Aa
New Here. Introduction
I was diagnosed with cirrhosis of the liver (secondary to Hep C)2 yrs ago. Was not symptomatic at all. Found out I was that far advanced only when I had my gall bladder removed. Was put on a 48 week hep c treatment. Interferon, Ribovarin and Incevic due to the cirrhosis. 20 weeks in, I went septic and came very close to dying. Treatment was stopped and was told I will no longer be a candidate for future hep C treatment.
I have been seeing a Hematologist at a transplant center (Vanderbilt University Medical Center). According to him I will have to have a transplant at some point. I have been doing ok..However since December I have hardly had the energy to even get out of the house. Have severe pain in my right side at times and periodically on the left also. Sick as hell and just do not want to do anything. Went for my appointment on the 2/15/14 to have MRI and labs. It seems the cirrhosis still progressing. That's the preliminary report anyway. There are so many questions. I am trying to become an expert on this. I am depressed more now than when this started. My ammonia levels seem to stay elevated which may be causing the depression. I'm sure it's not helping.
Hopefully when I get all the reports on these last test, I will have some answers and a treatment plan can begin. Glad I found this site. There is definitely a lot of information here.
Thanks,
Jerry
I have been seeing a Hematologist at a transplant center (Vanderbilt University Medical Center). According to him I will have to have a transplant at some point. I have been doing ok..However since December I have hardly had the energy to even get out of the house. Have severe pain in my right side at times and periodically on the left also. Sick as hell and just do not want to do anything. Went for my appointment on the 2/15/14 to have MRI and labs. It seems the cirrhosis still progressing. That's the preliminary report anyway. There are so many questions. I am trying to become an expert on this. I am depressed more now than when this started. My ammonia levels seem to stay elevated which may be causing the depression. I'm sure it's not helping.
Hopefully when I get all the reports on these last test, I will have some answers and a treatment plan can begin. Glad I found this site. There is definitely a lot of information here.
Thanks,
Jerry
Thank you so very much for the information! Its good to know there are others who can pass along their experience..
I do not know for sure how long I have had HCV. I was in a farming accident when I was 15 (1979). I lost my right leg below the knee and most of my calf muscle on the left leg. Laid in a hay field for almost 6 hrs. before I was found. Had a rough time recovering and infection almost killed me several times. I was given 64 units of blood throughout all the surgeries and complications I had. My Reg Dr, Infectious Disease Dr, and my Hepatoligist (you were correct) have all suggested with my past history of elevated liver functions from the age of 17, That I more than likely contracted HCV in a transfusion. Donor Blood wasn't screened that well and I believe that C was not even identified until later on..
I am aware of the new treatments available. However I am not a good candidate or as my hepatoligist says "not as good as they would like to see". He has assured me they are definitely still looking. Maybe I'll luck out. I hope so.
I am in the process now finding out if I have advanced to ESLD. I had a shift in labs that had elevated tumor markers and other changes that would suggest liver cancer. That is what warranted this latest round of test. I should be receiving those at any time now.
MELDS 19 as of previous labs. I think and think only V'bilt transplants with a score of 30. So everything is kinda hinging on a report of the latest finds.
hope they hurry up!!!!
Again, Thank you so much for your time and the information. It is greatly appreciated.
Jerry
I do not know for sure how long I have had HCV. I was in a farming accident when I was 15 (1979). I lost my right leg below the knee and most of my calf muscle on the left leg. Laid in a hay field for almost 6 hrs. before I was found. Had a rough time recovering and infection almost killed me several times. I was given 64 units of blood throughout all the surgeries and complications I had. My Reg Dr, Infectious Disease Dr, and my Hepatoligist (you were correct) have all suggested with my past history of elevated liver functions from the age of 17, That I more than likely contracted HCV in a transfusion. Donor Blood wasn't screened that well and I believe that C was not even identified until later on..
I am aware of the new treatments available. However I am not a good candidate or as my hepatoligist says "not as good as they would like to see". He has assured me they are definitely still looking. Maybe I'll luck out. I hope so.
I am in the process now finding out if I have advanced to ESLD. I had a shift in labs that had elevated tumor markers and other changes that would suggest liver cancer. That is what warranted this latest round of test. I should be receiving those at any time now.
MELDS 19 as of previous labs. I think and think only V'bilt transplants with a score of 30. So everything is kinda hinging on a report of the latest finds.
hope they hurry up!!!!
Again, Thank you so much for your time and the information. It is greatly appreciated.
Jerry
COMMUNITY LEADER
Here are my comments that may help you to understand your hepatitis C and cirrhosis better.
First I think you meant to say you are seeing a Hepatologist (a liver disease specialist) not a hematologist (a specialist in blood disorders) at your transplant center?
