Stage 4 Hep C Grade 3 liver damage?

[Ryansmom17]

Hello everyone I am new here. I have been reading it for sometime now, so I decided to join. I just received a call from the nurse regarding my liver biopsy and some lab work I had 10 days ago.  I am a 37 yr old female and I have had Hep C for 20 yrs due to a HUGE mistake I made as a young woman to try IV drugs and shared a needle with my BF. So I have been living with the fact that I did this to myself for yrs. I was in secondary liver failure, it will be 2 yrs in April. I have also been clean from drugs since then too. It was a miracle that I even awoke from a hepatic coma, so I feel that I have the good Lord really caring for me. Well long story short, I finally got on medicaid after fighting for almost 2 yrs, and awaiting a liver biopsy and other tests. I am scared right now because of course the nurse gave me the results on the phone, but was not sure what Grade 3 means, as far as my liver damage. I am also in stage 4 of Hep C. The Dr wants to do 2 more blood draws for something else and then see me asap following the lab. So here I am sitting here wondering and waiting, while I have no clue what these diagnoses mean? I see from all of the searches I have done that stage 5 is basically the END stages and also mean cirrhosis. If anyone here has already been thru what I have, and can share some info with me I will be grateful! BTW I was having all of these tests to prep for the interferon txs.........Thank You and God Bless

[robinh1960]

Hi
I heard you say you had the virus for over 35 years.  Curious as to what your diet and exercise regimens are?  Water intake?

Thank you
Robin

[TY1957]

THANK YOU SOOOOOOOOOOOO MUCH!!!! I FELT THE SAME WAY AND SAID NO : ) I'VE BEEN HEALED AND I KNOW IT!!! I had people say and saw how they look now since they been on that "treatment" and my God they look bad and look like they are going to die.  It made them worse.
Thank you for confirmation! I'm a praying woman and God has did many great things.  No HIV shot many drugs behind people that die from AIDS, went to the eye dr thought my eyes was getting worse.  Come to find out they got better LOLOL the list goes on and then I get this report - NO WAY
then what kept me from doing the treatment was the doctor kept talking about my insurance and I'm trying to find out if I have cancer, what stage I have and so on.  He kept talking about if my insurance will cover the treatments.  I say Thank you to the dr as well, because if he wasn't so cold I think I wouldn't done it.

[pooh55811]

Welcome to the forum.

I am sorry to hear that your daughter is so ill. It must be very difficult for you.

This is an old thread (2008). Many may not read it. You will get better responses and more responses if you start a new thread and entitle it something like, "Hepatic Encephalopathy." To start a new thread, go to the right hand side near the top of the page and press Post a Question (orange bar). Then put a title for your thread and post your questions.

It will help if you can give as much information as possible when you post. People can give better responses if they know more details.

*Does your daughter have Hepatitis C?
*If she has Hepatitis C, has she ever been treated for it to get rid of it? If so, what happened?
*Is she seen by a Hepatologist at a large medical facility which is affiliated with a transplant center.  (If not, she should be.)
*How long has she had decompensated liver disease (the liver is unable to do its normal functions)?
*Does she have other symptoms such as ascites (abdominal fluid), swollen feet and legs, esophageal varices, bleeding problems, etc.
*Is she on a liver transplant list?

If you know her lab results, that would also help if you listed the results.

There are some very knowledgeable people on this forum and  a few who know a lot about cirrhosis. So if you start a new thread, I am sure some of them will respond.

There are several members on this forum who have cirrhosis. Some are treating for Hep C. Some have had transplants. Some are waiting for transplants. Some have treated for Hep C and are now cured. We also have some members with decompensated liver disease.

While I cannot answer your questions I know there are people on the forum who can help you and answer your questions.

