My husband was diagnosed with stage 4 of cirrhosis of the liver, I'm so worried, he's only 61yrs. old and we have alot to live for, what do we do next and what should we know and also what questions should we ask his Dr. PLEASE HELP I am so desperate! Thank you, Joannf
Hi Joann, sorry to hear about your husbands diagnosis, there are many causes of cirrhosis, this is a hep c based forum, I will post some info and a link you read that might help, if your husband drinks it is highly recommended that he stops. Follow the link at the bottom of this for good info on all types of cirrhosis.
What causes cirrhosis?
Cirrhosis has various causes. In the United States, heavy alcohol consumption and chronic hepatitis C have been the most common causes of cirrhosis. Obesity is becoming a common cause of cirrhosis, either as the sole cause or in combination with alcohol, hepatitis C, or both. Many people with cirrhosis have more than one cause of liver damage.
Cirrhosis is not caused by trauma to the liver or other acute, or short-term, causes of damage. Usually years of chronic injury are required to cause cirrhosis.
Alcohol-related liver disease. Most people who consume alcohol do not suffer damage to the liver. But heavy alcohol use over several years can cause chronic injury to the liver. The amount of alcohol it takes to damage the liver varies greatly from person to person. For women, consuming two to three drinks—including beer and wine—per day and for men, three to four drinks per day, can lead to liver damage and cirrhosis. In the past, alcohol-related cirrhosis led to more deaths than cirrhosis due to any other cause. Deaths caused by obesity-related cirrhosis are increasing.
Chronic hepatitis C. The hepatitis C virus is a liver infection that is spread by contact with an infected person's blood. Chronic hepatitis C causes inflammation and damage to the liver over time that can lead to cirrhosis.
Chronic hepatitis B and D. The hepatitis B virus is a liver infection that is spread by contact with an infected person's blood, semen, or other body fluid. Hepatitis B, like hepatitis C, causes liver inflammation and injury that can lead to cirrhosis. The hepatitis B vaccine is given to all infants and many adults to prevent the virus. Hepatitis D is another virus that infects the liver and can lead to cirrhosis, but it occurs only in people who already have hepatitis B.
Nonalcoholic fatty liver disease (NAFLD). In NAFLD, fat builds up in the liver and eventually causes cirrhosis. This increasingly common liver disease is associated with obesity, diabetes, protein malnutrition, coronary artery disease, and corticosteroid medications.
Autoimmune hepatitis. This form of hepatitis is caused by the body's immune system attacking liver cells and causing inflammation, damage, and eventually cirrhosis. Researchers believe genetic factors may make some people more prone to autoimmune diseases. About 70 percent of those with autoimmune hepatitis are female.
Diseases that damage or destroy bile ducts. Several different diseases can damage or destroy the ducts that carry bile from the liver, causing bile to back up in the liver and leading to cirrhosis. In adults, the most common condition in this category is primary biliary cirrhosis, a disease in which the bile ducts become inflamed and damaged and, ultimately, disappear. Secondary biliary cirrhosis can happen if the ducts are mistakenly tied off or injured during gallbladder surgery. Primary sclerosing cholangitis is another condition that causes damage and scarring of bile ducts. In infants, damaged bile ducts are commonly caused by Alagille syndrome or biliary atresia, conditions in which the ducts are absent or injured.
Inherited diseases. Cystic fibrosis, alpha-1 antitrypsin deficiency, hemochromatosis, Wilson disease, galactosemia, and glycogen storage diseases are inherited diseases that interfere with how the liver produces, processes, and stores enzymes, proteins, metals, and other substances the body needs to function properly. Cirrhosis can result from these conditions.
Drugs, toxins, and infections. Other causes of cirrhosis include drug reactions, prolonged exposure to toxic chemicals, parasitic infections, and repeated bouts of heart failure with liver congestion
Can you tell us if your husband has Hepatitis C and, if he does, what is his Genotype. If he has treated before, what happened. This information will help people to be able to better respond and give you more information on available treatments.
Regardless, if he has cirrhosis (stage 4 fibrosis) he should be under the care of a Hepatologist at a major medical center. If he has Hepatitis C and undergoes treatment for ithe Hep C, he should be under the care of a Hepatologist who is affiliated with a large medical center/transplant center.
