has end stage liver cirrhosis and he doesn’t have many symptoms at all..How long does it take to develop severe symptoms? I am worried everyday since he was diagnosed!

[YummyBear]

Hi Papertowels, this is so very difficult for you both, frightening without a doubt, I do feel for you. I am a private person and have not discussed my health issues with anyone in my family or friends. I was diagnosed 5 years ago with Cirrhosis, purely by chance (found on CT scan for unrelated issue). I knew I had Non alcoholic related fatty liver disease 15 years ago but my GP at the time had not heard of it and I was not advised to cut back on carbs, sweets chocs and no exercise lifestyle. I was not overweight nor did I drink alcohol. I have U/S (next on on 29th June), blood tests and the endoscopic work each year but all is normal and without symptoms. I had a phone catch'up Appt with my consultant two months ago and I asked him how long in his opinion would I go on like this but he skirted around a direct opinion and I fear it is a question of Watch and Wait but I am scared. I took my grandkids out yesterday and walked from station to where we were going (25 minutes each way) and I noticed how sluggish I was. If only I had been advised 5 years ago about my fatty liver, then I would have been in a healthier place today. I wish your hubby well.

[islandanonymous in reply to YummyBear]

YummyBear, your story sounds very similar to mine. I feel the same way about my doctors...watch and wait definitely seems to be their way. We do what we can once we have the knowledge. If only they were just a little more forthcoming with it but my GE admitted that a lot of times they're kind of working in the dark and nothing is definite. Since I'm an optimist, I think that's good news.

[Zukosmile07 in reply to islandanonymous]

Everyone seems to be in the same or similar boat.....Push the doctors then push a little more and do your homework on your condition.

Once they realised I wasn't going away and studied my condition, their demeanor changed.

The disease is a battle, make sure you win the first fight. Don't be afraid to ask for a second opinion.

Good luck with everything....

[islandanonymous in reply to Zukosmile07]

Thank you. Unfortunately I don't think there's another GE in my province (I'm in Canada) and there isn't a single hepatologist. We have a terrible doctor shortage here. All the best to you too!

[Zukosmile07 in reply to islandanonymous]

Try asking for a referral.... Your doctor will have information on the nearest specialist consultant.

Stay strong.

[AyrshireK]

There is no reason to assume that your husband will inevitably develop serious symptoms provided all causes of his cirrhosis are tackled/treated & doctors continue to keep an eye on him with 6 monthly scans and bloods.

PBC can be treated, complete cessation of alcohol will stop that attack on the liver and healthy eating and exercise can help reverse the attack causing fatty liver. Few symptoms is great news, hopefully hubbies liver can remain stable for many years to come and even improve to a degree.

Learn about cirrhosis to make sure you keep an eye out for any signs of worsening but it sounds like it's been caught early enough to hopefully take actions to stop further damage and even perhaps reverse some of that which has been done.

It's in hubbies power to stop his liver from deteriorating he just needs to do all he can to look after his liver going forward.

Katie

[Yellowsydney]

Hi, only symptom of liver disease I had was vomiting up blood, none of the common symptoms, felt perfectly well and lived a normal active life. When a liver transplant was first mentioned I told the doctor not to be so stupid as I wasn't ill, it took several doctors to talk me into it. Don't worry until something actually happens as it possibly won't. It was 8 years after my variceal bleed, symptom of end stage liver disease before a transplant was mentioned, I had NASH cirrhosis.Enjoy your life

Hilary

[Couch1 in reply to Yellowsydney]

Hello Hillary,

How is your varisces? Healed, hopefully. I had mine sewn up 7 years ago...wondering how long that lasts?

Ty 💓

[Lindc]

I was diagnosed with cirrhosis out of the blue when my gall bladder was removed three years ago. I have since not had any signs or symptoms. I was shocked at first, of course, but am a pretty optimistic person and luckily had no problem with shutting alcohol out of my life and continuing the healthy diet and exercise I was already on as I have type 2 diabetes. I am 75 and determined to live each day happily and fully. I've had no monitoring for a year because of Covid but have read enough to know when to dash to A and E! Meanwhile, life is for living and each day is to be appreciated and enjoyed. I always feel sorry for people with health anxiety who seem determined to be diagnosed with cirrhosis!

[obssessive69]

I need to adopt your attitude!

[islandanonymous]

I'm wondering how your husband is now. I also have cirrhosis and have no symptoms.

[ReturnofthePhoenix]

If he stays alcohol free and keeps a good diet its not a death sentence. Its not always a matter of when will he develop these symptoms. He may never develop them . Liver disease caused by a catalyst that can be removed, in this case alcohol, can produce incredible results. Cirrhosis isn't static and does not definitively follow a course with out continuous injury all the time. If hes doing well and feeling well there is nothing to say he can't slow or halt the progression. In cases where reversal of some of the damage has occured is when again the catalyst has been removed. Hep c patients have seen a reversal in cirrhosis. Why? Because they were cured of the disease that insulted the liver. If he has removed alcohol the insult is no longer present. I was diagnosed with alcoholic cirrhosis 5 years ago and im fit as a fiddle so. Just to give the possibility to your mind.