Hi Billy, loved yr photos :)
How long ago was your Liver Transplant? Also, are you Treating right now, or waiting to be in a Clinical Trial for post-transplants?
I took Selenium and Alpha Lipoic Acid for a the last three years before I Treated, and it didn't help, my platelets began to slide down and my AST and ALT elevated to ten times higher then when I didn't take them.
The fluid isn't just fromt he Hep C virus, the fluid is an indication that your liver isn't filtering the fluid properly (because of the scarring/fibrosis that occurs with cirrhosis) so the fluid is ending up other places. This fluid can easily cause infection, because it isn't supposed to be sitting there. So if you start running a fever, that may be a sign of infection, so go immediately to the doctor if that happens.
You will need to Treat your Hep C right away. The Hep C scars the liver much quicker, then the first time, pre-transplant.
Your main goal/objective right now is to focus on getting rid of your Hep C, and Sofosbuvir will be available possibly by mid-December. If you are already Treating, forgive my ignorance.
Once the virus is gone, (SVR) then you can still live many years, even with cirrhosis. Do you take pills for the fluid retention? Good luck

I'm waiting to get on a trial. Yeah I figured the liver was probably starting to scar because I haven't had fluid for years since before my liver transplant. They had to do the TIPPS procedure back then. It's only been 14 months since I had a transplant can't understand how the hep c virus has effected my new liver so fast. If I do get treated for the virus, I guess I will still have to go get the fluid drained for the rest of my life. This is so sad. Yes I just started taking pills every other day for the fluid retention.

Hey Billy! What's with these NEGATIVE VIBES MAN!!!

LET GO AND LET GOD MY FRIEND!!!

First off, have the doctors confirmed that your new liver has advanced to cirrhosis already??? If not, then STOP PROJECTING THESE NEGATIVE WAVES IN YOUR HEAD MAN!!! IT WILL NOT DO YOU ANY GOOD TO WORRY ABOUT SOMETHING THAT YOU'RE NOT SURE OF!!! TRUST ME! I've been there - Done that...

This is just my opinion as well as the opinion of many Hep docs I have communicated with over the years so take it for what it's worth.

The Selenium and Alpha Lipoic Acid is good for HEALTHY (KEY WORD HERE!!!) individuals or folks that haven't yet started to have symptoms of some degree of liver damage yet...

However, I strongly do not recommend these supplements to folks who are experiencing some form of actual liver damage no matter the level or degree of damage/disease because it puts too much stress on a liver that's already working in overdrive trying to repair itself and this only adds to whatever impediment that's affecting their livers... And as post transplant survivors, we must be especially diligent in making sure that we first check with the transplant folks to see if these supplements will be of any help or make the situation worse off and all of the Hep docs have basically told me the same... So I would stop taking them at least to see if the Ascites and other symptoms/complications improve afterwards.

Some folks may not agree with me and that's okay yet I hope they understand that my suggestion is only specifically targeted towards folks with advanced liver disease of one form or another and for post liver transplant patients also.

Your doctor may recommend the appropriate supplements depending on what your blood work shows that you may be deficient in certain elements like Iron, magnesium, vitamin D, etc. These are medically supervised recommendations that should be followed by the patients in order to definitely improve their conditions/blood work. A really good multi-vitamin does help.
Ask your Doctor first! I'm out! Hang in there Buddy!

Respectfully,
Hank

Henry, I gotta say that your words about those of us who already HAVE liver disease/damage taking a bunch of supplements makes sense. It's something I've been thinking about for a while - but the way you put it, it was clear to me. Really, why force our livers to process any more than they have to? At one point I was taking SO much stuff - like 20+ supplements a day - yes, a few of this and a few of that, but dang, they wouldn't even fit in a large plastic pill box thingy. My "intuition" was saying, "WHAT are you doing?"

My hepatologists have recommended only Vit D3 if I don't get enough from food (which I don't). One recommended Selenium and Folic Acid though - during TREATMENT. Oh, I have had two of these guys suggest Milk Thistle, and I'll keep taking that. But the hepatologist I see now really poohed poohed the idea of any supplements (except D3) - I had all the bottles with me, and he rolled his eyes and shook his head, muttering, "waste of money." Told me "anything that says something about being 'good for the liver' I discard immediately."

