My husband was very recently diagnosed with liver cirhossis. He has like every symptom you could possibly have from it, nausea, ascitis, muscle wasting, insomnia, vomiting, etc. and I was just wondering how he is going to be able to function normally. He had to take the Lasix so he has to go to the bathroom all day. How do you go to work or functions , etc and will it ever get better??
Looking for some advice on how to live... - British Liver Trust
Looking for some advice on how to live a normal life having liver cirhossis.
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Cotterpin
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46 Replies
•
Hi
Im afraid Cirrhosis is not curable , how ever if the cause of Liver damage is stopped some may get some improvement.
RodeoJoe• in reply to
Well, not strictly true if you consider transplant a cure. Like you say sometimes if the cause is stopped, and strict diet of low salt and high protein is kept an improvement can be made. But really at the stage mentioned it's worth perusing transplant options.
• in reply toRodeoJoe
I dont see a transplant a cure, since the life expectancy is 5 years, not back to normal like changing a car tyre and also dependent on cause, the new Liver could be attacked anyway.
RodeoJoe• in reply to
I hope you're wrong. I'm 2 years in and I'm expecting a lot more than another 3 years. My quality of life has improved drastically since transplant, probably haven't felt this good for 10 years prior to transplant. The only difference is a few pills a day. I'm active and enjoying life now.
There are not many causes that aren't treated prior to transplant (Hep C) or controlled (Auto immune) after transplant.
Also I think you have your facts mixed up a bit. I think the statistic is that 75% of patients survive 5 years, after that I believe the chances of having complications drops dramatically year by year.
that is amazing.. My husband was recently diagnosed with NASH. We are hoping for a story like yours
Bolly• in reply to
Like others have said Ralph, in this case you have your facts wrong. My GP practice has 2 transplant patients both surviving around 17 years post transplant at the moment.
• in reply toBolly
life expectancy is shorted by having a liver transplant, even if it goes well. Not everyone will even survive the operation ! Its down to personal view, I dont find a 75% chance of living 5 years particularity positive tbh. I remember Larry Hangman did pretty well at 20 odd years post transplant though.
The idea that you just change the old the liver like a car engine is la la land im affraid. Sometimes this board makes it seem all to easy to just have Liver transplants when its a very serious and life changing operation with nearly endless potential complications.
tillycindy• in reply to
Your comments really annoyed me my friend, but I left it up to Jim, Rodeo, Bolly, people who know what they,re talking about. I note you,ve been on the radio, heaven forfend.
• in reply totillycindy
good, i glad you are annoyed
Kate50• in reply to
Hi Ralph , I think that you are forgetting that a liver transplant is not an elective surgery it is a life saving operation and I for one will be forever grateful for the extended life it has given me whether it be 5 years or 25 years , also this is a support forum for people already having a hard time so name calling and insults make it very unpleasant not just for the person on the receiving end but also for others reading the posts, anyway take care of yourself 🙂
• in reply toKate50
Im glad you are healthy and doing well.
I was trying to make the point that you are, a transplant is an emergency, not a joy ride. We should all be grateful for everyday. We are ALL going to die someday, in 75 years everyone posting today will be dead, so lets enjoy the now. I have helped many people on this forum and the thanks I get is a sneaky report to admin........
Kate50• in reply to
Hi Ralph , I have read through some of your previous replies and you are very helpful to people on the forum who are looking for advice and support, i hope you continue to do so , take care Mandy 🙂
Bolly• in reply to
Absolutely, its not a lifelong cure, its a life-extender. I think the thing we wanted to clarify was the 5 year limit. Its just a statistic, and many transplant-ees live much longer while others have their new liver fail quite quickly.
There are people on this site that have been living with cirrhosis for years, you don,t say what caused it. The most important thing is to eliminate the cause and prevent more damage if he,s drinking he must stop totally. Depending on the severity ,treatments for ascites for example will differ, water tablets for mild, draining if really bad. Diet is key and I see you have asked for advice regarding that on another post. Basically avoid salt and eat fresh foods so you can control ingredients. You can get things such as complan or ensures from the doctor for times when he can,t eat which will give him all the vitamins and minerals he needs. High protein every 2 or 3 hrs ie little and often should help, eggs, fish, chicken, it,s often recommended to avoid red meat (because of iron ) but people have different ideas on diet. Hope this helps a little until the others come on line. And yes, he can improve. Wishing you well, regards, anne. p.s. he wont feel like it but any exercise will def help.
