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A message from a Hep B carrier to all parents
Hi,
I'm 29 years old. I contracted Hepatitis B at birth from my mother.
All through my childhood, Mum and Dad always told me never to tell anyone that I have Hepatitis B and to keep it secret. I got in trouble when I told a friend in high school that I have Hep B and she told her mother, who phoned the school. Mum and Dad freaked out at me for telling someone. After that episode, I always kept it secret and never told anyone, and hence, never got the necessary treatment that I could have gotten to treat this early.
Now, my liver is acting up. My AST and ALT levels are 5x the normal range. I don't know how long they have been this way and quite frankly I am freaked out because I don't know what stage my liver might be damaged.
All I can think about is how STUPID my parents were for trying to downplay the risks of Hepatitis B and not speak of it at all. I never ended up telling anyone or finding out about it. All my parents told me was that I should not drink alchohol or smoke (both of which I did in the army), and still they didn't tell me anything. They just hoped that it would go away.
If I had been more comfortable speaking about Hepatitis B, I might have sought the proper treatment and monitored it closely.
I am thankful that I have a supportive girlfriend who knows of this illness and we're going to get through this. It's good to know that there are many other people out there who have Hep B and who have gotten through it and led healthy lives.
This is a message to all of you, who are either parents, friends, or people suffering from Hepatitis B.
1. It is serious. Don't downplay the risks.
2. Talk about it. I'm learning that it's really OK to talk about it, and find a way to get through it.
3. Get treated and monitor it.
Best,
Leonard
I'm 29 years old. I contracted Hepatitis B at birth from my mother.
All through my childhood, Mum and Dad always told me never to tell anyone that I have Hepatitis B and to keep it secret. I got in trouble when I told a friend in high school that I have Hep B and she told her mother, who phoned the school. Mum and Dad freaked out at me for telling someone. After that episode, I always kept it secret and never told anyone, and hence, never got the necessary treatment that I could have gotten to treat this early.
Now, my liver is acting up. My AST and ALT levels are 5x the normal range. I don't know how long they have been this way and quite frankly I am freaked out because I don't know what stage my liver might be damaged.
All I can think about is how STUPID my parents were for trying to downplay the risks of Hepatitis B and not speak of it at all. I never ended up telling anyone or finding out about it. All my parents told me was that I should not drink alchohol or smoke (both of which I did in the army), and still they didn't tell me anything. They just hoped that it would go away.
If I had been more comfortable speaking about Hepatitis B, I might have sought the proper treatment and monitored it closely.
I am thankful that I have a supportive girlfriend who knows of this illness and we're going to get through this. It's good to know that there are many other people out there who have Hep B and who have gotten through it and led healthy lives.
This is a message to all of you, who are either parents, friends, or people suffering from Hepatitis B.
1. It is serious. Don't downplay the risks.
2. Talk about it. I'm learning that it's really OK to talk about it, and find a way to get through it.
3. Get treated and monitor it.
Best,
Leonard
I sent You Private message
Sir,
I recently done blood test and shows I have Hbsag ..i shocked bcz 2months before only i got married ..what i can do treatment is aviable or not pls help
I recently done blood test and shows I have Hbsag ..i shocked bcz 2months before only i got married ..what i can do treatment is aviable or not pls help
My gf have diagnosed with hepatitis b on feb 2013, We had done all the test which is showing normal. Doctors are not giving medicines and they told her b/c all reports are normal, What should we do. i am quite confused should i get married with her or not.. please tell me in elaborate in my mail id nasir********@****
Thank you for your sharing your experience, a sign of courage in itself. Things may not be as terrible as you think. First, your girlfriend was already vaccinated so it is almost certain she is immune to HepB and cannot get it from you or give it to her future children. Have her tested and look for HBsAg=negative, HBcAb=negative, and HBsAb=positive. With that result she is safe for life. Second, you have already done the right thing: have your doctor monitor your liver and treat appropriately.
Best wishes.
Best wishes.
Hey hey,
Just read your update.... Always glad to hear other people's plight with HBV..... I totally agree being able to stay quiet about HBV is one of the hardest things in life, especially when at an age where alcohol is predominant in so called 'socailising'. I'm quite a newcomer on this forum as well but knowing (and reading) the encouragement from the 'regular' members goes a long way...
Just read your update.... Always glad to hear other people's plight with HBV..... I totally agree being able to stay quiet about HBV is one of the hardest things in life, especially when at an age where alcohol is predominant in so called 'socailising'. I'm quite a newcomer on this forum as well but knowing (and reading) the encouragement from the 'regular' members goes a long way...
ROFLMAO!!!
Oh --- yes... For the record....
Of course...
Oh --- yes... For the record....
Of course...
>>>"We will do what needs to be done. I am forever your wife. As the Chinese saying goes: marry a rooster, go with the rooster, marry a stud, go with the stud. In our case, marry a pig, go with the pig."<<<
For the record...my wife married a stud...LOL.
For the record...my wife married a stud...LOL.