You did not state the underlying condition for his cirrhosis? Does he have hep. C?
People can live a long time with cirrhosis, it is not an automatic death sentence.
You need to know if he has decompensated cirrhosis or compensated cirrhosis.
If he has compensated cirrhosis and he has hep. C he will need to discuss treatment options to deal with the hep.C.
If he has decompensated cirrhosis, then you need to help him get into the nearest transplant center for an evaluation. There are many people on the board who can advise you more thoroughly than I, but I want you to know there are steps you can take. Don't panic and don't assume the worst.
If you are new to this you may not know yet, first thing is if he drinks alcohol in any form STOP NOW!
There will be others along with much better information than I can give. I am 60 in stage 4 which is cirrhosis. I look marvelous! and never showed much sign of cirrhosis. Everyone feels the fear upon finding out, it's ok but try to take a deep breath. What have they done to determine he has cirrhosis? ct scan, sonogram(?), other pokes and prods, most importantly a liver biopsy? Fill us in a little.
You'll want to ask for a MELD score, Others will explain it better than me. It gives a better idea of the severity of cirrhosis.
Eventually, like in a few months, after testing etc., start tx. The new treatment is a 3 drug combo of Incivek, Interferon and Ribavirn, with a success rate of 80-85%, even for those with cirrhosis, even for those with cirrhosis and have relapsed on a prior tx of just Interferon and Riba. This is almost double the success rate of prior treatments (tx). So there is hope out there. Get positive and get determined. Stay with this group, it's unbelievable the help, support, and strength these people give.
oh, try and get copies of all his medical tests, etc.,
We are not doctors here. We are patients with histories of being infected by hepatitis C and having the resulting liver damage from the virus. Some of also have cirrhosis.
Please know you are not alone. There are many of us in our 50s and 60s with cirrhosis of the liver. Help is available and has never been better. Try to take it slowly and realize your husband can be helped. I understand it is all new and overwhelming. We cirrhotics have all gone through the phase you are going through now of panic, fear, worry and despair. Trust me, it does get better. You are having the same reaction as any one would. But if you do the right things your husband can be in good hands and helped to get though this medical challenge. It is not the end of the world but it is an opportunity to take stock of the value of health and life and that can be a good thing.
I have had cirrhosis of the liver for at least 5 years now so I am familiar with your husband's condition first hand. Though hopefully he is not as sick as I am.
There are very different degrees of cirrhosis. You don't mention if your husband is having complications from his cirrhosis or not but either way...
First your husband needs the appropriate medical care for his condition. Medical support that can assess the nature and degree of his illness. Cirrhosis can be minimal or life-threatening determining where he stands is vitally important. Therefore he needs a referral to a liver transplant center in NYC. They are the only medical people that can help him with his cirrhosis. There are a number of very good transplant center there so you are lucky to live where you do. Advanced liver is a complicated process and only transplant centers have the knowledge and experience to access, monitor and care for cirrhotic patients like your husband. Of course when someone has a potentially fatal illness, it is well worth any difficulties that might be encountered along the way to get the best care possible. A life can be in the balance.
At the center he will have a total health status evaluation and that will determine exactly how damaged his liver is and what options are available to him. If his liver disease has been caused by hepatitis C if he is still healthy enough, he may still be able to treat the virus. There is always the options of a transplant should he not be able to stop the progression of his liver disease.
Try to take it one step at a time and over time you will learn more and more and will be able to help your husband get through the challenges ahead. This is a voyage none of us choose but we can certainly make the best of a bad situation. Turn lemons into lemonade so to speak.
If you need detailed help along the way please send me a private message and I will help you both get through this. I am currently waiting for a liver transplant myself as I have developed liver cancer due to my hep C and cirrhosis and transplant is my only chance of surviving at this point. I am also listed for transplant at two transplant centers so I have been through he process twice. I am listed here at the University of California San Francisco and at Yale-New Haven Hospital in New Haven, CT.
Hang in there! Things may not be as bad as you think.
Let us know how the transplant center experience goes.
