Hep B & C With No Symptoms

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lassieluv
Regular Member


Date Joined Apr 2008
Total Posts : 254
   Posted 4/11/2008 11:11 AM (GMT -7)   
I have been diagnosed with Hep B & C since since JAN 1986.  It was the result on several blood transfusions in DEC 1985.  I was hospitalized for two weeks and have not had a symptom since, except fatigue.  I know it doesn't go away but how long does it take to redevelop symptoms?  What lies in the future for me?

1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 4/11/2008 2:24 PM (GMT -7)   
lassieluv, hi and welcome to HealingWell. I think it is wonderful that you have been symptom free for 22 years. I would suggest that you make an appointment witha GI doctor for some testing. Just to see where you are with the disease. It is always smart to be aware of potential problems. Your GI Dr will do the necessary testing and let you know what's going on. If everything is status quo he/she may only want to see you yearly. Keep us posted and you are always welcome to post anytime.
 Shelly
 

“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."

 


lassieluv
Regular Member


Date Joined Apr 2008
Total Posts : 254
   Posted 4/11/2008 2:45 PM (GMT -7)   
Thanks you guys. I guess I should take some more aggresive action. I've been putting it off for quite some time because I think I am afraid of what the dr might say. I'm sure I need a liver biopsy but I am scared to death because the few people I know that have had one say they are extremely painful. Also I am being quite ignorant by thinking "if ain't broke, don't fix it". In my blood work my LFTs are within normal range so I really haven't been too concerned. After reading what others have posted I think it's time for me to change my thinking.

Thanks dansbrother for all the history and facts about hep C.

And thank you 1Shelly! for your warm welcome th this forum. I will keep you all posted with what comes next.

TalktomeHIV
Veteran Member


Date Joined Jun 2007
Total Posts : 1539
   Posted 4/11/2008 4:11 PM (GMT -7)   
How old were you when you had the transfusion, and have you been checked it all for Hep B since?

Hepatitis B is acute (short term, eventually cleared from body) for about 90 percent of people over 10 or so, and usually only chronic (long-term, non-clearing) for kids a lot younger. It's possible you may not even have Hep B anymore, since when it clears it can be 6 months to a year before, and you would have likely been at a point where it could still be in your body but have the potential to clear.

For that matter, some people's bodies are actually able to clear Hepatitis C as well, though this is less common. Your best bet is to get follow-up antibody and viral load tests for each. The viral load tests are important, because even if you have cleared the viruses, you will likely still test positive for antibodies, since the body will continue to produce them, and only a check for the virus itself can truly determine whether you are still infected.
HealingWell.com HIV/AIDS Forum Moderator
HIV Hotline Counselor


JohnCT
Regular Member


Date Joined Mar 2008
Total Posts : 202
   Posted 4/11/2008 7:25 PM (GMT -7)   
Hi lassieluv,
At the risk of contradicting one aspect of the advice you've received, I need to suggest what I have found in my research.
I have had Hep C in my system for at least 30 Years; I had Hep A 45 years ago; and have the markers showing that I had Hep B in my system at some point. Since the Hep A infection, I had no identifiable symptoms until about 4 years ago. In the last 12 months I have had real symptoms, including ascites (fluid retention), varices (sp? - weakened GI veins), severe fatigue, random fevers, enlarged spleen that causes a dangerous drop in blood platelets, and elevated ammonia causing mind-fog and memory problems (not good for a computer network engineer).
Understanding that others on this forum have more experience than I, I can only tell you what I have heard from some of the top researchers at Yale and Bayer, and what I have done.
I was dissuaded from a liver biopsy based on the opinion that unless you're ready for a transplant, the information is interesting but not necessarily helpful at this stage. I was told that the 3 blood tests that determine a MELD score (statistically your potential of surviving 3 months, ranging from 6 to 40, with a transplant recommended at around 16) and the determination of what stage of liver disease you fall into, based on physical observation, the Dr. can evaluate what medications are needed and when to start the liver transplant pre-screening.
I am at a MELD of 13 and am pre-screened for the transplant. I am actively working with 2 transplant teams at 2 transplant centers and am on the not-ready-for-prime-time list since I am not yet at a MELD of 16. I can't be treated for Hep C since my platelet count is so low and Interferon cuts that count in half. So the doctors want to transplant the liver, then treat the Hep C, since it is easier to treat in a recently infected liver. For whatever it is worth, I have not had a biopsy.
So IMHO, I suggest that you ask both how a biopsy will increase your survival and if you are not convinced, seek a second opinion. In your case there may be valid reasons for a biopsy, perhaps related to treatment. In spite of the good intentions of dedicated doctors, one truth exists at all of the clinics: procedures and tests generate income.
I wish you the best in your traveling of this Hep and liver path. I hope that you have the most minor, or better yet - no symptoms. Whatever happens, stay in touch with those on this forum. As I am sure you know, they are caring, supportive and knowledgeable. Finding them has given me a real boost in my resolve. So when you're down, let someone know -- it helps.
Be well, John
If I weren't having so much fun with you guys,
I'd love to be out sailing on Long Island Sound
Woodmont on the Sound, Connecticut


lassieluv
Regular Member


Date Joined Apr 2008
Total Posts : 254
   Posted 4/12/2008 5:30 AM (GMT -7)   
Thanks for the opinions and medical facts. I was diagnosed with Hep C when I was 33; I am now 53. I had severe syptoms at 33 but have not had a flare up since then however I do get fatigued easily. My mom visited me during the time I had the flare up. She got sick several years later (I can't remember from what or exactly what tests she had done) but the drs could told her she had been exposed to Hep C 10yrs earlier, same time she had visited me.