Welcome Leo. Great post. And awesome followup feedback by the crew.
We are all riding the same rollercoaster, while some are towards the front, others near the back, and while some still waiting in line to get on.
We get upset and want to blame somebody. It's the Monday quarterback syndrome.
Your parents did what they thought was best. Since there was so little information and no treatment, what could they do. Let's face it, look at what happened after you told a high school friend...their parents call the school. Let's be honest, back then, we would have done exactly the same thing.
So shout if you have to, but in the end, go give your mom and dad a hug and say thanks for not knowing because it means this:
You never treated.
In those early days, when treatment became available, they just treated you with very limited info. There was no understanding on the consequences of treatment, like resistance. If you found out early on, you would likely have treated, and you likely would have developed resistance to the early antiviral. That would be bad.
We are all riding the same rollercoaster, while some are towards the front, others near the back, and while some still waiting in line to get on.
We get upset and want to blame somebody. It's the Monday quarterback syndrome.
Your parents did what they thought was best. Since there was so little information and no treatment, what could they do. Let's face it, look at what happened after you told a high school friend...their parents call the school. Let's be honest, back then, we would have done exactly the same thing.
So shout if you have to, but in the end, go give your mom and dad a hug and say thanks for not knowing because it means this:
You never treated.
In those early days, when treatment became available, they just treated you with very limited info. There was no understanding on the consequences of treatment, like resistance. If you found out early on, you would likely have treated, and you likely would have developed resistance to the early antiviral. That would be bad.
That's a high ALT but it could be much higher so don't panic yet. Do you know your viral load level or your e-antigen status? Had you been drinking shortly before the blood draw? Are you overweight?
I feel for you having to reveal your infection to new girlfriends over the years. I was already married when I found out so I didn't have to deal with that. The advantage to finding out about the disease when you're young is being able to address it early (not so much in your case) but the advantage to finding out a little later is the blissful ignorance. I think the balance tips in favor of knowing though.
I think a lot of us think, "If I'd known I wouldn't have done x,y or z!" I often think, "If I'd know I wouldn't have smoked for 10 years!" But, is that true? Its not like I didn't know that smoking can kill you or that binge drinking can be harmful or that getting in a car with a drunk driver is potentially fatal. How many things have you done even knowing that the results could be really bad? Your parents told you not to drink. But you were a young person and in the way of many, many young people you and I made choices based on something other than level-headed, rational reasoning. No one is really to blame for that.
We all look back and think about what we would have done differently but when we start to do that we should remember that back then, we weren't the person we are today. You don't get to re-do yesterday but you do have a chance to shape tomorrow. Put your energy there.
You can look in my profile for more about my Hep B story and I'm happy to answer any questions...welcome! Sorry it has to be under these circumstances.
I feel for you having to reveal your infection to new girlfriends over the years. I was already married when I found out so I didn't have to deal with that. The advantage to finding out about the disease when you're young is being able to address it early (not so much in your case) but the advantage to finding out a little later is the blissful ignorance. I think the balance tips in favor of knowing though.
I think a lot of us think, "If I'd known I wouldn't have done x,y or z!" I often think, "If I'd know I wouldn't have smoked for 10 years!" But, is that true? Its not like I didn't know that smoking can kill you or that binge drinking can be harmful or that getting in a car with a drunk driver is potentially fatal. How many things have you done even knowing that the results could be really bad? Your parents told you not to drink. But you were a young person and in the way of many, many young people you and I made choices based on something other than level-headed, rational reasoning. No one is really to blame for that.
We all look back and think about what we would have done differently but when we start to do that we should remember that back then, we weren't the person we are today. You don't get to re-do yesterday but you do have a chance to shape tomorrow. Put your energy there.
You can look in my profile for more about my Hep B story and I'm happy to answer any questions...welcome! Sorry it has to be under these circumstances.
Can you believe cajim doesn't think he's funny? Now I know he's just playing with us.
"We will do what needs to be done. I am forever your wife. As the Chinese saying goes: marry a rooster, go with the rooster, marry a stud, go with the stud. In our case, marry a pig, go with the pig.""
ROFLMAO!
What a wife!
Leonard - awesome post - I'm a firm believer in shouting to the rooftops ALL of humanities diseases --- How can the world learn if we keep things hidden?
How can we treat - how can we teach - how can we educate and eradicate diseases if we treat them as if they do not exist... Or if we are afraid of social stigma?
AWESOME POST.
Meki
ROFLMAO!
What a wife!
Leonard - awesome post - I'm a firm believer in shouting to the rooftops ALL of humanities diseases --- How can the world learn if we keep things hidden?
How can we treat - how can we teach - how can we educate and eradicate diseases if we treat them as if they do not exist... Or if we are afraid of social stigma?
AWESOME POST.
Meki
Hi guys,
Thanks so much for the responses. It's great to know that I'm not alone in this.
