stages of cirrhosis

[hamie]

My fiance was diagnosed with Hep C last year and cirrhosis stage 4. We have no medical insurance and the doctor's he has seen have done nothing for him. They don't offer any treatments and don't answer questions. We are very frustrated. He sees a new doctor next week.

My question is: What are the stages of cirrhosis? At what stage will he need a transplant?

My real question is: how much time does he have left?

I am scared and frustrated. Any help you can offer would be deeply appreciated.

[Steve']

Sorry to hear your situation ... my advice to you is <b>definately</b> get a better doctor preferrably a dr that knows Hep-C ... He would quite possibly be suitable for Interferon + Ribavirin treatment .... I personaly know a woman who is 60 & has cirrosis she had geno 1b did 12 months of treatment & is now successfully cured of Hep-C, she's so happy. You are on a good site here hamie there is plenty of great people here that will offer you support, thats for sure ... good luck & maybe let us know on the forum here when he see's a decent dr....</font>
<br><hr><P><marquee direction="right"><Font face="Brush Script MT"size=+3<b>Steve</b></font></marquee><br>

[GwithHepC]

Hamie:

I just saw an excellent post on another message board that explains levels of cirrhosis.  The link is http://boards.health.msn.com/message.asp?message_id=5254829 (Can some one tell me how to create an actual hyperlink - do you just use regular html tags?)  I will also paste the information below because the person who posted this did such an excellent job:


When someone has hepatitis, and the doctor says that you're end stage (hepatitis)---------that's totally different than end stage cirrhosis.

Here's what I mean.

Hepatitis has four stages
(Stage 1, Stage 2, Stage 3, Stage 4).
The last stage of HEPATITIS (the 4th stage of hepatitis)......is cirrhosis.

THEN----Cirrhosis has three stages.
(Stage A, Stage B, Stage C.)

In other words-----You could look at it like this. Here's the order that the stages would go:

Stage 1 Hepatitis- is not cirrhosis

Stage 2 Hepatitis- is not cirrhosis

Stage 3 Hepatitis- is not cirrhosis yet

Stage 4 Hepatitis- is the beginning of cirrhosis

Stage A Cirrhosis- is compensated Cirrhosis (liver is still doing it's job)

Stage B Cirrhosis- is the start of decompensated cirrhosis ("decompensated" means that complications like ascites, encephalopathy, varices, are beginning to happen)

Stage C Cirrhosis- is decompensated, end stage cirrhosis

A person has to be at least Stage B or Stage C cirrhosis, to get "evaluated" for the liver transplant waiting list.

In other words------

Here's two very important things to keep in mind:

Hepatitis has 4 stages (stage 1, stage 2, stage 3, stage 4).......the 4th stage of hepatitis is "cirrhosis". Many people refer to stage 4 hepatitis as "end stage". (But you need to keep in mind that stage 4 hepatitis is just the BEGINNING of cirrhosis)

THEN

Cirrhosis has 3 stages (stage A, stage B, stage C)

stage A cirrhosis = compensated cirrhosis
stage B cirrhosis = beginning to decompensate
stage C cirrhosis = decompensated cirrhosis (end stage cirrhosis)


Stage A cirrhosis (compensated cirrhosis) means that the liver is still doing enough of it's job.....to keep you relatively well. No "complications" happening.

Stage B cirrhosis (beginning of decompensation) means that "complications" are beginning to appear. Examples of "complications" are ascites, or varices, or encephalopathy.

Stage C cirrhosis (decompensated cirrhosis) means that the liver is not able to do it's job......."complications" (ascites, varices, encephalopathy) are worsening.

Doctors use a CTP Scorecard to determine what stage of cirrhosis that a person is in. The CTP Score is based on 5 questions (and gives you a point value for each of your answers).
CTP scores range from 5 to 15.
A person must have at least a CTP score of 7 or higher, in order to get referred to a liver transplant center for an Evaluation.

The evaluation is a series of tests and interviews, to see if a person is a good candidate for transplant.

If a person passes their Evaluation, they are placed on the liver transplant waiting list.


