2nd post

[talk2ha]

Hi friends,
I'm from Vietnam and did post here on this board once a few months back. I was diagnosed with active chronic Hep B 2 years ago. I took Zeffix for about 6 months and went for tests after that but GOT and GPT were 2 times higher than before taking the med. Last week, 9 months from the tests done in January, I went again to a big hosp in Hanoi with a hope to seek for treatment and advice from a doc who specializes in liver disease. Instead the reception refered me to a general examination room, and a doc there ordered me to do these tests: HBeAg, HBeAb, GOT and GPT. The results are as follow:
HBeAg (+)
HBeAb (-)
GOT: 180
GPT: 386
I did not come back to that doc for her advice b/c I don't think she knows as much about Hep B as you do here. I asked her whether is is necessary for me to have a biopsy and HBV DNA test and she said a biopsy is not needed. For HBV DNA test I would have to go to another hosp b/c they can't do it here. So I would like to ask you on this board, (esp. cuteous and tonyZ b/c I remembered you answered my post last time but I forgot to say thanks ;-)  ) a few questions:
1. Is it necessary to have a biopsy done and HBV DNA test?
2. Regarding my high levels of GOT and GPT, should I take Zeffix again for 1 year without the doc's prescription?
3. If I wanna get married and have a child, how many percent will the child still be infected from me even though it will receive vaccine within 24 hours from birth?

I'll make sure to say a proper thank later ;-)
Thank you very much for taking the time to read and answer.
Ha

[cuteus]

although we are mostly patients dealing with hep c infection at this board, there are some caring folks here that have amassed some links on other subjects, including boards that deal mostly with hep b. I used to have one, but can't find it right now. If you don't get a response, I will check back later with the link.
best to you

[kennedge]

I just spoke with my wife about this forum, 1st time in a long time, only because she asked what i was doing...and i said i was thinking of you guys...when i was dx'd in 02..i said what? I'M GONNA DIE...freak out as you might say...but i read, looked, researched, checked facts, fictions alternatives, i even got out the old triple beam to weigh the alternatives...i decided to tx in jan 03, peg/riba 120-5.ml/1200 48 weeks...was it fun..haha...was it scary..you bet...was i glad i had a place to ask ??s you bet..was i glad some people made me stronger...you bet...this is that place...a nice place to build your knowledge, to fight your fight, a nice place to reach out when someone gives up...i am 11 months post tx, 12, 24, 48 64 wk neg...all neg...1a, 1&1 biopsy, 1 mill load...i come here to see if i can help, the way i was helped...you know the full circle thing....life is a roller coaster...lots of ups and downs...but you know what, its such a dang fun ride i keep getting back in line to ride it again...

[mikesimon]

I am happy to see you post again. Your words are so true and the sad thing is that the wonderful things you got from this board are being obscured as of late. Thanks for reminding us and providing some positive input for the newcomers here. There has been little of that lately. Congratulations on staying virus free and good luck to you. Mike

[Astrolady]

Congrates on SVR, I only thought that a diagnosis of HepC was a death sentence prior to finding this site.

[couchpotato]

If you don't mind me asking could you tell me about your pre-transplant time. How long did you have to wait? Were you in hospital? How long of a recovery before discharge? I know everyone is different, all circumstances and complications are different, but I was just wondering how it went for you.

Mattie

[mikesimon]

Hi there. I hope you're holding up okay. I know it can be quite taxing. My situation isn't typical but I'll give you the details.  I had experienced 2 major esophageal bleed in 1995 but was  determined not sick enough for transplantation. Then in 1997 after routine tests I was finally listed but as long as the bleeding was controled I remained a low priority. In late May of 2000 I went to the center for annual routine scans and a lesion was observed on my liver which was supected to be malignant and I was moved up on the list "big time" after a chest xray showed my lungs were clear. I was transplanted June 17, 2000. I was discharged 5 days after surgery. I went in on a Friday and was home the following Wednesday which was a very short stay for my center. But remember I was feeling okay just before transplant and in fact was riding my motorcycle all the time. I stuck a vibrating pager down the front of my pants while riding so I would be aware if I were paged by the center to come in and get a liver. Karen and I joked that if I got the call while riding we'd have to drive the bike into the center for transplantation. We guessed that I would be the first trnapslant patient to arrive by Harley. So that's my transplant story. It doesn't sound bad at all - does it? By the way the lesion was later determined not malignant Now fighting the hep c following surgery wasn't as short a story but it seems like that too is working out okay. Best of luck to you Mattie. I will keep you and your husband in my heart. Mike

