What is 'stage 4 - End Stage?'

My mother was diagnosed with Hepatitis C several years ago after a liver biopsy.  As best we can tell, she probably contracted it after being given a clotting factor in the 70's after she had severe bleeding after a miscarriage.  She does not like to talk about the disease, especially since I am her youngest daughter (I am 21) and was young when she was diagnosed.  I think she has just gotten into the habit of needing to feel she has to hide it from me.  Last year my mother underwent interfuron therapy for a full year.  Along the way she had several tests that showed no sign of the virus and we were optimistic that she would get better.  This weekend we had an argument and she told me that she had just found out she was "stage four, endstage" in the disease.  I don't know what that means.  I tried to do research on it but it is very confusing.  I don't know how sick she is or what to expect.  I remember that she drank (not heavily) when I was a child, but I know she quit around five years ago.  She has never been in the hospital for complications from Hepatitis C as far as I know, and the only symptom I have seen in her is fatigue (and adema? (not sure if I spelled that right) in her legs/ankles/feet when she was on the interfuron).  I really need to know what to expect with this.  My mother and I are not getting along right now because she is so stressed out and I want to work things out with her, but I don't want to pressure her.  But if she is really really sick I don't want to waste any time.

Any advice or information you can offer would be very helpful.

Thanks.

[concerned001]

Also, I should mention that my mother is AB- (I'm pretty sure that's it) and my sister said that means it would be hard for her to get a transplant.  Is that right?  My sister and are both + (I'm A+) and no one in our family has the same blood type as my mother.

[oldhippiechick67]

How nice of you to do some research to try to find answers about your Mom's condition.  You came to a good place.  There are lots of folks here with knowledge and experience that will answer your post.  I can direct you to www.janis7hepc.com  and that will have links that explain end stage liver disease (ESLD).  If she took interferon for a year then she probably, hopefully reversed some of the damage to her liver.  I find you to be concerned and willing to learn about your mom's health status, and you are right, if she is fairly ill and worrying about having a terminal illness, possible liver transplant or her having a rare blood type making a liver match difficult can make a person WAY WAY Stressed Out! I would advise you to ask her or write a note to her telling her how you feel, how you want to talk with her about it, and want to be there for her should she ever need it.  There are some folks who have ESLD and are doing fine, I have read their stories.  Does your mom still have edema in her ankles?  How is her belly?  is it getting rounded (ascites) with fluid build up?  They are two of the signs of ESLD, plus some mental changes, and yellowing of the skin and eyeballs.  You could tell her about this sight and that we have found friends and fellow "heppers" here who can advise us, share joys and sorrows, get support and sometimes a laugh!  This has been my favorite place since I was diagnosed with it in June.  I have learned a lot! my disease isnt quite so scarey any more and I have people to talk with that understand very well what I am going through.  You should try to find out if she is still "SVR" which means the virus is gone (but not the damage) or if it is back.  Some folks take treatment with interferon 2 or more times to kill off the virus.  Some docs dont believe in it.  Anyways, I have rattled on long enuf!  Keep checking back here cuz people will be posting answers to your question tonite and tomorrow.  Your mom is lucky to have a daughter who cares as much as you do.  Best of luck and hoping you two can open up communication before it is too late, not to scare you, she may be around for 10-20-30 years, I dont know, but at least try to learn more & talk!  OHC

[ral]

Boy that is quite a story. You are truly blessed.

Bob

[new-sojourn]

I got hep c July 12, 1979 from a blood transfusion during an emergency c-section to save my son's life.

I was mis-dx for yrs.  Not until 9-12-01 after I landed in ICU w/complete liver failure was I given a blood test for hep c 2 wks later.

I did 24wks of peginfro-riba, cl@4wks.  I was in a study to see if it was worth treating ESLD for the VIRUS since before then, it was considered hopeless, why bother since you're gonna die anyway.

Well, I am one yr post tx still ESLD & SVR.  Also, I'm really healthy, emotionally stable, physically active. 2yrs ago tonight, I was suppose to be dead, if I had made it that far.  1 yr ago, I was packing for Mexico.  March I was in Holland for the tulip season.  This year, I'm planning a month in March in Holland and Africa.

I'm still ESLD b/thru extemely careful living to avoid as much as possible any further liver deamage,  I'm doing just fine.

Statistacally, I should be dead b/I think I have a while.  I pasted over when my liver failed and I hemmoraged from the esphogus, and came back.  I cherish each day w/no fear of death.

Get your mom to read some of the stories.  Ignorance breeds fear.  Knowledge brings freedom.

[ral]

Hi you came to the right place there are a lot of highly educated people on this site that know much more than I. But I will say that if she is at stage-4 she is at cirrhosis. From what I understand people can live quite a number years with cirrhosis. So it is not an automatic death sentence. They also retreat non-responders if that is what happened her. You must try to get as much information as you can about the disease and how it progresses.

Also your Mother's anger is probably caused by depression caused by the disease. It changes your whole body chemistry and affects your emotions quite a bit. Try not to take anything she says or does personel.

Please  come back there are a lot of people who will direct you toward the correct actions to take.

It is great that you want to help her. There are many brave people here that have to handle this disease alone.

I am lucky I have my wife and 2 grown children and my grandson with me and it is a big help. Your Mother is very lucky to have you.