Once a person is on the Waiting List......another scoring system is used (MELD score). The MELD Score is for donor liver allocation. (Used to see who gets the next available liver)

[mother of three]

Just thought I would drop in and say hi. Doing my no.3 today , feeling well,it's kinda wierd I notice myself looking forward to shot, like i'm on my way counting down ...yea! Also going to get my blood work, thats kinda exciting also. I am really happy I decided I started  my tx. it's not that bad, so far....and I just feel that I'm going to beat this evil dragon. I am geno type 1a , and I know the good Lord is right with me all the way .I hope every one is well today .I"M praying for all of us.       JILL

[lollymart]

Thank you so much for the information.  My husband will be starting Tx next week and we are both on overload learning everything we can to find out how to beat this.  

He is a 1a with 16 million viral load, ALT at 1096 and AST at 474.  His doctor said that he is a Stage 2 inflammation and Grade 3 fibrosis.  

Does this mean he is stage 2 or 3 regarding that chart you posted?  His doctor also said he noted scarring.  

Thank you,
Lori

[GwithHepC]

From the way I read the chart, and from my general understanding, it sounds like he is Stage 3, so he has considerable scarring, but he does not yet have cirrhosis; he is one step before cirrhosis.  Grade usually refers to amount of inflammation on a scale of 0 to 4, so he has moderate inflammation.  It seems to me like you are treating just in time so he doesn't progress to cirrhosis.  Hopefully the reports of fibrosis being reversable are true (maybe even cirrhosis), and your husband, and all of us, will beat this thing and our livers will heal themselves.  I wish you and your husband all the best with treatment!!

[lollymart]

Thank you G.  He's actually looking forward to starting Tx.  He's been a lurker here and reading everyone's posts and determined to slay the dragon.  He's usually a pretty pessimistic type person so I hope he rides this wave of enthusiasism till the end.  

But now that he's made up his mind he wants to start immediately.  I told him he should wait till after the holidays but...  Also, he doesn't know what he should tell our 14 year old son.  He thinks he got it from drug use about 35 years ago.  During a night of merriment, which he never did again.  But how do you tell a teenager???

Lori

[layla]

Once you make up your mind to start tx it's hard to wait. The anxiety is often worse than the actual start. It would be nice to wait until after the holidays but if that's going to make him too anxious it'll just be another problem. I couldn't wait to start then weanted to do a shot everyday. Many people just want to get it over with, the faster the better. I think I also got it experiencing with drugs as a teen but there are other ways that you can get this. Many in fact. I also was in the inocculatins lines in the Army when this was a issue and I've had surgery more than my share of times. I didn't tell my child I did heavy drugs I just explained the ways one could get it including as many ways as I could think of and said I just can't be sure exactly where it came from and there are many people who can't. I worried about it more that needed. There was never really any questions asked about that it was more questions if and when I will be ok. LL

[lollymart]

Thanks for the advice.  That's pretty smart.  Your right, I don't think our son will care how but when will Dad get better.  It's amazing how people want to "know" how you got it when you tell them.  Isn't it bad enough that you have it??  What does it matter.

I told my boss that my husband has HepC in case I need to run home or cover him in taking our son back and forth to school and that was the first thing he asked... "how did he get it?"  I should have said, "It doesn't matter.  He just has it."

Lori

[MajNeni]

Your husband is lucky to have you working through this with him. Since you're reading this board, you'll have a much better idea of the things he might be experiencing.
My thought is that if you tell your 14-year old the whole variety of ways in which HVC can be caught, it might give you a chance to point out that this is yet another reason not to fool around with drugs... without revealing your suspicions about where your husband contracted it.   Maj Neni

[hepconfused]

My mother has hepC the hospital she goes to she gets a new intern every 6 months.Recently she was told she is in the last stages of corrhosis.Last visit I ask if corrhosis turns in to cancer he seemed confused by the question and never did answer.Im not sure if he did understand me or he just didnt know. .....1) Any helpful tips on getting an answer 2) does anyone know the answer?