While you may no longer be a candidate for hepatitis C treatment due to your particular health status most patients with cirrhosis are eligible for treatment now with current treatment and most will be in the future because hep C treatment now is much safer than it ever was before. Even just last year. In fact patients now with advanced decompensated cirrhosis are being treated and there is an upcoming trial with people who has End-Stage Liver Disease who will be treating. You don’t say if your disease is compensated or decompensated. The triple treatment you did was known to have safety issues in cirrhotic patients and all patients but it had higher SVR rates if a patient could tolerate the side effects. New treatment and future hep C treatments are far safer than previous ones because either or both peg-interferon and Ribavirin, the drugs that cause these dangerous side effects and complications, can or have been eliminated. But each individual is different and have to be evaluated by their transplant center as to the risk vs. benefit of treating.
Being fatigued is the most common symptom of cirrhosis. Unfortunately as the cirrhosis gets worse the fatigue increases many times to the point where people with decompensated or End-Stage Liver Disease become disabled while awaiting liver transplantation. Many of us who have had liver transplants became too ill to perform are normal life activities including working and needed to go on Social Security Disability if we didn’t have another means of income.
As long as the underlying cause of your cirrhosis (hepatitis C) can’t be addressed your liver disease will continue to progress over time. This is true of all people with cirrhosis including those who have untreatable hereditary liver diseases, alcohol related cirrhosis (when a person continues to drink) and of course those who are chronically infected with the hepatitis C virus and can’t be cured. Since the progression of cirrhosis can’t be stopped, the liver will continue to fail and the only option is a liver transplant.
Clinical depression can be treated with medicines and if you are suffering from depression you should mention it to your hepatologist and they can refer you to a psychiatrist who can help you. It is not uncommon for people who have had a life-threatening condition such as sepsis or having advanced liver disease to become depressed. It is important for those who suffer from depression to seek help. The road to transplant can be emotionally very difficult. Many of us who have been transplanted waited years to be transplanted. During that time we lost are careers, that ability to do many of the things we normally had done our whole lives and our lives were drastically changed by our illness. Then there is the pain and suffering of complication from our liver disease that many of us go through as our livers fail. Some of us also have also come close to death during that time we are waiting for our transplants which is also emotionally difficult for anyone. Being clinically depressed can be dangerous because by its nature depression causes hopelessness. Feeling hopeless while we are suffering from End-Stage Liver Disease (ESLD) or Liver Cancer, both of which can be fatal can be the most difficult thing a person has ever gone through during their entire lives. If a person loses hope it can be dangerous as some folks can give up because they are overwhelmed by the suffering they are going through. Holding on the hope is one of the most important things needed by anyone with a life-threatening illness. Please talk to your hepatologist and have your depression assessed. No one needs the additional burden of suffering with clinical depression as they await transplant.
Why do some people with cirrhosis develop HE? The scarred liver tissue (cirrhosis) cannot carry out the process of changing toxins into harmless substances like a healthy liver normally would. When your liver can’t filter toxins from your blood or when blood flow through your liver is blocked, toxins build up in your bloodstream and can travel through the blood stream to the brain.
The severity of HE is judged according to your symptoms. The most commonly used staging scale of Hepatic Encephalopathy is called the West Haven Grading System.
• Grade 0: Minimal HE
This stage is very hard to detect as changes in your memory, concentration and intellectual functioning are so minimal that they may not be outwardly noticeable, even to you. Coordination can be affected and although subtle, may impact your ability to drive a car. If you recently had poorer performance at work or have committed a number of traffic violations while driving, it would be worth bringing this to the attention of your healthcare provider. You may be referred for special testing, called neuropsychiatric testing, to evaluate your thinking abilities by doing a number of specifically designed tasks with a trained examiner. If your test reveals some deficits, your healthcare provider will likely schedule frequent follow-up visits to follow your condition.
• Grade 1: Mild HE
You may have a short attention span, notice mood changes like depression or irritability, and have sleep problems.
• Grade 2: Moderate HE
You may keep forgetting things, have no energy and exhibit inappropriate behavior. Your speech may be slurred and you can have trouble doing mental tasks such as basic math. Your hands might shake and you can have difficulty writing.
• Grade 3: Severe HE
You may be confused as to where you are or what day it is and be extremely sleepy, but can still be woken up. You may be unable to do basic mental tasks, feel extremely anxious and act strangely.
• Grade 4: Coma
The last stage of HE is when the person becomes unconscious and slips into a coma. A coma can be life-threatening. The person should be immediately taken to a hospital Emergency Room.