God Bless
Bob

[oldhippiechick67]

I LOVED synopsis of your ordeal, I basically cut and pasted it on your link on my webpage, hope that is okay! I would like Mikesimon and jonihs, Willing, Susan400 and Indiana, etc ETC, the ones with unusual medical histories or treatment more than once to print a paragraph +,here so I can cut and paste it to their names on my mini board webpage.  THANKS in advance to any of you sweet ppl who respond to my request!!  OHC/Auggieaz

[willing]

sorry - forgot about your blood group question. I don't have any direct experience with liver transplant, but I believe blood group AB actually has the shortest time on the waiting list (see table 23 in this <a href="http://www.osotc.org/st_wait.htm">summary</a>, also <a href="http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11271175&dopt=Abstract">see</a>). Since those in group AB carry  both the A and B alleles they presumably have access to a wider donor pool.

[willing]

Hi - here is  a <a href="http://www.medhelp.org/forums/hepatitis/messages/30195a.html">response</a>; to a similar question posted on this forum a while back. Liver damage is caused by buildup of scar tissue ("fibrosis"). The amount of fibrosis is usually determined by a liver biopsy and is graded in different "stages". There are a number of different scoring systems. In a commonly used one stage 4 corresponds to "cirrhosis", the most advanced stage. Even at the stage of cirrhosis there is a progression: early stages are "compensated" - later stages are "decompensated". The most advanced stages are described as "end stage liver disease". However, as noted in the above respose, these are general labels and don't tell you much about the specific complications your mother is facing.
Your mother is very lucky to have your suport and this is an important time to be there for her. As Bob/ral pointed out, severe mood changes and depression are probably associated with the disease and you'll have to push past them. Contacting her GI and getting more information about the status of her cirrhosis is  probably the most important next step.

[GreatBird]

<a href="http://seattletimes.nwsource.com/html/healthscience/2001769624_transplant19.html">Here</a> should be a link to the article New Sojurn mentioned. (If not, go to www.seattletimes.com and its right there--at least for today). It did have very old information about the tx options available at this time, and it didn't do hepC much of a service perpetuating that misconception. However, the rest of the article was truly excellent.

I truly think that not enough people with liver problems change their diets and exposure to toxins. The man who wrote the article doesn't indicate that he's done that in any way. I think New Sojurn is right-on about that. If one's liver is having trouble, why make it any worse? The current American diet is not at all liver-friendly, and the amount of chemicals that man has created in the last 100 years is a challenge to the outer environment and, I think, our inner environments as well. But off that soap box for now...

[new-sojourn]

I could not beleive my eyes when I opened the Sunday Seattle Times today.  The front page story is about a man w/hep c awaiting a liver transplant!  Its an ongoing saga, ending w/death or transplant.

Well, this puts hep c in WA in an ongoing spotlite for some time to come.  Altho, I found many errors in the 1st paragraph or so, I think any public airing of the issues surrounding hep c is wonderful.

I might add, I was no angel, b/we literally decided on life, not death, determined what had to be changed in our lives and changed it-overnite.  My example turned several others around w/in weeks.  I don't care what others do, I say "Live and let liver."

[jonihs]

I am a recovering alcoholic, now, and assumed that my symptoms were hang-over and some liver damage.Nothing serious(denial) Appropriately, my liver failed on my 45th b-day. I assume I got HepC from past IV drug use. Thought I was real careful(HIV) It was 3 days til I went to the Dr(week-end),so I was in pretty bad shape. Ascites, they drained 3 1/2 liters the first time,2 1/2 liters the second and my kidneys were also failing. I was lucky tho, slight varacies, no blood loss.After 7 days in ICU(most I don't remember. (Morphine every 2 hours), but my husband of 1 yr., my children, and my sisters, 2 brothers, were all there. Other family also. The Dr.told me I had a choice. He could keep me comfy and let me go, or I could change my life and fight (5%) chance. I looked at my husband and family and said I'll fight. I went to Alc. tx. changed my life, my diet , found faith,and found out I had Hep C. My original G.I. said no tx. because of cirrhosis. I found out on this forum(thank you Mike) that I might be able to tx. I'm a 2b, my liver has gotten no worse,so my chances look better everyday. My marriage is wonderful, my children(grown) and families are praying daily, so my new journey begins.   Love and Bless you all. Joni P.S. I also have ESLD. It won't stop me from enjoying life. Each Day Is A Gift From God!!!

[jonihs]

I think that Dr.s are starting to use that c word now, let's hope they soon all do.  Joni

[Lill]

Your comments here are all so inspirational.  I never get over how positive everyone is on this site.  It matters not how any of us contracted this nasty little bug.  What matters is the fight.

Concerned, I hope that you and your siblings have been tested for hepatitis c.  There is a small risk to you since you were born after your mother was infected.

Perhaps your mother was under the impression that treatment would cure her.  It does not cure but studies that have been ongoing for many years are demonstrating that even in patients with cirrhosis, life may be prolonged because of treatment.

I hope with your guidance, your mother may come to visit this bulletin board.  If she chooses not to, I hope that you will continue to visit for education and support.lil

[Lill]

Oops! Slip of the keyboard coupled with incomplete thoughts.  I believe treatment does cure hepatitis c.  What I meant to say more succinctly is that it does not cure cirrhosis.  Where was I when I wrote that?  Can't blame brain fog.lil