[teamspirit]

I am new to this site but follow it often.  My 37 year old daughter has cirrhosis and hepatic encehalopathy.  Just 4 months ago she was hospitalized for an encehalopic episode.  It was her 1st episode.  She lives in an assisted living facility which is not a very good one but does take her Medicaid and Medicare.  She is also on disability.  She has hopes of getting well enough to move into he own apartment with home health visiting her daily.  Have you known or has anyone known someone with this terrible disease?  I try so hard to be upbeat around her but it has been so hard.  Please reply.......Thanks
Debbi

[Ryansmom17]

I have made a very long list of questions to ask my Dr ( GI ) tomorrow. I am very anxious, but want to get al the info I can in this appt. My medicaid HMO only allows me one visit per month. Well I do not know if this will change due to the recent findings of damage, or if It can be fought? So for the evening before I go to bed I am going to keep checking.........
Does anyone have any last minute advice, or questions not discussed here that I can add to my Question list? Im nervous, but would like to get all the answers I can. I do NOT want to have to wait another month to ask more questions. I have had alot of labs, about 12 viles taken maybe more............So, I know she basically has ALL the results she needs to know where to begin...........The last viral load I had done was a yr ago, so I don't know if she ordered a new one, but can it change that much in a yr to have to have it done again?
Thanks again all for getting me thru this very long week........I am feel much more peace knowing no matter what, I have a place I feel comfortable to come to when I start tx-ing........
Much Peace and Love
Jenn

[anita42]

Bill, amen too that. We've ALL made mistakes, and she should TRY too do what took myself some training, and take her finger off the button for the butt kick'n machine and use that energy and aim it at keeping herself alive, happy, and healthy.
There's only so many ways this disease is transmitted, so in one way or another we all share or understand much of what other's are saying and/or are going through, but for anyone too ever cast judgement on someone's mistakes is wrong, knowone has the right too do that but the big guy, upstairs.
I wish Ryansmom17 all the very best, and from what i've read, she's doing her best too do the right things NOW and that's what counts. We live and learn and along the way if we make mistakes, learn from them and move on.
Everyone have a wonderful holiday.
Anita42 Michigan

[IAmTheWalrus]

Good point on the rescue drugs. They could be an important factor in successful treatment.

Waiting for new treatments is a ggod thing, as long as you have time to wait. If you are at Stage 4 on the Metavir scale, you might not want to wait. Better drugs are supposed to be out by 20011 but you may not be wise to wait that long. On the other hand, if you are 4 on a different scale, the outlook could be extremely different. Find out what scale is used on your biopsy and discuss it with your doctor. Also find out the genotype of your virus. This is the single MOST important predictor of success in treatment. The odds of success for genotype 2 or 3 is very good (80 to 90%). Genotype 1, not so much (50%).

I hope your doctor is a hepatologist or at least a GI. I think this situation would overwhelm a GP and requires the specialized knowledge of a hepatologist.

NonABC makes a good statement about the AD drugs. Depression is the leading cause for patients being taken off of interferon therapy. My advice also is do not wait until you are overwhelmed to get them, Many, if not most patients on TX suffer some symptoms of depression. If you have had it before, it is probably more important to be vigilant. A psych evaluation is in order if your have a previous history of depression.

I also echo MerryBe's statement about being wary of people pushing herbal remedies. So far, the only proven treatments involve interferon. Even most of the trial drugs are used in combination with interferon.

Best luck to you and your health. Be grateful for the support you get from your mother and son and do your best. Go easy on yourself. Blame is not necessary or at all helpful, especially the self blame. You are trying now, and that is the important thing.

Brent

[justme53]

Just for starters, I would ask your Dr. to go over all the results of your bx and bloodwork and explain the findings. I'm not sure if you posted your Genotype yet, but this is one thing you need to know. Your VL (viral load) if you're going to treat and being cirrhotic, asking if it's compensated or decompensated.

Once you've gone over the results, find out what kind of treatment options you have, as well as what "rescue drugs" would be available and when they would be used.

Ask for copies of your labwork and keep them in a folder for future reference. Keep a calendar in there as well to keep track of all your appointments and contact numbers.

Just a start and I'm sure others will chime in as well.

