Aa
Is untreated HCV a death sentence?
I have read many posts from people that say if untreated you wll die of complicatons of HCV. That is not true. Only 5% get liver cancer and it's hard to tell the progression of cirrohsis especially if your lifestyle is healthy. I've had HCV for 40 yrs and only stopped etoh 2009. Stage 0-1. People are different. I work in a hosptal ICU, 8 years and have seen 1 liver cancer from HCV and the patient was a heavy drinker. All the HCV patients I see in the ICU with GI bleeds, cirr. are actively drinking heavily. I am not saying this virus is a good thing to have, I am treating currently. I just want people who want to wait for less toxic drugs not to bee so fearful if their liver can wait.
Hector - you are incredibly insightful. Since I am at stage 2/3 - I better get going with that ABT-450 Trial right? It took me a long time to get that biopsy. They always told me your liver enzymes are high - but because I felt so healthy I paid no attention to it. My enzymes flatuated between up and down that I began to think it was "normal". Until one Dr. encoraged me to seek the Hep Specialist which of course recmmended th Liver Biopsy. I never knew about the stages until now. I hate that that I'm a point from stage 4. Is for the end for one? Is that the end stage to transplant?
Looks like I better not waste anymore time as many have posted here - time is of the essence and its better to be sick from the meds for a time then to wait for the worst. That is the essence of what I have gathered.
And, by the way - I started thiniking of that bucket list. :-)
Millie
Looks like I better not waste anymore time as many have posted here - time is of the essence and its better to be sick from the meds for a time then to wait for the worst. That is the essence of what I have gathered.
And, by the way - I started thiniking of that bucket list. :-)
Millie
I have had type 1 diabetes for, from my *estimation*, almost as long as I've had HCV.
The difference between having diabetes and having untreated HCV is that a person with diabetes creates their own fate through management of the disease (for which there IS no cure).
I wonder if, by the time this thread is closed, you will have found a way to demean every member one way or another. ;)
I saw an immunologist a few months ago. I have three autoimmune diseases now. All of them presented after I estimate I was infected with HCV. I asked the immunologist, if I am cured of HCV is there a good chance that I won't develop any MORE autoimmune diseases?
YES. But not enough is known about it.
Type 2 diabetes is linked to HCV. No real research has been done on type 1... But what is known is that type 1 is an autoimmune disease.
I tell ya, I'd WAY rather have diabetes than untreated HCV. How do I know? Cause I've got BOTH.
The difference between having diabetes and having untreated HCV is that a person with diabetes creates their own fate through management of the disease (for which there IS no cure).
I wonder if, by the time this thread is closed, you will have found a way to demean every member one way or another. ;)
I saw an immunologist a few months ago. I have three autoimmune diseases now. All of them presented after I estimate I was infected with HCV. I asked the immunologist, if I am cured of HCV is there a good chance that I won't develop any MORE autoimmune diseases?
YES. But not enough is known about it.
Type 2 diabetes is linked to HCV. No real research has been done on type 1... But what is known is that type 1 is an autoimmune disease.
I tell ya, I'd WAY rather have diabetes than untreated HCV. How do I know? Cause I've got BOTH.
I don't claim to know the answer, but I have also hear Vertex use a study which suggested that if a person were to live long enough, all of us would progress to cirrhosis that would result in death.
The study you quoted was based upon a 20 year infected result. The 30 year did not share that same result; it was much higher and I infer that the 40 year would be worse still. Make sense?
I'm not certain that this takes into account all other maladies, extra -hepatic issues such as IR/ diabetes, metabolic issues potential coronary /pulmomnary, renal,immune issues.... It seems that they are finding out there are many issues connected w/ HCV that in no way were on the radar on the decade old study about what might happen to us. It may no longer be true, it may never have been quite true.
Nor does it address quality of life in no way......
Off topic...... but yes, damage is not lineal, but sometimes due to the nature and subjectivity of biopsies, they may either give false hope that the results are not bad (if taken from a healthy area of the liver) or that one is sicker than one thinks. This can also be a reason that people seem to progress overnight...... and perhaps.....why some people who are cirrhotic may stay at at the same stage for over a decade. Same reason that fibroscans are good things; you get a better overall picture of the liver; it is not always homogeneous..
best,
Willy
The study you quoted was based upon a 20 year infected result. The 30 year did not share that same result; it was much higher and I infer that the 40 year would be worse still. Make sense?
I'm not certain that this takes into account all other maladies, extra -hepatic issues such as IR/ diabetes, metabolic issues potential coronary /pulmomnary, renal,immune issues.... It seems that they are finding out there are many issues connected w/ HCV that in no way were on the radar on the decade old study about what might happen to us. It may no longer be true, it may never have been quite true.
Nor does it address quality of life in no way......
