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    Old 04-04-2002, 10:51 PM   #31
    thanbey
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    Re: Hepatitis C test

    End stage liver disease is the point you would need a transplant, NOT cirrhosis alone.

    People get these two conditions confused. End stage is cirrhosis beyond the point where the liver is able to compensate (function within normal limits) AND there are other out-of-whack metabolic and enzyme tests. A person would be very sick and very weak and the abdomen could (but not always does) swell like an 11 month pregnancy. Big....way big, not a poochy tummy.

    Compensated cirrhosis can be managed (and/or treated) for a long time and transplant is not inevitable even at that point. I have personally known people who have been diagnosed with cirrhosis for 15 years and counting and they are living a very normal life. Who knows how long they actually have had cirrhosis.

    Hang in there, you are going to be fine.

    teresa
    <p>[This message has been edited by moderator1 (edited 05-22-2002).]

     
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    Old 04-04-2002, 11:38 PM   #32
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    Re: Hepatitis C test

    Teresa, thanks so much for the letter, you always make me feel so much better! I can imagine that I am driving you guys nuts by now. This has been the weirdest week for our family. My Dad is in the hospital tonight, an otherwise very healthy guy, with what might be Congestive heart failure. It's just so weird, none of us had any health problems at all, and then all of this. My husband had been very overweight, and then a few months ago got into a competition at work to loose weight, and now he is feeling better mentally and physically, and it's so weird, he said the timing is so strange, like something made him do that so he could be strong for the family. My kids were kind of upset tonight at the news of Grandpa, and the emotions were coming out all over here tonight. My husband said I have to be careful about how I handle this with the kids. In one way, I want to prepare them for me being sick, but then maybe I shouldn't do anything right now. Like I said before, the books sound horrible, but then you guys almost make it sound like not a big deal, and then I think maybe I should really play it down with the kids. Kind of a fine line probably. Well, I'll know more on Tuesday I guess with the results of more blood tests and my sonogram. Are you doing therapy right now? I hear it can be bad, but that dosen't really worry me, I can get through anything to get rid of this thing. I know it dosen't work very often, but from what I understand, it helps slow it down for a while, right? Thanks for explaining about cirrosis, I was so worried about going in Tuesday and him telling me I have some cirrosis. I should probably expect to have some of that other thing, I think it's called fibrosis or something like that, right? Well, thanks again, really you've been more helpful than you can imagine. Your help has helped my whole family! Thanks, Val

     
    Old 04-05-2002, 10:53 AM   #33
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    Re: Hepatitis C test

    Hi again, I just had a couple of questions if you don't mind guys! First of all, I haven't gotten the immunizations for A and B yet cause I guess I'm waiting for the blood tests to come back from the specialist, and I think he checked my blood to see if I am immune from these. The problem is, my appointment with him is not until Tuesday, and I just called, and the blood tests are not back, so it looks like I will have to go through the weekend without these immunizations yet. I am concerned about this, cause it sounds like you should get those as soon as you are diagnosed, is that right?? I am worried I could come into contact with those in these next few days. Also, I have been reading alot about how for liver transplants, they can take only a piece of someone's liver that is living, put it in you, and it will grow back within a couple of weeks. Does anyone know why they don't do this more for HepC? And, lastly, I got on this site that had some info about Naomi Judd, and the docs only gave her 3 years to live when she was first diagnosed, do you know why that is? I am so comforted when you guys say it's not a death sentence, and that I could still possibly live a long life, but then I hear stuff like that. Anyway, thanks again, and I'm sure when I get my info, go to the specialists a couple more times, I won't be such a pain!! Thanks! Val

     
    Old 04-05-2002, 11:20 AM   #34
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    Re: Hepatitis C test

    Hello again Val,

    I think you're getting the picture. Thanbey's info is the best of anyone's in the field i've found. [no, i'm not part of her hcop organization, although I've sent 'em a contribution; and no, i've never met her, she lives on the west coast, i on the (much preferred) east coast.]