Deep breaths!   Pam

[Ryansmom17]

Ok so now that this new week is coming, and all the craziness my brain caused me since my call from the nurse last Thursday..........I am starting to make a list o questions I have for my Dr when I see her this week. I would appreciate any input from those of you that have been thru what I am just beginning. If there are any important questions I should ask that I do not know of, please feel free to fill me in.
Thanks so much
Jenn

[Ryansmom17]

I do so far agree with nonabc a lot for the most because I am very ill with other illnesses that I had for yrs, and have known I have had for yrs. The Lupus test was negative, well at least many years back. I do suffer from RA and my Rheumatoid profile is extremely high. for me the RA tx is not an option. My Rheumatologists just sees me 2 times a year to follow my progress/deterioration. My GI Dr is a very thorough Dr. She treated me in the hospital 2 yrs ago with secondary liver failure I was in due to all the tylenol that I overdosed on. I did not have ins, so when I got out of the hospital I followed up with her, but was not much she could do. I could not even afford lab work, better yet a biopsy. So I finally was approved for state medicaid about 7 mos ago, and luckily she was on my HMO she already knew my history, and knew where I had left off last. Basically the hospital only had to keep me until I was stable enough to send home and then everything else was my responsibility. It was like yes we do understand that you are probably going to die, burt we stabilize you, we need the bed so go home and come back if and when you go back into liver failure. So, yes she did remember who I was, what my situation was when I came back to see her, and was actually very happy to see me clean and sober and doing much better then when she last had seen me. She listens to everything I ask, and dies not rush me or treat me any different. I have had other Drs treat me different because I have Hep C and they basically label me junkie and do not treat me as a human being, and act as if I do not deserve to be treated the same. The only thing I do not like with my Dr is I think she tries to cushion things for me? I think because of my previous depression and OD she does not want to scare me or overwhelm me? The last appt I have she ordered major labs, there was like 15-20 different lab tests on there checked off,  and she ordered the biopsy........It just seems that she acted very non chelant when obviously there was a reason for her to be ordering all of these tests. The only thing I had found out before that was my RA viral load, and my Hep C viral load, which seems much lower then I have read many on here. BUT that test is also over a yr old. So I do not know if that makes any difference at all?
Then the nurse phone call and the note they wrote on my lab sheet I got in the mail sounds so serious, like it all should have been done last week! I am goign for the labs morrow am, and going to see her Tuesday. Maybe Wed but I am going to be very pushy about getting fit in-between appts. As far as the Skleradrerma, yes I do show signs of having that disease, and being my RA virus is so progressed, it is a serious possibility. I know she is not my rheumatologists, but I think that was one of the labs she ordered. Being that with that disease it greatly effects the liver. It makes it hard, mummifies it. Since I am already fibrosis or fibrotic whatever it is called? The biopsy showed that along with a ll the fatty stuff? With having so many auto immune diseases and living in chronic pain and being so ill most of the time. I do think that if I am still able for tx, I have an awful lot of questions before I decide to take it! My life is far from a beautiful rose garden right now. My garden has lost the petals and is all thorns ( ha ha I just made that up lol ) WOW! I really did not see all of these replies last time I looked and I am so grateful to have found such a caring group of ppl. It is nice to hear everyones different feeling and opinions because I know I have so,me big decisions 2 make next week.........and I will keep you updated. Knowing me I will probably be a so confused and indecisive next week. I battle with so many different illnesses on a daily basis, but never felt like I had to make life or death choices! I was in great denial for many many yrs with this Hep C. I did nto take care of myself, and even when I had ins I sometimes didn't even tell Drs I had it. I was so sick of being judged by them. I just denied it myself. Until I just kind of put it in the back of my mind that it was just there somewhere..........Until that serious OD I wasn't even dealing with it at all! I guess everything does happen for a reason ha?

[merryBe]

I know you must be really scared right now, but wait until you talk to your doctor, most all the symptoms you mentioned sound like HCV, and it's routine to test for the other types, and to vaccinate a person against them before beginning treatment.

As far as the RA/lupus/scleroderma goes, you really need an answer there as to which you have. You may have suffered nerve damage from the accident that is effecting your stomach, but that doesn't mean you have scleroderma.  Having RA would make tx difficult, but with lupus Interferon is one of the treatments for it, so it could be that tx. would help both of those.
Many in here were diagnosed with fibromyalgia before their HCV was detected.
I think it is the effect of the HCV, which also shuts down the pituitary, making insulin resistance occur, which makes the tissues sore and mimic true fibromyalgia.
Anyway, I also was in a bad accident, and it affected my spine and pituitary, which I got tested for, and now take shots for.
Ask the doc to do an IGF-1 blood test on you to see if you are making enough pituitary hormone. When you feel up to it, I'll send you a thread on that subject. Everyone who has HCV has a much higher rate of pituitary dysfunction than the normal poppulace, as do people who have suffered neck and head injuries.

