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.
"I have read many posts from people that say if untreated you will die of complications of HCV... That is not true. Only 5% get liver cancer"
Although it's true that it's a minority of folks with hcv that die from it, it's a very real risk factor that exists. Certainly folks are well within their rights to take their chances, but a healthy lifestyle is no guarantee. My husband has not touched a drop of alcohol in over 25 years, but the truth here is that he will still most likely die from complications of HCV and HCC. The unfortunate reality is no one can predict whose liver can wait and whose can't.
"Only" 5% is not a small number if you or your loved one is one of that 5%.
I agree that people should really consider waiting with more effective and possibly less toxic drugs being developed.
I don't really remember very many posts where people state that you will die if you don't treat, but as eureka mentioned if you or your loved one have progressed to that point the percentage is of little consolation.
I also wonder if those statistics about the percentage of people who become very ill or die from HCV will increase as they track a larger group of us for longer. The progression of the disease is not linear, one of the reasons many of us on this forum in our 50s and 60s who have had the disease for a long time are experiencing accelerated progression and treating.
True, if left untreated, more will die 'with' it than 'from' it. But remember that we're living longer these days and the non-fatal complcations of HCV could make your remainig QOL relatively low. If someone were able to tell me "Your insulin resistance comes from carrying the HCV and your B12 deficiency and neuropathy come from the IFN." Or vice versa. Then I could give you an honest 'opinion' about the value of tx - in my particular case. But I don't know if the medical community have the knowedge or the resources to carry out that analysis yet. I know my wallet doesn't.
So we inform ourselves the best we can and make the decision that works best for ourselves.
I agree that everyone with HCV is not going to die "of" HCV and many will die "with" HCV but "of" something else. But I also do not think HCV is benign (not saying anyone else does either) and I think HCV causes a lot of damage to the body that is not always attributed to the HCV and/or is not always noted or reported, especially in people who have not even been diagnosed yet.
"I also wonder if those statistics about the percentage of people who become very ill or die from HCV will increase as they track a larger group of us for longer." I agree with Dave on this and I have a feeling that those statistics may change.
I don't think people need to rush into treatment, especially if they have no liver damage. People with no or minimal damage have some options and can wait a bit longer. But for those of us who have already had some complications from HCV or who are creeping up in liver damage, and also creeping up in age, we need to make some decisions sooner rather than later.
I started treatment because I am Stage 2, Grade 2 and I have had complications from HCV in the past. I have no idea how fast the liver stages progressed since I was diagnosed only in July of this year. I don't know if I reached Stage 1 ten years ago or Stage 1 one year ago or how long it took me to progress to Stage 2. What I do know is that I am 65; I am not 30 or 40. I could have waited to treat until the next all oral drug regimen comes out. However, I might be 70 before that happens. What Stage will I be in then? Stage 3? Stage 4? Will I have some other disease by then that makes it difficult to treat or that prohibits me from treating. I have read posts on this forum by people who have progressed rather rapidly from Stage 1 to 2 or 1 to 3 or even to cirrhosis.
I think deciding when if and when to treat is a personal decision. There are so many factors involved. Having all of the data and information, including the risks of waiting and the risks of treating, helps us make informed decisions. I think this forum is great for helping all of us know more about HCV and treating HCV and to better be able to make those informed decisions.
I just wanted to mention that judy is not close to being an insensitive person. I have experienced her compassion and empathy many times first hand. I am sure she her intent is not to insult or hurt anyone. She has been a good and kind friend.
It's 3% per year who get liver cancer. Sounds like a small chance but it builds up over the years. It happened to me and I was in great shape (better than the doctors). I absolutely thought I wouldn't be in that 3%. Haven't drank alcohol in nearly 20 years. I would treat, it's bad but not nearly as bad as HCC, etc. And you can always stop at any time. The treatment also gets harder with more side-effects the worse shape your liver is in. I went from stage 1 to stage 4 in a just a few years after having had the virus for 25 years.
I agree with Dave that Judy is very caring and sensitive and has supported me (and others) with her kind words. I don't see anything wrong with the post. It is just putting forth the thought that some people have options to wait and do not need to rush into treatment. New people coming on the forum should be able to hear all sides, pros and cons. Then they can make informed decisions.
"Is untreated HCV a death sentence"
I could have easily answered the post, well, "Yes. It is for my husband."
Judy goes on to say:
"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 do not think Judy was being insensitive, but perhaps her personal experience, or lack thereof, has not made her sensitive to those who do everything by the book and still have to die from it, and that hurts.
I'm sure she did not mean to offend.
I should have chosen my words more carefully.
I never got liver cancer although, at the time of my transplant, I was living on 8% of my liver.
The surgeon said I had about 6 weeks of life left~all because of HCV effect on my liver.
Cirrhosis can kill without cancer.