I do not have that great of a pc dr. What test (other than LFTs) should I ask for? If I need treatment for Hep C I want to know as soon as I can to prevent further damage.

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 4/12/2008 6:19 AM (GMT -7)   
Hello Lassieluv, I don't know what exact blood tests you should have have. But let your doctor know exactly what you are worried about and he will know which ones to order. Shelly may know. I just want to tell you... getting educated on this disease will help you make smart decisions for yourself. If a person has no idea about the disease they won't know what questions to ask the doctor or what options are available to them. I am a very big advocate of patients taking a active part in their medical care. So keep up the good work.

Good luck ........thoughts and prayers
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


TalktomeHIV
Veteran Member


Date Joined Jun 2007
Total Posts : 1539
   Posted 4/12/2008 7:25 AM (GMT -7)   
dansbrother said...
Be Clear "HIV Moderator" on your information on Viral Hepatitis C clearing the body. Our Forum is strictly on facts and yes we have no ego on our information and we stand back when education and knowledge appears in medical knowledge but unless you can prove Hepatitis C clears the body "sometimes" by medical facts than we are sticking that once a person is tested positive for Viral Hepatitis C Liver Disease that they need to get treatment ASAP. We Welcome your information by medical facts BUT many people come to this forum testing positive for Hepatitis C and Hepatitis B and Autoimmune Hepatitis by medical blood test BUT saying that a Positive Test for Hepatitis C may "clear itself up" is not of sound medical knowledge to this forum. Please use reference to medical facts when stating these facts. Many in this Forum have lost family members to Liver Disease including Hepatitis C and we also have a medical nurse who volunteers information.All I ask is please give information by medical fact. Opinions are more than Welcome but Medical Facts trump Opinions. It's very misleading to say that Folks who test Hepatitis C Positive, that it "may" clear the system. Hepatitis C is a very Life threatning Disease if ignored and as one who has lost a 45 year old brother to the disease of Hepatitis C, I will not endorse false information without medical reference to the facts. I'm willing to be educated but not endorse opinions I don't support.


Dan:

I am a counselor on an HIV and Hepatitis hotline with information provided by the Centers for Disease Control in conjunction with the state department of public health. Is it common for people's bodies to clear HCV on their own? Definitely not. It is possible, however. It is, however, common for people to clear HBV on their own.

I'm sorry my post seems to have hit a nerve, but I stand by the information I provided as a well-educated, and regularly updated hotline counselor, and educator.
HealingWell.com HIV/AIDS Forum Moderator
HIV Hotline Counselor


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 4/12/2008 7:57 AM (GMT -7)   
Hello Talktome
I appreciate your comments but with all due respect.....
I think why it hit a nerve of Dansbrother and myself and others that we feel that Hep C clearing on it's own, is so rare that it should not have been mentioned. We are concerned that now some new members may not get the help that they need... because of your statement:
"For that matter, some people's bodies are actually able to clear Hepatitis C as well, though this is less common." It's very misleading. It is more than just "less common", it is extremely rare. It is very important for anyone who has been diagnosed with any of the Hepatitis virus' to keep getting seen by a doctor and not even think "this will clear on it's own, so I don't need to see anyone. "

And also...........We advocate everyone being seen by a doctor and having blood work done by labs first. But as you know everyone doesn't not have insurance or can not afford to pay for lab work or doctors visits nor do some have access to get to places where it is free. Only as last resort do we mention donating blood as a way to find out if they have Hep. People need to find out if they have an infectious disease anyway that they can.... so they can take steps not spread it. If they don't know that they have it, they can infect others and not even realise it.

Respectfully............
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


TalktomeHIV
Veteran Member


Date Joined Jun 2007
Total Posts : 1539
   Posted 4/12/2008 8:02 AM (GMT -7)   
I'm sorry that my chosen wording was misleading. Looking back, I can definitely see how it might be confusing. I also don't want to seem like I am discouraging anyone from seeing the doctor, because it's still definitely very important, and if this were a hotline call, we'd have discussed that.