mb

[cathy77]

Just to clarify hepc was dx Cathy77

[cathy77]

In 2002 i was very ill slighly jaundised and put on a huge amount of weight, I had been drinking quite heavy,my urine and stools were uncontrollable and my eyesight very blurred and was continually vomitting, looked like red coffee grouts. I went to the hospital and was dx fatty liver my liver was blanked out with it, I was put on a diet pending checks for virus's, drinking stopped right away, later tests revealed cleared hep abdc mean while weight fell from me and I started to feel great except for a tooth infection I did a course for tx  2007 with a RA factor tolerated it badly as my tooth problem got worse and affected my production of saliva which is known as a sx this was not it went autoimmune and I also relapsed. Some time after I had a multiple biopsy, even with good blood results it revealed 6/6 cirrhosis no fat in the liver, all I know is that at some time my liver must have recovered to some extent, so now I am on watchful waiting with the most painful m mouth condition and aches and pains   Cathy77

[nonABC]

Hi Jenn - keep hanging in there.   Sounds like you've been through a lot and have overcome a lot.  

Most everyone I know who's had the virus over 20 years has some if not all of the symptoms you've spoken about  (night sweats, unexplained rashes, hives, fatigue, insomnia, depression, etc.)   It's tough coming to terms with those "symptoms" but at least you know it's not "all in your head :)"   If you have a good relationship with your doctor, that's worth a lot, especially since Medicaid will limit your ability to find another doctor.  

If your GI doc is referring you for a psych eval  (that's a good thing)   try to get set up as a patient being seen regularly by a psych doc.   If you haven't already, apply for SSDI   (regardless if you treat or don't treat.)     I still say think twice before you decide that waiting is not an option for you.   The current treatment is not very effective and has some serious "down" sides to it  (including making you sicker.)   Granted, there are those who treat and clear, but it's been my experience that I've seen too many with stage 3 / 4 who - after they attempted treatment - not only relapsed within a few months' time but felt a lot sicker (and it's not in their head or from "not living the right kind of lifestyle";  it's simply because the treatment is very harsh on the body and takes a toll.)

Some research results were published on "maintenance" therapy recently - you might find it interesting   (it's not very encouraging, but nonetheless I think you should know about it and discuss with your doctor what these results might mean for you if decide to treat now  (in other words, what long-term plan does your doc have in mind for you with respect to tackling the Hep C virus if you don't respond to treatment.)

"The results were clear; maintenance therapy did not stop liver disease from progressing.

In addition, researchers were startled by the rate of progression of liver disease. After four years, 30 percent of the patients in both the treatment and control groups had developed liver failure, liver cancer, or had died. Among those with milder cirrhosis, 10 to 12 percent developed severe liver disease, also unexpected.

"Hepatitis patients in these circumstances got very ill over the course of four years, surprisingly so," said Di Bisceglie. "The lesson we learned is that once chronic hepatitis C gets to the stage of advanced fibrosis, patients can decline rapidly."

As doctors look to the future, their hope rests on new drugs that are currently in clinical trials."

Here's the link.......

http://www.sciencedaily.com/releases/2008/12/081203184403.htm

The above information (in my opinion)  is something for you to consider and to discuss with your doctor(s).  

Best of luck to you.    

[merryBe]

there are many believers in here, and we all know what you are going through..

I had an awesome female doctor too...that's why I got to stage 4 without being diagnosed....so was too smart for her own good...and now I, we pay the price. Maybe awesome ain't the right word here. Ignoring high liver enyzmes for years isn't a sign of a competant GP.

However, as you said...a reason for you being here....I'm hoping the practice will learn from me, because they sure have had to eat crow when I correctly diagnosed several things they refused to think were there...

and what I learn really early on is to just forgive the yoyo's because it takes way too much energy to stay angry with someone, especially when you might be seeing them in eternity...it's just not worth the effort when the goal is to say postive, have faith, and do your best to rage against the dying of the light.