Currently being on treatment, and with my own personal history, I'm a bit sensitive about the subject, not to mention riba rage rearing its ugly head.
HCV certainly does not need a poor life style and heavy drinking to do serious damage. Anyone of us could be in you and your husband's shoes. Anyone one of us could have or may need a transplant to survive some day like orphanedhawk.
Hopefully Judy know's that it does not take a poor lifestyle to get to this point and was speaking from feeling ill and being on treatment.
Hopefully you know how much we all care about you and your husband.
The original "question" and title really wasn't her question, was it?
Maybe she's so sensitive as to be fearful of making it a statement?
Judy apparently has her own opinion already to the question she posed, as exhibited by her text after the question... her intent may not have been to offend, but by the same token, her thoughts after the title makes the rhetoric a bit insulting.
My hepatologist told me that if I didn't start treatment within the next couple of months....."you could be in serious trouble within the next two years". I guess there could be many interpreatations of his comment but I sure as hell don't want to find out due to non treatment. Anxiously waiting for Jan 13!
I realized after some of you posted that I had not read the comment thoroughly. I read the title and responded to other peoples comments without noticing the comment about people drinking and their life style causing their disease to progress. I am surprised by it honestly and should have read more carefully. I would have found it quite insulting also if I had read it. I suppose Judy will speak for herself and Dave should be more thorough before commenting.
Comparing illness and the attendant suffering from one person to another is dehumanizing and invalidating to everyone. I think of John Donne, Meditations XVII '(paraphrase)...each one of us is but a part of the whole...Ask not for whom the bell tolls, it tolls for thee." I am stage 0, gr 3; I chose to treat now while I was in better health, stamina, a younger(relatively speaking) age and most importantly to have this psychic wasp's nest from hanging over my life. I am thankful to be able to treat for 28 weeks; I often think of eureka's husband's experience-God Bless him for his patience and endurance with 100+ weeks of tx.
pcds and her personal experience in ICU doesn't speak to me personally a whole lot. Because intervention other than TP at end stage does not prolong life, most patients dying of ESLD or HCC don't go to ICU. Most likely when the time comes my husband will choose to spend his last days at home with loved ones rather than with strangers who know nothing about what it means to suffer with losing the battle to hcv. ~eureka
"I have read many posts from people that say if untreated you will die of complicatons of HCV."
I don't remember "many" posts saying this is the case and if they did they would have been corrected by others here who know the facts.
"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."
What are you trying to say about liver cancer and cirrhosis?
Yes, people are different and not everyone will be as lucky as you. So why are you drawing broad conclusions based on your own case?
The fact is that most people that die from liver disease die from liver failure (ESLD) without HCC. Hepatitis C is the leading cause of liver transplants in the US.
Does everyone with hepatitis C eventually develop liver cancer?
No — in fact, most don’t. About 20 percent of people with hepatitis C develop cirrhosis — advanced liver scarring caused by decades of inflammation. Of those who do develop cirrhosis, about 20 percent eventually develop liver cancer. So overall, among all people with hepatitis C, the chance of developing liver cancer at some point in your life is about 4 percent. So what happened to the 20% that develop cirrhosis? You don't see them at your hospital so they don't exist?
"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.
Your hospital is not representative of hospitals in the US. If the only patients you see with cirrhosis are people abusing alcohol while it may be true where you work, is not the common experiences at hospitals in the US. I personally have meet over a hundred patients with cirrhosis and End-Stage Liver Disease from all areas of the northwest US and I have heard of their experiences in hospitals small and large and the majority of them have hepatitis not alcoholism as the cause of their cirrhosis.Go to any transplant center in the US and see who the pre-transplant patients are. You may be surprised.
"not to bee so fearful" Have you ever seen someone dying of liver failure? That doesn't make you fearful to look like a concentration camp survivor (skin and bones), their body covered with bruises, with a huge abdomen, out of their minds with encephalopathy or in a coma? While the general public is shielded from such things surely you have see at least one person dying from ESLD.
"the progression of cirrohsis especially if your lifestyle is healthy."
Because I person has a healthy lifestyle will not prevent a person developing cirrhosis. Cirrhosis is caused by the liver being injured. This is what the hepatitis C virus does. The liver tries to protect itself which causes fibrosis which over time can develop into the complete scaring of the liver. I.E. Cirrhosis. This is basic 101 knowledge about how hepatitis C causes liver disease.
"I just want people who want to wait for less toxic drugs not to bee so fearful if their liver can wait."
All fine and good IF they can wait. But not everyone can wait. As all reasonably knowledgeable people know as liver disease progresses to stage 3 and stage 4 treatment becomes less effective. In fact the degree of advanced liver disease it the greatest factor in determining the rate of SVR. Not IL28b. Not race. Not diabetes etc. And of course there are those that decompensate and then it is too late to treat their hepatitis C in order to save their liver. What about them? You don't see them so they don't exist? Now 0%.
