hep c and cirrhosis

[SmokingCats]

Kind of hard to post all my questions but I just can not seem to find sriaght answers

21 days ago I thought I got food poisioning and throw up for 52 hours straight, after it subsided some, I went and had a bunch of blood work done, in these tests it showed a possible problem in my liver. On a hunch I had them do a Hepatitis test, it came back postive for Hep C. Each night after the eating (past the 52 hours) I would throw up about 6 hours later 17 days ago this became so bad that I check myself into the hospital. The did mri's,  ultarsound's, cat scans and a varity of test. It was detirmed I had gallstone and that my gallbladder had to go, they also confirmed my Hep C with a second test.
10 days ago I had surgery to remove my gallbladder, it was lapiscopic and went well, during this I had a liver biopsy done. To day I visited the surgeon and it appears my gallbladder problem is resolved I(he seems surprised since he told me I was a high risk) While talking with him i was abled to see some of the biopsy.

It said cirrhosis is well established but did not list a stage ( was hoping for early but I think this is second or third stage)

I do not drink nor have I for 12-15 years
I do not smoke for about a month (been wondering if this is pointless as I will not die of lung cancer)
I do not drink any caffine for about 2 weeks
I have established a low fat, low sodium diet on my own, but have no solid numbers on what I should use, My Total fat I been keeping at about 30g, my sodium at about 1500mg and my protein at about 55-70g (60 average)


I will see the liver doc on thursday, where I live we have 2 and if you **** them off, you got nada. This doctor is a difficult one who does not like questions and seems to dislike me (this could just be me)

I do not have a viral load result yet, I have no idea what all these abbrevations are that I see in other posts, I am sure I will find out.

I also lost my health insurance jan 3 of this year, but I do have good options for treatment of Hep c at least. (assisted)


Now my questions are fairly simple, I know alot of things can't be discussed untill i have more information, but the cirrhosis information is what I want to focus on.

"Well established" equals what stage?

I have found early and final stages, what are the other 2 stages called?

How long without transplant might I expect to live?

If I got a transplant, how long does it last (I know in many organ transplants it is about 5 years)

Most transplants require very expensive medicine to keep the body fromn rejecting the transplant and you must take them forever, is this the same for liver transplants?

Is there somewhere I can go (support groups?)to speak about all the problems and questions I might have and how to find the proper foods I can eat ( I been reading many lables and it is alot of work, so each new food discovery is like a treasure)

My favorite food has always been cheese, in fact cheese,mayo and white bread is my favorite thing to eat, from reading the lables i can find low salt cheese (swiss) but I have been unable to find any cheeder or american cheese  that is not really high in fat content (bread is a problem too) My question here is have any of you found a cheese product that you can actually eat while on low fat diet?


I could go on and on with questions but I dont want to strain the boards, if I could get this one question answered, this time whould be well spent. "How long without transplant might I expect to live?"


Thanks much in Advance


Cats

[newleaf09]

There are a couple of people on the forum using eltrombopag for low platelets with TX.  I never heard of it myself until a couple months ago.  Sure could have used it, since my low platelets kept me dose-reduced for much of TX.  One of the posters was, I think, in a trial using it, but the other may have been just having it added by the doctor.  It would be terrific if it were labeled for HCV treatment use, since that's the last major blood disorder related to TX that will cause them to reduce the dosage of the treatment meds.  Maybe the ones using it will see this post and weigh in.

[newleaf09]

Your numbers could be a lot worse.  Not good, but not horrible, either.  VL of 551K is pretty decent.  Your doctor is misinformed about 1b being the worst.  There were a few early studies that drew that conclusion but they've been disproved since then.  In fact, 1b's with low VL (and I think low VL for 1b's is defined as below 600,000) tend to clear early and stay clear.  Lots of 1b's on this particular forum have cleared the virus and kept clear (self included).  200,000 is definitely not cured.  Some PCR tests will list their lower limit of detection (meaning the test can't show if there are less than, say, 49) but it's been a long time since they used tests that could only be relied on down to 200,000. Not sure if your doc is up on the latest HCV info.  The best kind of doctor to treat HCV is a gastroenterologist specialized in liver disease, called a hepatologist.

There is a drug called Eltrombopag that is used to raise platelets.  It is not yet approved for use with HCV treatment (it is approved for other blood disorders) but they are working on that and your doctor could use it off-label for your treatment.  Ask him about the possibility of using it to start treatment.