[copyman]

Of every 100 persons infected with HCV about:

55%-85% of persons may develop long-term infection

70 persons may develop chronic liver disease

5-20 persons may develop cirrhosis over a period of 20 to 30 years

1%-5% of persons may die from the consequences of long term infection (liver cancer or cirrhosis)

Hepatitis C is a leading indication for liver transplants.

so you see cancer only develops in a small %. by the way did you know that this thread was from 2003? it might be better for you to start a new post for more up to date info.

[beckyv102]

My husband was diagnosed with early cirrhosis - genotype 1 a.  He completed treatment last year and is SVR (which means cured).  He actually treated twice but didn't finish the first treatment.  The first time he didn't have prescription coverage and the drugs to treat hep c are very expensive.  I mention this because the drug companies have very generous plans where they will provide all your medicine for free.  We were afraid our income would be too high, but they had very lenient guidelines.  
If you go to a good hepatologist he could probably point you in the right direction.  By the way, I hope this new doctor deals with a lot of hep C patients.  Our first doctor was a gastroenterologist and I don't think he had a lot of experience with hep c patients and he ended up taking my husband off treatment for side effects that I have since learned are quite common.  He also never offered any treatment for any of the side effects.  If your fiance goes to a hepatologist he would probably get better treatment.  So, if you have any choice in the matter, I would choose a hepatologist if there are any in your area.  It's so worth it!

[JackABCD]

How he was diagnosed ? did a biopsy or a sort of non-invasive test (Fibro...) ?
There are some mistakes with the non-pervasive tests.

[Kalio1]

You are learning a lot fast! If you need assistance with the meds, both companies that make Interferon have patient assistance programs. One is called Commitment to Care (PegInteron) and the other, Pegassist ( from the makers of Pegasys) and the qualifications are quite generous and they supply both drugs once your doctor writes the scrip. If he is uninsured, it's likely he'd qualify.

Another point to the most excellent info. you were given by GWithHepC is keep in mind the grades and stages are not solid lines, you can have a portion of your liver more scarred than another, and it CAN heal.So it is possible to have areas of your liver that are past the tipping point, and likely won't regenerate in those areas but also possible to have other areas, even right next to severely scarred areas that are able to heal.  The more scarring there is, the less chance you have of it regenerating in that area. Lots of work is being done on remedies for liver scarring, it may well be some day in the future not so far off, we will be able to reduce that scarring via some now being studied medicines.
You can do a lot to help your liver by eating a VERY good diet, losing weight if you have extra, exercising regularly, no  alcohol, cigs or any other "bad for you" things ( like STRESS and overworking) As little refined sugar in the diet as possible.No saturated fats, trans fats. Whole grains, whole veggies, fish, etc. I augment my diet with a daily nutritional supplement that has really helped me feel better and supplies all your daily needs and then some, it is made entirely from foods.I use one called ALIVE that I get online cheap at vitacost, but you can buy any kind, there are lots of them out there. This one I like as it has no iron ( a no no for us) and has an incredible amount of valuable superfoods. Our damaged livers have a hard time doing all the metabolic jobs they are supposed to, the supplement can fill the gaps. I take mine in a smoothie.

I agree with you, it is rude to ask how you got it, people are ignorant (and rude) of this disease and the large numbers of people who have it. They make snap judgements out of ignorance ( I blame the govt. for lack of action and education)  Very few can be POSITIVE where they got it. Sure, if you have a past blood transfusion or IV drug use that is a likely source, I've read that as many as 30% of people who have this have no known history of the standard risk factors.
There is a lot of stigma surrounding HCV, so he might want to keep that in mind when deciding who to share it with.I don't care if people are ignorant and  make judgements, I try to use it as a way to educate them to the disease, but some have had repurcussions from being honest ( lost jobs or friends, etc) so bear that in mind. There is a lot of stigma around cirrhosis too for that matter! People often think you can only get cirrhosis from over drinking, but that is not true. Hep C is a major cause of cirrhosis all by itself ( as is NASH) however alcohol can escalate the replication of the virus, it is said drinking with Hep C is like "pouring gasoline on a fire" in terms of escalation. Sugar in foods or drink also "feeds" the virus.
Working on improving my daily nutrition to optimum, working on losing a few pounds and trying to exercise has helped empower me to fight this disease and stop progression if I can. My damage is similar to his. With his treatment and lifestyle adjustments, he can hold the line on progress of the disease and can reverse some damage in some cases so STAY POSITIVE.
He is lucky to have your support and encouragement in helping him to manage his disease.

