Accidentally posted too soon
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
Good luck to you and your family
Hi and welcome
So sorry to hear of your daughters problems
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.
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.
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.
~eureka
(one more likely to grow a bald spot than a soft spot)
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.
All excellent points and very well stated.
Isn't this the type of treatment we normally reserve for salesmen of colloidial silver and discussions about alternative medicine - not one of our own?
http://www.youtube.com/watch?v=zrzMhU_4m-g
Whew, well .. 99 comments! How can I hold back and not be number 100? That's my comment and I'm sticking to it.
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.
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.
Dave,
A lynch mob? That's seems a bit over dramatic.
It's apparent from Judy's later posting that her intent was to tell others not to act out of fear, that she regrets having done so.
However, she never recants the original erroneous statement.
Personally, I'm fed up with whining.
But, no hard feelings towards anyone.
Treatment is tough. We all deserve a pass :)
Merry jingle bells and a happy SVR to us, one and all.
OH
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.
~eureka
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.
Paul
There's no pain like my pain....or your pain.....or...oh never-mind.
Mike
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.
Hector
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......
BUT.....
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.....
willy
Well said Dave, its time to move on.
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.
-Dave
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?
Jez this thread made my heart hurt.
An older ,however very large study (2235 patients), on the likelihood of progression and some factors that are involved. Just one study ,certainly many people would fall outside these parameters.
Will
http://www.mendeley.com/research/natural-history-liver-fibrosis-progression-patients-chronic-hepatitis-c-obsvirc-metavir-clinivir-dosvirc-groups/
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.
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.
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.
http://hepatitisdoctor.com/!drcecil%20copy-1.pdf
Co
I'd say it's time to change careers
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