[SmokingCats]

Bleh, liver doctor passed me off to anouther...

I did get some info, I have the worst kind of hep c, 1b, the most agressive of the bunch, and as an added bonus, my platelet count is to low to treat hep c, 66,0000 (should be 150k-440k). And even if my platelets was good, 1b has 5% chance of being trated with current medicines succussfully.

So I been told that hep c will finish my liver and then maybe i can get a transplant. He listed me as child pugh 2 early (he said it would have been 1 but the low platelet count made it 2) and  that I had 1-2 years to  live


So I asked if I had final stage as according to the child pugh deal,1-2 years is final stage,  he told me I was not close to final yet. I now question this doctors words. I have seen some ways to try and address platelet counts via diet,  but it is witch doctor stuff (papaya leaves and bitter gourd).


On a bright note my viral low seems rather low to me 551,000, with 200,000 being cured? (not sure if that is right word, remmission maybe is better?)

I got a bunch of reports and I am  not sure what they all are but I can spot the flags  at least

WBC 3.4 flagged  as low
MPV 13.0 flagged as high
ALT 82 flagged as high
AST 80 flagged as high
Bili direct 4.4 flagged as high
Bilirubin 5.5 flagged as high
A/G ratio .9 flagged as low
Albumin 3.0 flagged as  low


Now these  numbers are pre surgery numbers (they removed the gallbladder) and I get more blood work  next  week and expect  the bili and  bilirubin to  correct (maybe albumim too) as I think they are directly related  to the gallbladder issue.


Anyways at this point it is very discouraging and lloks like maybe eastern medicine is about all I got left. I do have some fairly well connected doctors  looking my reports over from out of town (family friends) for really good hospitals up  north (beth isreal, boston general, mayo clinc) so maybe they can offer a path/possible solution


Very hard day today


Cats

[SmokingCats]

O sorry I was not to clear maybe, after going online and reading a great deal,I became concerned about having ascites due to some swelling after surgery that was very unusual (in limited areas the raised 2 inches and was yellow) this happened wherer my leg joins my body the first day and in  a *cough* private region day 2 and 3. I corrected this by either lowering my total fat intake or by stop taking selenium and fish oil, or it stopped on my own and I am crazy;p

I put myself on a lowfat, low sodium diet because it seems from reading this is the easiest diet for the liver, my liver was still somewhat swollen after surgery (4-5days)


I see this liver doctor thursday and hope I can get some solid information or at least copies of the lab reports. I did take your link and made it a favorite, but it seems it requires a good deal of information that I do not have at this time.

One thing that did stand out, looks like on the best possible conditions (of which I doubt I have) the max life is 15-20 years, so at least I can begin to see where I might be, thanks for that. I would guess I am going to score in the second range, because once again it is the only one without a predefined number.....

I have been doing nothing but reading on my condition, everything from h202 to making your body alkaline, some things seem absurd, others might be plausable or at least they will not hurt you (although drinking apple cider vinger might premenently give me a sour face) to go with my sour disposition...


Cats

[HCA]

Good replies above.
The following link gives life expectancy.

http://www.fpnotebook.com/GI/Exam/ChldPghScr.htm

The key symptom of decompensation is ascites-swollen belly.
As you are on low sodium diet I suspect that this may be present but I am not sure.
Ask your doctor for your MELD score and come back and tell us.
It is not satisfactory that you feel your doctor does not like you and does not care to answer questions.
You need to be under the care of a specialist hepatologist and linked to a liver unit which can evaluate you for a transplant at the appropriate time.
Smoking increases you risk of primary liver cancer for which you already have increased suscepibility.

[Bill1954]

Mmm...cheese... :)

[newleaf09]

Bill gives a wonderful answer, as usual.  Your major concerns at this point are compensated (liver working) or decompensated (liver not working, terrible things beginning to happen).  The good news is that if you are still compensated, you can treat the HCV.  Since you don't drink and probably have few other things assaulting the liver, clearing the HCV (responsible for the damage) will make a dramatic difference.  It is also the optimum choice because even if your liver fails and you should need a transplant, you still need to clear the HCV so that it does not infect the transplanted liver.  It is possible to treat a decompensated patient for HCV (with immunotherapy, as for compensateds) but not many doctors wish to take on a patient who will require such close monitoring to keep going and it's an even more miserable experience than treating with a functioning liver (no picnic).  Such a shock for you, so sorry. Please do check out the janis & freinds site Bill listed.  It has been a major education tool for all of us.