"Only" 5% is not a small number if you or your loved one is one of that 5%.
Gee I thought I was part of the 1% should I feel lucky to be part of the 5% too?
If the OP ever does get back to this discussion, I'd like to ask a few things, since her question seems more rhetorical than not, as she says at the end of her post that "I just want people who want to wait for less toxic drugs not to bee so fearful if their liver can wait."
1. So if you are Stage 0-1 why are you treating?
2. Are you fearful that your liver can't wait because of lifestyle?
3. Do you really think that people who have cirrhosis or HCC do because they are drinkers?
I chose to treat @ stage 0, and in a lla or b clinical trial w/only 36. simply because, I'm not getting any younger and I know my health insurance might kick the bucket. Plus I did not want to die like my mother ESLD.
Reading all these comments by Dave, Eureka, Hector, Bill and the many other's of you, Has made me realize. I did not ask all the right questions or do all the research I could of. But last I heard (lucky me ;-).) I was UND one month after tx.
Now I am left with question's in my mind. What other death's or diseases can one get from HCV. like pancreatic cancer, lupus, leukemia, dementia etc.?
Thanks for all of these great views you all have.
I have cirrhosis. I have had HCV for 45+ years. I am not a drinker. HCV is the reason for most adult liver transplants. 3-5% of cirrhotic patients get liver cancer per year. That is more than just 5%. While Judy may not mean to be insensitive, her post is incorrect and hurtful.
I am not minimizing how horrible liver cancer is if you are one of the 5%. But you are more likely to die from driving an automobile. If I had to pick, I rather have untreated HCV then diabetes. Besides I am expressing a point of view and this forum has become self righteous, judgemental and an uninviting place to be.
Too bad a few nasty people ruin this site for people to express a different point of view.
I think you should re-read your own post.
You did not specify in the heading, that you were referring to cancer.
"Is untreated HCV a death sentence?"
Then you go on to say:
"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 lived a very health lifestyle, and still cirrhosis took out my liver.
I was active, ate well, and drank a glass of wine with dinner sometimes.
Your words make it sound like those of us who get cirrhosis have our lifestyles to blame. Not true!
Ironically, this is the anniversary of a young man who died awaiting a transplant. His mother is a member.
.Can you see how your words could be seen as unkind, and insensitive?
Perhaps if you had rechecked your wording, you could have avoided causing offense and wouldn't need to call others on treatment, "nasty'.
Ironically, I am the first one to encourage people with little damage to wait for better alternatives if they can.
Please remember you are far from the only one here doing treatment, dealing with difficult side effects and difficult decisions.
if it was me i would wait for the tx without interferon ..or at least wait a year to see if it looks like its going to work well and take off soon......unless of course your in tough shape and need to tx right away...i looked forward to the inicivek for years and just as it was being approved the new drugs were talked about ..i remember asking if i should wait for the new drugs here...folks were unsure if they would come out at all and were talking about years if they did...that was just 7 months ago.......so i tx...i'm going to the eye doctor this week coming and hopefully no lasting damage...my feeling is if the companies are big enough and can do a lot of lobbing the new drugs will come out soon...billy
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.
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?
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.
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)
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..
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.
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. :-)
"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"
I find it very telling that after 8 years in ICU you view the sickest of the sick as those who are obese, smokers, diabetics and the hypertensive. Maybe it's time for a rotation.
complications related to obesity, DM, smoking. These complications include multi system organs failure, sepsis, wounds, CHF,CAD. I see many people in the ICU with hep c and all of them are drinking alcohol, that's why they are so very sick. I have seen one person dying from complications from HCV. This is not a scientific study, just my own small experience with very ill people.
Are you treating? Do you have HCV? Do you live the life of a person sick all the time from Treatmemt? You totally miss my posts meaning. I struggled with the idea of treatment or not as many do. I think I was pretty courageous to do this horrible task. Not treating for many is not a death sentence, and if I'm not SVR after this I will be one of those people and I hope it's not a death sentence.
No, I do not have hcv, I have never treated, and I am not sick. Does that make what I have to say any less valid?
My husband struggled with the idea of doing treatment too, and I think he was pretty courageous to do 137 weeks of treatment.
He ended up in ICU a few times during treatment too, but that was far from what I call horrible, I've seen much much worse. But of course, he wasn't in your ICU, because he doesn't drink, and you only see drinkers in your ICU.
I do not live the life of a person sick all the time from treatment, but my husband is living the life of a person dying from hcv.
As far as the post's meaning, I don't think I missed it, I think I was rather struck by it and it's rather obvious I wasn't the only one. All the same, I hope that your treatment is able to get you to SVR so that you won't have to endure what folks like my husband and Hector and OH have had to live through -- folks who really understand what courageous means.
