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HepC/Cirrhosis

My fiance was diagnosed with HepC/Cirrhosis last year.  He has been on Methadone Clinic since 6/14.  Went for liver biopsy - they could not do it because his stomach is swollen and his liver is very small.

Three weeks ago, was admitted to hospital for Paracentesis, and was in hospital for six days.  Scheduled to meet with Dietician and Gastroenterologist at the end of this month.  He is taking Furosemide 80mg 2x/day and Spironolactone 100/mg 2x/day, along with Senna S 8.6 100mg daily, along with 2Tbs. Lactulose every day.  He is on a low sodium diet.  He needs to return to hospital for another Paracentesis because his abdomen is huge from ascites, has pitting edema up to his thighs, and difficulty breathing.  I expect once he sees Gastroentrolotist he will go on transplant list, and they told him he would be placed on Harvoni for the HepC. He has Geotype 3.

I have been trying to get as much information as I can regarding his condition and prognosis.  My fiance does not ask questions at his appointments, and does not want me to ask them either - I think he is afraid of the responses - but I would rather know what to expect, rather than waiting in the dark.

Would you be able to guide me to sites that may be helpful?  What can he expect treatment wise?  Can you give me a general idea as to what his prognosis might be?  Any information you can share would be very much appreciated.  I guess the Harvoni will cure the HepC - but Cirrhosis cannot be cured.  If my fiance does not get a liver transplant, what is his prognosis?  Thank you for any information you can provide.
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Avatar universal
Bless you Hector - you are a good man.  You have calmed my nerves greatly. One step at a time, learning as I go.  Thank you.
Helpful - 0
446474 tn?1446347682
COMMUNITY LEADER
I don't know what the criteria regarding methadone actually is. It would depend upon the transplant center's criteria. Criteria for transplant does vary from center to center. Of course were he to get off of methadone that could be an option too. This is why I said try to take it step by step. One step at a time. There will be challenges that is a given for any of us but most can be overcome one way or another if a person really wants it bad enough. We learn who to advocate for ourselves and loved one when we go through this. That is part of the learning experience.

The particular hep C treatment doesn't matter too much. If possible a person would want to treat if possible to try to cure the hep C and possibly stop the progression of the liver disease if at all possible. That is the ideal. We will have to see what his doctor says and move forward accordingly. It is a new world as far as hep C is concerned. Treatment has never been more effective with less side effects. All a good thing for everyone concerned. Yes there is still more progress to be made but treatment is the best it has ever been.

I like your idea of a "sit down" and discussion of what he and yourself want to do. Then based on the options choosing the option(s) that best fits your strategy. Remember you and your fiance aren't the first to be scared about this. We have all been scared. That is normal. Nothing in life can prepare you for a life-threatening disease. We all go at our own speed and do the best we can.

I am hoping that with the diuretics and diet, and when needed parenthesis, his fluid retention can be better managed and his suffering eased. Yes, ascites is can be rough to deal with. All of us who have experienced it know only too well how miserable it can be!

It is all a learning experience. Don't expect to figure it all out in a week or a month or a year. Advanced cirrhosis (decompensated cirrhosis) is a very complex medical condition. It actually takes a team of doctors at a transplant center to manage all of the complications that can occur. No one doctor is an expert in all of the manifestations of advance liver disease.

Keep doing what you are doing. You are on the right path. Being proactive is always the best approach. Knowledge is power. Sometimes it can be scary to know, no doubt about that, but in the long run it allows you to make educated choices when decisions need to be made, which in my opinion is a good thing.

Try to stay positive, hopeful. There are lots of ups and downs with advanced liver disease. We call it an emotional roller coaster. It is not easy but it is doable. None of us are heroes. We are just like you, regular people doing the best we can under the circumstances. We didn't choose our situation but we can learn with the help of others (our family members, support people, doctors and nurses) how to carry on the best way we can.

As you learn more we can answer your questions. I have met over 500 people who have had liver transplants and have learned from others and of course am a liver transplant patient myself. I do volunteer work at my transplant trying to help others who are having a rough time. I have many friends who also try to help those who are suffering. We know from personal experience how tough it can be. We all help each other. Support is vital for both the patient and their caregivers. Others helped me survive to this day so I feel like I need to "pass it on" to others to help them in any way I possibly can. As we say in liver transplant.."No one does this alone". We all need to help each other.