My ALT is 235 and my AST is 87. That's 5x above the normal range. What shocks me in all of this is that there weren't any side effects or symptoms that I know of. I was actually doing a medical checkup for immigration purposes and the doctor checking me showed me the results and told me to go to the hospital asap. I walked into the Royal Victoria Hospital (Montreal) this morning with these results and they've got me an appointment with a Hepatologist on 22 May.
Mentally, I'm at a point where I want to beat this virus. I don't care if I have to inject myself every week for 6 months. I've had Hep B for 29 years and frankly it's done nothing except been a weight around my neck. I was never taught how to tell someone (like, a girlfriend) that I have this disease and everytime I had to have this discussion with someone, it's been really painful because you worry about whether the person will understand or not. I was also never taught how to gracefully decline drinking at social occasions especially with colleagues and clients as there's a lot of pressure to conform there. If my parents could have just clued me in on some of these basic skills, rather than just avoid the problem and pretend it's not there (which I now know is the wrong thing to do especially with romantic relationships), it would have been much better. I still love my parents a lot.
What about you guys? I'd love to hear more about other people living with Hep B and how you're dealing with it.
Best,
Leonard
Thanks so much for the responses. It's great to know that I'm not alone in this.
My ALT is 235 and my AST is 87. That's 5x above the normal range. What shocks me in all of this is that there weren't any side effects or symptoms that I know of. I was actually doing a medical checkup for immigration purposes and the doctor checking me showed me the results and told me to go to the hospital asap. I walked into the Royal Victoria Hospital (Montreal) this morning with these results and they've got me an appointment with a Hepatologist on 22 May.
Mentally, I'm at a point where I want to beat this virus. I don't care if I have to inject myself every week for 6 months. I've had Hep B for 29 years and frankly it's done nothing except been a weight around my neck. I was never taught how to tell someone (like, a girlfriend) that I have this disease and everytime I had to have this discussion with someone, it's been really painful because you worry about whether the person will understand or not. I was also never taught how to gracefully decline drinking at social occasions especially with colleagues and clients as there's a lot of pressure to conform there. If my parents could have just clued me in on some of these basic skills, rather than just avoid the problem and pretend it's not there (which I now know is the wrong thing to do especially with romantic relationships), it would have been much better. I still love my parents a lot.
What about you guys? I'd love to hear more about other people living with Hep B and how you're dealing with it.
Best,
Leonard
You see so much fun in others that I'll bet your life is full of fun and happiness that will protect you against so many diseases in addition to HepB! Will learn from you!
There you go, being funny again.
What a thoughtful, informative post. Thank you. You are young and I am hopeful that your liver is not badly damaged at this point. What is your ALT? What is your viral load? Have you had a biopsy yet?
20 years ago, not much was known about HBV. And there was a crazy time in the world with the discovery of HIV...there was a learning curve when it came to attitudes towards these viruses. I didn't even know about mine until I was 28. cajim was even a skosh older than that. Your resentment is understandable but your parents probably thought they were protecting you and probably did not understand how important it was to monitor your illness...either b/c they didn't research it b/c they didn't want to accept it...or b/c the research just wasn't available.
Move forward, Leonard. Keep us updated on your progress.
20 years ago, not much was known about HBV. And there was a crazy time in the world with the discovery of HIV...there was a learning curve when it came to attitudes towards these viruses. I didn't even know about mine until I was 28. cajim was even a skosh older than that. Your resentment is understandable but your parents probably thought they were protecting you and probably did not understand how important it was to monitor your illness...either b/c they didn't research it b/c they didn't want to accept it...or b/c the research just wasn't available.
Move forward, Leonard. Keep us updated on your progress.
Your posting will help many people and their families to come. Thank you so much!
Indeed, it would have been better if your parents had started your liver monitoring and treatment sooner. On the other hand, please understand they must have been under much social pressure and worries. Forgiveness is a beautiful virtue.
I have tremendous respect for your girlfriend whose courage, knowledge, and devoted love for you deserve the praise of an Shakespearean poem. She reminds me of my wife who upon knowing that I have HepB was calmer than me and said,"We will do what needs to be done. I am forever your wife. As the Chinese saying goes: marry a rooster, go with the rooster, marry a stud, go with the stud. In our case, marry a pig, go with the pig."
Please make sure that your girlfriend is hepatitis B surface antibody (anti-HBs) positive. If not, have her receive HepB vaccination till she is immune.
Best wishes
Indeed, it would have been better if your parents had started your liver monitoring and treatment sooner. On the other hand, please understand they must have been under much social pressure and worries. Forgiveness is a beautiful virtue.
I have tremendous respect for your girlfriend whose courage, knowledge, and devoted love for you deserve the praise of an Shakespearean poem. She reminds me of my wife who upon knowing that I have HepB was calmer than me and said,"We will do what needs to be done. I am forever your wife. As the Chinese saying goes: marry a rooster, go with the rooster, marry a stud, go with the stud. In our case, marry a pig, go with the pig."
Please make sure that your girlfriend is hepatitis B surface antibody (anti-HBs) positive. If not, have her receive HepB vaccination till she is immune.
Best wishes
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