Give it the barest possibility that the patients that you see in ICU your particular hospital, in your particular area of your state may not be representative of cirrhotic HCV patients in general and are certainly not an accurate cross section of people posting to this board. There is certainly no 'justice' to this disease. There are some who didn't always lead a clean an sober lifestyle after infection, suffered minimal progression, had easy tx and are SVR. There are others who did everything right, txd multiple times, and are still infected. Where is the justice in that?
I can somewhat understand the courage it took to re-tx after having such a hard time on your first attempt.
As for eureka, don't even try to compare the pain of watching a loved one suffer to the pain of tx.
I hope your tx is successful and things get better. Take care.
When I was first diagnosed 2 years ago ,did I think it was a death sentence-YES!!!It was then that I found this forum and got educated about my disease and the proper steps to take.
After being told that I was a stage 0,I knew that I had time to wait for the newer drugs to come out.I think that Judy is just trying to say(especially to the newbies) is that if you dont have considerable damage that you could possibly wait for even newer drugs with little or no sides.
I also learned that it you have better odds of clearing the virus if certain factors play in-one being little or no liver damage.And age.And I also think her decision to tx was "To get rid of the virus living inside her" I live with that thought every day too.
Now after hearing how some are having such a horrible time with the new drugs,I think I will wait some more,basing that on my stage.If it was 3-4 now that would be different.Just my personal opinion cindy
There is another aspect to postponing tx not just amount of liver damage.
As time goes by one can develope other health conditions that can
make HCV tx much more complicated and/or difficult or even impossible.
There is no better time to fight the "dragon" than when you are strong and
one thing for sure...the info and excitement of the up and coming tx without interferon is much greater then 6 months ago or even 8 months ago when many of us set up our lives to tx with triple...that being said ..myself as well as many started triple tx with very little info on the non interferon tx...things are changing so fast...a few months ago i would say to folks tx now if you can with triple...now i would say wait a while if your hep c isn't too bad...i recall so many folks a few years ago and especially last year recommending to wait for the triple tx...now its the new tx without interferon...if judy didn't care about people she wouldn't be spending her time trying to get this point across ...and for the folks with advanced hcv i think we all here feel so sorry for what they go through and wish we could do something to help...i know no matter how much i may have a different point of view then others here i would still hope the best for everyone ..good luck to everyone..billy
"and for the folks with advanced hcv i think we all here feel so sorry for what they go through and wish we could do something to help"
Thank you working dog, I feel the same way too, but there comes a point in this disease where there is nothing any of us can do to help.
Though if you read the original post, the rationalization put forth seems to be that you only get advanced hcv if you drink, and that hcv only puts you in ICU if you are a heavy drinker, and that it's not a death sentence otherwise -- both an incorrect and offensive presumption.
We already have enough false prejudices attached to hcv and ESLD, we certainly don't need someone in the healthcare field further perpetuating false myths about hcv. And to be perfectly honest, I think those who have hcv and are alcoholics deserve as much caring and sympathy and compassion if they wind up in ICU as those who don't drink, but that's my personal bias.
I do think discussion about our different points of view can be healthy if we don't accuse others of being nasty; as I said, though I don't agree in the slightest with pcds and her point of view, I do still wish her SVR. No one should have to die because of this awful disease, whatever might be contributing to the hastening of liver failure.
" I see many people in the ICU with hep c and all of them are drinking alcohol, that's why they are so very sick."
I don't find that accurate, caring, or sensitive. Even after 50 comments, she doesn't see that there's anything wrong with that point of view, so I'll just leave those who agree with her to defend her stance. God bless all HCVers.
What i find odd, right now theres a thread about people joking about those with HCV, people with HCV get outraged over the stigma being attached. Yet when one attaches the stigma that people with cirrhosis or HCC are alcoholics, ones try and defend it...........
Since the ones defending it are lucky and are not dealing with cirrhosis or HCC, just like the ones putting down people with HCV are lucky and don't have HCV.
So i guess if the stigma don't involve you, then its fine???
I think that with something so random as the progression of this disease is; one would want to pin it on something controllable like drinking, or lifestyle choice or whatever. Surely, it is a good idea to quite drinking and drugging if that is what you are doing. But often if you are so unfortunate as to be selected by the fickle finger of fate, you're hit. Fate and genes are unfair and unjust. It just is.
It is a natural human tendency I think for many to want to blame others for being sick no matter what the sickness; just like blaming the victim of a crime (if they dressed differently, if they had deadbolted the door, etc.). It is a defense against the hard reality that we really have little control in the long run, over fate, randomness and life's fortunes. I just lost an old friend to ESLD from Hepc. Because we used to hang in the same circles back in the seventies, I figure we probably got the infection from the same source. I don't think our lifestyles have been that much different over the years since but God/fate/Great Kahuna/Karma took her and left me with f=0.