Off topic...... but yes, damage is not lineal, but sometimes due to the nature and subjectivity of biopsies, they may either give false hope that the results are not bad (if taken from a healthy area of the liver) or that one is sicker than one thinks. This can also be a reason that people seem to progress overnight...... and perhaps.....why some people who are cirrhotic may stay at at the same stage for over a decade. Same reason that fibroscans are good things; you get a better overall picture of the liver; it is not always homogeneous..
best,
Willy
People are free to express their point of view fine, but to cloak it is "so called" facts when the facts are incorrect should be scrutinized as any other post here should be. Throwing around personal experience like it is a universal fact is misleading to those who may be new to hepatitis C and its progression. The purpose of the forum is to provide information and support to those with hepatitis C. Misleading and outright wrong information is not something that should be ignored or allowed because it is someones opinion. There are plenty of other HCV forums that people with day that taking vitamins and supplements will cure HCV and liver disease. This forum is unlike those others because its members have many years of experience living with and fighting hep C. Many have succeeded after repeated tries and have learned a lot during they road to cure. That is what makes this forum unique and valuable. If you just want to hear opinions there are all kinds of people that make up their own fantasies about hep C and how to cure it. We have lived with it and have worked with our doctors to give ourselves the best odds of success. And unfortunately for some their disease has progressed beyond where is is curable. But that hasn't made us start living in a fantasy world of denial.
"But you are more likely to die from driving an automobile." Who me? I'm afraid not. Unless my liver cancer is managed with all of the latest known treatments I will be dead in a few years at most. And anyone with decompensated cirrhosis and its complications is NOT more likely to die from a driving accident. If they don't get a transplant they will die from liver failure.
None of us choose to have ESLD or hepatocellular carcinoma (HCC) I can assure you. People don't get to choose which diseases they will have.
From your point of view 20 weeks of triple treatment is "terrible". Terrible is a relative term. "sick and tired of this". Is this your basis for evaluating someone with a potentially fatal illness.
Reality check:
How many life-threatening complications have you experienced on a reoccurring basis. Have you lose your job and career and seen you social life disappear due to the limitations that disease has put on you? How many hospital stays did you have in 2011? Have you written your Advanced Directive and decided when you will choose to have all treatment stopped. Have you talked to your family members and told them what you want to be done with your body. Have you had discussions with your doctor about how you will die and how painful it will be? Have you made peace with yourself so that if you should die tomorrow you will feel that you don't have any unresolved issues that should be addressed now as you never know if there will be another time?
When you do, let me know. You just might see the world from a different point of view then.
Hector (one of those mean, nasty people that gets upset when someone says he is just of of those 5% that don't really count anyway)
"But you are more likely to die from driving an automobile." Who me? I'm afraid not. Unless my liver cancer is managed with all of the latest known treatments I will be dead in a few years at most. And anyone with decompensated cirrhosis and its complications is NOT more likely to die from a driving accident. If they don't get a transplant they will die from liver failure.
None of us choose to have ESLD or hepatocellular carcinoma (HCC) I can assure you. People don't get to choose which diseases they will have.
From your point of view 20 weeks of triple treatment is "terrible". Terrible is a relative term. "sick and tired of this". Is this your basis for evaluating someone with a potentially fatal illness.
Reality check:
How many life-threatening complications have you experienced on a reoccurring basis. Have you lose your job and career and seen you social life disappear due to the limitations that disease has put on you? How many hospital stays did you have in 2011? Have you written your Advanced Directive and decided when you will choose to have all treatment stopped. Have you talked to your family members and told them what you want to be done with your body. Have you had discussions with your doctor about how you will die and how painful it will be? Have you made peace with yourself so that if you should die tomorrow you will feel that you don't have any unresolved issues that should be addressed now as you never know if there will be another time?
When you do, let me know. You just might see the world from a different point of view then.
Hector (one of those mean, nasty people that gets upset when someone says he is just of of those 5% that don't really count anyway)
Well i'm sure not going to make it sound like i'm blaming the good people here for me deciding to do treatment, I mean when you have already treated once and then decide to do it again, whos to blame then?
Life is a gamble, we do the best we can, but bad things happen sometimes no matter how much we try to avoid them. There is so much money in the treatment of HCV that the incentive is there for better and better treatment. If you can wait.
No one knows why some can live their lives to old age with HCV and few problems, while others progress rapidly to develop debilitating diseases. I work in a place where the sickest of sick are treated. Obesity, smoking, diabetes, HTN are the illness with complications I see the most of. This treatment has been horrible for me. In hindsight I wish I had waited for less toxic medications, I had that luxury of waiting. I hated having this virus so much, plus didn't know how I would lose more then 6 months of my life. I don't think it was worth it. Too late now, I'm almost done, and what will be will be. I wish all the best in the path they choose to take, and most of all, try not to be afraid. That is why I treated, fear.
No one knows why some can live their lives to old age with HCV and few problems, while others progress rapidly to develop debilitating diseases. I work in a place where the sickest of sick are treated. Obesity, smoking, diabetes, HTN are the illness with complications I see the most of. This treatment has been horrible for me. In hindsight I wish I had waited for less toxic medications, I had that luxury of waiting. I hated having this virus so much, plus didn't know how I would lose more then 6 months of my life. I don't think it was worth it. Too late now, I'm almost done, and what will be will be. I wish all the best in the path they choose to take, and most of all, try not to be afraid. That is why I treated, fear.
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