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stage four liver disease

by lostone2006, Aug 04, 2006 12:00AM
HI MY MOM WAS DIAGNOSIS WITH LIVER DISEASE A YEAR OR SO BACK WILL SHE HAS BECAME ILL AGAIN AND SAW THE DR HE SAYS SHE IS IN STAGE 4 AND HER HEPATITISIS LEVEL IS VER HIGH WHAT DOES THAT MEAN
Member Comments (32)

by tulsatime, Aug 04, 2006 12:00AM
To: lostone
Hi I am so sorry you and your mom are having to go through this. There are no doctors here just people with hep c that are treating or waiting to be treated. And ones that have been through treatment. We have a lot of caring people on this forum and you and your mom can get a lot of help here. In answer to your question stage 4 means cirrhosis. High level means amount of virus in the blood. That means she need to see a good hepatoligist or gastro doctor. Has she ever treated for the hep c yet? If not there are medications available to kill the virus. If she gets the virus under control. She can live a very long life with cirrhosis, if she takes care of herself. No alcohol at all. Low salt and low protien diet. I have cirrhosis and a high viral load and I plan on living to be old and grey. I am starting treatment next weekend. Keep coming back and reading as much as you can. Here is a good place to answer some questions. Take care... Debi

by Mimi4141, Aug 05, 2006 12:00AM
To: lostone2006
My husband is stage 4 cirrhosis and had a high viral load.  I'm not an expert in this but from what we have learned the doctor looks at liver damage in stages and grades. Stage is the aount of scarring and the grade is the amount of inflamation (inflammation), both are bad. 4 is the highest you can go for both.  When you are at stage 4 you are considered to have cirrhosis of the liver, end stage liver disease.  That is a little word that can mean all kinds of things.  My husband was stage 4 grade 3, however, he is not haing any other problems.  Yellowing of eyes and skin, swelling, ascites, bleeding.  Hubby started started treatment 25 weeks ago with a 2 million viral load.  At 19 weeks he had �59� little suckers leaft.  We are waiting for his 24 blood results.  He just had another ultrasound of the liver, his liver is healing, and the ultrasound results showed improvement.  So, there is hope! As we saw it, he had to get rid of the virus because it was attacking his liver.  So he started treatment. If I were you, I would try to get your mom a good hepatologist and find out what he/she has to say.  The best thing you can do is learn about this disease and support her as much as you can.  Its not going to be easy for either of you, but knowledge is your best weapon.  I would start with the web site listed below.  This is what was told to me when I first came here, and it was vey very helpful. Good luck and keep coming back here because the people will give you information and supportive words.  I truely believe that the people here have saved my husband's life!

by luluone, Aug 02, 2007 04:35AM
To: http://janis7hepc.com/
i was just diagnosed after liver biopsy with stage 4 cirrohsis and hep c. i am waiting to get the treatment of pegylyn and rivarin for 3 mos. what does this prognosis look like and i also have genotype 1..

by motheroffour, Aug 02, 2007 07:25AM
In addition to Stage 4 there are "substages" that measure liver functionality.  If you have no signs of liver failure (jaundice, ascites, esophagal varices etc) you are considered "compensated".  You can live with a compensated liver.  As the liver begins to fail and the symptoms start appearing you are considered "decompensated".  My husband was graded as a "probable Stage 4" and a grade 3 and is completing his 48 weeks.  He has never displayed any symptoms of liver failure and his CT scan, ultrasound and his esophagus were "unremarkable" meaning there was nothing that they could see out of the ordinary, but his biopsy obviously spotted some bad damage. He certainly plans on living a long life and there is no reason he can't if he stays compensated.  You don't say if the "Hepatitis damage" was caused by Hep C.  "Hepatitis" could be caused by many, many things in addition to Hep C.  Find out what caused the Hepatitis.  "Her hepatitis is very high" is a confusing statement.  Anyone with liver damage caused by something specific needs to first stop if possible whatever it is that is causing the damage.   The liver is a resilient organ meaning if the damage is not too severe it can "fix itself" and if it can't fix itself it can go quite a while with only alittle bit of the liver functioning.  Go with your mother to her next appointment if she will let you.  Make sure the doctor explains to you in language you can understand what caused your mother's hepatitis, what condition does he/she think your mother is in compared to one year ago and what your mother should be doing to stabilize her liver or help to improve her situation... If she has Hep C come back and ask any questions you have and there are many here who can tell you their experiences.