I don't understand why we try to kill the messenger on these issues? The fact is that many people really CAN wait. The problem is that nobody really knows for sure who those people are. Therein lies the dilemna. We can play the averages and doctors can make an educated guess and keep checking the bod but that is about it. Perhaps some of us would like to think we will dodge the bullet if we don't drink a drop, or keep weight under control etc. or maybe even that we won't relapse if we take the pill every day but the plain fact of the matter is these are likely necessary but not sufficient measures.
Last year a 2 to 3 yr old baby boy gave up the fight to (Liver Cancer). He tried different tx and experiments @ a childrens hospitol. His parents have divorced. How sad. Anyone can get L Cancer I guess? He did not drink, drug, smoke nor was he obese.
Seeing by the amount of posts I imagine there are many opionions.(I haven"t read the thread yet)
Just to the OP who says "
have read many posts from people that say if untreated you wll die of complicatons of HCV".
I honesty can not remember ever reading this here.
Since you put this question to Eureka I would like to put in my own two cents also.
"Are you treating?"
I have treated and failed treatment.
"Do you have HCV?"
Yes, for 40 years.
"Do you live the life of a person sick all the time from Treatmemt?"
No I am living with ESLD and liver cancer. Twp potentially fatal diseases. If I don't get a new liver in the next year or two the odds of me surviving are minimal.
"You totally miss my posts meaning. I struggled with the idea of treatment or not as many do. I think I was pretty courageous to do this horrible task. Not treating for many is not a death sentence, and if I'm not SVR after this I will be one of those people and I hope it's not a death sentence."
We understand your meaning perfectly. We that are facing death ourselves or of a loved one are to be discounted and not to be used as a warning to others to take advantage of the best odds ever for curing this disease. Although people may feel fine now that is no indication of the state of a persons liver disease. I had cirrhosis and felt fine. I was diagnosed by accident as I needed a complete blood workup for surgery on a neck cyst. Unfortunately while waiting to try the new DAAs I developed HCC which any person with hepatitis C and cirrhosis has an increased risk. That is why cirrhotics should be imaged every 6 month. Chronic hepatitis B doesn't even require the development of cirrhosis to develop liver cancer. I guess they are all alcoholics too?
"I see many people in the ICU with hep c and all of them are drinking alcohol, that's why they are so very sick." I have seen one person dying from complications from HCV."
All people with hep C drink alcohol? And that is why they are sick? Then why are you treating if you don't drink?
Fact is myself and many others that are waiting for transplants don't or never have drunken alcohol. We are not obese. We don't have multi system organs failure at least not yet. If we were drinkers or had multiple medical issues we would be listed for transplant.
Your disdain for us with advanced deadly liver disease caused by hep C and the patients are your hospital is blatant. I feel sorry for anyone there that is suffering as you don't seem to have any empathy for others. Perhaps you are burned out. But that is reason your should be allowed to have anything to do with the care of ill and vulnerable patients.
In the future if you plan on dissing people that have to suffer real life and death situations you might want to think first before dumping your ignorant comments with the shield of "I work in an ICU" on a website devoted to the support for persons with all stages of hepatitis C. That contain members would do know something about this disease and its prognosis unlike yourself.
"It is a natural human tendency I think for many to want to blame others for being sick no matter what the sickness; just like blaming the victim of a crime"
Just because something is a human tendency, whether natural or unnatural, does not make it defensible, acceptable, nor excusable.
"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."
"a few nasty people ruin this site"
Oct 08, 2011 .To: pcds.The lowering of platelets is normal during treatment. It is a side effect of interferon. If they didn't drop that would be odd. You have plenty of platelets. There is no reason to be concerned. Platelets help the blood to clot. When you get a cut and stop bleeding it is because platelets gather are the cut and stop the bleeding. Nothing to do with the flu. As I said this is normal. If this is your only issue with treatment then you are doing very well.
Although this isn't an issue for you. I would like to point out that
Ibuprofen like other NSAIDs, reduce the ability of blood to clot and therefore increase bleeding after an injury. It also causes kidney problems and fluid retention. These are all issues for cirrhotic patients. That is why people with very advanced liver disease i.e. decompensated cirrhosis/ESLD should not take Ibuprofen or any NSAID. People with cirrhosis should only take Tylenol for mild pain relief.
By pcds | Sep 24, 2011
12 Comments .Deciding whether to treat? Geno 1.For those of you out there wondering whether to treat now or wait, I went through this debate myself, so some thoughts that may help you decide.
Age. I just turned 59, this is hard on me, so the younger you are the better you may cope with treatment. I'm in good shape, but the years make it more difficult I'm sure
Health. If you have no current issues besides the HCV, then it might be a good time to treat. You never know what might be coming up especially if you're over 50, that's when the machine starts to breakdown. The doc had found a nodule on my thyroid before I started treatment, it turned out to be nothing, but it could have stalled my treatment for HCV.
