just had a telephone appointment with my consultant’s registrar. Bloods normal and ultrasound showed no sign of enlargement of spleen normal flow but still cirrhosis but no signs of decompensation .
He stated my condition usually only survives 15 years but if I start to decompensate only two years . He was so awful. I said is there any positive news he said well just don’t drink . My telephone appointment was meant to be 5:30 pm but rang me this morning.
I think I may complain
I wouldn't stress about so called 'life expectancies' or things this doctor has reported. Absolutely no one can give you a clear life expectancy/prognosis. My hubbies consultant has repeatedly told us that he has patients on his books who have had a cirrhosis diagnosis for 20+ years and who are no where near transplant needy nor at deaths door.
As you've been told that whilst you have cirrhosis there are no signs of any decompensation, have normal portal veinous flow, good bloods etc. The important thing now is to protect the liver going forward - if you have PBC then it requires to be treated and monitored, if it's alcohol related then obviously continued sobriety is needed. Other things like trying to avoid infections, eating healthily and exercise and stuff are also important.
There are loads of people who report having cirrhosis diagnosis's for a great many more years than the 15 this doctor has stated today.
Put it behind you and concentrate on living your best life possible and if at some point you do start to deteriorate then you are still young enough to potentially be considered for transplant.
Katie
And my doctor has said the same thing, he has severla patients who have survived not just 20 years but even 25 years and more (he doesnt have anyone more than that because he has only been a doctor for 25 years). He says this is a disease where so much is TRULY up to the patient. But the drinkers, no matter what they promise, just keep on drinking (in many cases, of course there are exceptions). The bad eaters might eat good for a few months and then its back to the cakes and crisps. If your bloods are good, spleen is good, just live healthy and and there is every chance you could be one of those 25 and more year survivors. Plus just think now with Articical Intelligence - the advances that will be made in medicine and chemistry and all that over the next two decades. Keep your chin up!
Second the above comment. My gastroenterologist told me that if I stay off the booze, eat healthy and exercise there's no reason why I can't have a normal life span.
Thank you why can’t o have a doctor like that !
Absolutely echo the previous two comments. Provided you look after yourself you can have a normal life expectancy.
This is why I just get on with it and ignore these people. We all no the issues we have but they are not God and have no idea what will happen. Let’s face it we could get hit by a bus tomorrow …just do the obvious, eat well , restrict fat and sugar and enjoy the sunny days ahead. Your body will do what needs to be done not some jumped up registrar.
he sounds like a right charmer. The thing about this 2 year life expectancy with decompensated cirrhosis is firstly it’s nonsense, there are many examples of people living far far longer with both decompensated and compensated cirrhosis and secondly decompensated cirrhosis isn’t a one way street. It can be triggered by something, for example another illness like Covid or in some people drinking to excess. If you stop drinking, recover from Covid, over time your liver can return to a compensated state. So what happens then, does the clock re set? It’s utter nonsense and you would be best to just ignore it, live a healthy life and work on the assumption that if you do everything right and take care of your liver it could in turn repay the favour and take care of you for as long as you need it to
I was diagnosed just over 5 years ago with nafld and Nash. I bled out at home and died twice because variciles burst. My portal and messenteric veins were almost totally blocked. I had HE and ascites. 24 gastroscopies later, with over 70 variciles banded my liver is now compensated and I have gone from scans every three months to every 12 months. My consultant won't give any sort of prognosis as she says she is not the one who decides when we will die!! Follow the advice everyone has given and hopefully you will live a long, healthy life.
I totally agree with the other posts, keep healthy and you can expect a normal life expectancy. I don’t know if you asked for a prognosis, but even so he should have said that he doesn’t know because nobody does. I have cryptogenic cirrhosis, possibly caused by NAFLD and my consultant has never voluntarily offered a prognosis.
If things do deteriorate as the other posts have mentioned, a transplant could be an option, but there is a fair chance it wouldn’t be needed.
thank you everyone for the support you’ve been a god send and made me feel better
I think you should complain about him. There is no excuse to speak to anyone like this. Did he confirm through bloods/marker whether you have PBC? If yes, join the PBC Foundation for more clarity.
I hope everyone has put your mind at rest and you continue with you healthy, AF lifestyle.
My primary doctor told me I should live for decades.
My liver doctor said I should live a normal life span, that they just need to 1) make sure portal hypertension doesn’t develop (if so, control it), and 2) monitor for early potential signs for cancer. For all cirrhosis it is an increased risk for liver cancer, but for alcohol it isn’t as high as viral hep etiologies. I think it is 1-2%.
Just to let you know I myself had cirrhosis for 20 years before I got a transplant last year. Good luck 👍
Stay safe All
Dogbot 🐶🌈Dave
Hi, I have been living with cirrhosis, portal hypertension and varacies for over 17 years now. The varices did burst originally but after banding everything is now controlled with medication and the usual 6 monthly check ups. Also I still manage to work full time which is not bad for someone given 24 hours to live 17 years ago. Strictly no alcohol though.
Your doctor is an idiot. Rather than complain ask for a second opinion. I was diagnosed 18 years ago and was decompensated and on the waiting list for a transfer. Now I am pretty health. Cycle go the gym and ride a motorbike through europe. I get tired but guess what the other riders on a long trip as just as tired. I know many people who have lived past 20 years and on 32 and she died of something else at 90.
He can not predict how long you will live for no more than he has to live. Some doctors have strong religious beliefs are in the area of medicine.
What you must do is no alcohol or you will do more damage. Trust me you get used to it. Hve health balanced diet and get on and you with your life. My doctor said I will die of something else not great to hear but I get his point.
the first Consultant I saw was all doom and gloom, everything positive I said he came back with a negative. They said uo until recently tour liver can't repair it's with cirrhosis. Now they know the liver can recover perhaps not fully but enough to keep you healthy.
Don' be afraid to challenge him back. If if he quotes the PUG score that is for those who's liver has been so damaged that they are looking life expectancy, especially if the person carries on drinking. In new research it is becoming discredited for long term survival.Next time you see him/her challenge them back and ask how can he be so precise, then listen to the starting waffle that comes out. This type of doctor he scares patient's, get another doctor, you have an idiot. Think I will shut up now.
Hi, don’t worry too much just stay away from alcohol for ever, eat healthy and exercise. Diagnosed with decompensated cirrhosis 2022. Nearly wasn’t here and I’m doing really well now apart from taking some spironolactone and carvedilol for portal hypertension. They are saying that I’m nearly recompensated which is fantastic news. When I asked about life expectancy a few weeks ago, now they said no reason why I can’t live as long as anyone else provided I do the right things and have my 6 monthly ultrasound to check everything.
Try to keep positive and well done for abstaining from alcohol.
Don't ask. If they say why? Tell them you have not been able to build up a professional relation. You need not explain further. The staff will already know he it is not very good. adding you want to see someone you are more comfortable with. If your doctor is a senior registrar, he is a failed consultant. Don't be scared by him. You are the patient and deserve to be treated with extra.
Still feeling lost but frightened now!
Another initially frightening update...
Slightly vague lft question sorry
no banding required barely seen a varices
Newly diagnosed hubby feeling lost