Hang in there.
Hector
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Avatar universal
Thank you for taking the time to answer my questions.  From reading the boards, I see that you are devoted to helping people deal with the impact of liver disease, and I thank you.
I realize I have to become more active in learning more about Jim's condition. He has not "used" drugs for over a year; is being on the Methadone Clinic an obstacle?  His first doctor said he would not receive treatment if he was "using" but she appeared to be OK with the Clinic.  With regard to the treatment for HepC, his doctor mentioned an expensive pill (over $1K per pill), but in truth, I'm not sure of the name of the pill she was referring to.  More homework to do.  She has not sat down and reviewed the results of the blood work; he meets his new doctor at the end of the month; before then, he and I will have to have a "sit down" about being pro-active regarding getting more informed so we know exactly what we are dealing with.  He seems so sick, what with the ascites and difficulty breathing, he is basically bed-ridden.
Again, thank you for the information.  I'm sure I'll be posting again once we see his new doctor.  In the meantime, I'll keep reading and learning.
Helpful - 0
446474 tn?1446347682
COMMUNITY LEADER
Hi and welcome.

I am sorry to hear that your fiancé has advanced cirrhosis and is having a hard time managing his ascites.

There are many issues that you mention and I can’t explain everything about his advanced cirrhosis and liver transplant in one or many posts. Remember each person’s situation is unique and what their options are depends upon all of the details. Only his doctor is aware of all of these factors. So if you want to know what the real options are you will have to ask his gastroenterologist.

If he can cure his hep C perhaps his cirrhosis can be reversed and he won’t need a liver transplant. That is always the best option as if the cirrhosis can be caught in time then the liver can recover its function again over time. Since he is having such issues with ascites it is hard to tell is his cirrhosis is still reversible. Again only his doctors would know this.

One issue he may encounter; most, if not all health insurance plans don’t cover the costs of hepatitis C treatment for someone with addiction problems. There are some gains being made in this area but from my experience it is difficult to get coverage. But again ach person is different and the treatment could be life-saving. Again this should be discussed with his doctor as the doctor would be involved in trying to get him the treatment medications.

By the way the treatment for genotype 3 hepatitis C patients with cirrhosis is Sofosbuvir and weight-based Ribavirin for 24 weeks or longer depending on how advanced his cirrhosis is, not Harvoni. (with consideration of certain blood levels). Perhaps you are mixing up his genotype or thinking of a different treatment. Harvoni is for people with genotype 1 or 4. Genotype 1 is the most common genotype in the US. Both are manufactured by the same company, Gilead.

As far as liver transplantation he will need to be drug free for a certain amount of time (usually 6 months) before he will be put on a transplant waiting list and be eligible to receive an organ. People with current addiction issues or who have an “unacceptable” risk for future substance abuse (drugs and/or alcohol) are not listed for transplant. This is determined on an individual basis and also depends upon each individual transplant center’s criteria for liver transplant. So again real, factual information is vital for knowing what options are available. Without knowing what the real options are it is impossible to plan and make the best choices for the future.

I would take it one step at a time. Learn more about his situation and what his gastroenterologist is able to do to help him. Getting too far ahead of the current issues only creates in my opinion more unnecessary worry. I think you have enough on your hands with the current situation. As things develop you will see what the challenges are and then you can focus on what lies directly ahead.

Right now seeing if he can get his hep C treated should be the number one priority. If a transplant center becomes involved then I would tackle each issue as it comes along.

I am a liver transplant patient and I have been through the process for many years so this is the best advise I can give you from my experience and the experience of many of my fellow transplant friends.

Of course any particular questions the management of his cirrhosis we can answer. If at all possible it would be helpful if you can get some more details about the extent of his cirrhosis as management depends upon how advanced the cirrhosis is. His "MELD score" or "CTP status" (A,B, or C) are important data for indicating how advanced his cirrhosis is. Otherwise we can only speak in generalities.

I hope this helps.
Hector
Helpful - 0
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