I hope to God my awesome GP will start treating other women like they are sick when they are, and not think they are hypocondriacs if they do their own research...actually....I've had male doctors that were less dismissive....

rule 1 when dealing with docs....do they LISTEN to you.

rule 2. do they remeber anything about your case from visit to visit (mine couldn't even remember I had thyroid disease after treating me for 15 yrs on my last visit)

rule 3 do they understand test results and take the time to make sure you do as well

rule 4 are they receptive to quality research you bring to support a case for changes in venue or SOC.

rule 5, you don't have to LIKE your doctor or they you, just as long as the person really doesn't keep abreast of your case and do their job...(like the show House...who cares if the guy''s a jerk if he gets the job done....I've had a warm and fuzzy Cameron, and she almost killed me...I'll take a Gregory House (Hugh LAurie) anyday..

mb

[Ryansmom17]

Thanks so much for all of the advice, opinions and clarifying some unknown medical terminology. I was raised in medicine and worked in it, but as far as liver terminology all greek to me. I just want to make clear a couple of things that is why I am struggling with decisions, 1) I am completely disabled without pain meds, I mean I am bed ridden for the most! I have sever RA, but because of the liver I cant do the shots for the RA. I have had that for over 10 years too. I have 2 Drs that think the Hep C caused it, but I have 8 ppl in my family with either RA, Lupus, or skleradrerma which killed my Grandmother, and I am also being tested for right now too. They are all rheumatic diseases. I go with the 2 Drs that say it is in my genes. I wont even go into all of the accidents I have had, but the last one I was riding and got hit by a truck, So I refuse to give up my pain meds and go back 2 being in bed in agony. Im depressed enough battling so many serious illnesses at 37, and I have been pretty bad for the last 10 yrs, but it was pain that was majority of the problems. I have chronic pancreatitus now and live on stomach enzymes to eat. I did have an endoscopy last year and my upper stomach is paralyzed, hence why they are testing me for skleradrerma it mummifies you and paralyzes all major organs stomach, heart, liver, kidneys, and so on.......I took care of my Grandmother along with hospice and watched her just die from everything failing and on oxygen cuz her lungs were paralyzed too.
I thank you all because I am so overwhelmed right now. I was holding my 15 yr old son crying my eyes out earlier. I am so scared right now. I am on MS conitn and it is time released so Doc told me that it at least goes into my body slowly, wanted to put me on Oxys but medicaid wont pay for them. My BP is outrageously high. I think the liver functions and biopsy may have explained some of that? All of my BP meds had to be doubled. I am sweating horrible smelling sweat in my sleep, when I sleep. Does anyone else have chronic insomnia? I was told that is a side effect of Hep C also. Oh and to top it all off the Dr is running more tests that have to do with Hep A and B, she had told me that sometimes after having it for so long you develop other strains of Hep, and also I was never tested for them and I was an IV drug user, that was over 10 yrs ago, but still something had to have shown up in my blood work because she tested me for A B C D and now something about a Hep A and B titer test is what is ordered? The nurse was very nice and was just reading me the results of the biopsy, I haven't spoken to the Dr about it yet. That is how I came by this forum, I was searching for what stage 4 Grade 3 meant online.......I am very grateful I found you all here because altho I am overwhelmed with the info. I am grateful to know others have been thru or know what I am feeling and going thru. I am also very very agitated way more then usual? I learned yrs ago like the insomnia, itchiness, sweats, and irritation is common for Hep C? I already was in liver failure almost 2 yrs ago due to a huge OD because I was so depressed I really didn't want to live in all the pain I lived in back then. Now I am happy and have changed my life and my spirituality so much and now I find this news out. My GI Dr also was ordering a psych eval for me if I am going to be treated because I hear it causes depression and suicidal tendencies and well she met me in the hospital in liver failure due to depression and an OD! I am babbling but my mind is just so stressed right now, I am sorry. Honestly all 3 Drs that were treating me in the hospital when in liver failure said there was no scientific reasons for me to be alive, and with my beliefs I feel I had some higher interventions there cuz I was GONE! and ever since then I changed my whole life and attitude around and wanted to live. I am happier then I have ever been in my life, and now I feel I was just offered a death sentence. Like we are all going to die, but I feel I was told my time is not too very far away. I got the feeling that I am not going to be able to be treated now from the things the nurse was round about saying on the phone because you know they aren't really supposed to say much. The Dr is supposed to see you & explain. resultys are not supposed to be given by a nurse on the phone, but I was asking questions and she was real nice, but seemed to be trying to go around in circles with the answers in a nice kind of way. I do agree with nonabc, I have seen people go thru the tx and I am seriousley considering whether or not I want too? I am not making any decisions until I speak with the Dr and get the full complete results and all the info I can from the Dr. I must have made it sound like my Dr is bad?? I have an awesome female Dr and for being on medicaid I consider myself very lucky, she is very thorough, which with medicaid you can sometimes die waiting for an appt! lol So PHEW I just went off there. Im sure that someone understands the unknown and only having part answers, so my mind is going everywhere. This is going to be a long week! I thank all of you for answering and explaining and just being supportive. If you want to plz add me as a friend too = )))
God Bless and Much Peace
Jenn