by WaveRider, Aug 02, 2007 12:23PM
To: lostone
This will help explain the Hepatitis stages:

Stage 1 Hepatitis -- Inflammation only (hepatitis only)
Stage 2 Hepatitis -- Some scarring (fibrosis)
Stage 3 Hepatitis -- More scarring (more fibrosis)
Stage 4 Hepatitis -- LOTS of fibrosis (cirrhosis)

Once a person gets to Stage 4/Cirrhosis, there are three grades:

Grade A -- Compensated (the liver is doing all it should despite the damage; no apparent symptoms)
Grade B -- DecompensatING (the liver is beginning to not be able to do all its functions; starting to have symptoms)
Grade C -- DecompensatED (liver failure -- the liver cannot perform its own functions; lots of symptoms)

Boils down to:
1. Stage 1 = very little fibrosis
2. Stage 2 = a little more fibrosis
3. Stage 3 = bridging fibrosis
4. Stage 4 = cirrhosis  (Grade A cirrhosis)
5. Grade B cirrhosis
6. Grade C cirrhosis (ESLD)
(Complications like Ascites appear in Grade B cirrhosis).

by sfwandwow, Aug 02, 2007 10:43PM
To: all
Okay my viral load is 2.4 millionand my dr thinks my is being caused by being diabetic,where my body isnt getting normal insulin are pancreas makes and releases... I have biospy coming up real soon..Had eyes check today i have excellent vision.. going into research clinical trial...Iamlooking forward to allthis.. Cause GOD has blessed me allthe way around... In am i have to take test for glucose.. again, its always high...

by sfwandwow, Aug 02, 2007 10:54PM
To: motheroffour
wow my viralis 2.4 million and my dr said they think mine is caused by noy producing insulin for my own body thru the pancreas.. so they are getting me ready to treat that part of me.. then the hep C iam doing clinicalstudy trial... BUT GOD IS GOOD IN ALL WAYS!!! he can healus live for him..

by opeele, Sep 23, 2007 08:18PM
To: lostone
my father is 83 yrs old. He has stage 4 liver disease, kidney disease and esophagel cancer.  He has just completed radiation treatments for cancer.  He is doing well with the cancer, I need some advice, and how long can he live in this condition.

by Louise111, Feb 19, 2008 05:35PM
To: motheroffour
My husband is in a Rehab Facility, for a 30 day program.  He is doing well, had jaundice, but it's all but gone....Dr. at Rehab said he has Stage 4 Liver Disease and it is terminal.....they do liver panel test there....Bilirubin is down to 6.8, Platelettes are 68, and holding steady.  Is he really terminal.....these are not GI doctors!!!!  After Rehab, we have a GI appt......Last Aug he had an Ultrasound, CT Scan, MRI done on his liver and abdomen....Doc said, smaller lobe of liver is all cirrhosis, larger part of Liver is enlarged....no more drinking.....but he did, from Aug to end of Jan.......can he live a long while with Stage 4 Liver Disease if he doesn't drink anymore????   Please respond.
Louise

by Jeannie47, Mar 03, 2008 09:21AM
To: All
Is there any free help in the state of Ga for people that have been diganosied with stage 4 liver disease who need treatment and can not afford it
Jeannie

by patti1957, Mar 04, 2008 06:48AM
To: jeannie47
check with your county health dept. - i live in FL and found some very inexpensive, if not FREE healthcare thru my county, but you have to do the research.  i am waiting to hear from a drug manufacturer on FREE meds - so there may be options - i am stage 4 but waiting to tx for the hep c  - good luck !!!!

by one4mom, May 20, 2008 10:00AM
my mother just found out that she has stage 4 cirrhosis of the liver and stage 2 hepatitis c inactive. can anyone help me out and explain this a little to me? or give me advice on what shes got facing her?