As for testing via a blood donation site, I still vehemently disagree because there are always other options, and there's always someone there who may be able to help if you look for them. I don't believe that a person should be testing using a method that could potentially serve to infect another person, no matter how low that chance is.
HealingWell.com HIV/AIDS Forum Moderator
HIV Hotline Counselor


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 4/12/2008 8:24 AM (GMT -7)   
Accepted Talktome. But on the other point can we just agree to disagree? You have a lot of knowledge on the infectious diseases that come from a different prespective than the rest of us. So you are very welcome to share with us any knowledge that you would like.
Our members tend to either have the Hep disease themselves or a be caregiver of one. Either way when they finally get up the nerve to post here they are scared silly. So for the most part I try to have a kinder gentler forum. It's a fine balancing act sometimes between giving them the support that they need without scaring them half to death. I would hate to scare someone off that really needs support through this hideous disease.


Take care..........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


lassieluv
Regular Member


Date Joined Apr 2008
Total Posts : 254
   Posted 4/12/2008 10:18 AM (GMT -7)   
Yes, you guys have scared me; but maybe in a good way. I still don't think my original question has been anwered though. If I contracted Hep C in 1986 and have had no symptoms other that nausea & fatigue why haven't I had any other symptoms since then. Is this common? I don't feel like I need to be on the list for a liver transplant - far from it I hope. And I don't feel like I am going through a dieing process. But then again I don't know what to expect. That's why I am here. My drs have said that my liver is not enlarged which I think is good news. But does the liver always enlarge with Hep C?

lassieluv
Regular Member


Date Joined Apr 2008
Total Posts : 254
   Posted 4/12/2008 12:47 PM (GMT -7)   
dansbrother - thank you for your patience with trying to answer my questions.

I will ask for the blood tests from my pc dr. If he is not concerned, I will look up a Hematologist.

1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 4/12/2008 4:09 PM (GMT -7)   
Talktome, I can appreciate the fact that you are well advised in the field of HIV however; our forum moderator has never advocated going to the Red Cross to donate to get tested. That was a suggeston made by a member who was responding to another member who does not have the financial ability to pay for testing. Further, I think that you of all people would have to admit that HIV testing is offered for free from multiple sources whereas Hep testing is not. Also, millions and millions of dollars are donated to the Red Cross each year. Since in all liklihood the majority of our current membership has at one time or another donated to the Red Cross Hepatitis patients should be represented by them as well as HIV patients. Since you are very active as a counselor etc, you may want to suggest to the powers that be that more should be done through the Red Cross, CDC, and others to provide more resources to our agenda on the issue of Hepatitis and Liver Disease. That I know of there isn't any equitable resorces funded in the same way for Hep research and developement. HIV can be stabalized (Thank GOD) now with all the wonderful drugs that are available and people like Magic Johnson have given hope to many who suffer from HIV. On the other hand, thos that suffer from hep long term do not have the same promise of hope at the present time. Early detection and treatment is imperative to survival. So rather then discourage anyone from the initial testing, diagnosis, and treatment needed it has been this forum moderator's goal to promote early teating and education. Added with that everyone deserves and receives the encouragement and hope needed to survive. I applaud our moderators determination to promote all of the above. It is refreshing to read her posts as well as always encouraging and educational. Her knowledge base of this terrifying disease is supurb. So possibly you would consider supplying the members of this forum with specific locations that they can be tested for hep when they have no feasible means to pay for it as your previous posts have indicated you are aware of. The regular members have taken a proactive method of dealing with Liver Disease and alot less critical. We have collectively taken responsibilty to provide positive and yet honest approaches to this hideous illness.

 Shelly
 

“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."

 


lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 4/13/2008 1:06 AM (GMT -7)   
Lassieluv: I believe your original question was about lab work and biopsy. I always keep track of my labs. (ask for copy) and check out bilirubin ,creatinine , and INR. those three labs are the ones that can show you your MELD score. The platelet count and many other values are important but those three are the ones used to get the meld score. Which you can calculate yourself.

Do not be afraid of a biopsy , Just make sure they are guided by a Scan. I had my first one done , where they just scan and mark a spot, (didn't work) they got lymph nodes, and colon. So I insisted on a scan guided biopsy a week later. Second time they got the liver.

There is no pain when it is done, they do a local and a general mild anesthesia. You do get a sharp cramping at the site (where the needle goes in) for about two days. Other than that it is'nt bad. I have gone through the eveluation and am listed as a 9. Trying to keep it there by diet and lactulose. I have cryptogenic liver disease. It does't matter what you call it we are on the same boat. Liver Disease is what it is. Get taken care of soon so it doesn't progress.

Oh! I had no symptoms . Just one day found myself in a hospital. Had lost 3 days. Now the fog comes and goes. Now my symptoms are fog, mild swelling on ankles, had some itching a while back. And my short term memmory is *&%#+*

lassieluv
Regular Member


Date Joined Apr 2008
Total Posts : 254
   Posted 4/13/2008 7:55 AM (GMT -7)   
I definitely wrote down the lab tests you mentioned and will ask my pc dr about them when I see him next, probably after the SCS implant. Not to sound ignorant but what does MELD stand for? I am sorry your first biopsy went wrong and had to have another. But thank God they got it the second time!

Thank you for answering my question about no symptoms until the ER visit. I will definitely take a more aggresive approach, again after the CSC implant.

Thanks!
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