There is treatment for HE and when properly treated it can in most cases control the symptoms. There are dietary changes that should also be made. No red meat for example and there are meds that can control HE. Lactulose plus Rifaximin (Xifaxan) if your insurance covers it. Treatment should be discussed with your hepatologist.
Also you mention MRI and labs. The lab tests depending on what tests were performed can indicate the status of your cirrhosis. Three blood tests are used to assess your MELD score which determines how advanced your liver disease is and how close you are to getting a transplant. The abdominal MRI scan is usually used to assess any physical liver related abnormalities (size of liver, spleen, nodules on liver, blood flow abnormalities, etc.) and can also be used with contrast to search for signs of liver cancer (HCC). People with cirrhosis have a higher risk of developing liver cancer (HCC) then others without cirrhosis. Surveillance for liver cancer (HCC) should be performed periodically on all cirrhotic patients so that if a person develops cancer it can be found in its early stages when it is still treatable. Like many cancers there are no symptoms in the early stages so periodic testing needs to be done in those that are at risk.
Talk to your hepatologist about your concerns. Their job is help you and keep you as healthy as possible until your transplant. Luckily Vanderbilt has a very short transplant waiting time for liver transplant compared to many transplant centers so your should have to wait very long for a transplant. There are currently 155 total people with all blood types waiting for a liver transplant at Vanderbilt. Your wait time would depend upon your blood type as well.
Best of luck to you Jerry!
Hector
First I think you meant to say you are seeing a Hepatologist (a liver disease specialist) not a hematologist (a specialist in blood disorders) at your transplant center?
While you may no longer be a candidate for hepatitis C treatment due to your particular health status most patients with cirrhosis are eligible for treatment now with current treatment and most will be in the future because hep C treatment now is much safer than it ever was before. Even just last year. In fact patients now with advanced decompensated cirrhosis are being treated and there is an upcoming trial with people who has End-Stage Liver Disease who will be treating. You don’t say if your disease is compensated or decompensated. The triple treatment you did was known to have safety issues in cirrhotic patients and all patients but it had higher SVR rates if a patient could tolerate the side effects. New treatment and future hep C treatments are far safer than previous ones because either or both peg-interferon and Ribavirin, the drugs that cause these dangerous side effects and complications, can or have been eliminated. But each individual is different and have to be evaluated by their transplant center as to the risk vs. benefit of treating.
Being fatigued is the most common symptom of cirrhosis. Unfortunately as the cirrhosis gets worse the fatigue increases many times to the point where people with decompensated or End-Stage Liver Disease become disabled while awaiting liver transplantation. Many of us who have had liver transplants became too ill to perform are normal life activities including working and needed to go on Social Security Disability if we didn’t have another means of income.
As long as the underlying cause of your cirrhosis (hepatitis C) can’t be addressed your liver disease will continue to progress over time. This is true of all people with cirrhosis including those who have untreatable hereditary liver diseases, alcohol related cirrhosis (when a person continues to drink) and of course those who are chronically infected with the hepatitis C virus and can’t be cured. Since the progression of cirrhosis can’t be stopped, the liver will continue to fail and the only option is a liver transplant.
Clinical depression can be treated with medicines and if you are suffering from depression you should mention it to your hepatologist and they can refer you to a psychiatrist who can help you. It is not uncommon for people who have had a life-threatening condition such as sepsis or having advanced liver disease to become depressed. It is important for those who suffer from depression to seek help. The road to transplant can be emotionally very difficult. Many of us who have been transplanted waited years to be transplanted. During that time we lost are careers, that ability to do many of the things we normally had done our whole lives and our lives were drastically changed by our illness. Then there is the pain and suffering of complication from our liver disease that many of us go through as our livers fail. Some of us also have also come close to death during that time we are waiting for our transplants which is also emotionally difficult for anyone. Being clinically depressed can be dangerous because by its nature depression causes hopelessness. Feeling hopeless while we are suffering from End-Stage Liver Disease (ESLD) or Liver Cancer, both of which can be fatal can be the most difficult thing a person has ever gone through during their entire lives. If a person loses hope it can be dangerous as some folks can give up because they are overwhelmed by the suffering they are going through. Holding on the hope is one of the most important things needed by anyone with a life-threatening illness. Please talk to your hepatologist and have your depression assessed. No one needs the additional burden of suffering with clinical depression as they await transplant.
Why do some people with cirrhosis develop HE? The scarred liver tissue (cirrhosis) cannot carry out the process of changing toxins into harmless substances like a healthy liver normally would. When your liver can’t filter toxins from your blood or when blood flow through your liver is blocked, toxins build up in your bloodstream and can travel through the blood stream to the brain.
