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Is there a reason to be concerned?

We just found out that my father-in-law has Hepatitis C.  I am concernedd about my 10 month old being around him.  Should I be??  What are the ways that you can get it from someone?
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Avatar universal
Good luck at the doctor's office.
I will watching for your post.:)
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Avatar universal
Your posts are all so helpful and informative.  I enjoy reading opposing viewpoints, debate encourages us to think for ourselves.  Oftentimes, on this site we read more about terrible sx of treatment because those people need the most support, but there are others like me out there whose sx are really mild in comparison.  I am loathe to post the relative ease with which I'm managing these sides because I don't want to sound cavalier to those suffering debilitating sx.
I understand that I'm only at 9/48 and sx could worsen but right now I'm doing really well.  I do have sx, shortness of breath, fatigue, dryer skin, but no depression or major problems to complain about.  Yes, I am concerned about damage to my immune system, but it was a choice;  I want to clear this virus.  People considering treatment would probably like to hear more from patients like me who are managing sx with few problems.
It would be really helpful for me and others too, that if those of you posting about failure to respond to treatment would add info on your meds.  Did you all complete the treatment?  Every pill?  Every shot?  Did you all stop drinking alcohol? etc.,
I'm just wondering what the success or failure rate is given each patients' committment to treatment.

In the meantime, I thank everyone for the invaluable information I have learned here. Your kindness and support of one another is a pleasure to observe:).
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Avatar universal
Hcv is the leading cause of liver transplant in the US. 8,000- 10.000 peole die every year from Hcv and the problems caused by it. These are facts.  
Given enough time...it will probably kill you. As we age the problems get worse. The damage progresses. It is never "inactive". These are opinions.
The decision to treat is certainly an individual one. The doctors are looking at this through the eyes of one who does not have to try to live with it. They will not die from this. They talk in broad strokes and spout a whole lot of "Theories". The fact is that nobody.....NOBODY...can say how this will progress in any given individual. There are no stats on just how long it takes before the more rapid progression begins. Progression to cirrhosis is generally shown to happen somewheres between 20-30 years. This is an "average".  Sometimes it happens sooner....sometimes later. Sometimes never because the patient died before it could get that far. Can you affect this with lifestyle changes to the point where it will never progress that far? Nobody knows. There have been NO studies of that and certainly none that go beyond 10 years. They would have to actually start a study and then it would have to run for 30+ years to figure that out. In the meantime people are still dying and getting transplants.
Live with it if you want to. It takes a brave person to do that in the face of all the known stats. The mental aspect is yet to be assessed either.
I could not live that way. I was gettin older and that is a big factor in the ability to do the current tx and actually become cured.
I salute all who choose to wait and change their whole life to center everything around Hcv and trying to slow it's progression. Unfortunately there are no "odds" that I can find on how well that idea really works. You are all pioneers in that area. Just as we who chose to treat were part of the current stats on the tx clearance rates. We were scared too.  I was afraid of the meds....but I was more afraid of the disease.
All I know is that I am "Cured". And now don't have to worry about it anymore. That alone was worth it to me.
Study up on all this on your own. Make your own "Informed" decision. Look at the studies. Look at the stats. But don't simply take the word of your doctor. If you are harmed by the meds or progress to cirrhosis by not treating what does your doctor say then??....Sorry?? And you are left saying...."But I trusted you"! I certainly would not bet my life on THAT possibility. Doctors are wrong about this whole Hcv thing....A LOT.  Think for yourself. You are the one who has to live with your decision, whatever that may be.
There is no right or wrong to any of this when deciding. It is about finding what YOU can accept and live with. Make your decision and go for it. But put yourself into that decision 100%. Do NOT simply ignore this disease. It DOES kill people.
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Avatar universal
The non-linear progression is usually discussed in positive, not negative, terms in any of the conferences of hepatologists that I have been to. In other words, they see this as a slowly progressing disease that may not ever progress beyond a point. That point can be lifestyle changes as much as anything else.

Some people have been documented as spontaneously clearing virus late into the disease.( Viral load, by the way is the measure of the treatment, not the disease)

A rare person will progress rapidly. But, to my knowledge this is quite uncommon.

In fact, doctors ARE taking that data into account when they say that progression is non linear.

You have made a case for not rushing into treatment, not the opposite. The meaning of progression being non-linear is the reverse of your theory. In fact, that is good news for most patients, especially those on the fence or who cannot treat or do not respond.

The general consensus is that managing hepatitis C is a matter of avoiding cirrhosis and interferon treatment is one of many ways to do that. It isn't for everyone and it isn't a panacea, even when an SVR is realized.