Yes,he jas HepC,but I thought that HepC turns into cirrhosis,we live in NY,does he have to be put on a transplant list ,we just found out yesterday and he doesn't have an appt. with his Dr. untill May 18, should I demand a sooner appt. and his Dr. is a gastro, guy, how could a person look so good and be so ill??I'm so desperate, we've been married for 40 years and now we thought we would get to enjoy the so-called golden years, My husband was a herion addict 30 years ago and has been clean for 30 years, he's a fantastic husband and father,I just don't know how to live without him,Thank you for the info!!Joann
Anout 20% of people with Hep C get cirrhosis. But, if your husband was already diagnosed with cirrhosis, then he apparently has it.
If your husband looks good and has no symptoms, then May 18th is probably fine for an appointment.
I am not the expert on the forum, but I do know he should be seen and evaluated by a Hepatologist at a liver transplant center and he should then be under that doctor's care.
Hector is exceptionally knowledgeable about cirrhosis, Hep C, compensated and decompensated liver disease, liver transplants, and just about everything there is to do with livers. I would suggest you follow Hectar's advice in the post above. That will give your husband the very best chance for a successful outcome. As Hectar said, he will provide you with more details if you send him a private message.
Hi there. I'm sorry to hear about your hubbies diagnosis. I can tell you that I was diagnosed with cirrhosis in 1991 right after I found out I had hepatitis C. I tried all the treatments as they became available and I have never gotten rid of the virus. I am still here 21 years after my cirrhosis diagnosis. I have been very well cared for by my gastroenterologist. I don't know where your town is located. I doubt it is near Manhattan. That is where the majority of hepatologists in the state practice. I don't believe every cirrhotic patient needs to be evaluated by a hepatologist at a transplant center. As I said, I have been treated beautifully by a very knowledgable gastroenterologist. But if you do want or need to go into Manhattan each of the teaching hospitals have wonderful hepatology units.
Please try not to worry too much. With good care your hubby can have many years of quality life ahead of him. Healthy life style behaviors, like no alcohol, no smoking, and being monitored by his physician, can go a long way in keeping him healthy. I wish him lots of luck.
Generally speaking, Cirrhosis is a slow moving condition. Your May 18 dr.'s appt. is just around the corner, so don't panic. Keep the appt. and see what his doctor recommends. Since he has Cirrhosis, he should be referred by his doctor to a hepatologist, a liver specialist, to see if he can treat his Hep C. Treating his Hep C will hopefully prevent further damage to his liver. A hepatologist will manage his liver care and do everything possible to try to keep his liver working properly. As an FYI, Hep C virus causes the liver to form scar tissue, which over time increases to a point where it becomes Cirrhosis and may, over time, affect the liver's ability to function properly. Also, as an FYI, most people who have Hep C and Cirrhosis look great and feel pretty good. Many don't know about their diagnoses and have no symptoms, until the liver begins not to function properly. The good news is, your husband knows and his liver is still working. There is time for a good hepatologist to assess and determine the best course of treatment and management of his liver health.
Please try to calm down. (Easy for me to say.) Being diagnosed with hepatitis C is not the end of the world or your retirement plans. Seriously it is not helpful to yourself or your husband. You need to be able to think clearly in order to help your husband with his virus infection. There are 4 million people in the US living with hepatitis C. It is a curable disease if he gets proper treatment. That should be your focus.
“I thought hepatitis C turns into cirrhosis.”
No, hepatitis C doesn’t always turn into cirrhosis for the vast majority of people with hepatitis C.
May 18th is fine. You husband has probably had hepatitis C for 30 years as it is commonly transmitted through IV drug use he just didn’t know he was infected for the last 30 years. Weeks or months make no difference as far as a doctors appointment for most persons with hepatitis C.
"How could I guy that looks so good be ill?"
That is the nature of liver disease. If the disease had progressed to an advance stage your husband would not be fine. So your husband is lucky he is not terribly ill yet from his hepatitis C.
Having hepatitis C is not a death sentence. You are misinformed. Look at all these people on this forum most have or have cured their hepatitis C. They are not dead. Please educate yourself about hepatitis C so you understand what is happening to your husband. Ask the doctor questions during his visit so you understand your husband condition.
Please read the following guides to understand the basic facts of hepatitis C. It will help you understand the virus and how it can be treated.