[Kalio1]

Hmmm.. I just noticed Hamie's post is dated 2003..

[beckyv102]

2003??!!!!   I guess Harnie won't be reading this!  Hope it helps someone else.

[Becky D]

My name is Becky. I am 47 yrs old and am in remission from pancreatic cancer. I was diagnosed with hep c about 1 yr. ago. Underwent several major surgeries and can only assume thats where I got it. Really doesn't matter how you get it. Doesn't change the facts. Still there !!!!!!! Heven't been able to start inerferon due to unresolved issues with the Ca. GI doc afraid it would make matters worse. Internal doc didn't seem to think I was ready due to severe mental and emotional strain/stress. Don't really understand why. Did 26 rounds of combination chemo and pray eachday that this tx. wont be as bad. Honestly, I'm scared as hell. I have appt. on the 21st of Aug. and at that time we should be able to start tx. I'm single and live alone. Still on disability, thank God I wont have to deal with that but Its pretty scary dealing with this alone. HAve 3 kids. Grown with families of their own and don't want to bother them. They were troopers through this last scare and it was so hard on them to watch me deterirate. I know it can't be any worse than where I just came from but I so afraid of losing the quality of my life again. Just getting over short and long term chemo effects. Actually feel like I have a life again. I'm a fighter and my glass is always half-full but I'm pretty tierd. I don't see life as being measured by time only by quality. Don't get me wrong, I want to live as long as possible but if quality is gone then so is life. Atleast for me. I battle depression and severe anxiety and do the best I can with that. Does inerferon really make it worse. I know about hot flashes, cold chills, body aches, bone aches, N/V, weight loss, hair loss, fatigue, memory loss/chemo brain and being a big B just to name a few. What I don't know is how much of this will I revisit and to what extent ???? Don't know any details on labs. Didn't really want to know anymore than I was hep c pos. Couldn't deal with it. Now that I am in remission its time to deal with that. Wonder if GI doc drug his feet becuz he didn't think I would live thru the Ca and if I did, the question remains, How long ????? Personally, I don't think that its their decision. Its my life or death. It should be my choice. Have dealt with things of this sort in past with other medical issues. Was told, " Your terminal, what do you want us to do?" Well, pancreatic ca. doesn't have a great survival rate but I'm here where only 3 % survive. So I guess my question would be what happens on that stuff ? Physically and emotionally ???? And how do you prepare yourself to do something that scares the hell out of you ??? After onc. and internal doc. gave go green lite, I checked out. Thought I could run fast enough and far enough to make it go away. DIdn't work but it wasn't due to a lack of trying. LOL. Needless to say, I cancelled apt. reset appt, and am now facing 8/21/07 after 4 months of denial and anger. Sorry if this offends anyone, but honestly I am really pissed off. Can't figure out how I survived a ca that takes 97% of its victims only to find out that I now have to fight another biggy. Wow !!!!!!!  I really need someone to talk to as I don't and won't worry family and friends. Their not ready for this either. I have to make that appt. No more running. Have I done alot of damage by procrastinating ???? And yes, I did drink during that time. I'm not a drinker but it seemed to help me keep running without thinking about it. Not drinking now and know that I wont be drinking in the future. Have to cont. to fight. I refuse to die of liver dz when I survived pancreatic ca. Just doesn't seem right. Hope you guys can help me. Need to draw strength from people who are/have been there and done that. Just need a little reasurance both now, on the 21st and thru the tx. May God bless each of you and your families.. Remember, God said, " Call upon me and I will answer and show you great and mighty things." Thats what I'm talking about. Just need a little push here and there. Thanks for listening and a special thanks to all who reply. Thanks to those who responded to me when I first found this site. Don't thinks its the same forum but if it is hope to chat with you soon. Your in my prayers.. Thanks  Becky D