Medical coverage. I see the future only getting more difficult for us to get good coverage. If nothing else it will cost you more in the future most likely. So if you have good coverage through work it may be a deciding factor. As far as medicaid the future is truely grim.
Current treatment vs upcoming tx. It took 15 yrs for Telaprevir to hit the market. There is new stuff on the horizon with less side effects, very very tempting especially if your liver is in good shape. But there are no guarentees when it will be available. The new meds now are powerful, but it's really been tough for me but I'm glad I just jumped in, took the plunge and feel my future will be bright.
Just because something is a human tendency, whether natural or unnatural, does not make it defensible, acceptable, nor excusable.
It makes it forgiveable because it is something that everyone has a tendency to do and often does do. If not regarding HepC, then with regard to a host of other occurrences. It might be helpful to remember the saying "To err is human. To forgive, divine".
"It is a natural human tendency I think for many to want to blame others for being sick no matter what the sickness"
I'm not sure why you would feel compleled to blame others for your sickness, but I've never blamed anyone else for my HCV. I take full responsibility for my actions and try to take very careful consideration for all when posting on this forum. I've learned many things on this forum, but probably the most important is to consider the full audience when posting and be willing to stand behind what i say.
"something that everyone has a tendency to do"
And that makes it beyond reproach? Maybe I'm associating with the wrong people... I don't see everyone around me laying blame on others for being sick, or blaming victims for the crime. Is it acceptable to you that folks working in our medical or legal system have and practice such tendencies?
Because someone is forgivable does not mean they are above being pointed out the error of their ways. I err often, and try to forgive, but will never claim to be divine.
What comes to my mind - is not the why or how of the HepC - or the who.
It's the same old question of whether the suffering of the treatment will be worth it. When you and your loved ones and physicians decide the time is right for treatment - then the hard part starts.
I'm now watching my loved one suffer in treatment - the 3rd week of 48 weeks. No eating, can barely stand up, too weak to move hardly - when before that, he was working 12 hour days - at age 58. He NEVER drank, but many, many years ago he used IV drugs.
He was walking his dog 4 miles a day, and now he can barely walk to the bathroom.
And we still have to wonder - would he have EVER gotten sick with liver disease? Apparently his doctors believe the chances are he would have.
The question that bugs me the most from healthcare workers that are not my treating physician, "How did you get HCV?" you can tell it's out of a judgmental curiosity that they are asking. The truth is I'm one of the 30% that is unsure how I contracted the disease, but just once I'd like to respond with "Does it matter? If I said IV drug user would that make me any less of a human being? That somehow is less deserving of compassion?" The stigma this disease carries with it is awfully hard to take sometimes. Being judged when your down and out already is so cruel. If ur a healthcare worker that's lost ur compassi
There's a study that was presented at AASLD done on 1832 veterans that showed that 20 years after diagnosis 70% of patients who treated and obtained SVR were still alive vs 35% of people who were not treated or who failed treatment.
I commend the brave souls whoare able to share their DX-I just don't have the strength/resolve to take o dealing directly w/the ignorance and stigma associated w/HCV. I have kept my DX limited to only immediate family and 1 couple who we are very close to.
Our aim was to assess the natural history of liver fibrosis progression in hepatitis C and the factors associated with this progression. METHODS: We recruited 2235 patients .
We assessed the effect of nine factors on fibrosis progression: age at biopsy; estimated duration of infection; sex; age at infection; alcohol consumption; hepatitis C virus C (HCV) genotype; HCV viraemia; cause of infection; and histological activity grade. We defined fibrosis progression per year as the ratio between fibrosis stage in METAVIR units and the duration of infection (1 unit = one stage, 4 units = cirrhosis).
FINDINGS: The median rate of fibrosis progression per year was 0.133 fibrosis unit (95% CI 0.125-0.143), which was similar to the estimates from previous studies (0.146 to 0.154). Three independent factors were associated with an increased rate of fibrosis progression: age at infection older than 40 years, daily alcohol consumption of 50 g or more, and male sex. There was no association between fibrosis progression and HCV genotype. The median estimated duration of infection for progression to cirrhosis was 30 years (28-32), ranging from 13 years in men infected after the age of 40 to 42 years in women who did not drink alcohol and were infected before the age of 40. Without treatment, 377 (33%) patients had an expected median time to cirrhosis of less than 20 years, and 356 (31%) will never progress to cirrhosis or will not progress for at least 50 years.
INTERPRETATION: The host factors of ageing, alcohol consumption, and male sex have a stronger association with fibrosis progression than virological factors in HCV infection.
Do you have the ability to say I am completely and unirrevocably WRONG and what I said is pure BS? I've been wrong on here before and have always had the guts to say so.
