Hep C 30 years and Stage 4 cirrhosis life expactantcy

[amanda777283]

I am so frustrated, I have Hep C for 30 years and mood issues which made them unable to treat me with alpha interferon/Ribivaron et. Also, I have hepatic encephalopathy for 6 months which varies. I have this diagnosis so I guess I am in de-compesating cirrhosis, the problem I am having is I have no family support. I worked too long and Medicare pays part which left me in terrible poverty which precludes eating a liver healthy diet because any food towards the end of month is questionable sometimes. I worked too long to get food stamps or Medicaid to help with SSDI no not SSI (It seems I killed myself because I worked). I am loosing the ability to care for myself in my apartment I own no properties. My state has doctor assisted suicide and to be eligible I need a legal definition or most likely length of life, I am not sick enough for hospice yet, but not well enough to live normally as severe fatigue makes everything so hard. The reason we need an estimated time of death is to get the assisted suicide so we do not have to suffer, statistically does anyone know with the liver being the only main health problem with hep c and hepatic encephalopathy how long do I have to suffer before I become eligible for assisted suicide. My life has no meaning to me anymore because of being this sick and alone with no support. The only people that see me anymore is my doctors, whom I will put on the spot this next week about life expectancy but expect him not to reply honestly as he like all people feel it might lead to a lawsuit or make me give up all hope but telling me how long will help me make a plan...without this information every cancer patient needs, I am not getting this needed information. We need to see a range of the time left to make critical decisions how to deal with this and no doctor is willing to do this. If anyone does know please tell me so I can make important decisions how to deal with the time left. Oh and if you drink at all with Hep C you will not last as long as me. So just forget alcohol forever.

[Ekkiemom]

Hi Amanda......of course you will do what you think is best but I feel very strongly that this is not the correct choice, just my opinion friend..
HectorSF is a survivor and he never gave up and he's still here with us, by the grace of God..if you knew his story you would decide to fight and never give up!
I do understand your feeling, and I'm confident that all the info given to you by our friend Hector is something you should really think about.
I hope you will feel better and decide to fight and live...

Deb.........a friend

[mckansas]

Good advice from Hector. I thought my world was ending too,  hep c, cirrhosis, decompensated, then HE with MELD 15 but with diet,  medication,  rest I just got notified I've beat my MELD back to 9! So you don't have to give up and die. Get your mood under control and interferon free treatment is coming.  My hepa just told me Friday he thinks I may NOT need transplant. New meds next year,  6 months in light of 35+ years of having this disease is a drop in the bucket.  Diet,  diet,  diet. Foods affect moods. Get a plan for eating right.  You can do it.  I'm proof this works.  Hope for no liver cancer,  this will set you back.  Cirrhosis can be controlled somewhat.  Your liver is an amazing organ.  It will fight with you now that you know where you stand.  Diet control!

[HectorSF]

Many of us have had Hep C for 30-40 years nothing strange about that. It can take 20 – 40 years for cirrhosis to develop. It appears you have mood issues that are coloring your view of what is actually happening to you and you are probably not anywhere near as ill as you think you are.

You seem to misunderstand the nature of cirrhosis. There are many different stages of cirrhosis and you have a early stage. There is no danger of you dying anytime soon for compensated cirrhosis. To think that compensated cirrhosis is End-Stage Liver Disease is mistaken. People with compensated cirrhosis can still treat and eliminate the cause of their liver disease and go on to live a normal life span. We have seen many people do this here over the years. This is more and more common as people now have more treatment options. I am not sure what make you think cirrhosis is a death sentence but you have been misinformed. The vast majority of people with cirrhosis either cure the case of their disease or have a liver transplant so there is no cirrhosis = death equation. Please educate yourself about cirrhosis so you don’t make such false assumptions.

HE is not a sign of decompensated cirrhosis and you don’t mention any symptoms of decompensated cirrhosis so it appear you have Class A compensated cirrhosis like almost everyone who has cirrhosis on this forum. Many of them have cured their hep C while having compensated cirrhosis just like you.

No doctor can say how long you have to live as you are not serious ill. There is no crystal ball in deciding when anyone is going to die. So you are looking for an answer to a question there is no answer to. If would be like asking anyone with cirrhosis on this forum how long they have to live. There is no medical answer. You are asking the wrong questions.