Once more, viral load is a measurement of the treatment, not the disease. Non-linear progression is very good news, not a frightening harbinger of doom. It means that progression is variable and not inevitably linked to certain cirrhosis and death over time.

As Audrey and her doctor point out, this is very individual.

Most people do not die of hepatitis C whether they treat with interferon or not.

(reference: Journal of the American Medical Association, July 2003)

thanbey



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Avatar universal
I meant to say I don't think I can welcome you as warmly...since everyone did such a nice job above. And to think, I am not on tx - my brain fog comes naturally.

G
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Every person on this board has made whatever decision is right for them.  I admire you for your decision.  Please don't feel that you would be condemned because you made a decision that you feel is right for you.  Personally, I like to hear from the non-treaters to see how they are doing.  You are right - this is a disease of decades.  I am 47 and decided to go on treatment although I have never had one single symptom of liver disease, but have apparently had Hep C for 30 years.  I felt 100% perfectly fine before going on treatment and now I have a few bothersome side effects and I am getting really, really tired of sticking myself every Friday.  But I made the commitment to do it because I feel like, for me, I want to give it the best shot available right now, 50% chance or not (I am 1B).  If it works, then I made the right decision for me at this time.  If it doesn't work, then I'll move on and see what's on the next agenda - treatment or not.  My point is (and sorry to give you so much of my personal story) that we would like you to make whatever comments, observations, opinions you want.  Most of us are treaters, but we care about EVERYONE with Hep C and I personally wish you the very best with your personal decision.
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Avatar universal
Drifter, good to hear your comments and ALL are welcome here. I am a 50 y/o female, 1a, VL 1,012,540, had HCV 25+ years. Just got the results of $2700.00 worth of blood tests on Wed. Was dx in Jan. and have had these 2 months to research all options. Spent some time in both camps, so to speak, lurking around to see how others were doing tx vs no tx. My gastro had said if a 2 or 3, we would treat w/o a biopsy cuz the odds were higher and the shorter tx time. If a 1, we would biopsy, then discuss. I went in COMPLETELY resolved to do the treatment and get it over with no matter what genotype I was. I was tired of thinking about it. Well, as odds would have it, I was a 1a and altho I practically begged to tx, she said she would go whatever route I chose, but I had to take time to think it over. She reminded me that altho some people do respond and manage sides, many don't, that I could be sick for a year and had to plan accordingly. And altho, she said that she could work with me to get the meds, said that I would be on AT LEAST 5-6 other meds from time to time to manage sides which would have to come out of pocket, since we have no insurance. (something Thanbey also alludes to). Well, as "luck" would have it, I was forced to postpone my decision becuz of an elevated AFP tumor marker, so now need a CT scan next Wed. before ANYTHING else can be done. BTW, anyone else with an elevated afp that had an OK CT scan and no liver CA? Also her direction to not treat a 1 was ONLY if bx was 1-2, with a 3-4 would encourage TX. Anyway, if CT and bx are OK, will probably wait to tx at this time, continue to have blood tests and live a healthy lifestyle. My choice, right now, at this point in time. I think most on this forum are very respectful of each one's individual choice.We all understand what a tough decision it is to make.I never felt pressured in any one direction,just overamped on info from time to time. Sometimes wished someone WOULD make up my mind for me. Best of luck with your choice. Stay healthy and keep in touch with updates. It's always good to get feedback and encouragement from each other, no matter what camp we're in.
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Avatar universal
Welcome and what scott and chevy said about coices, ditto.
As Scott said, what you read today has nothing to do with slamming people for not treating.  Some  feel STRONG about tx and it will come accross that way. Each has their own personal situation and reason for tx, not tx, or using unproven, inefective treatments to kill the virus.
In my case,  geno 1a, mild damage, low vl, female. I also knew that stats show slow liver disease progression and it probably would not kill me. of course no one can say for sure how my case would actually progress. so that would be a fear to live with, plus accidentally infecting my daughter.
when I came to this forum, others pointed out their reasons, some I did not even consider at first. One being that the older you get the less effective the present tx is, no one knows how fast new meds will come out and how safe they will actually be until they are out there in the general population. waiting is agony sometimes. I was already having extrahepatic manifestations of the infection, my liver function was always normal, but that did not keep me from enduring joint aches and fatigue. even if I was asymptomatic, how would I know how long before the hcv would affect other tissue than the liver and my active life?
So as you know, we all had the same info to sort out and had to make the best choice for us with what we have. I had to try at least, because I was not going to know how the meds would affect me until I did.  40 wks later, still working and trying to make it to the Y. :-}