one4mom

by Jan12242, May 20, 2008 11:06AM
To: one4mom
I'm so sorry for your mother's recent diagnosis.  I can only imagine what my own daughter thought when I was diagnosed with Hep C - a viral load of over 10.0 million and in Stage 4 cirrhosis....end stage.  I certainly panicked.  Luckily I was able to receive good medical treatment from a very good gastrointestinal physician at a veteran's hospital.  I began treatment of pegalated interferon and Ribivarin in January 2007.  That treatment lasted 48 weeks - December 2007.  In March of 2007 there was absolutely no hep C virus detectible in my blood.  I still had to complete the 48 weeks however...and it was a long haul.  I am now in remission with the hep C, and although I am in Stage 4 cirrhosis, I have no symptoms of liver disease elsewhere.  My liver enzymes are back to normal levels and although I still require a lot of sleep, that too is getting better.  The liver does not heal itself.  It is the only organ in the body that does not regenerate.  However, with proper diet, no alcohol, no drugs, and a good attitude, life goes on.  The experience taught me so much.  Life is precious.... and short.... we all know that....but don't give up and give your mom all the support and help you can.  She is going to need you.  Good luck to you.  I will be more than willing to answer any and all questions you may have.  Will keep you in my thoughts.  God Bless.

by Snowmane, Aug 10, 2008 09:39AM
To: The above
Correction above.  The liver is the ONLY organ that DOES regenerate.  They are also discovering that kidneys can as well.
I am stage 4 grade 4 decompensated.
Snowmane

by hepfoe, Aug 10, 2008 01:28PM
To: one4mom
I read your post of May 20 and found it encouraging.  I too have cirrhosis, compensated, with viral load of 13 million.  I am type 1a and afraid that it is too late for tx.  May I ask what is your genotype?

by Texas714, Aug 11, 2008 07:51AM
To: hepfoe
You should be encouraged.  I have Cirrhosis, and am just finishing tx.  Have you ask your doctor about treatment?  You should.  Your viral load is not anything to worry about really.  From what I understand it changes all the time.  Mine was 45 Ml before I started tx.  
I'd say go visit your doctor.  Tell him/her you are interested in tx.  I've been able to treat, so you most likely can as well.  
It's not time to throw the towel in!  I've done just fine with tx.  You really should speak with someone about it soon.
Good Luck to you whatever you decide to do.

by mykidsaremany, Aug 20, 2008 02:00PM
To: all
My son, age 48, has stage 4 cirrosis of the liver.  He does not want to take the interfuron because it makes him so very sick and he feels as though he is in a fog all the time.  The doctor says he has a 50% chance of living with the medication and a 20% chance without it.  He just came here to CA to visit us all from Georgia because he doesn't feel as though he has long to live.  He is raising 5 grandchildren (he and his wife), I want him to take the treatment but he says he can't work if he takes it and the kids need his income.  What do I tell him?  My heart is just breaking.  I just lost another son in April from testacular cancer and my brother in April from Kidney Cancer.  Please tell me what to say to my son.  Thank you

by Texas714, Aug 20, 2008 02:10PM
To: mykidsaremany
How long ago did he treat?  As I understand things, treatment today is not as bad as in the past.  
I have cirrhosis too.  I was able to do my treatment and not miss a day of work.  
If the kids need his income now they will need it later as well.  Who will take care of them when he's gone?  What good will that do the kids?  If he can't work...then maybe he could find some assistance to go on while he treats.
Good Luck to you and your son.

by mykidsaremany, Aug 20, 2008 03:04PM
To: Texas714
He last was treated in the spring and summer of 2007 but became so sick he told the doctor he couldn't take the medicine and still work.  His work is dangerous as he has to climb ladders, etc.  He calibrates tools.  The doctor who he sees now is a gastrointerologist and he wants to cut the interferon down to a small dose and work up to a full dose.  Is that a good idea?  