• in reply totillycindy
im not ashamed to admit my cause ,,i have ALD all my own doing ,,dont blame anyone ,,,,i find this thread rather depressing a read .....can we all get along please ,,,,im looking forward to living a long and fruitful life ,,now myheads in the game. luv n hugz to you all Matthew
I have really no comments to offer
Unfortunately the symptoms for liver cirrhosis are horrible....i suffer with a lot of them...
There are things that can be done to help a bit...
Ascites.... if he gets really bloated they can do a drain which will help temporaily but it will come back.
Nausea..there are tablets that can help with this.also if he eats little and often this helps.too large a portion makes me be sick..
So i stick with child size portions. Eat before bed so he is not running on empty.
Dont eat too much fat as this will.make nausea sickness worse. Avoid alcohol even if this is not the cause of his liver disease.
Insomnia....this is also common but he could probably have sleep tabs which gp was reluctant to give me but liver consult allowed it and it helped.
Fatigue ....pacing is the only help i find and he may have to look at goimg part time or being on sick pay.
Are you seeimg a liver specialist ?
Hope this helps a bit. Best wishes cazer.
Hi,
You may find The British Liver Trust publication on cirrhosis helpful as it details day to day coping strategies. ( see link below)
britishlivertrust.org.uk/li...
It may also be advisable to get extra informed advice and support from your husbands liver specialist and team.
Very best wishes,
Rebecca
Time is something no one seems to have mentioned. At the moment you probably are both reeling from the diagnosis. It takes a while to go through all the stages of grief , as yes life will never be quite the same again. I, and I know others who have come on a long way from the initial diagnosis even if it has been quite dire. So hope is something to keep in your heart and a fighting spirit. If you do as suggested above , good diet , exercise, remove the causes of the liver disease, the cirrhosis will not go away , but it can be much more easily managed. I have beaten my life expectancy upon diagnosis by a year now, and now they say they expect me to live to make old bones. Cirrhosis things can change very quickly though , so one mustn't become complacent.
Thank you for all the replies . It is comforting knowing others have been through this and are finding ways to "deal". No one said life was going to be easy - but geez!!!
I am hoping since the reason for his cirhossis is hereditary hemochromatosis, along with bad eating habits and lifestyle. He did drink alcohol, but not to excess and has totally eliminated that and everything else, not even an Advil will he take. The high iron is not a factor right now bc his hemoglobin is low. We can start to deal with the damage caused now. We have a gastro dr and internist but quite honestly, they don't know everything bc they have never experienced what it is like and only go by statistics which every person is different. I have received more helpful info from posts and literature than anything else.. So thank you all again, and be well and have a great day! 😊
Ralph,
cotterpin came for reassurance. Your comment was ill judged and not really what we expect here. Anybody not knowing anything about liver disease and worried for themselves or relative may have taken your comment as being a fact. We should all think very carefully before we post here as misleading information or opinion can be harmful.
Jim
Phew. My heart sunk when I saw that post about 5 years max.
• in reply toKatherine1962
Hi Katherine yes that post although maybe true or not is hard to read ,,,,there is no cure ,,but trans are getting better,,i have liver disease and i will eventually need a liver if im lucky,,,,i stopped drinking fully over 6mths ago and was told i only had six months,,,,im feeling fine my health is improved i think i reg go for checkups,,also a PMA is good to have ,,,i dont like posts where they hide there details but frighten people with little knowledge ,,,be strong always hugz Matt
Katherine1962• in reply to
Thanks Matt. Yes the post I don't
Think was originally hidden but certainly
Is now.
Hope you ok and good luck for the future
I have Liver Cirrhosis, was diagnosed at 24 after having Heart Failure, a complex for of Hemochromatosis was the cause (Iron Overload), I'm compensated, I don't have Ascites, Variaces or HE but I still feel awful, my spleen ranges from 22 - 25 cms (Meld 13) however I've read variaces can occur from 14 cms, give or take a few cms, so a tad unsure why nothing bulging has appeared on my Endosocopies. I feel like I'm in a catch 22 situation, I'm suffering with Chronic Fatigue, Cognitive Impairment - my memory is terrible, Muscle Wasting, thinning bone however I'm not ill enough to be considered for Transplantation.