You should be asking yourself why don’t I want to live. "the problem I am having is I have no family support", "My life has no meaning to me anymore because of being this sick and alone with no support. "
As I said this is no reason to want to die. Suicidal thoughts and hopelessness are common symptoms of clinical depression NOT cirrhosis. I also suffered with clinical depression for decades so I understand what you are going through but it has nothing to due with hep C or cirrhosis. Many of us fight for years living with advanced cirrhosis. Because we know if we get a liver transplant we don’t have to die and we can be healthy and live a normal life again. Wanting to die is an entirely different mental and mood disorder that can be treated and controlled more than ever these days. There are drugs that work for just about everyone. Get your mood disorder which is making you suicidal under control then you will see the cirrhosis is far from the end of life.

The main issue is your state of mind and thoughts of suicide. Are you aware that fatigue is one of the main symptoms of clinical depression? Most of your symptoms in fact could be related to depression not cirrhosis. Many of us have been living for years with cirrhosis and other related issues that are truly life-threatening. Compensated cirrhosis is not life threatening and many people learn to live with it for many years before they ever decompensate if they ever do. Many people do not have family support for many reasons. There is this community that will support you. There are local hep C groups. How about your friends? We all find support where we can get it from.

First:
Find a psychiatrist who can get your mood issues under control so you are not having these suicidal thoughts.

Second: New treatment will be available in early 2014 that does include interferon but if you can get your moods issues under control perhaps you could treat for the 12 weeks required. Go to the liver transplant center in Washington (they should take Medicaid) and get evaluated so you know the true state of your cirrhosis.
UW Medicine’s Liver Care specialists, located at UW Medical Center.  The Hepatology Clinic manages: Hepatitis C
UW Medical Center is located along the Montlake Cut on the south end of the main University of Washington campus and is easily accessible by car and public transit from Interstate 5 and State Road 520.
Seattle, WA 98195
206.598.3300

Please get help. Depression causes terrible suffering and eliminates all enjoyment in life. That is why people become suicidal. It is depression that is making you think this way. Reality is lost when we have mood diseases.

I wish you the best of luck getting your mood disorder under control!
Hector

[Dee1956]

Oh, I mean to say that at the top of the page there is magnifying glass, you can click on that and search for whatever you would like to learn about.
Of you can ask questions here.  Everyone is very kind and would be more than willing to help you
Dee

[Dee1956]

Please do not give up.  You are only 52.  I agree with Rivil and Can-do
Are you drinking water?  Being slightly dehydrated can make on depressed, fatigued, and achy.
I am 56, I have cirrhosis and I have no intention of giving up.  I just fought really hard to live.
I am so sorry you are alone where you live however you are not alone on this forum.
You can make a lot of friends here. You can get information, tips for improving your life.
When I was feeling very low I was told to start walking, any amount, just to get the blood moving can help.  Even 10 minutes a day 5 days a week can make a difference.
Right now we are having a heat wave so the walking is on hold until the storm tonight.

Please hang in there.

[can-do-man]

Sorry but we don't let people come here to die, that's not what we are about. Lots of good and caring folks here that will steer you in the right direction. You have already met one in Rivll. Have you looked into Medicare advantage plans in your area? Where I live there are some that have no added cost per month, low doctor co pays and include Medicare part D.

Now as for as being cirrhotic well your not alone, quite a few of us are and we plan on being around for a long time.  Your profile says your only 52 so you will be around for along time yet. Trust me there is help out there and trials to get into so put a smile on your face, stick around here, give me he!! like the rest of them and together people will see you through this trying times.......... Welcome to the forum, nice "talking" to you.

[rivll]

No one can tell you how long you will live. You could easily live many more years.
Look, there will be drugs available for treatment within the next few years without interferon that could save your life. In the meantime, if you eat well and take care (drink lots of coffee, it slows the replication of the virus) you can make it.
I lost my ability to work and did not qualify for assistance so I do understand how difficult it is. But it is possible. We can send personal messages and I will tell you how I managed.

You are deeply depressed. I understand what you are experiencing. There is a feeling that your life has no value and I think it is the loneliest thing in the world to be so sick and alone in the world.
People that are on this forum are fighting for their lives. They are suffering terribly and fighting for one more day. I don't know what it takes for a person to find that fight, but hon, you need to find something within or without of yourself worth fighting for. Nobody here will encourage you to commit suicide, legal or not. But we will try to help you find resources so that you can have a better quality life and maybe make some friends.
Please hang on. I will pm you with what resources I can find and I will keep looking...do not give up.