Life expectancy

[Nictesla]

I have just found out that my liver cirrhosis is at stage 4. how long do I have before I pass away ? sorry its morbid but I really need to know please. P.S. I am not afraid of dying.

[AyrshireK]

What are your current symptoms that make you stage 4 cirrhosis? Stage 4 cirrhosis is normally categorized by bleeding +/- ascites.

Is this a mix up with stage 4 fibrosis which is a.k.a. cirrhosis. Cirrhosis then has 4 stages.

Stage 4 cirrhosis is decompensated and the liver would really be struggling.

Is there any hope of transplant assessment? You might want to push for that if it's an option.

Katie

[Nictesla in reply to AyrshireK]

Thank you Katie, I got a letter from my doctor today, I am also passing blood in my urine too.

[AyrshireK in reply to Nictesla]

If transplant is an option I wouldn't hang about and would definitely request referral to a transplant unit for consideration for assessment.

[Owlie]

Never give up... x

[jazzjam]

I cannot answer your question at all but I am shocked you just got a letter, that’s terrible. I would phone your doctor or consultant to get an appointment, surely they are going to discuss the results with you and give you the options for your future. All the best.

[CarpeDiem11]

I agree this is a simply shocking way to find out! Surely you are getting an appointment to discuss your options. I hope someone is going to explain your options to you and shows some kindness whilst they are about it. Sorry to hear this news by the way, and hope that you have good support for whatever lies ahead. All the very best.

[IPCN]

So sorry to hear you got such dreadful news via letter. I agree with the others who have replied and would urge you to seek support. Hopefully there will be positive options which can be considered. Good luck, love Pam x

[chrisw740]

Hi, sorry to be a pain by asking the same question as Kate, but stage 4 is totally decompensated, with certain very serious physical complications/changes ... are you sure it was not F4.... as per the fibroscan score you refrencend when you joined this forum? I simply ask again as you had no varices confirmed recently and last week your bloody urine was deemed to be related to your kidney stone? Either way its clear you're having a really rotten time and the letter has understandably knocked you sideways. Very Best Chris

[Popel]

Hi there.ive read but who’s to say if it’s correct that from your first bleed you’ve a life expectancy of about five years.my five years would of been up in June this year and before my transplant in February I was so ill I didn’t think I’d make the year out.but I’ve had four bleeds and dozens of bands in the five years also my cirrhosis was exasperated by a partly blocked portal vein.sorry if it scares people but you did ask. Paul

[Supportinghubby in reply to Popel]

My husband had bleeding varices but through giving up alcohol, changing diet etc. his liver is now compensated and his Child score is A. So, although I'm sure what you say is true in some cases, a bleeding episode doesn't always lead to a short life expectancy if you're fortunate enough to be able to make lifestyle changes that can improve the condition (I hope so anyway!)

[Popel in reply to Supportinghubby]

I’m really pleased that your husband has done so well.I did say my condition was different as I had a non occlusive portal vein thrombosis and in my case it never returned to being compensated whatever I did.even dramatically changing my lifestyle didn’t reverse it.id imagine that most on here have done everything to do the same.the amount of time spent researching diets and cirrhosis websites it was almost a full time job.my consultant even mentioned to me that even after everything I’d done after my first bleed it’s a shame it never improved.so it does happen and people shouldn’t be disheartened because as in your husbands case it can improve.wish you and your husband all the best.paul

[Supportinghubby in reply to Popel]

Thanks Paul. So glad you were given a second chance with your transplant & hope that Nictesla will have this opportunity too if lifestyle changes don't improve his symptoms.

[Popel in reply to Supportinghubby]

Hi thanks.i hope so to because it’s such a horrible disease once it gets a hold.its not a nice way to go.thats why this site is so important wether it’s people sharing their experiences and educating people who are worried about their liver health. I’m really glad that people like your husband do get better and hope Nictesla improves his health.all the best.paul

[Fortnight38 in reply to Supportinghubby]

Hello

Just read your post about your husband's bleeding varices due to giving up alcohol and changing diet. My husband got diagnosed with cirrhosis and varices 10months ago. He give up alcohol yesterday,finally!! and is eating healthier. I thought this would reduce the risk of bleeding varices? Any info would be appreciated. Thanks

[Supportinghubby in reply to Fortnight38]

Hi Fortnight- great your husband has given up alcohol and changed his diet. Obviously I can only speak from experience & can't give medical advice. My husband went to A&E (on his birthday 😢) vomitting blood. For a while we thought it was an ulcer, then his eyes started to turn yellow & his blood tests came back with problems so they said it was most likely varices. By the next day he'd had the varices banded and was told by the consultant it was cirhossis & he needed to stop drinking. Such a shock. He hasn't drunk alcohol since hearing those words. He came out of hospital after 5 days, ate the diet recommended for rebuilding muscle loss & has just continued to improve every day. Does your husband take anything for portal hypertension? My husband is on beta blockers & with the banding that has seen them off for now. I hope your husband starts to see improvements soon - it can be a long process. Is he due a check up at any point?

[Fortnight38 in reply to Supportinghubby]

Hi, thanks for reply. He's not on tablets they said the varices and cirrhosis were early stages that was 10months ago but he still has drank about 6/8 beers most nights since he was given the news. So I'm worried at what extra damage that will have done. He's due to get ultra sound at end of month, but I don't think they will show the true damage. Sorry to hear about your husband's condition.