[merryBe]

well Jen, nonABC makes one good point, it is true that stage 4 has less chance of successfully clearing the virus. This is because many have to stop tx. The tx (treatment) itself being too hard on the liver at that stage.

However, 2 things nonABC is leaving out of the equation:

1. stage 1 thru 5 is only one method of risk assesment and diagnosis, there are other methods, and scores that take into account many more factors, and have scales going up into the 20's. Meaning you may be stage 4 on the 5 tops scale, but you might only be a 16 or less on some other ways of measurement. Ask your doctor to access you by another scoring method for further clarification. In other words, there are early and late stage 4's, and you cannot assume you are either without much more info.
If you'd like to post the doctor's notes on your biopsy, perhaps some of us can give you more feedback. The main thing is plenty have treated successfully, and without trying we know what lies ahead.

2. That's the other thing ABC isn't mentioning, is if you truly are at stage 4, and your biopsy was done by someone competant and is not off by a stage, then that means you really are playing russian roulette waiting for better drugs. The closest drug to being released that promises shorter more tolerable treatment timetables is Teleprevir, and it is still 2-3 years away. Originally folks thought it would be out by 06, then 08 was a big hope...now it looks like it might not arrive until 2011, although 2010 was "for sure" a few months ago. The doctors don't know, nor does ABC know when the new drugs will arrive.
Testing takes years and millions upon millions before any new drug is released in this country.  So the bottom line is waiting could mean you will be at end stage when the drugs arrive, and then you definitely won't be treatable.

Most in here will agree with me on this, in this forum at least, there is reason to wait if you are stage 1 or 2...but beyond that, and especially at stage 4, waiting gives an almost certain outcome, unless you become a candidate for a transplant.
the transplant criteria are fairly strict in that you must be alcohol free for a certain length of time, and you must not be too sick to survive the transplant. It takes time, sometimes a year to get on a transplant list, and even then you have at best a 50% chance of getting one...and in many locals, and depending on your situation and health particulars it can be much lower.  At least with treatment you have a 50% chance of clearing the virus and saving whats left of the liver, which could be enough to last you for 20 or more years if you take care of it.

So you have to weigh all this into the equation. The other thought is something called live donor transplants, from a family member...the person to talk to about this is Mikesimon on the Transplant forum in Medhelp. He can school and direct you towards understanding your option best there.

But please, beware of those telling you that herbs etc can cure you, or that tretment will kill you. The standard of care (SOC) right now, which is Interferon/ribavirin combined has success rates of 50-90% depending on your genotype and other health issues.
90% is great news for many, and 80% isn't bad either...but even if your odds of successfully treating are only 50%...50% of something is worth more than 100% of nothing...which at this point is what ABC is suggesting.

I would like this to telling someone who needs a quadruple bypass to just wait for a roto- rooter drug. They been looking for umpteen years for such a drug, and still haven't found one that can successfully reverse complete fat packed arteries. If you would tell someone to wait 2 or 3 years who needs a quadruple bypass....then tell yourself it's ok to wait 2 or 3 years to treat.  It may be that someone who was unsuccessful with treatment might not want you to try...but to me, we are here to help save our own lives, and the lives of others, and sometimes you just have to break a few eggs to make those omelets (take some risks).  No one in here will tell you treatment is easy, but 95% will tell you that you are going to have to be willing to take some sork of risk on here to recoup your health.
Hopefully your young age will help you to endure tx. Some folks have had permanent side effect from tx, but it most cases these are the older and or those who already had serious health and/or autoimmune issues. Even having all that I still risked tx at stage 4, and though it's been no picnic doing nothing to even try to preserve my life and health to me would have been the heigth of ignorance.
wishing you well.