you be well
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Avatar universal
geno type 4 med virial load stage 3 bridging to 4 with chriossis
also i have leukeamia, thrombocytopena, hyper active parathyroid, and norepinepherin storms, so to treat or not to treat was an easy choice for me.
just did 4 of 48 (4 is treated like a 1 ) the sides are not bad for me as i have been having them for a couple of years before treatment due to the other health problems (except for the fog that is a new one to me).
the choice to treat or not should be made between you and your dr.
first try and get a specialist in hepc your gp probably doesnt have the info that will help you made an informed choise.
work with the specialist explore all the options including what might be comming out in the next few years as a treatment option.
then make your choise, if you chose not to treat then please make sure you get labs and stuff done on a regular basis so
that you can track the progress if any of the hepc.
also please come by and let us know whats happening in your life we all care here and support any choises made in your life
dan
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Avatar universal
To treat or not to treat? Chevy, I'm one shot behind you and one year younger, also a 2B. I read your posts with interest:)
No one wanted me to do treatment, my husband, friends, family, they were afraid of the sx, but all agreed it was my choice.  I made the decision based upon the assumption that at 48 and no liver damage, low viral load and no other health or mental health problems, I was probably as healthy as I was ever going to be. Plus, I believed the infection was new so felt confident that I had the best chance of clearing the virus now, rather than later.  Although I have a healthy respect for this virus, I don't want it living within my body..
After reading all of the posts here regarding responders, treatment sx effects, etc., I have decided that if I don't respond at 12 weeks and my Dr. wants to stop treatment, I won't argue with him.  A better treatment will come along.  But in the meantime, I'm optimistic for a good outcome for me and everyone else:).
Special thank you to Indiana and Scott for their posts, especially the posts regarding exposing those who would exploit the hopes of HCV patients by offering "useless" cures!
Good luck everyone!
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Avatar universal
Scott:

You do raise a very good point, and I asked my hepatologist that question.  He said it was linear.  If you could, can you post links to what studies you are referring to.  I would like to print them and ask him about them when I see him next week.  I will post his replies and promise to get evidence from him to back up his answers one way or the other.  I do think it is an important consideration for all of us.

drifter:

And don't think I can welcome you as warmly as everyone else has, but none-the-less, welcome!

G
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Avatar universal
Good afternoon,
I am new to the posts here but hope that I can offer some help. I have been working with the treatments of Hepatitis for almost 8 years. Your post is a very common concern.
The fact is that it is HIGHLY unlikely that Hepatitis be transmitted through the fetus, but like most clinical studies, it is not ruled out 100%. The previous posters are correct that your concerns should be toward the transmission of blood to blood, which I am sure you are doing.
Side Point- (in case you are breast feeding) Studies have shown that infants can NOT get Hepatitis through breast milk.
Keep fighting and keep us informed
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Avatar universal
I want to thank everyone for the warm welcome even from those that I had my doubts.  I do appreciate the support from you all on my decision.

I will try to come back and check on the progress of everyone here and let you know how things are with me.  I really do respect all of you on the treatment and pray all works out for all of us.  Scott I do not know if I could fight the way you have for such a long time it really does show your dedication to beating this disease and I wish you the best.  I can only hope that I have made the right decision and I really do think I have at this time.

The information that I got from each and everyone of you made my decision easier as I felt informed of all the the aspects of treating or not to treat.  Everyone that post on this forum has veiwpoints and opinions that need to be heard.

I was afraid that some might leave and not return but I think you will all be here to keep all of us newbies informed and educated so we can make the choices that are best for us.
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Avatar universal
Welcome to the forum.  I was just taken off tx after 13 weeks. I too have been told that my particualr case is not moving quickly, my biopsy has not worsened in the last five years, and I am comfortable with my doctors decision to stop tx for me. The sides for ME were unbearable, this is not so for everyone.

There is no guarentee either way. With some people tx is their best chance of staying alive. When they stopped me two days ago, I asked them what if I had more liver damage?  They said they would push me much harder to stay on tx - in spite of the sides. For some people the tx will do more harm than good. For some people the tx will cure them and it will have been worth every minute.

I have talked with people who are treatment die hards. They believe most strongly that one MUST go thru tx, that it is the only chance they have of survival/cure.  For some this is true. But not for all. Men progress faster. Drinkers progress much faster.  (these stats are from my liver team)

I also know people who are totally anti tx. They think anyone who tries these meds must be out of their minds. They will try herbs, herologists, oxygen therapy, yoga, accuanything - just not the drugs.

I am only sure that each person has a lot to consider. Info from qualified experts is ones best way to make an informed decision. Most of the people here are moderates; they know that each case has its own particualr variables.

I too must wait for a new tx. And I say must because I would not go thru these meds again with my current level of illness and my personal life needing all of me all the time.

Please keep coming here, I am going to, I found so much goodness and love here that I could not bring myself to not check in on a regular basis.