Remind me if I get ill to stay the heck out of your ICU, I mean If I have a heart attack and they find out I have the HCV antibodies I'm sure my care will be less than stellar as they'll just lump me in with the other dirtbag alcoholics right?
This thread has become a lynch mob more then a discussion. It's very sad in my opinion. We give people who are very sick or have very sick relatives support and love here, we also do it for people who are treating.
Personally I disagree with some of what judy said (basically the comments about lifestyle and alcohol) I don't think she was saying that the 5% who got really sick were unimportant.
If I had HCC or ESLD or my husband was dying from it I would feel even more emotional about her comments then I already do, and I definitely have very strong feelings, sadness and compassion for those in this situation especially those I am close to here. It could be anyone one of us and we should all remember that. We can be in the 5% (or whatever the heck the real number is) regardless of how well or poorly we have treated our body and liver.
I think Judy's post was not thought out well and emotionally driven from being on treatment and feeling fearful and anxious. Even if her pain can not be compared to the suffering of our dear friends Hector and Eureka she is obviously having a rough time. I hope she will see that at some point and apologize as Deb wisely suggested. At the same time I believe that returning to the lynch mob is scary. Why don't people just leave it alone at this point.
Prior to this post I don't believe anyone thought of her as an inconsiderate human being or without compassion, hopefully many still don't. I do however believe that many of us have experienced her fear and anxiety of tx and hcv, not uncommon qualities in this group.
I earlier mentioned that I did not think that those older statistics are correct and that when one looks at infection over the course of 30 or 40 years the numbers look quite a bit more bleak.
There are other factors such as co-morbidities and extra-hepatic conditions which are being found either caused or exacerbated by chronic Hep C.
...and then there is the quality of life issue......
When I read the first post, impression was that the OP, whom I barely know was making a statement which I inferred was something along the lines of;
.....if this is the mortality percentage of the rough aggregate of Hep C infected......does that mean that we all regardless of how we care for ourselves end up with the same outcome; the 5% mortality rate?
If one takes better care of oneself, perhaps we have better odds, a better outcome; a different outcome than the aggregate of HCV infected, some of which obviously includes people who drink and end up affecting the oft quoted statistics.
Given that in the past year..... the cure rate will probably have gone from 45% to 75%.......and given that new, safer easier therapies are within 5 years of us, is it reasonable to wait?
That latest Abbott trial netted a 90% SVR rate treating geno 1's for 12 weeks without interferon. This is not isolated; Vertex netted a 90% SVR rate with 12 weeks w/ 2 PI's &SOC. Pharmasett is working on something that looks easier as well and attainable. Looks like 90% SVR rate is quite attainable.
I think that the OP was just undercutting the notion that one must treat now or die. They NEVER said for everyone to wait or that anyone deserved to die, or that 5% was acceptable or that we were all "dirtbag alcoholics:
That was my takeaway.....
Thanks all. But these is no need for interruption or translation. The posts are here and anybody can read them for themselves.
The statistics are flat out wrong, the understand of liver disease and its development is pure hookum, and comparing diseases she knows nothing about with "I...didn't know how I would lose more then 6 months of my life. I don't think it was worth it." Is pathetic at best. And she has the gall to question Eureka like her 6 months of treatment suffering is the be all and end all of suffering. How embarrassingly rude and callous. And this is someone who works in the care giving/medical field and you would think might know better.
She shows no understanding of true suffering, no empathy toward others, no respect for anyone's elses suffering other then hers own. The amount of self absorption would make Narcissus jealous. Well at sometime it is time to say enough is enough and we are tired of it especially when it comes to someone judging and illness that I have to live with that is beyond her comprehension. If you don't understand something ask about it, before posting your ignorant prejudicial views out as though you have some knowledge of what you speak of.
All of this nonsense would be funny, but I and some of my friends have to live with ESLD and/or liver cancer every day and I find it offensive to go on a medical forum for the discussion hepatitis C amongst fellow sufferers and people who have been affected by this disease and see someone dumping their ignorant nonsense about why people develop advanced liver disease as if it had any basis in reality.
Such statements as "I see many people in the ICU with hep c and all of them are drinking alcohol, that's why they are so very sick." Shows the level of ignorance posted here. Most people are know who have advanced liver disease and so are unable to treat are doing there best to stay alive another day. We live in pain everyday so give us a break. Her words are a hurtful to me and my friends who never know how many tomorrows we might have.
I made the choice to do the Tx because I think there are other effects of Hep c other than death. I have had friends die and I have watch friends, although still alive, suffer every day. I would like to minimize my possible the suffering. JMHO.
No one need be sorry, and I know I don't expect apologies. This thread should NOT be about who's in what pain and how much... it should be about differing opinions (is hcv a death sentence and why...), how we arrived at them, and how they compare with each others' views versus the hard reality of accurate medical information.
