RECENTLY FOUND OUT MY HUSBAND HAS STAGE 3 CIRRHOSIS OF THE LIVER...TODAY!!!!

[Cheriwheeler]

My husband, Sean,  was recently treated with harvoni for hep c. He finished treatment in December of 2015, and was feeling great again. But the past few weeks he start feeling just as bad as he did before treatment! He called his support nurse and for the first time we were told that he has cirrhosis of the liver and had a score of 8 to 10. That was all the information she could give us, so we went online and read that the sore determines the level of the disease, A, B or C.  A score of 8 to 10 puts him in the C level, which it says is untreatable and his life expectancy is only 1 to 3 years, I'm completely DEVESTATED!!! If anyone has any feedback or information at all on this matter, my husband and I would greatly appreciate it!!! STILL in shock! But thank you very much for taking the time to read this!!

[Catfishjumpin]

I had hep c for 42 years, a treatment for a year in 2004 then another in 2014. I was an alcoholic all of my life. I live in liver failure, I have liver cancer two years now but I make myself exercise. Yes I am dying but clearly I am living. I understand the feeling of devastation, I have almost bled to death 3 times. But I am still here. I can cycle for hours. I honestly have to drum up the power but usually once I start, my body remembers. It relaxes my mind. I do not have to take any medications. I am chock full of cirrhosis. Please do not think its over so soon. I was told 7 years, its been 14. Good luck.

[dckimberly]

Hi there. Thankfully he's had the harvoni, so the Hep C will not continue hurting his liver. Alas, it may have been, like mine, already to damaged to not stop needing a transplant.

I'm not sure about the 8 to 10 or the letters? I've not heard of that.

But, the liver is either compensated or decompensated. Once it's decompensated, it can't go back.

I believe there are four main diseases assoc. with decompensation. The decompensated four, I've heard it called. Those illness include ascites, or fluid in the belly and lower extremities. Varacies, and HE, or a form of encephalitis that causes the patient to act like they haveementia, memory loss, etc.

When are you going to see a consultant? 

Or is your nurse specialist working with you? I had that at Addenbrookes Hospital.

First, please don't look at the Internet. There is too much confusing info out there and a lot of it is wrong.

This site is a good one for info, as in NIH in the US.

For now, cut out as much sodium as possible, eat healthy, no alcohol, period. 

I know it's scary. Many of us have gotten the bad news on this site also, so we are supportive. Hep C absolutely can cause cirrhosis. It did with me.

Write down any questions you have, and have them ready the next time you go in.

Cheering you on !

xxx

[jojokarak]

Hi I have cirrhosis of the liver too,   I am on transplant list which if your husbands cirrhosis is as bad as you think it is then he will be assessed sooner rather than later to be put on the list himself.   But if I was you wait until you see a consultant as a nurse should not have told you that.  And another thing stay off Google for anything related to health it can send you into a spin,   and you both have hope. X

[Bermuda1]

Actually you can go from decompensated to compensated. I personally did, and know many others who have, including others who have finished their Hep C treatment. It appears that even decompensated has its one levels. Some will never return to compensate , but others do. 

[Phoenixv]

I sorry about your news it's very hard my husband was given the news he is the same 8 we call it it a balancing tight rope checking bloods ups and downs he takes water tablets we have to watch the sodium levels he also has ascites which has to be trained every 10 days we are under the hospice who helps if we need anything like the vitamin drinks and district nurses they are there at the end of the phone. 

I am constantly looking for other treatments and diets my husband had open heart surgery 5 years ago and he has never been well since he stopped drinking 3 years ago we are devastated it's hard when someone tells you are terminal I say to my husband you are still here and I read the blogs to be quite honest they keep me going with hope when you hear the stories how people have pulled through and carried on good luck xx

[Painting42]

Hi ya my husband is the last stages of the disease they only gave him 6months last year an hes still going strong.

I make sure he eats healthy no grease foods like fry ups.what meds is he on 

[AyrshireK]

Hi Cheri, great news that your hubby has cleared the Hep C.

The 8-10 and A to C scorings that you've been given relate to the Child Pugh Score which is an older method that liver specialists use to work out the possible prognosis for liver disease.  If your hubby is scoring between 8 & 10 then this is actually at the higher end of B / lower end of C and isn't a death sentence.

The way this is worked out is available at :- en.wikipedia.org/wiki/Child... ).

I think I am right in saying that in the UK at the moment (due to costing constraints) most folks are having to wait until they are cirrhotic before Hep C treatments are being offered so your husband would have had cirrhosis before he began his treatment (we've even had a case on here where a chap had end stage liver disease with Hep C, had a  transplant and then has had to wait until his new liver also became cirrhotic before getting the treatment - is that not madness?).

Is your husband being sent to a transplant clinic?  Now that he has cleared the Hep C he should be a good candidate for transplant.  What symptoms is he displaying at the present time?  That would tell you whether his liver is mildly struggling yet fulfilling most of its functions (compensated) or really struggling and presenting with advanced symptoms (decompensated).

Just because he has cirrhosis it doesn't mean his days are numbered.  Even with only a tiny portion of a liver functioning it can go on and allow a fairly normal life or at least tide hubby over until he is able to have a transplant.

The more modern scoring system which is used to determine how a liver is functioning is the UKELD ( or United Kingdom Model for End-Stage Liver Disease) it uses a calculation based on different factors within the LFT blood tests to derive a score.  A score of 49 in the UK is the minimum required for listing for transplant (UNLESS there is a more urgent need due to liver cancer etc).  UKELD details at:- en.wikipedia.org/wiki/Unite...