I feel quite ashamed tbh as much of healthy society assume your healthy if your walking when that's definatley not the case, I know people look at me and see me as apathetic when all I want to do is function normally and work, my last role was a well paid role at HSBC in Canary Wharf but I've come back to Birmingham as I'm not well and find it very difficult cope alone.
Sorry I'm just being honest, my heart goes out to anyone who is affected by Liver Disease, it can be devastating x
I had the same problems before transplant. I work in IT, and worked for banks, MOD, Police etc. All high pressure. It really was a struggle just staying awake at my desk and the cloudy brain was making work almost impossible. I had to leave work about a year or so before transplant, I was worried I'd get the sack and end up with a disciplinary. My manager once called me into his office and told me I'd been caught snoring in one of the toilet cubicles.
It's tough because I don't think I'd have been able to claim any disability benefits or anything.
please find me the Liver doctor that will ensure that you will live for 20 years after transplant? If it wasn't you that reported, then fair enough, i apologise. But after spending 2 years here trying to help others and tell them the truth, sometimes not what they want to hear, but the truth none the less, I am pretty annoyed someone went straight to admin and lodged a complaint because its wasnt what they wanted to hear. By the the way admin did not deny what I was saying.
I did not say anyone would be certain to die/have problems at the 5 year mark, some dont, the cause of the original Liver failure can dictate of course. Why do you think Liver doctors will do everything in their power to keep the native Liver? The transplant is not a magic wand, its a last resort and living for 15-20 years after is by no means guaranteed, like I said Liver doctors will start to watch more carefully after 5 years. I know 3 people just recently who have had problems 6 months after transplant!
RodeoJoe• in reply to
I don't know what you're going on about. Over 75% survive 5 years, and at this point chances of complications drop dramatically. Infact last time I went to kings my consultant said it was more likely my blood pressure will get me rather than the liver transplant, so wasn't sure how to take that.
I imagine the reasons transplant are a last option is of course the procedure is massive but also there are a finite number of livers.
• in reply toRodeoJoe
Well on a time line ALL our survival rates drop to zero and time goes by. I am not saying you wont live for 20 or 30 years without issues. Larry Hagman did very well and reported feeling better than he had for decades, largely due to a much younger Liver and he lived to a ripe old age and died of an unrelated cancer. There are great success stories, but not everyone will be that lucky, infact most wont.
There is a post this morning and last week of people who have been transplanted and transplant 2 might be on the table soon! I say dont get over confident, I have followed people who did and slowly turned to some old habits, i.e. a few beers, bad diet, no exercise and have ended up dying or getting serious complications. There is some good is pointing out the down falls of a transplant, it may save some people from themselves.
Sorry if you found the post negative, but I like to be real about things. If you get to the point that they give a transplant it because you are close to death. Even 2 or 3 years is worth trying for.
Please dont take my post as a disrespect, I am sorry you have been through all you have.
RodeoJoe• in reply to
No offence taken I just don't understand the point you're trying to make. A liver transplant is no walk in the park and there can be a mirriad of possible complications. No one gets one unless it's the only treatment that can save their life. Having said all that survival rates are high as I keep saying 75% 80% after five years.
Just like every one a transplant patient has to look after themself to avoid complications.
• in reply toRodeoJoe
If you dont understand my point that is your problem im affraid. You keep saying it, but you are wrong. My original post stated the cause of the original disease is relevant "also dependent on cause" I have just posted a scientific white paper that confirms what i am saying, with Hep-c patients having a hard time particularly.
The study also shows that after 5 years 22% experience vascular problems and died as a result. This is surely helpful for to you, with your blood pressure issues? it might be a good idea to work to protect this system?
RodeoJoe• in reply to
"If you dont understand my point that is your problem im affraid."
Really?
Well I'm here for the duration no matter what you think.
