Harvoni Effectiveness on a Stage 4 Liver Disease Patient.

[Katerv22]

Hi there.

My dad is suffering from all of the end stage liver disease symptoms.  It's been a year of ER visits with multiple symptoms, Hepatic Encephalopathy being the scariest.  Last week I called 911 when he called me after falling.  He was on the floor for 2 hours and has sores and bruises on his legs and arms from trying to roll over/stand up/get to his phone.  The fall was caused from severe weakness in his legs.

My question is what affects the Harvoni drug could have on a highly decompensated  liver?  He is not eligible for a transplant - his MELD score is low and they won't even list him even though it is highly symptomatic. I understand the side effects of the drug but I guess my fear is that the drug will stop the progression of the disease but not help him get better.  His quality of life right now is not good at all.  He sleeps and goes to the bathroom from the frequent lactulose he is taking.  He can't drive,  can barely walk and his brain function is not even close to what it used to be.  Will he stop getting worse but not get better?  Is there a chance he will improve significantly with the virus and infection gone?

Thank you for your thoughts.

[Lynn K]

I have read that can be something of an ethical dilemma for doctors. Yes he could be treated but then with very advanced liver disease this may not be doing the patient any favors. For patients with very advanced liver disease and high MELD scores the progression of liver disease is stopped but how much improvement is possible for these patients is the question. Treating their hep c they will still have very advanced liver disease but may regress to the point that they actually move lower on the transplant list but are still very ill.

Most transplant centers won't list until the patients MELD is above 15 with most who receive transplants have a MELD around 30 depending on the transplant center.

The goal is that they want the risk of death from liver disease to be greater than the risk of dying from the transplant procedure itself.

Even when listed there are about 16,000 people on the liver transplant list and only 6,000 procedures on average in any given year. Patients die waiting for transplants.

I assume he is taking Lactulose is he also taking Xifaxan?

From what I understand the dose of Lactulose it to be titrated with the goal of 2-4 soft bowel movements daily.

Here is a link to the American Liver foundation with a lot of good information about living with HE and support for caregivers. I hope you can find useful information there.

http://he123.liverfoundation.org/

As to your question "Will he stop getting worse but not get better?" that is very difficult to say and best answered by his hepatologist. I assume he is seeing a doctor associated with a liver transplant center. They are best equipped to monitor and treat patients with advanced liver disease.

Wishing the best you and your father

[Katerv22]

Thank you so much for your reply. 

This is my dilemma exactly, his quality of life is...horrible.  He is dependent on me.  His specialist said that he will probably not regain his strength.  I obviously want my dad to get well but what I do not want is for him to remain as he is.   He is excited about the treatment and doesn't seem to understand (in part because his brain function is not what it was) he will probably not get better.

He starts Harvoni tomorrow and even though I disagree with treating what has already taken too much from him, it is his journey and I will visualize amazing results. 

Again, I appreciate your thoughts.

[CureSeeker]

If he gets rid of the virus he will qualify for a transplant.  With the virus gone and a new liver he will not only improve but possibly outlive you, lol.

My husband traveled the same road as your loved one, and his hepatologist couldn't say anything for sure until the point had been reached where it was apparent he was definitely dying.  I guess this would be good time to point out that my husband functioned, loved his family, and took charge of his treatment for over a year - all the while in liver failure.

The road to recovery, much like the road to death, is not easy for these people with advanced disease.  They may become as helpless as a new born baby at times, but they can also recover.  Only time will tell.

"He starts Harvoni tomorrow and even though I disagree with treating what has already taken too much from him, it is his journey and I will visualize amazing results."

For your own sake - that is the best course of action for you to choose.  And, to be honest, if you really cant make his illness be all about him and his choices, the best thing you can do for yourself and him is to simply step out of the way. 

Its reality that sometimes disinterested parties are better able to deal with our needs than those that claim they love us are.   The last outcome you want is for him to pass and you find yourself wishing you had not said something you said or did something you did during this time.

Afterall, he will finally be free or cured; and you will be the only one left dealing with what were your choices and not his.  Don't set yourself up for that.