--- so anyway, I'm glad you wrote that about supplements. It "feels" right to me, and hey, our docs know about ALA and such - and I think at least some of them would promote it - or another "liver supplement" if they thought it MIGHT help. Oh, my doctor prescribes potassium for me because I was low in that. You covered all this very well IMO - why tax our livers anymore when they are already stressed trying to constantly repair themselves.

It will be a relief to trashcan so many bottles of what is most likely "snakeoil" - as least for me. You would not BELIEVE some of the supplements I've spent a lot of $$$ on - crazy stuff that I'd read about online and think, "gotta have that." Well, no, I gotta have some common sense is what I gotta have (and treatment soon, I hope - gotta keep that hope alive).

Those are both positive changes and in the past the ammonia numbers were used as primary marker for Hepatic Encephalopathy (HE) However, these days the ammonia numbers aren't used 0nly in order to diagnose for HE... Instead a system of overt symptoms are measured via a check list and combining that data with elevated ammonia levels will indicate the presence of HE or not... So raised ammonia level alone is not the sole indicator for someone to have HE...

Within this .pdf link is a list that is called an HE Symptoms Tracker and it basically is a checklist that's used by more and more Hep & GI Doctors currently:

http://cdn.salix.com/xifaxan550/assets/pdf/he-symptom-tracker.pdf

I hope this helps you out.... Btw, WELCOME TO THE GROUP!!! ;>)

Respectfully,
Henry

Hey Billy!

Do you know that having ascites for the rest of your life is not necessarily going to happen especially if you clear the virus via the trial... because once the liver is no longer under attack, your liver will regenerate so long as you maintain yourself so that the conditions in your body are optimal to facilitate the slow but sure healing process...

Remember that this is a temporary condition that will eventually become non-existent after reach SVR and can only come back if you injure the liver again or have a relapse which may or may not happen with the new Interferon free drugs that are soon to be out in the market, so please don't get so blue over this temporary suffering that must tolerate at the present time...

What happened to me does not mean that it's guaranteed to happen to or to Marilyn also because we're all different and yet at the same time very similar which makes it all the more important to understand that we all do not go through all of the same experiences of symptoms that would mislead us into thinking of: "Well if this happened to Henry, then it's gotta happen to me also!" because that isn't always the result by far...

So hang in there and keep your chin up because once your liver has been rescued from the virus and you maintain SVR, then your liver will eventually start to regenerate and the nasty symptoms of which you currently barely tolerate will no longer be present and your quality of life will indeed improve to the level where you will feel comfortable due to the lack of these symptoms and you will be
eventually okay.

Respectfully,
Henry

Thanks Henry for that up lifting message. I pray that I will become SRV. and I pray I will be accepted in the trials as well. I don't even have the money I need to get to Dallas next week for the appointment but I know God will send the money some how. Gas is expensive and I don't have a small car I have a truck a V8 so gas will cost me to get there and back.

Billy, what day is your screening in Dallas? I'll be praying for you. I'm supposed to get a call by the end of this month to set up an appointment in Dallas in regard to the Gilead trial. I pray we both get into these trials and that they work for us.
Didn't you have a liver biopsy recently that showed either phase 1 or 2 fibrosis? Of course, the fibrosis is scarring, but you are probably not at cirrhosis yet. I have fluid too, as you know, and I don't have cirrhosis yet either. Keeping the salt intake way down helps keep the fluid down. Been thinking a bout you and Cyndi. Marilyn

Yes Marilyn, My last Biopsy as in May and it showed fibrosis 1-2 but I am scheduled for another one this Monday morning with Dr. Galati. I pray that it still shows !-2 and has not moved to 2-3 yet. I'm going to Dallas next Wednesday for my appointment, I pray they let me in the study. I know it will be hard for me to get the money I need to stay there but I'm praying that God will provide.