HepB follow-up experiences.

[stevenNYer]

I also saw an interesting post (can't find it now) asking about anxiety associated with HepB.  I thought it would be good to share our own experiences.  Me first...

I've gotten used to my 3 months DNA, ALT, eStatus tests.  I actually look forward to it because I am fairly certain that my DNA and ALT will be stable with treatment.  And I hope to see my eAntibody light up and eAntigen turn off.  As of last week, it didn't happened yet.

But I think mild anxiety is normal...

I hate anticipating the AFP numbers.  Despite it being "in range", I read too much into it.  

The annual ultrasound / sonogram still makes me anxious.  I try to hide it but I'm sure the examining tech knows.  The first time was real tough because I had no baseline and I just had bad thoughts about years and years of unmonitored HepB damaging my liver.  It has gotten easier each year.  I no longer try to decipher the images on screen by myself and I stopped trying to read the examiner's body language.  I just remind myself that things should be okay and wait for the results. And the results have been good so far.  And with that, I put it out of my mind until next July.    

[stevenNYer]

How you are feeling is very close to how I felt (and I suspect, how most felt) when first diagnosed.  I remembered thinking, what the heck is HepB?  But I feel fine.  How many million?  Any I'm going to die?  Do I really need to fill this lamivudine presciption?  How long do I have to take this stuff for?

Then you read, then you panic, think of the worst scenerios.  I think that is why it's so important to touch base with each other becuase most of use will be okay.  We just need to see that first hand to change our mindset.

I laugh when I read the life insurance part...I had the same experience :)

[cajim]

So true.

[zellyf]

cajim, that was very moving, thank you.

I read something very interesting recently from a person diagnosed with a non-HBV related cancer.  She said something like this:  I could have stepped off of the sidewalk that morning and been hit by a bus and killed instantly.  But I wasn't.  Instead, I was hit by the cancer bus and that meant I had a chance to fight for my life.  

We've been given that same chance.  Not everyone gets it.  

[cajim]

Me next…

When I was thrown in front of chronic HepB, its long, no-end course, jumping DNA, jumping ALT, possible discrimination, job-loss, cirrhosis, HCC…The first person that jumped into my mind was my 8 year-old youngest son, tears swamped my eyes…”How could he grow up without his father?  Then, my parents, I am supposed to accompany them all their lives’ journey.  How can I go before them?  So undutiful!  Then, my wife, how can I leave her mid-age letting her alone raise our children?”

I actually did not think of myself first, possibly because of my personal experience and my observations through my job:  10 years ago I had a near-death experience that made it really realistic to me that death is real and happens; in my job I see people pass away on a weekly basis, I see people that are alive suffering so much with lines of medical conditions in their charts most of which current medicine cannot do much about except supportive treatment.

Medicine has its limits:  a doctor who spent all his professional life performing surgeries on people absolutely refused any treatment for himself and passed away at age 70 because of a huge heart attack in his living room; if medicine can do everything, then Mao ZeDong, Ronald Reagan, the Pope… would live forever.

If death is unavoidable, then chronic HepB, jumping DNA, jumping ALT, cirrhosis, HCC cannot be worse than death itself.  

For my loved ones, do what I can now:  luckily I bought some life insurance on myself before I knew I had HepB.  Hope that money can help my wife complete our duties of raising our children, including our youngest 8 year-old (tears in eyes).

Oh, StevenNRer, sharing sometimes can be painful.

Let me end on a positive note:  A young patient I knew was so terminally ill that everyone around him knew he only had days to live yet before he was pushed into the operation room, he bang! bang! bang! cracked out one joke after another that made everyone unable to stop laughing with tears in their eyes.

[stevenNYer]

Initial diagnosis is hard.  That the reason why some of us are here.  We remembered how hard it was.  We want to help others know that they should be okay because we are like you.  And we are okay :)  Stick around.

[transuster]

Thanks, stevenNYer:

That's some of the most insightful thinking I've heard in a long while.  It's very comforting to know that there are those in the world who can rise above illness and emotional hurt to face the world and the future.  Thank you.  It gives me something to look forward to instead of crying my eyes out worrying.  Maybe I can follow your suit;-)