Miracles are certainly possible, and people like LynnK and others on these forums are in my eyes living examples of that. 

I can see that you love your father, and it hurts you to see him in what you perceive to be suffering.  Please know that him choosing treatment shows he wants every shot at a virus-free life he can get.  Him taking charge of hs choices is not only better for his state of mind, but also better for yours - leaving you as guilt-free as possible if things don't go in the positive direction everyone is hoping for.

We will all die of something one day.  None of us were designed to live forever.  I will keep you and your father in my prayers.  He needs to become a gladiator, and you and the rest of his family can help him the best by becoming nothing but a gaggle of selfless saints.

Neither role will be easy - best wishes to you all!

[Philadelphia]

Beautifully put, Cureseeker. Agree 1000%.

[Katerv22]

Thank you CureSeeker and Philadelphia.  I am trying with all my heart to stay positive.

I hope the love for my dad comes through my messages.  He is the one person who has loved me more than anyone else in this world. I want him to be well.  I want him to recover.  But people (his specialists) are telling me he probably won't but are still letting him go ahead and take Harvoni. Watching him suffer is so horrible. 

What I think people are scared to say out loud is how challenging the caregiver's job is.  I am his only child. I live an hour away and I have two young children.  Not that I would ever do this but I couldn't step away even if I wanted to.  He lives alone and doesn't even have neighbors he knows to help him.  For over a year it has been excruciating.  Of course I want him to improve but my issue with much of our medical system is prolonging the inevitable but not improving the quality of life.  If he doesn't improve but stays as he is for years to come, then he has not done himself any favors. 

My heart is broken and I will continue to pray for a miracle but he can't stand for more than a few minutes, he slurs his speech, he is always confused and can't remember much.  He fell last week and couldn't even roll over or stand for hours while the food on his stove burned. Just as his specialist said, he is wasting away.  His MELD scores is 13 and will only go down if the virus and infection are removed. He refuses to come live with me but also refuses to go into senior housing.  He is stubborn and quite frankly, in denial. I'm terrified and overwhelmed and so hopeful he will improve enough to be independent and pain free. 

Please keep him in your thoughts. 

[Lynn K]

Having hepatitis c does not prevent a patient from being on the transplant list. Many patients are transplanted while being infected with hep c they would then treat after transplant to cure their hep c and prevent future damage to their new livers.

His MELD score will still need to be above 15 to be on the list and as I said he will likely need to have a MELD around 30 to be high enough on the list for transplant.

Unfortunately it is a long slow road from where he is now with too low of a MELD score to qualify and a high enough score to be transplanted. I am assuming the reason he does not qualify is because his MELD is too low unless there is another reason they won't list him for example other health problems where he may not be a good candidate for surgery.

We are all hoping if he treats with Harvoni he will recover enough liver function that his HE can improve and he will have a better quality of life. There have been studies where people with cirrhosis from alcohol have improved the condition of their livers by abstaining from alcohol. So it may be for us with hep c as well there is just not a lot of data out there yet but I have seen that about 50% of alcohol induced cirrhosis patients do improve it maybe a better picture for him and the rest of us with cirrhosis than that but only time will tell.

Please know that you are in our hearts and that we all wish the best possible outcome for you and your dad.

Lynn

[Allen Cunningham]

Diagnosed 8/97 with HepC
Liver Transplant 7/2004
Genotype 1b, Biopsy:12/2015: TX Naive, Fibrosis Level 1
ALT: 26, AST: 26
Started 12 wks Harvoni on 1/19/16
Week 5 - undetectible!

Hi Katerv - I was transplanted at age 57 with a fairly low MELD score because my Bro-in-law volunteered to be a living donor.

I live in the SF Bay Area and in California there are so many folks waiting for livers, that you have to be in liver failure before you get transplanted.

My wife asked everyone she could about donating a liver and her bro stepped up to the plate.

When you donate a liver they take a bit more than 1/2 of it, and the liver being the only organ that regenerates grows back in one of two month's time with no adverse effects for the donor (at least my donor had none)

I know exactly how miserable he is and I hope you can find a donor, relative of close friend with the same blood type.

Prayin' for you