As a fellow cheesehead, let me recommend the dry cheeses like asiago, parmesan and romano.  I'm not positive about their fat content but believe it is probably lower than all the moister cheeses.  

[Bill1954]

Hi there, sorry to hear of your problems. I’ll try to answer some of your questions here:

"Well established" equals what stage?”

Liver disease is generally staged as fibrosis 1, 2, 3 and 4; with four being cirrhosis. You’ll want to make certain that you understand the difference between fibrosis and cirrhosis; there is often confusion with these terms. If cirrhosis is present, it can be re-staged as CTP class A, B, and C; Child-class A is considered ‘compensated cirrhosis’. Compensated cirrhosis means that although the liver’s architecture has been altered, it continues to function as designed; it manufactures, synthesizes, and filters; Child B and C are decompensated disease; the liver no longer functions well, and cirrhotic stigmata are present; a qualified doctor would most likely be able to diagnose without blood tests or biopsy.

“How long without transplant might I expect to live?”

Again, it’ll depend entirely on what stage you’re in; even whwn compensated cirrhosis is present, a person can live very comfortably; and might not even be symptomatic. You might live 5 or ten years, perhaps much longer; it’s very difficult to predict mortality at this point.

“If I got a transplant, how long does it last (I know in many organ transplants it is about 5 years)”

There’s no ‘shelf life’ to a transplanted liver as far as I’m aware; others here more knowledgeable might weigh in with more on that subject.

“Most transplants require very expensive medicine to keep the body fromn rejecting the transplant and you must take them forever, is this the same for liver transplants?”

Yes; I believe you can count on some form of anti-rejection meds indefinitely; although many patents are able to dose reduce and in some cases eliminate ‘some’ of these meds.

“Is there somewhere I can go (support groups?)to speak about all the problems and questions I might have and how to find the proper foods I can eat ( I been reading many lables and it is alot of work, so each new food discovery is like a treasure)”

Ask for local support groups at your GI or hepatologists office, and also ask the local hospital for info. Unless you have decompensated liver disease, there really aren’t any specific dietary requirements; eat a reasonable diet. We can all benefit from eating healthy foods, but there is no diet that is specific for cirrhosis, as long as it’s still compensated.


I could go on and on with questions but I dont want to strainStrains the boards, if I could get this one question answered, this time whould be well spent. "How long without transplant might I expect to live?"

You’re going to benefit from reading through Janis and Friends, I think; I’ll link you to their section on cirrhosis, and you can take it from there:

http://janis7hepc.com/Cirrhosis.htm

Be sure to bookmark the home page for future reference. Welcome to the discussion group

Bill

[nygirl7]

See...someone responded before I even could.  I told you so!  :)

[nygirl7]

Cats

Plenty of people will come in and respond to you shortly.  I didn't have cirrhosis or a transplant so I am not the one to answer your questions (plus...those who have are much more knowledgable about all of it than I am obviously).

I did want to respond so that you knew somebody was listening.  Sometimes when there is not an immediate response people can worry about things like that - my first post I was sure noone would answer (but of  course they did).

This place saved my life.  My doctor would have answered any question I had only he  didn't really know that much about hep or it's treatment. I learned it all in here by asking question after question. Literally I knew more about it when I finished than he did (he admitted it).

So don't be afraid to ask.   I'm sure you are pretty scared right now but hang in there...try to stay calm and it will be alright.

You are lucky you know - you've lived a pretty liver healthy life for many years  now and that probably saved your life literally.  You found out about it all while you still could fight it. Some people don't get that chance. so at the end of the day you are doing OK.

Try to remember that.

Good luck!

[chuckles333]

http://www.medhelp.org/health_pages/Hepatitis/Common-Hepatitis-C-Acronyms/show/3?cid=64

Lists most of the Acronyms used on this site.
As for low fat cheese, I've found 4% cheddar and there's a (not so good) cheese substitute made of soy.
I believe that a liver transplant is meant to last a long while and that you will need to take anti-rejection drugs forever. I don't really know though I've not had one.
Why do you think you are exempt from fatal lung cancer?