The severity of HE is judged according to your symptoms. The most commonly used staging scale of Hepatic Encephalopathy is called the West Haven Grading System.
• Grade 0: Minimal HE
This stage is very hard to detect as changes in your memory, concentration and intellectual functioning are so minimal that they may not be outwardly noticeable, even to you. Coordination can be affected and although subtle, may impact your ability to drive a car. If you recently had poorer performance at work or have committed a number of traffic violations while driving, it would be worth bringing this to the attention of your healthcare provider. You may be referred for special testing, called neuropsychiatric testing, to evaluate your thinking abilities by doing a number of specifically designed tasks with a trained examiner. If your test reveals some deficits, your healthcare provider will likely schedule frequent follow-up visits to follow your condition.
• Grade 1: Mild HE
You may have a short attention span, notice mood changes like depression or irritability, and have sleep problems.
• Grade 2: Moderate HE
You may keep forgetting things, have no energy and exhibit inappropriate behavior. Your speech may be slurred and you can have trouble doing mental tasks such as basic math. Your hands might shake and you can have difficulty writing.
• Grade 3: Severe HE
You may be confused as to where you are or what day it is and be extremely sleepy, but can still be woken up. You may be unable to do basic mental tasks, feel extremely anxious and act strangely.
• Grade 4: Coma
The last stage of HE is when the person becomes unconscious and slips into a coma. A coma can be life-threatening. The person should be immediately taken to a hospital Emergency Room.
There is treatment for HE and when properly treated it can in most cases control the symptoms. There are dietary changes that should also be made. No red meat for example and there are meds that can control HE. Lactulose plus Rifaximin (Xifaxan) if your insurance covers it. Treatment should be discussed with your hepatologist.
Also you mention MRI and labs. The lab tests depending on what tests were performed can indicate the status of your cirrhosis. Three blood tests are used to assess your MELD score which determines how advanced your liver disease is and how close you are to getting a transplant. The abdominal MRI scan is usually used to assess any physical liver related abnormalities (size of liver, spleen, nodules on liver, blood flow abnormalities, etc.) and can also be used with contrast to search for signs of liver cancer (HCC). People with cirrhosis have a higher risk of developing liver cancer (HCC) then others without cirrhosis. Surveillance for liver cancer (HCC) should be performed periodically on all cirrhotic patients so that if a person develops cancer it can be found in its early stages when it is still treatable. Like many cancers there are no symptoms in the early stages so periodic testing needs to be done in those that are at risk.
Talk to your hepatologist about your concerns. Their job is help you and keep you as healthy as possible until your transplant. Luckily Vanderbilt has a very short transplant waiting time for liver transplant compared to many transplant centers so your should have to wait very long for a transplant. There are currently 155 total people with all blood types waiting for a liver transplant at Vanderbilt. Your wait time would depend upon your blood type as well.
Best of luck to you Jerry!
Hector
Hi Jerry - Welcome to the Forum!
You have definitely found the right place for information and support.
Sorry to hear things didn't work out with the triple treatment with Incivik.
It's a very tough treatment especially for those with advanced liver disease.
Fortunately the new treatments that are now available and others that will be available in the not too distant future offer hope to many. My guess is that you may be interferon ineligible at this point given your prior history.
My husband went through the same thing and had to quit after only five weeks. Because he is interferon ineligible he is now on Sovaldi + Ribavirin for 24 weeks. Geno 1a - Day 12.
The point is I know how difficult it has been for you. It is understandable that
depression is something you are dealing with. It is important that you lern as much as you can about this disease. It gives you a feeling of some control and it also helps you in your discussions with the doctor. Most importantly it will give you hope that one day you will get through the worst of this and move forward to a better life.
Keep coming back. There are many members here that can provide you with advice based on personal experience and knowledge gained by extensive research.
All the best to you.
Nan
You have definitely found the right place for information and support.
Sorry to hear things didn't work out with the triple treatment with Incivik.
It's a very tough treatment especially for those with advanced liver disease.
Fortunately the new treatments that are now available and others that will be available in the not too distant future offer hope to many. My guess is that you may be interferon ineligible at this point given your prior history.
My husband went through the same thing and had to quit after only five weeks. Because he is interferon ineligible he is now on Sovaldi + Ribavirin for 24 weeks. Geno 1a - Day 12.
The point is I know how difficult it has been for you. It is understandable that
depression is something you are dealing with. It is important that you lern as much as you can about this disease. It gives you a feeling of some control and it also helps you in your discussions with the doctor. Most importantly it will give you hope that one day you will get through the worst of this and move forward to a better life.
Keep coming back. There are many members here that can provide you with advice based on personal experience and knowledge gained by extensive research.
All the best to you.
Nan
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