Can,t argue with stupid rodeo. . I can produce a "scientific white paper" from feb 28th The Lancet about the measle vaccine causing autism. The "most prominent modern scientist who got it wrong " The guys just going to keep producing things to back his position. He has no care for vulnerable people using this site and looking for reassurance. None. He,s on a anti.drinking crusade. I personally think he ought to get a vocation as a speaker at A.A he would be good there. Not put my position well I know. But you get the drift I hope. I expect to receive a torrent of abuse now. Read last week that there,s no point fighting with a pig. The pig enjoys it, and you end up covered in crap too. Hope you are o.k Rodeo. Yours anne x x x
• in reply toRodeoJoe
dont get the reply
• in reply toRodeoJoe
You might find this useful/informative:
ncbi.nlm.nih.gov/pmc/articl...
Its a 20 year study of tranplants
I think you should read the white paper. 22% lived over 20 years, with 40% living to 5 years, obviously the cause is a huge factor and there are other studys of course, by this is a legitimate study.
Thats a good paper, well worth a read. Impressive results and the study is retrospective too. So it would not include any newer methods or treatments, or at least for the large part.
It does how ever cover pretty much every cause of Liver failure, and not just Cirrhosis either. So for some patients this could be mis-leading in terms of the survival rates for their particular condition/disease, if they dont break down the overall average .One thing Im not clear on was the HCC patients, im not sure if that HCC with Cirrhosis or just HCC, just getting HCC on its own is pretty rare though I guess.
no i afraid it is correct, depending on the cause, as I stated. you are picking out half my sentence to attack me. If you cant accept that then we have to agree to disagree. I posted information that supports what I said and your paper also supports it, but only HCC, which I found surprising. Also the Hepc survival was infact 90%, considering that is from old information and not subject to the newer and better Hep-c treatments. Your paper also excluded 6months failures, but i didnt want to split hairs.
from personal experience I can tell you I know 3 people who have died after transplant, good people. I wouldnt dis-respect their memory. I know one that was diagnosed with "end stage cirrhosis" in 2001 and her Liver numbers are now normal ! It is better the hang onto that Liver along as you can
It is a pity that this post which at the outset is a request for help on going forward with a new diagnosis of cirrhosis has decended into a rather negative argument with unhelpful and distressing facts, figures, misinterpreted figures and personal attacks, swear words and all sorts.
If I was just coming on here for the first time with my genuine cry for help i'd be really baffled and distressed about what had followed my post.
Whilst it is true that cirrhosis isn't completely curable it is also not an immediate death sentence. It can be lived with and controlled to an extent and where appropriate and if the need arises then transplant is seen as a possible treatment option. Whatever the long term survival rate is going forward it is really irrelavent because due to the shortage of available organs they only go to the most seriously poorly - it is a life saving operation. The NHS Organ Specific Report on Liver Transplantation goes into the specific numbers centre by centre on year by year survival rates, conditions which led to transplant and more and as many have already posted the 5 year survival rate at the time of this report was in the range of 79% - all of those recipients would have been gone without transplant so for them it was worth while.
This report is at :- odt.nhs.uk/pdf/organ_specif...
One of the main criteria at transplant assessment is whether the benefits of transplant outweigh the risks associated and each case is assessed on a case by case basis.
Anyway, please be the supportive folk you normally are rather than causing upset to new members and other posters (& no I haven't reported anything to admin I just saw this post deteriorating and not being helpful to the lady who initially posted).
Katie
I think it is ok to question misinformation & unhelpful pessimism ( I have done it myself in other posts ) but this thread just descended for some reason. Anyway, enough been said on it we should all just go back to being supportive to folks.
No worries, Chris, and all the other posters. This is a forum for discussion and I appreciate you all trying to get all the true facts out there. We are all here either for ourselves or a loved one, although some have had transplants and some have not, we all have Liver Disease in common. The bottom line is we all need hope, love, and support, no matter what the statistics say. That is what I take away from this site. The fact that strangers care enough about people they don't even know, says a lot about all of you, and I am thankful for that. Be well and enjoy the weekend.
Well said Cotterpin. Phew. let,s hope that,s an end to it. I hope everything is well with you?. Best wishes from all x x x
Ditto.
Dear all,
This forum is for everyone to express their feelings about liver disease and treatments, however it is very important that this is done in a mutually respective way.
We have deleted the verbally abusieve comments that were posted in this feed and urge you all to please follow the guidelines for use of the forum and always post with respect for others opinions and in the spirit of supporting and learning from each other.
Thank you for your understanding,
Best Wishes,
Rebecca
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