[Popel in reply to Fortnight38]

Hi there.It’s imperative he stops drinking now.or like most will end up like myself talking about being a Transplant recipient or something even worse happens.my cirrosis was a mix of hepC and drinking but only socially.so as soon as I had my first bleed nearly five years ago i was told that I’m very lucky this time as one in two die from the bleeding.your husband is at a bigger risk for having another one if he carries on drinking.his liver is damaged enough and struggling to push blood through it which is causing the hypertension and subsequently the bleeds.the more he drinks the more his liver is getting scarred .he can reverse this if he’s only early stage cirrosis.sorry to be so frank but I’d hate to see anyone else going through the nightmare that myself and other forum members have gone through.remember it is reversible.i wish you and your husband all the best and I really do.take care.paul

[Fortnight38 in reply to Popel]

Thank you for this reply. Honestly is the best policy. He hasn't stopped like he planned. He's got alot going on in his personal life and uses alcohol to de-stress, which doesn't really work. He has cut down. He has finally managed to get appointment with his own doctor next wk and he is going to be honest with him, I will also be there. He actually hasn't had a bleed yet. Although October 2016 he needed a few blood transfusions because he was severely anemic, they did lots of tests but never found a bleed. We were told from 1 doc in hospital he might have liver disease and had fatty liver. 2 wks after getting out of hos we went back to local doc and he said he did not have liver disease, going off blood tests. Got diagnosed with varices in Feb 2018 and cirrhosis July 2018. Results came back as alcoholic and non-alcoholic!!! Thanks.

[Kev12564]

Sorry to hear this, really. Your earlier posts sounded so upbeat and promising. Alfredthegreat on here had a transplant at a few years older and can probably offer good advice. All the best for now.

[Cueball]

I am really surprised that your not on the transplant list. Shocking really. I was similar 4 years ago and I'm still here, by God's grace. Never ever give up. I didn't

[davianne]

Having been told that you have stage 4 cirrhosis by letter is unforgivable. You should complain to PALs. I am 72, and have been told a Tx at my age is "unlikely", although at the moment my cirrhosis is compensated.

David

[Aangel]

My husband had cirrhosis of the liver with having to be drained every week . He then had a drop in sodium level which prompted hospital time. While there he worsed and had episodes of hp. Was placed on hold on the list and was taken to ICU where he slipped into a coma and his organs began to shut down. With the help of his team and by the Grace and prayers to God he fought for his life. He was given a 20% chance of making it through the night but, he did! He began to slowly improve and came out of coma after 10 days. Drs felt he was stable enough and put him to top of list. Within 2 days he had his transplant. That was 1 year ago and he is back at work and doing great! Drs had told me he was hours away from death but, we never gave up. Dont give up! And ask your dr about your options.

[CarpeDiem11 in reply to Aangel]

So good to hear such a positive story and I hope things continue to go well for you and your husband. All the best

[Aangel in reply to CarpeDiem11]

Thank you! We definitely count our Blessings each day

[Hidden in reply to Aangel]

Wow angel! That is so good to read. What a star he is, and you are of course, for going through that. Yoiks!

Good luck to you both.

And back at work. Wowee indeed. He certainly puts me to shame.....

Miles

[Danubian]

Nictesla - I'm praying for you brother! Hold tight!

[Nictesla in reply to Danubian]

Thank you Bro. Appreciated greatly

[Dldtx]

That’s a great question but I don’t think that’s a healthy way to think, I can guarantee you can’t pick a day or a date nor can you approximate , you got a ways to go yet with this disease , I have been rolling along now with stage 4 hepatitis C Cirrhosis for 5+ yrs my memory isn’t good particularly due to my hepatic encephalopathy I get sick same as you at times. What I did is I got all my affairs in order sold stuff gave away stuff had a good laugh and stopped worrying about death and more about living. Personally I don’t want a transplant unless it something new that would help others in the future an they can study it. Your best bet is a diet and you have to stop harming the liver. Your life expectancy is definitely shortened without a transplant but it’s not the end to end all. Ayrshirek is right about ascites, it’s after they drain your ascites several times and you are on Dialysis in the hospital you might be close to getting your answer.

Good Luck

DlD 🤠Tx

[Nictesla in reply to Dldtx]

Cheers friend great sense of humour and very encouraging to read.

[Diesel101]

I would just like to say don't give up hope. My husband was sent home last Christmas with palliative care and told he had less than 3 months. He was told he has decompensated liver disease (end stage). He saw the consultant a couple of weeks ago who was shocked that his liver has signs of improvement, bilirubin levels are coming down and protein levels are slowly increasing. He has been told that once he has his mobility back they well consider a transplant but if his liver carrys on improving he may not even need it. Its been so strange being told he will die to now having some positivity. Been such a rollercoaster these past few months.

[alfredthegreat in reply to Diesel101]

Similar sort of story here diesel. Spent 4 years classed as terminal and told no hope of a transplant and now here I still am 8 months post transplant. Rollercoaster becomes an understatement after what a lot of us have been through! So pleased that your hubby is doing well and continuing to do so. All the best. Alf.