    To answer the questions you addressed to me: I haven't treated BECAUSE I DON'T NEED TREATMENT. I'm betting you won't, either.
    so, it's optional, in other words. if i decided to treat, and IF it turned out to be successful, i would maybe reduce my future worries, maybe not have to worry about transmission to loved ones, maybe get to knock off a whole bottle of delicious red wine with dinner if i feel like it (sigh....), but these are OPTIONAL considerations.

    and, I'm still weighing my options. I might just do it when Roche's Pegasys comes on the market. If it ever comes on the market.

    if a second biopsy for me shows more rapid fibrosis progression--more on this, below--or if my liver enzyme numbers suddenly shoot through the roof, or if any symptoms really start to show up, that would maybe change the balance of the decision for me, too. don't know--don't have any of these problems at the moment.

    ookay, as to fibrosis/ cirrhosis/ etc. There are generally accepted to be four stages of fibrosis (not counting zero--normal) I am at stage 1, for example--after my decades of infection. MOST HEP C'ers DO NOT PROGRESS PAST STAGE ONE. (sometimes called "mild" fibrosis).

    somewhere between 20 and 30 percent of us go on to stage two within 20 years.( sometimes called "moderate" fibrosis--these are obviously not exact terms). for these individuals, the indications seem to be that fibrosis will continue to advance--slow, fast, with drink, without, faster after age 50....who knows, so many variables???
    Definitely seems like we can slow it down a lot by avoiding booze and taking other sensible steps.

    stage three is no longer moderate, and stage FOUR is cirrhosis. It is a long way off for the huge majority of us. In fact, please remember that the numbers show that the majority of us do NOT progress past mild or moderate AT ALL. nevermind get all the way to cirrhosis.

    then once at cirrhosis, thanbey's info is so valuable--even cirrhosis is not a death sentence, not by a long shot.

    Again, Val, hep C is treated as a serious disease because UNdetected, UNtaken care of with life-style changes and so on, it is then quite serious for SOME--a minority--of those who get it. if at that point it is also UNtreated, then some of this minority may get very sick indeed. Even if its a minority, it is a large enough group to mean you can't just shrug it off. but that does not change the fact that for most of us, we just will not probably ever be hurt by it.

    It is NOT a serious disease because it is fatal or nearly so for a huge portion of us--say like HIV was before the recent treatment advances. These are both viral, both blood-borne diseases, but they don't really have much else in common. please remember that. jeez, influenza is an incurable virus, too, and occassionally fatal. so? big deal.

    Please remember, when you go on tuesday, to take a pad and pencil with you--a tape or disc recorder would be fine if the doc won't mind. line up all your questions in advance, and warn the doc that you're really gonna need some quality time with him or her.

    Keep the faith, Val. You are gonna be allright. remember t's mantra: I am not dead, I am alive.....actually, from your writing you seem very alive. good for ya.

    sean

    if i'm right, how am i gonna collect on my bet? this internet thing still has a long way to go......

     
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    Old 04-05-2002, 11:23 AM   #35
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    Re: Hepatitis C test

    from Jeannie Ree, above:

    "My advice is to not bury yourself before your dead, don't make any hasty decisions, and really take it one day at a time"

    what more can be said??

    s.

     
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    Old 04-05-2002, 05:04 PM   #36
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    Re: Hepatitis C test