BTW, 2 days off meds and still sick as hell. Still can't leave the bathroom.

Does anyone know if any of this might not go away after 3 months?Ever?
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Avatar universal
Thanks.  At this point I think you are trying to make _________ your profession! :-)

G
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Avatar universal
Thanks for the links.  I suspect that when he told me it was linear he may have been factoring in my particular risk factors for progression and avoiding an in-depth discussion of factors contributing to nonlinear progression since I am not in any of those categories (granted - there are never any guarantees), but this is only a guess on my part.  I will ask him to qualify his comment and also comment on the information you have provided.  I appreciate your taking the time to post it.

G
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Avatar universal
After reading your post drifter I wish I had found this board as well as other sites before I decided to treat.  My ast and alt were high but viral load was relativly low at 680,000.  i think my alt and ast were high do to drinking heavier than I should have for a few years.  I feel that way now but when diagnosed My ga felt the only thing to do was treat so I jumped right in, with out really any info except what my ga told me flu symptons were what he said were the worse side effects.  

Any way I jumped in with out much info and am on week 14 now.  viral load at 12 weeks undetectable. The sides are not as mild as my ga stated but I have been able to live with them although not to the quality of life I was used too.  But the decision is made and I am in for the ride. Keep us posted drifter and thank God I was able to find this forum as I have learned a lot just wish I had found it earlier.

Loco
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Avatar universal
This is funny.  My doctor is at Northwestern University; his name is Dr. Steven Flamm. He does ONLY hep C; and is considered an expert in the field.

He has told me that each case is different; that I am not going to progress quickly, that I should try tx to relieve my symptoms but now should stop becasue tx is making me terribly ill.

BUT - I need to be checked every six months. I trust him to put me back on tx if I should take a turn for the worse.

Please folks, do not be black and white about this. Each case is different and there is a lot to consider.
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Avatar universal

Sorry to break into this thread but all threads have been used.  I would like to make a few comments here.

I was diagnosed with Hepatitis C about 45 days ago.  I am a genotype 1 and my biopsy shows a stage 2 and I am 50 years old. Viral load at the time of testing approx. 800,000.  

I have to say first that this will probably go down wrong with a few of the frequent posters on this forum. I have decided against tx.  I have read many of the comments from this board and have to say that some are rather doom and gloom.  My Doctor which I respect very much put it to me this way.  You can treat you have no significant damage to your liver your enzymes are in the normal range and all heptologic functions are normal.  You may also elect to not treat and change your living habits to a more liver friendly way and monitor your symptoms on a reguarly basis.  He stated this, that hepatitis is a disease of decades not years I figure I have had the virus for about 25 years.  

Hepetitis is not a death sentance most people die with hepatitis not fron hepatitis.  I live a very active life style and I do not want to go through the side effects of treatment that has only a 50% success rate.  I can wait for a better treatment.  I have read all I can find on the subject been to most of the links posted here to make this decicsion and feel I have made the right one for me.  

I hesitated before posting this as I know it will bring the wrath of the few that think they rule this forum and think that  their decicision is the only one to be made. They need to broaden their horizons and look at individuals and their needs not what they feel their needs should be.  

Again take heart people that have been diagnosed this is not the doom and gloom that some here want you to believe and make the choice that is right for you.

Enough said

Drifter
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Avatar universal
I, too, have HCV, probably had it for 25+ years. Both kids and hubby negative. My daughter just had a baby boy 6 weeks ago. She was scared when she first found out, but now has absolutely no problem at all after getting informed. Lots of info here and other sites like the above mentioned CDC website. Feel free to stop by anytime any ask questions if they arise. We were all in your shoes at one time. I know having that grandbaby around for your father-in-law will brighten up even the darkest of days. I know mine sure has!! Keep smilin'!
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Avatar universal
Well we can all certainly understant your concern.  First let me say that i have Hep C and my two year old son does not.  Some of the main precausions that i take, are;
Keep my tooth brushes seperate from his, never letting him touch it or his tooth brush touch mine, I wash my hands often, just in case, I wear gloves when doctoring a scrape or cut, i use and dispose of bandaids cautiously.

Hep c is a blood born dis-ease that is passed on through blood- blood contact, It is not passed on through contacts like hugging, holding hands, etc.  Just be carefull, about the bodily fluids, but mostly blood.  

I hope this was helpfull and im sure you will get alot more advice from others on this site.... they are a freindly bunch!

Good luck...
mysmiles*
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Avatar universal
It is transmitted by blood to blood contact, not casual.  You can do a web search and you will get tons of sites that explain how hcv is transmitted.  check the CDC for starters. That way you can also understand what your dad is facing.  good luck
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