Thank you and everyone for all the positive feeback, it was inspiring to hear that you are living with cirrhosis for 21yrs. God Bless you!! Do you have a special diet? Are you on meds?Oh we do live near Manhattan ,we live in Long Island,my husbands Dr. is in Manhattan his name is Dr. Lusbahter he's affiliated with NYU hospital, do you know any other specialists in NY,by the way I don't know if I spelled the dr.'s name correctly, if you have any other info please let me know!! Thanks again
Thank you for all the info,I'm so sorry about your diagnosis but my heart is telling me your gonna be OK!!I'll pray for you too!!My husbands DR's appt. is May18th,should I demand a sooner appt,?I have to tell you,you are so knowledgeable about this horrible disease and your info is much appreciated,I will take all this in and I have a feeling we have a tough road ahead and I'm petrified,oh I don't know if I told you but my husband does have HepC,I feel like its a double wammy!!I will wait to see the Dr. on May 18th and then go from there or should I try to get in touch with a transplant center on my own??JoannF54
I'd like to thank everyone for all the info and for being supportive! It's a big help knowing there is somewhere to go to talk about this,I feel some people feel like its a self inflicted disease, especially my husbands family! I know that he was a herion addict 30 years ago and has been clean since then,but he or anyone else doesn't deserve this disease!! We are all human and sometimes we make mistakes but I think people need second chances and third and forth if need be!I hope everyone here gets better and is able to deal with the meds and everything else that you have in front of you! God Bless you all!!I will be taking all the advice and will keep everyone posted!!Thanks again for everything!! JoannF54
There are a number of excellent hepatologists in NYC. They are at Columbia Presbyterian, Mt. Sinai, Cornell and NYU. There is Ira Jacobson, Dr. Tepper, Henry Bodenheimer, Nancy Bloch, and Doug Dieterich, to name a few. If your husba nd needs a hepatologist I am sure his doc knows them all and will refer him. As I said, my gastro has kept me healthy for a very long time.
The only liver rmeds I am on are actigall for fatty liver. My doc says it may not help but it certainly won't hurt and Diovan which was a study drug at Mayo Clinic and UMass and was proven to stabilize fibrosis progression in about 1/2 the patients who took it. I wonder how many people are on that? I've been on it for 5 years now.
Like others have said, try not to panic. See what your husband's doctor is like and if you have confidence in him, stick with him. If it comes time for a transplant center, you have many nearby.
As far as foods go, it wouldn't hurt to avoid red meat and salt, although normally that is for those with advanced cirrhosis.
The liver is a filter. It filters everything we eat and even what we breathe.
Therefore the best way to eat for a healthy liver is preferable with fresh organic food. Avoid processed foods.
And of course, no alcohol !
"DR's appt. is May18th,should I demand a sooner appt,?"
You say your husband has been diagnosed with cirrhosis of the liver. You have never said if your husband has been showing complications of cirrhosis. Meaning....bloated abdomen, ankles and feet. Vomiting or defecating blood. Loss of memory and coordination, slurred speech or stupor. These are some of the common complication of advanced cirrhosis. They that can be life threatening. If he is experiencing any of these he will be giving drugs to help manage these complications.
It is also possible to have cirrhosis and have no complications. This is known as "compensated cirrhosis". It is the early phase of cirrhosis and not life-threatening.
If he is not having any of the complications of cirrhosis there is no need to rush to seek medical treatment. A few weeks waiting means nothing in the history of liver disease the develops over decades.
Also your husband will probably need a referral from his doctor to be seen at a transplant center. They will assign a hepatologist as his main doctor at the center. No need for you to seek out a hepatologist. Ask his doctor for a referral at his next appointment on May 18th.
Here is the contact info for the NYU Transplant Center so you have it.
The Mary Lea Johnson Richards Organ Transplant Center
403 East 34th Street
New York, NY 10016
"Hep C, I feel like its a double wammy!!"
Hepatitis C is the most common cause of cirrhosis of the liver in the U.S. This is nothing unusual at all. Hepatitis C causes liver damage over many decades. After 20-40 years the liver is continuing injured by the virus until the liver becomes completely scared. This is what cirrhosis is. Your husband at 61, the age when the effects of the virus show themselves. The vast majority of people with cirrhosis caused by hepatitis C are in their 50s and 60s.