You are right that we are all here to try and be supportive, but more important than that, at least to me, is that we learn from each other, and try to be as honest and truthful about hcv as possible. Personally, I have never have been challenged for commenting on this forum because of my own lack of experience with hcv, but there's always a first time :). I stand cautioned that some treaters don't find me qualified to comment.
I think one of the distinctions of this forum is that we try to better each other through self-moderation and education; when one of us, any of us, arrives with wrong or erroneous information, things are usually set right. Obviously, that isn't always the case, but we try. Or, at least, I tried.
My comments throughout were driven as much philosophically as emotionally, Dave... I thought it especially pertinent to try to disabuse the OP of her views on how an hcv patient might wind up in ICU -- or worse -- especially BECAUSE she works in the medical field. Perhaps I should have accorded more tolerance and understanding, particularly since she is in the only state in this country that won't pay for liver transplants, so her exposure and environment probably aren't conducive to a wider perspective.
Cirrhosis is the primary cause of death related to Hepatitis C. I lived through my livers death, with a transplant in 2001. My doctor wanted me to wait to treat the Hep C, now they want me to treat, because my donor liver has been under attack from Hep C for 10 years and I have Cirrhosis again. Have not had any cancer or any events. I have yet to meet anyone that has had a transplant due to liver cancer, but have met many that had Hep C and Cirrhosis, that lead to transplant.
I also came on last nite - in a moment of just being angry at seeing my friend's suffering at the moment, and landed on this thread.
I'm not anti-treatment - which, it doesnt really matter if i was or not! - since i was not the one deciding whether to take the treatment.
It was hard for me to come online and search and search when i first heard about this treatment, and to find so much negativity as to "is it worth it?" (not on this site - all over the internet, before i came here) ... as far as "will it even CURE?" and "will this person even ever DIE of the HepC?" All i could do was talk to my loved one about it and make sure he felt that his doctor was making this decision at the right time.
He's going tomorrow to get medicines to help with all his side effects - so thanks for being here to let me vent.
BTW, this doesn't mean I agree with much, if anything the OP has stated other than if you can wait, you might want to consider it. - but it's been obvious since even before she started this last tx, that she is 'IFN sensitive'. Maybe I just have a soft spot for people who are able to drag their sorry, IFN soaked @$$es to work inspite of the mental sides.
Funny you should say that... I was getting ready to write a big check for colloidal silver and all kinds of alternative meds years ago, but I wound up here. If it weren't for the folks on this forum, my husband might have been dragging a blue-tinted a$$ instead of an INF-soaked a$$ to work the last few years :).
I'll go with that as the bottom line: as long as folks understand abstaining from alcohol is no safety net, on that point I agree: if you can wait, you might want to consider it.
(one more likely to grow a bald spot than a soft spot)
I am not a Dr. I am a CMA but only so a year then left the field. I know nothing, even though trying to look up and understand Hep C. Both of my daughters have Hep C due to drug use unfortunately. They have quit the drugs thank God in past 2 years, seperately. My oldest daughter went to a Dr. and said he said her Hep C was to far gone to treat and gave her two years. I don't know much but I know she is not jaundous and I have read that a percentage don't get Jaundous. She has however developed severe bowel problems, has crazy moods, hurts constantly, tired a lot, the saddest part is that she has given both of her babies, my grand babies to their fathers. I don't know what to think. I don't know if she is being truthful, if she needs a second opinion or if she's just crazy from the Hep C. I do know both of my daughters have it. My other daughter has had it a far less time than my older daughter but has cancelled her appointment and has never rescheduled. I am scared. so scared honestly that I have gotten life insurance on them. Does anyone know if there is a point that Hep C is no longer treatable? My daughter's usually don't tell me if they are sick or what is going on with their bodies because of my chronic severe depression and my health. I need to know something because all I can do right now is think the worst.
This is an old post fro 2011. The best way to get your question noticed is to go to the top right of the page select the post a question link you could just copy what you have written that way more people will see your question and you will get more answers.
What kind of do get are your daughters seeing? It sounds like they need to bee seen by a hepatologist associated with a liver transplant center for the newest treatment information.
The doctors are treating people on the liver transplant list so that when they do recieved a transplant they will not infect their new liver. So it is never too late.
It is absolutely imperative they stop using some doctors won't treat and some insurance won't cover the new meds that have been approved in the last year.
Just wanted to add I have had hep c for 37 years and cirrhosis for 7 years. I am treating for hep c.
If your daughter has advanced cirrhosis there is still no way she could be told she has 2 years to live. If she is that sick she needs to be evaluated for a transplant not sent off by her doctor with that news that is a poorly informed doctor telling a patient something like that.
Please get them to a hepatogist or at a minimum a gastroenterologist to be properly evaluated. The new treatments can be just 8 or 12 weeks and with limited side effects and most can be cured of hep c
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