    Sean, thanks soooo much for the letter, it comes at a very important time for me. I just got a call from the doc and the next test I took came out definitely positive, but he said that my viral load (I think he called it a titer) was low. Is that good news? Your letter made me feel so much better, like I really will be able to live to raise my 8 year old. So, if my titer is low, I feel and look pretty good, is that pretty good news? I wouldn't say I look too good, though, I do have alot of weight around my abdomen right now. I mean by looking good is that I am not jaundiced or anything. Again, the thing that still worries me is the kids and husband testing positive, got to get that out of the way. And, I know I could drive myself crazy with this, but where could I have possibly gotten it? The only thing that makes any sense would have been 20 years ago, and that would mean it would be more progressive inside me. I tell you, if I got it, anyone can. I have lived such a clean life it's unbelievable. Just insisting on sterility all the time, etc., even at the dentist. Makes me mad really that someone let me down, by not doing their job, but I know not to get too hung up on these negative feelings. OK, so do you mean that once it progresses to mild fibrosis, that sometimes it just stays there, not progressing any further? I really counted on living till I could see my great grandkids, my grandmother is 97 right now. Do you think they will come out with better medicine in the future? I think I will probably try to treat it, cause it can't hurt you, right? Except for the side effects? I would like to get rid of this, of course. Anyway, thanks for the uplifiting letter again. I have one book that I shouldn't look in, it really makes me nervous. It talks about tons of different complications, and sort of sounds dreaded. My husband said to realize that the numbers of people needing transplants for this are so variable, cause alot of the kind of people that have HepC, intravenious drug users, etc., would mean that those people also continued to abuse their livers by using alcohol, etc. I have drank in the last 20 years, and even gotten drunk, but like maybe 5 times, do you think that could matter? So, I should play this down with the kids, right? I know I should be ready for the fight of my life, and then on the other hand, I like your attitude of being non-alarmist, like just deal with it. It's just so hard, I love my kids sooo much. Anyway, thanks again!!!!! Val

     
    Old 04-05-2002, 06:25 PM   #37
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    Re: Hepatitis C test

    Sean, hi again, I just wanted to say that you're letter made me feel really good, and you are pretty sure of the facts that you have? I so hope you are right cause the books seem to say that HepC is the number one reason for transplants today, and that it will surpass AIDS in the number of deaths next year, blah blah blah. So what is up with that?? Reading some of these books can panic you. The doc on the phone seemed to think that having a low titer can be good, but then he said it can also mean it was high once and burned out or something like that. But you think if I had cirossis, that I would be having more symptoms, right? I am sure the biopsy would be the more important tool. I am anxious for that really. Are your liver enzymes high? How about your viral load? I know you probably already answered my questions, so thanks for letting me drive you crazy. I almost printed out your last letter and put it on my fridge, really thanks for helping me get through this!! I really really appreciate it!! I hope I can help you someday. Thanks, Val

     
    Old 04-05-2002, 11:19 PM   #38
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    Re: Hepatitis C test

    Hey guys here I am again. I think now that I am getting used to my diagnosis, I am starting to really stress out more about my kids possibly having it. My eight year old and I have just always been so close, hugging and kissing, and who knows if once or twice on vacation or camping or something like that we might have shared a toothbrush. I'm just saying that she's the one that worries be the most, being the youngest, and that we have just shared alot of things. I know it sounds like the risk of transmission is low, but somehow I got it without any risky behavior. We still don't know about my husband yet, either. I can't stand the waiting. I have to take the kids in next week for tests or I will go nuts. My husband is a little concerned about how he will do it, he has more to think about with work, insurance, etc. I saw a couple of books tonight at Barnes and Noble about HepC, and they were ok, just alarming kind of. One of them said that HepC inevitably leads to destruction of the liver, and then talked alot about kids having it. Well, sorry to be so depressing, I'm just so worried about my family's future. If I got it so easy, I can't imagine how my daughter will have escaped it. I worry about if we used the same bathroom within minutes of each other hundreds of times, maybe when I had my period, sorry gross you out, but you know how you might not see anything you left behind if it's microscopic. Jeeeeez, so much to worry about!! I hate to think of her having this, there sure must be alot of guilt that goes along with that, too. Anyway, thanks again, and sorry to drive you guys nuts. Val

     
    Old 04-05-2002, 11:27 PM   #39
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    Re: Hepatitis C test

