End stage Liver disease

Dear Dr. Black
    I attended your GI grand rounds for Non alcoholic fatty liver at Atlantic city Medical Center on April 12th. By the way, I am a student dietitian doing my dietetic internship at ACMC with Sodexho Health care services at present. I am interested in doing a case study presentation on an end stage liver disease from alcohol abuse. I would like to either meet up with you for that matter or if you can let me use some of your resources like books, any journal articles or end stage liver disease microscopic slides etc. I am hoping/praying if you can spare just some time out of your busy schedule for me. Thanks Dr. I will wait for your response.

Appreciate it,

Keya Patel
email: ***@****

[cuteus]

There are no doctors at this forum, this is a patient to patient online support group,  perhaps you can click on the contact us button and ask Med Help for a referral. good luck on your research.

[honey1616]

Hi...You said that you relapsed after tx in 92.  Did you go the whole 48 weeks that time or not make it to the end?  Also...do you feel if high viral load to begin with....You should extend tx and even if clearing at 12 weeks?  I am a 1, alts always have been normal, slim so wondering if the high viral load should be a reason for me to extend?  Thanks for any info...

[TnHepGuy_]

Back in 1992, tx protocol was 3 mil. units 3x/week for 6 months. I did about 3.5 months at full dose, then my white count tanked (no Neupogen back then) and they lowered my dosage to 2 mil. units 3x/week - and I ended up doing a total of 10 months. At that time, the going word was SVR of 20%, my GI felt it was probably closer to 15%. And looking back from today, it was closer to 10%. So my odds were lousy to begin with - and were doomed completely when the dosage was lowered.

To continue forward up to today - not long after I failed mono, my doc put me on Actigal in attempt to normalize my LFT's. That didn't work. Soon after that, I met an AIDS patient who had a host of information. I learned a ton from him - including about viruses and supplements. He told me about Silymarin, Alpha Lipoic Acid and N-Acetyl Cistene (among others) and after researching what I could find out, began taking them (and still do). Around 1997 I learned of ribavirn being in trial for Hep C and began to read up on it. After learning what I could, I spoke to my GI and considered getting it from an overseas supplier - since it wasn't available for Hep C patients in the US. But one nagging thought always stuck with me - the early AIDS patients who developed resistance after taking anti-virals. So I backed off doing it. And I sat tight again - until last year, when my alpha feta protein test (tumor marker) went out of the normal range for the first time. I was tested for the various cancers (liver, metastatic to the liver, testicular) and was negative, thank God - leaving the elevated AFP a most likely result of the Hep C itself. My viral load also rose 10 fold (and stayed there). I was bx'ed (grade 1/stage 1) and after discussing with my GI, made the decision to treat - based upon all the above, as well as my over-riding concern for what having this for 20 years has done to injure/compromise my immune system - and not knowing what having such a compromised immune system leaves me vulnerable to over time. Also, I had been experiencing increasing fatigue, pain, leg cramps, etc. - to the point where these symptoms were no longer intermittent - but now chronic.


I am stongly considering extended my tx based upon multiple factors - being a geno 1a, having a high viral load and being a previous non-responder. The <a href="http://www.natap.org/2004/EASL/easl_06.htm">Sanchez-Tapias study</a> is by far the strongest statement yet for extending for those with negative SVR predictors. Of course, I would need to remain undetectable through all the way through till week 48 (I'm on week 13 now), have to continue tolerating tx well and, perhaps toughest of all, convince my doc to go along with it - or find another who will.

The <a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=14999598">Drusano statistical study</a> suggests that for geno 1's to obtain a 90% chance of viral clearance, they need to go a full 36 weeks after reaching nondectable status. I only plan on being on this combo tx once - and plan on giving it my best shot - since my goal for being on tx in the first place is for viral eradication. If extending an extra 24 weeks will up my odds - and possibly tip the scales in my favor - and keep me from ever having to do this again - I will do it in a heartbeat.

[honey1616]

Now thats quite a story and thanks for sharing with all of us! I have copied so many links that my folder to go to dr now is a book LOL  You come up with some great stuff!  I'm like you in giving this my best shot...all the way and then I'm ready to get back to my life!  Sending postive vibes that you will finish your last treatment and svr!

[itsnotover]

Boy oh boy such a story to tell!!! It's great that you have the know how and stamina to have followed this thru making wise decisions.  My doctors agree going past the 48 weeks for 1's (if I ever could get to the clearing mark :)  My gut feeling agrees given the fact that sooo many relapse.  If anyone can you can do it!!!

Thanks again for taking the time to flag down Scott and for your links.

[TnHepGuy_]

Thank you for the very kind words - and for the encouragment, too!

I am in relatively good shape through my Hep C, am tolerating my current round of tx well and, am also now an EVR. Folks like you - and others who have much more advanced hepatic and/or extra-hepatic manifestations than me - and those who have had to battle much harder and further than I have - are the ones who I am most in awe of and continue to gain great inspiration from.

Thank you for sharing your story/struggle here with us.


TnHepGuy