My hubby first presented with liver disease four years ago this month, he had a massive upper gasto-intenstinal bleed from burst varices, was jaundiced and had derranged Liver Function Tests.  He spent 3 weeks in hospital when we were informed he had cirrhosis (of an auto-immune cause).  At this stage we would say he had advanced liver disease with decompensated cirrosis,  However, after 3 weeks he came home and although extremely fatigued most of the time has never displayed any sign his liver is failing.  He has had 42 varices banded, has never had ascites and has mild Hepatic Encephalopathy symptoms, he's never been jaundiced since that first occasion.

In 2014 he was listed for a liver transplant but delisted after 10 months because he was deemed to be doing too well.  His clinic appointments have been reduced from every 5 weeks to every 3 months.

So, my point is yep it's shocking to hear the cirrhosis word but with Hep C that isn't uncommon.  You can look after yourself to help guard the liver - my hubby isn't really doing any worse now than he was in April 2012, he's gained weight and muscle through following a special diet the liver team put him on plus has almost normal blood results & although he is displaying some symptoms he still has a short walk daily and makes the most of his better days.

What needs to happen now in your hubbies case is you need to see a liver specialist and preferably get referred to a liver transplant unit for a thorough assessement of the state of you hubbies liver health and over all health.  He needs to reduce salt, sugar intake and of course alcohol if he takes any. 

He needs to be having 6 monthly ultrasound scans to check for any potential nasties appearing in liver, he should really have an endoscopy to check for any signs of portal hypertension or varices and really they should be looking to progress to transplant if that is appropriate.

His liver can tick along and with the Hep C removed the damage should slow down but is unlikely to reverse very much so transplant will be the only option to give him his health back.

Hope you are getting some feeling of optimism back from hearing other folks stories, there are a lot of folks on here who've been where you are now so ask away if you get further questions.  Hopefully you can get hubby to transplant assessment and whilst it is a massive procedure you'll hear loads of positive stories on here of those who've had one and come out the other side feeling miles better than before.

Wishing you both all the very best, Katie x

[LAJ123]

Hello,  I had a Child Pugh C2  / MELD 16 / UKELD score of 59.  All indicators of end stage liver failure and pretty high scores with a disappointing mortality prognosis. Perhaps it was just a well I didn't really understand this at the time as I'm sitting here feeling really well with a new liver transplanted  on the 11th of March this year, exactly one year after becoming ill.   We were also told it was 'untreatable'  which was true, there was no treatment for my condition.  Then the option of a transplant was discussed.  The point I'm making is - do not despair. keep as fit as you can and eat well.

Jim

[LAJ123]

Ps; LAJ 123 is my partner who has been a member of this group since diagnosis and found it  amazingly supportive.

[grumps]

So sorry to hear your situation...whatever happens ask for a second opinion..if not happy get a third opinion...you can't loose anything .by asking....it worked for us with our son snd he is now on thenpriotity transplant list...that's after been told he had very max 2 years

Keep strong were always here to talk yo

Chris

[jenngrady]

Don't give up! Make sure your husband follows the routine that the Liver Specialists prescribe, takes his meds, watches his diet, does NOT drink and he can go back to having a compensated liver. People who say otherwise have NO real experience with managing liver disease. The liver is one of the most resilient organs in the body, it can regenerate itself! It's great that your hubby cleared Hep C, but remember many people can live decades with Hep C so the damage that it caused happens slowly over time. Now it's all about managing the liver function your hubby has and taking good care of himself. You guys can do this! Don't let the internet scare you. Just do it.

[Hidden]

My prayers go to you both. My husband has stage 4liver disease and of course is irreversible. We found out almost 2-1/2 yrs ago. I am sorry to say i hope you dont go through the pain and suffering my husband is esp the last year and a half. There were many times I wish he were taken home as he suffered so badly. At times hed be swollen, short of breath and id literally breath air into him. Right now hes in Palliative Home care. As much as we love them It is VERY HARD for 1 person to care for an ill one. Plus i work so he would be ok at home but his mind had become affected from Hepatic Encelophathy. The MANY hospital admissions, sleepless nights and pain he was in leaves you helpless beyond words can describe. However being part of this group helps you know that each liver disease experience is different. My husband wasnt committed to taking his meds consistently as hed say "I'm dying anyway" I have researched myself out, learned to let God deal with it. It consumed me trying to figure out stages , diagnosis, symptoms of what hes going through. But like i said each story is so different. I'm sure my husband woild jave died a while ago but he quit drinking. I wish i could tell you things will be ok. Maybe he'll be spared. Research stage 3..i dont know how much difference there would be from stage 4liver disease. Let me know how your loved one does. Stay strong..you'll be needed more than you know. God be with you two!

[jojokarak in reply to Hidden]

Hiya I just wanted to let you know your commenting on a lot of old posts and some of these people don't use the forum anymore x

[Hidden]

thank you

[Hidden]

I am sorry to hear of your husbands health I really am. My husband has stage 4liver disease and what we'vebeen thru is pure hell. I don't want to scare you but be prepared for a fight. The pain and suffering my husband has gone through is NOTHING I'd wish on anyone..to this day I've had to put mine in Home care (palliative care) as taking care of him AND working was too much. Many times I prayed for him to be taken rather than suffer. There were times I literally breathed air into him because he had ascites and short of breath. Like i said he's in home care and struggles to breath every day. I cant even take him out now. My heart goes out to you both. I pray your story with the disease is different. Not all are the same thats what I found out.

[Meteocal1]

I and my souse felt devastated with the news of my cirrosis diagnosis. Although I was having frequent bleeds and felt I could not tolerate one more bleed, I have changed my life style. Do frequent walks reduced medication or foods that can be toxic to the liver, but most importantly, I stop drinking. It has been close to 4 years and I feel fine. Never miss a doctor appointment. But then again every ones disease is unique, good luck and do not add extra stress in to your lives.