    Hey guys here I am again. I think now that I am getting used to my diagnosis, I am starting to really stress out more about my kids possibly having it. My eight year old and I have just always been so close, hugging and kissing, and who knows if once or twice on vacation or camping or something like that we might have shared a toothbrush. I'm just saying that she's the one that worries be the most, being the youngest, and that we have just shared alot of things. I know it sounds like the risk of transmission is low, but somehow I got it without any risky behavior. We still don't know about my husband yet, either. I can't stand the waiting. I have to take the kids in next week for tests or I will go nuts. My husband is a little concerned about how he will do it, he has more to think about with work, insurance, etc. I saw a couple of books tonight at Barnes and Noble about HepC, and they were ok, just alarming kind of. One of them said that HepC inevitably leads to destruction of the liver, and then talked alot about kids having it. Well, sorry to be so depressing, I'm just so worried about my family's future. If I got it so easy, I can't imagine how my daughter will have escaped it. I worry about if we used the same bathroom within minutes of each other hundreds of times, maybe when I had my period, sorry gross you out, but you know how you might not see anything you left behind if it's microscopic. Jeeeeez, so much to worry about!! I hate to think of her having this, there sure must be alot of guilt that goes along with that, too. Anyway, thanks again, and sorry to drive you guys nuts. Val

     
    Old 04-05-2002, 11:43 PM   #40
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    Re: Hepatitis C test

    Hi all, actually I hope I am doing this right, I wrote a letter before and don't think it posted cause I put in the wrong password, so I apologize if it does, and I am driving you nuts even further! My question tonight (will this ever end for you guys??) is that I think since I am getting over the initial shock of my diagnosis, I am really starting to worry more about the kids being infected. I was at Barnes and Noble tonight, and looked over a couple of different books on it, and I guess they just don't really know. It's just that, if I got it so easy, I can't imagine my 8 year old escaping it. We have been so close, hugging and kissing all the time, and I know that's not supposed to be a real risk factor, but I can't even think of how many times, on vacations, campouts, etc., that we shared drinks, and maybe even toothbrushes. I wouldn't usually do that, but with my daughter I wouldn't think much of it I don't think. And, what if she used the bathroom right after me, like hundreds and hundreds of times, and I might have left a microscopic bit of blood from my period? Happens alot. I will be so worried until I get them tested, which I should just do next week to get it over with. I'm so scared to do it, though. I can't imagine having to deal with my own health issues, and take care of someone else sick, too. The docs that I have asked seem like they really don't know the risk factor on household transmission. It's just that with me and my youngest one, we have just had alot of contact, I breastfed her for a long time, she would sleep in my bed all the time, you know, just real closeness all the time. Seems like if I got it, and can't even think of one risk factor, then that's even more scary as to her getting it. Well, sorry to sound so depressing, I'm sure after the kids are tested, and I pray that they are ok, and then I know the extent of my disease, I will feel better. Thanks again soooo much for your letters, I swear they are the only things getting me through this!! Val

     
    Old 05-08-2002, 07:29 AM   #41
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    Re: Hepatitis C test

    Valgar !!!!!!!!!! you sound just like I did the first time I came to this site, lots of questions & you can't get the answers fast enough right ?
    Sounds like you have gotten all the info you need now so go live your life as all have sais it's gonna be OK !
    I was just like you a few months ago.
    Give it to the LORD, do what all have told you to do & enjoy your kids. Take it one day at a time.
    You can turn this thing around and make it a positive if you put your mind to it.
    Put all your energy & time into your kids, stay busy & you won't have time to think about the hep, it will get easier with time.
    REPEAT AFTER ME - THIS HEP THING IS NOT GONNA CONTROL ME I'M GONNA CONTROL IT !!!!!!! AND THEN DO IT !!!
    If you can read this you found the thread.
    It's 2 pages maybe she's not clicking on the 2nd. page & wonders where her new post went ??

     
    Old 05-16-2002, 08:33 PM   #42
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    Re: Hepatitis C test

    hey guys i am new and been told that i have hep c. i dont do drugs i did get a tatoo but i saw a clean needle and he put the ink in seperate cups. i work in a place were the histories of our clients are not goo. i have been bitten,scratched,and cut from a broken window with a person that has hep B. could i have gotten this from her? i am still waiting for my viral load info and the other test the specialist ran. i want a biopsi but i have to wait he said. i am scared but i feel like i want to scream. can someone give me some advice?

     
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