"some people feel like its a self inflicted disease, especially my husbands family!"
That is their issue. Would they say the same if one of them developed cancer because they smoked cigarettes? Or have heart disease because of their diet and life style? It is probably their unsolved angry about your husband's former lifestyle that is something they have to come to terms with. If they are the hateful and they don't care for a family member because of their own issues that is on their conscience. You will find that some people who you thought were friends aren't and you will find others who will step up and support you both. This is what happens. A crises brings out people's true nature. It is better to know who really is on your side and who isn't. It is better for both your lives. Then you won't waste time with people that don't really care. Life is too short in my opinion.
My husband has had Hepatitis C for 10-15 years as one doctor said and 20 by another. He has cirrohis and the way he found out was vomiting blood and black stools. He spent 6 days in ICU with endoscope and banding of the varices. His type is genotype 4 (like all Egyptians he has never used drugs and drinks no alcohol.) According to the WHO some innoculations for schistomasis are what spread the Hep C. A doctor told me 85% of Egyptians have Hep C. He is now out of the hospital and being treated by a gastroenterologist and is out of the woods and doing much better. The doctor wants to do another endoscope but in the hospital they said they wouldn't do a second one because it was invasive and causes damage in itself. I am frightened by the thoughts that doing the enscopy again can start the bleeding again. Anyone been through this?
My husband is on the meds for hep C and he's soooo ill and his skin is full of hives and he gets out of breath very quickly, it seems the meds are making him sicker than the disease, is this normal?? Also he's exhusted all the time it seems like the meds are kicking his butt!!
Fatigue is probably the most common side effect of treatment. It's important that he not just give in, and lie around for the entire time. Try to get him to take a walk daily, do some stretches, whatever is possible.
The shortness of breath is from the ribavirin. It may be possible to reduce his dosage, check with his doctor.
Be sure he drinks lots and lots and even more water. It does help.
Yes, these meds that kick his butt are currently the only thing we have to kick hep C.
With cirrhosis, treatment is more difficult.
As someone who's been through a transplant from hep C, I can tell you that if he gets rid of the virus, the difficulties now will be worth it.
It is not an easy ride. Just take it day by day.
My husband went through triple treatment (with telapavir) with decompensated end stage liver disease. He was only able to stay on treatment 5 weeks. He didn't leave the house for the full five weeks becuase he was so sick. He wanted to stop after the first week but his doctor told us if he stopped he would not be able to go back on. So he stuck it out as long as he could. He finally had to stop treatment because he became severely anemic.
The doctor told us the virus which was undetected (<43) at the Week 4 testing would likely come back quickly. Well it is now almost 8 months later and he is still undetected. He had a liver transplant on June 3rd and is doing great.
Miracles do happen every day. Stay positive and know that
there is help out there. My husband had to go to another state (NC) to get his transplant as there are just too many people waiting in the NYC area and not enough donors. Look into all your options. Go to the unos.org website and read the data reports of the transplant centers around the country.
I have been where you are. My advice is do the research, get educated about the disease and take the steps necessary to help him. He needs you to be the strong one right now.
I wish you well! I really do know how hard it is but I'm here to tell you there is a light at the end of the tunnel.
ok...here I go....I have been drinking off and on for the last 30 years. Only beer. I don't have symptoms of cirrhosis, but a lot of concerns. I don't have fatigue, but when I push on my skin there are yellow marks. I don't feel like eating very much. OK I do have symptoms of cirrhosis.. aversion to eating, weight loss, lost a lot of hair recently, but it's growing back,
I am a hep c, cirrhosis, diagnosed with terminal liver cancer in 2006, patient, was told only chance was transplant. Went to 2 different hospitals for testing for transplant. 2nd hospital put me on chemo & implanted chemo into liver. 1 tumor turned into 9 to late for transplant!! Quit chemo, started using God's Pharmacy in 2009 & I am still here in 2013 with my own liver & feeling GREAT!! Lifestyle Change, Herbal supplements, Nutrition (organic)!! I wish I knew if there is anyone else who is still living with own liver after all these diseases!!
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