Emails

liver411

Re: Treatments



Hi Deena

I have been following parts of your tread for a while now, but you've had  such great answers that I have not responded.  I guess I only wanted to throw  my two cents in.  I think you are experiencing a dilemma that is common with  people in your state.  You're feeling fine and then one day you learn you  have this potentially life threatening disease and you want a cure.  Coming  to terms with "waiting and watching" can sometimes be worse than moving  towards treatment.



In my house we are living with both scenarios, although different.  My

youngest daughter (Maren 4yrs) came home from China with very active HBV at  10 months.  We scurried around trying to figure out what HBV was.  We wanted  appointments NOW because we were sick with worry - literally.  Little did we  know a few weeks here and there (even months) were not going to make that big  of a difference.  Still when told our daughter was a prime candidate for  treatment, what else could we do?  We treated.  We had affirmation from a  very qualified and respected doctor at Johns Hopkins.  We are very lucky to

live near such a facility with such varied expertise.  I guess what I'm

trying to say was that the decision was almost easy for us because we kind of  felt we did not have much of an alternative.  Treatment was the way to go in  her scenario - HBeAg+, elevated ALT 3 times normal and high HBV DNA level.  (would have been better if her DNA was lower,but...)



On the flip side.  I have an aortic aneurysm at the base of my heart.  If it  ruptures I wil most surely die within minutes.  Although I am not infected  with HBV, I am very much in a wait and watch mode like you and many others  that have active HBV (replication of the virus), but normal ALT values,  meaning little or no liver damage.  For me it took many months to come to  terms with having this "bomb" in my chest.  For a while I really wanted to  just have the surgery and get it over with - do something about it..  And I  did find surgeons that were more than happy to comply, much like you that has  found a doctor willing to treat because "he can".  I  was very scared and  confused and didn't trust anyone.  Still I eventually found a doctor that I

trusted and highly respected and as a result I have now put off surgery for  over four years now.  Based on diagnostic tests run every six months, the  doctor re-evaluates my situation.  I'm not saying that there isn't any stress  involved with this mode, (Steve can certainly attest to this...) but  sometimes the treatment can be worse than what your're living with right now.   



Plus in your scenario, you may be giving up a potential weapon that you could  use later down the line when you are a good candidate for treatment.  If you  are not experiencing liver damage then with today's current drugs there is  not a good option.  If you are experiencing liver damage then you need to  have ALT/AST run more frequently so that you can catch the virus in a flare  at which time you might be a good candidate.  Also if you are not  experiencing liver damage,  you might wait long enough such that a better  drugs may be out there to treat you.  I  know that with my heart surgery I

have waited long enough that I now have more surgical techiniques to choose  from and perhaps even more importantly, surgeons have had more time to gain  experiencce with these techniques.  



So like everyone else is probably telling you, try to relax a bit.  

Definitely learn as much about this virus as possible, but do not panic.  

Keep on top of it and force your doctor to do the same.  If he can't keep up  with you then replace him.  Looking at your story, I have little respect for  a doctor that chooses to treat just because he has access to the drugs and  perhaps feels you might "feel emotionally better" thinking your're being  treated.  That's the part you have to get over.  Certainly allow yourself the  emotions, the grieving, the anger.  It's all part of the process.  But please  give yourself the time to make the right decisions, find the best doctor and  become the best advocate for yourself that you can.



Good luck to you Deena

Maureen



Mommy to Kate and Maren (4yrs. from Hunan, HBeAg+, HI ALT, non-responder 6  mts IFN, 1 yr on  LAM responded.  Now HBeAg neg, HBeAb+, normal ALT,  non-detectable DNA, loss of HBsAg but not antibodies.  Keeping our fingers  crossed that this response is durable)



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