Merrybe

[nonABC]

Hi Jenn - best of luck to you in whatever lies ahead for you now that you know you acquire Hep C so many years ago.   Always remember - pencils come with erasers because people make mistakes  :)   (hmph - attempt at levity, eh?)   Gotta have it when dealin' with what needs erasing!     You're gonna be fine regardless of your past mistakes!  

From reading your story I gather you've had this virus for 20 years  (could be better news than not - i.e., acquired at an early age.)  

http://www.annals.org/cgi/content/full/132/2/105-a

"Serious liver problems may not develop very frequently over the years as a result of hepatitis C infection acquired at a young age. Liver problems do, however, appear to be detectable more commonly over time in persons who have hepatitis C than in those who do not."

I have a reason to believe the above.  

I'm going to give my advice to you which is based solely on my experience - personal and from knowing many friends who have been through treatment in the past 5 years, in their 40's / 50's,  and who are NOT doing well at all  (FROM the treatment in my honest opinion and theirs, too.)   Some treated for 42 weeks, others at 72 weeks, others on "maintenance."   Many of them are now just a few years away from death, and it was the TREATMENT   (not the virus)  that took their butts down.     They were "warriors."   They did all the right things, did the injections, the pills, didn't miss a day, did the Procrit, the Neupogen, ........... blah blah blah (pardon my sarcasm, but the thoughts of all this PRO TREATMENT makes me ill)  

So - I'm going to tell you to NOT treat and to tell that nurse at the GI's office who scared you to go straight to Hell or wherever.   For one thing - you are STAGE 4 according to them, right?   That means that your chances of responding to the treatment for Hep C are slim to NONE!)    You think you're living in hell now just feeling the GUILT of what you did so many years ago??   Wait'll you trust some "eager beaver"  GI doc to "TREAT"!  

Tell the doc and his nurse you would like to WAIT until the NEWER drugs are approved.  The other medical conditions you are dealing with will be magnified 20 fold if you attempt to treat this virus.  

Percocets have Tylenol in them - get off of them and go strictly for the Oxy's if you HAVE to have pain management.    

Tell that GI doctor who's so eager to treat you for the Hep C - "thanks, but no thanks."

Just my honest - straight up.    Best of luck.  I've had this virus for over 35 years; I'm almost 50 yrs old.  I've been near "end stage" since 2002.  I split oak for a living.  

Be well.

[merryBe]

hi and welcome to the forum, scary news to be sure but take some heart in that you can learn how to help your body overcome all this in this forum.

3 things real quickly:

1. Your biopsy could be off by a grade or stage, meaning you could be only stage 3.
     Even if stage 4, there is still hope that tx can reduce inflammation and clear the virus, leaving you enough liver to live many more years on. You must be proactive about learning and tx and life style changes however.
2. You will need to make changes in pain meds. If you got diability, then maybe you can cut back your pain meds. I have a spinal injury, and am not on disability, but I have been able to cut back from 8 to 1 pain pill a day....I just can't move around and do much, but it is better for my liver right now. Absolutely tylenol in a no-no. Opiods do add to liver issues, but sometimes are the only pain killer strong enough to do any good.
I have my doctor give me 5 mg. 1 oxycodone(w/out tylenol) which I cut in half and use one per day.  This is one tenth what they had me on for the spinal cord, but I'm convinced part of my fibrosis progression was Rx related since I didn't drink,

3. You will need to get all your test ducks in a row, and I would recommend you get an upper endoscopy to see if your blood pressure and liver disease has led to any bulging veins. It's something to keep an eye on with HBP.

the reason you may not be jaudiced is as I said above, your biopsy may be off, and also, this disease has very few symptoms for many years....which is why many never get diagnosed until late stage. The only symptoms I had for years were fatigue and sweats, and they kept attributing everything to female stuff or whatnots...never tested me
for HCV even though liver enzymes were high. This happens a lot.

anyway, just take it slow, go to Janis, and then, do searches in here for particular subjects that you want more info on.
And take it slow, it can be overwhemlming at first.
You can PM, private message me if you need to talk, or cry, or ask something.
You'll find many in here to be very supportive, which will be very important going forward.

