18 years ago I was very ill with Hepatises/cirrhosis. Since then I have done ok. I have portal hypertension but no varices. Occasion fluid retention in my legs but no ascites. Enlarged spleen 17mm.
I have been asking the doctors if I can live past 20 years with this disease. The responsive have been evasive and lot can happen to two years but none of them have said no you can't or yes you can.
At the moment I fairly fit 67 year old, exercise. go to the gym. I have sic monthly check ups bloods and scan and there all pretty much the same.
So my wife thinks I will die in two years as that is what Dr Google says. Does anyone know why the PUG score say 15 to 20. I don't understand that at 20 years your number is come what may.
Any thoughts would be very helpful.
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No medication. The spleen has increased in size on occasions and then decreased again but has always been enlarged. I was in a RTA and had a grade rapture to the spleen. I was in ICU for a few days but the spleen healed by it's self no treatment just observation in case it ruptured but that was eight years ago.
I dont think even the most experienced doctor can say how long you have as long as your condition is stable. I've had cirrhosos for 30+ years with portal hypertension. Originally my spleen was enlarged but now it is normal and my varices have been controlled by beta blockers. I try to take care of my health, exercise when I can and I try to live a relatively normal life. Good luck.
Well done, you that's encouraging for us all. Even if they had said what you have I would have been happy. But it was the evasive answers that made me wonder. If they had said could be six months could be ten years or more due to the variables we can' be certain I would have thought makes sense. All I was looking for was a yes you can or no you can't but we don't know because other factors may come into play. I would have been happy with the answer. I was left with the impression 20 years and that's your lot.
Thank you for your response and putting it in a prospective. So I am back to living for the day, Do all the healthy things I have been doing and get on with my life.
I hope you remain well and you have been most helpful.
hey 30 plus years plus !? That is so impressive! Thank you for some inspiration!!
I’ve been pretty upbeat about my prognosis, but I am so relieved and happy to hear someone who has maintained a normal healthy life without deterioration. 🙏
Well thank you, the bummer is that after all this time I had a scan a few months ago that detected hcc so I shall shortly be assessed for a transplant. But I try to remain positive and hope for the best.
After all this time. I am guessing you have had Cirrhosis for sometime. I hope you have a positive outcome to your assessment and get listed. The good thing about these scans is you have been picked up early which is good news. I wish you a full recovery and a transplant gives you a new lease of healthier times ahead.
Oh so sorry to hear that. I wish you the best. At least with the 6 month scans they can catch something like that early, which is the most important factor for a good outcome.
Hi , I have cirrhosis and have been diagnosed with HCC , this was August 2022 , I am told I’m not a suitable candidate for transplant , so I have been receiving a treatment called TACE , I have had this twice now and it seems to kill the cancer but it’s not cure just treatment and just keeps it at bay , I wondered if anyone else is receiving the same treatment ? Many Thanks x
Step away from Dr Google !!! It's always scary and worst case scenarios !!It sounds like you're doing a brilliant job looking after your body and your liver
Nobody knows what the future holds...I don't mean to sound dramatic but tomorrow isn't guaranteed for ANYONE
Enjoy yourself and try to make the most of everyday!!
My consultant said that each time my 6 month check up shows no change the prognosis resets!He said its today's symptoms that indicate life expectancy, not the past.
Even though I have said in the past that I feel better than ever….a little time goes by and then I feel even MORE better than ever even from before. I still see continuous improvement. It is nothing short of amazing.
I reflect often to remind myself how bad I felt before. I am truly grateful.
I had never thought of it that way. But makes sense. The good thing is you got an answer. My doctor was waffling and I was non the wiser by the time he had finished
It’s an obvious question to ask regarding one’s own mortality. I’ve asked my own doctors and they all say we can’t say, but they did inform me they have patients who were diagnosed 20 years ago and have patients who are 20 years into a transplant.
It’s likely you will die with cirrhosis not from cirrhosis. My doctors have all said it’s all about keeping the liver compensated which is key to a long life. New medicine and procedures can help with complications arising from cirrhosis and of course no one knows what new developments may happen in the coming years and decades.
The biggest thing I get from my appointments with doctors and my own research is if you can keep your liver compensated that’s half the battles, that and maintaining a healthy diet and getting regular exercise so you remain strong enough to fight infections and issues like muscle cramps, fatigue etc.
The liver is an amazing organ, a year ago I was in hospital with ascites and jaundice and seriously wasting away in terms of malnourishment, muscle wastage etc. the reports from my doctors which I’ve obtained stated likely decompensated cirrhosis, now they seem to think I have fibrosis as my liver has made a massive u-turn in healing and has remodelled itself.
The damage I did was through alcohol and a poor diet. I now no longer put alcohol into my body and eat a really healthy diet. I also get good regular exercise and love walking, I do at least 10k steps a day. It helps I’m young (44).
So my own conclusion now that I have managed to get my liver stable and compensated and likely not cirrhotic is to keep it that way and the only things other than old age and wear and tear that can damage my liver any more is basically whatever toxic things I put into my body which is the key, basically your diet. Of course we are all predisposed to things that could develop due to our genes, DNA and such.
I also believe a healthy mind is key too because if you are positive, proactive and willing to keep to an almost religious fanatical routine regards your livers health, you can remain fit and well.
The stories on here continue to inspire and I’m sorry some of you have cirrhosis and some of you have a bad time with it, but also to hear people are still alive 15 + years in is amazing.
Regarding myself, despite my seemingly good prognosis, my doctors are rightly cautious and have said to me they can only go on my results like my fibro scan, bloods and recent US scan because unless they removed my liver and put it under a microscope they couldn’t tell me exactly whether it’s cirrhosis or not or what real stage of fibrosis I’m at or rather the extent of damage years of alcohol abuse and poor diet has done to my liver.
So they say to me just keep doing what your doing and do not do anything that may damage your liver or decompensated it, so no alcohol, limit process food and try and get regular exercise.
I hope everyone has a great day, stay safe and well.
The answer is yes, in my family we have liver problems due to a genetic disease and my grandmother lived for more than 20 years. She died with cirrhosis at over 85 years old (diagnosis 55/60 years old). Every person is a world.
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