[layla]

It's good to hear your doing well and I'm glad you posted such a good reminder for all of us. Giving back is a great thing. LL

[scruffy]

You guys were around before I started tx a year and a half ago and I always benefitted from you experience. Athough I'm not clear at 6 mo. post tx I have high hopes. Actually I simply wish to say thanks to you both.Thanks Frank

[mikesimon]

You're very welcome Frank. I sure hope you see some good results soon. Keep us posted if you will. Mike

[couchpotato]

Thanks for replying Mike, you have given me an optimistic time frame that hopefully we can come close to.

Although you were not infirm pre-transplant, I believe the whole process begins the minute you hear the word...TRANSPLANT.... I still the remember the sick feeling in the pit of my stomach when that word was spoken to us. I'm sure Karen and you do also. You and your family had 5 long years to deal with it, the doubts, the fears, the second guessing, the what if's. But WOW!!!! High on the list in late May, Tranplant on June 17, and out 5 days later!!!!!! THAT'S INCREDIBLE, MIKE. Isn't the whole thing mind blowing?? Boggles the mind sometimes.

I am having difficulty in wishing for a liver to become available...afterall, we all know what must happen for that to be possible. I know that we are not causing the death of the individual but still, knowing the suffering of another family while ours is rejoicing is a hard pill to swallow.

Funny picture you painted of you on your bike with the pager in your pants. My husband has not been on his since summer of 03 and has talked of selling it to help us out financially. I will not allow it. Although we are strapped for cash, it is only money and I think he needs the knowledge of it waiting for him at home. ( whether I can let go enough to let him actually ride it could be an entirely different story! hahahahahaha).

Anyway, so powerful for me to know that you are well these 4 years after transplant. Thanks Mike, I needed the encouragement from someone who's been there.

Be loved, Be happy   Mattie

[talk2ha]

Thank you, Cuteus and revenire for paying your attention to my post. I'm looking forwards to receiving the link from you, Cuteus. Thanks once again. Ha

[Amerabrit]

Good luck with your research, hope the links our friends have provided you are helpful to you.  Best wishes for a healthy future which includes a loving family:)

[Amerabrit]

K - Great post, thanks for reminding us all of how helpful this Forum can be and also for sharing your great news.  Continued good health to you.

[mikesimon]

You are one very wise woman to make sure he has the Harley waiting for him. I think it is so important to have something to look forward to and silly as it sounds boys really love their toys. I thought often about selling mine when I didn't feel at all like riding but Karen wouldn't go along with me on that one. She saw past the way I was feeling even though I couldn't always see that far. Now I'm looking to buy another bike so things do get better. Since my transplant there have been very exciting advances in this area. At Pittsbugh (Starzl Transplantation Institute) they suppress the immune system immediately prior to surgery and after the tranpslant the immune system wakes up and thinks the liver belongs. Thus the need for anti rejection drugs is dratically reduced. Here there are patients taking 1 or 2 miligrams of Prograf a week shortly after transplant. I'm 4 years + out and I take 3 miligrams per day so you can see the huge strides that have been made. Many centers don't use predisone at all and it was standard in 2000 after surgery though patients were weened over time. So there is good reason to be optimistic. I know about the conflicts surrounding benefitting form another's death but in time that issue resolves itself. It's a strange and awe inspiring event but in the end everything starts to make sense. I hope your wait is not long and that everything works out well for you. Good luck. Mike

[cuteus]

check the above link that Revenire gave you and this one for support groups
http://hepatitis.about.com/od/supportgroupsforhepb/

Mattie, Ty for your beautiful words, we've 'come a long way baby'
and I have learned to measure my words, partly because of our little encounter...;-}. but caring has always been there and the desire to see things get better for you and your soulmate also.
I will not want my compassion overshadowed by pettiness.

I am still praying to whatever powerful positive energy there is out there for the well being of your loved one.
The gift from the grieving donor's family will hopefully be the start of their spiritual healing.
be well

[talk2ha]

I just came across that website yesterday and thought, as you do, that it is a very good and useful one. Thank you.