PS. the liver entirely replaces itself every year and a half, so all but the worst scarring can be overcome and replaced with healthy liver tissue. It's the only organ in the body with this fast of a turn around, and this much recouperative power, so this is why it may not be too late for you to treat at all, you could treat and recover quite nicely, but from now on you must take your health seriously, and learn to care for your liver especially.
take care, and welcome to the board.
mb

[Ryansmom17]

I have another question. Im not sure if this is how I am supposed to do it by adding to my
original question, but with out having to explain  everything all over again..........I was wondering if I am in such late stages of Hep C and possible have cirrhosis, why am I not jaundice? and also is there anyone else on here that is on a lot of meds? I have many other illnesses and a lot of serious injuries. I take a lot of meds a day. They are all supposedly as liver friendly as can be and no tylenol or ibuprofen. I am BP meds, stomach meds, pain meds, and muscle relaxers. I take all of this everyday! Without my pain meds, I am bed ridden and I refuse to live like that. well the other meds I cant eat without, and of course BP meds or I get stroke level BP! So I guess that was 2 more questions.........Thx for the input Pam
Peace and Love all
Jenn

[justme53]

I had to smile at your name....I was called "Mitch's Mom" for years.

I'm in a similar situation as you...recent biopsy revealed Grade 3 Stage 4 - compensated cirrhosis. Blood tests they will probably order are a serum marker called an AFP (alpha fetoprotein) as well as some to check clotting factors (platelets, INR), albumin, kidney function tests, thyroid function tests, perhaps iron/ferratin levels just to name a few. Most of the standard blood work, like CBC, liver function tests were done before my BX, and the ones that came after were used to determine (grade) my level of cirrhosis, and, in my case, as a baseline for starting treament.

Take a deep breath and know that treating those of us with cirrhosis has come a long way from the gloom and doom scenario of the past. Read and learn as much as you can from posts here in MH or the one that Bill mentioned...that's a great place to start out especially when you're newly diagnosed. Just learning the lingo can be overwhelming at first!!! Write down questions as they come up, cuz they'll be alot of them and a notebook comes in darn handy!!

Keep us posted on how things go after the labs..........Pam

[Ryansmom17]

Thanks so much for the link and the info Bill. I was in liver failure due to an OD and the pills I took were pain killer with tylenol in them. At that point in my lie I really was so very depressed and wanted to die. Well, I didn't die, BUT I sure added to my liver damage. The amount of tylenol in my system was off the charts ( alt ). My ammonia levels were so high I was  in and out of consciousness and hallucinating horribly! Well, I have turned my life around, but am dealing with the consequences. I also have many other illnesses and it is a tricky situation because of the meds I am, that to take what I cant take, what will kill me? On top of the Hep C , developed chronic pancreatitus which is very painful too. Thanks so much for your kind words Bill, and I will be sure to keep you posted after I see my Dr...........Thanks Hand God Bless
Jenn

[Bill1954]

Hi, and welcome.

Try not to beat yourself up over how you got this; many of us are in the same boat, and there’s little to be gained by looking back other than to prevent ourselves from repeating the same mistakes.

There are different indices used by pathologists to label liver disease. The one used most frequently in the US is the Metavir scale; I assume this is what your biopsy results are referring to.

Grade refers to the current degree of inflammation, while stage describes the amount of scaring that has already occurred.

If I am interpreting your report correctly, stage 3 indicates aggressive inflammation, and stage 4 suggests cirrhosis. Did you say that you had previously been in hepatic coma?

It sounds as though there may be some confusion between you and your doctor; while hepatic coma can certainly occur with stage 4 cirrhosis, I have my doubts that your doc would allow you to undergo treatment with decompensated disease.

A good layperson’s resource for HCV is:

  http://janis7hepc.com/

Click on any subject of interesting the right-hand sidebar; for instance, this will give you some info on biopsy results:

http://janis7hepc.com/biopsy.htm

Good luck with your follow up appointment with the doc, and let us know how things go.

Take care—

Bill