by Texas714, Aug 20, 2008 03:30PM
To: mykidsaremany
There are so many people here that can better answer your questions.
What you should really do is start a string/post of your own.
That way more people will see it and respond.  This is a pretty old post.
All I can tell you is I'd see a specialist.  And I'd be encouraged to have a doctor willing to work with me on treatment.  I think he needs treatment for sure if he's stage 4.
Like I said who will help the kids when he's gone.  If he flat can't work then maybe they could find some sort of assistance while he treats.
Good Luck to you... and try to start a new post....lot's of people with lots of good advise here.

by captain911, Nov 01, 2008 08:59AM
To: Lostone
I've gone thrue the treatment twice now. Once on a trial basis before it was  released to the public. Just interferon. 4yr later went on the treatment of interferon&peg. Cleared virus for 1 month. Been at stage 4 for over 5 years. Can the treatment be used more than twice or have i devepoped a immunity to a cure. Still feel rather good, tired and treating my self with milkthisthel. Any new option developed?

by littlelucy, Dec 16, 2008 11:35PM
if i go untreated for hep c reno type 4 sirrhosis stage 4 how long do u think i can live?

by gina47, Feb 20, 2009 06:48PM
To: captain911
ANYBODY EVER THINK OF TAKING HIGH DOSAGES OF VITAMIN C ?...I KNOW THAT A 24/7 VITAMIN C DRIP WAS GIVEN TO A PATIENT(my brother) WITH A BAD STAFF INFECTION AND HE RESPONDED GREAT!,  (ALL THE ANTI-BIOTICS DIDNT WORK). I THINK THE VITAMIN C CAN FLUSH OUT THE BODY, REGENERATE TISSUE, AND HELP IMMUNE.

by Hadassah777, Feb 28, 2009 02:55PM
peg againthe  if I can....Any one heard of this new study? My memory is getting really bad, and my energy level which was pretty good is starting to decline...I feel like my focus and concetration is off.....HELP

by zets, Mar 04, 2009 09:44PM
To: who ever
I have had hep c for over 20 years now I am 38years old I had a biopsy in 2004 and it was mild now its2009and I am always sick really sick I retain water in my abdomen only in my abdomen no where else not my ankles or legs I get sick headaches my eyes get swollen and puffy so much so it splits my skin and burses im not sure why that is happening is it a symptom of a sick liver. I feel dizzy a lot now, I have red raised pinpoint dots on my chest and they have started going down my arms kind of what like a diabetic has on his ankles but more spread apart I guess what I want to know what symptoms come with what stages

by jblack30, Apr 01, 2009 12:30AM
To: anyone
My mother was rushed to the ER today with an extreme amount of fluid around her heart. I was told she has cirrhosis of the liver and her liver is hard as a brick. I want to know can she make it out with treatment and a healthy diet. I also want to find out if this is truly stage 4 or not.  I really want my mom to come out of this so if you know, send me your answers. I want to find out all that I can so that I can help as much as I can.                          Thanks, J.B.

by merryBe, Apr 01, 2009 01:55AM
To: jblack
I'm sorry to hear about your mom. It's very hard news to take we know.

If she is "brick hard" then she is stage 4 or end stage (5) liver disease.

Stage 4 can and do treat but it is much harder, and not very successful.
Once the fibrosis of stage 3 has become rock hard scarred masses of stage 4 the damage is not reversible. The normal procedure is to put those well enough on a transplant waiting list. Whether she would qualify for a transplant depends on her whole health profile however, and only about half the people who need a new liver get one.

The immediate thing is to get the water out of her heart sac and abdomen and there are procedures to do this and make her more comfortable.
The gold standard for knowing the stage of disease is to do a needle biopsy. However, if her liver papates hard as a rock they are unlikely to suggest this as it can itself cause death. As the liver hardens and shuts down the internal liver pressure becomes higher than the surrounding blood pressure as the organ tries to force fewer cells to keep up with metabolism. The pressure can be 2-3 times that of the regular blood pressure. Therefore a stage 4 biopsy can lead to internal bleeding that cannot be stopped and for this reason in stage 4, needle biopsy is not wisdom, IMHO.
There are other scans that can be done that are non invasive, along with physical exam and labs the docs can be fairly accurate, especially in later stages.
Talk to the doctor about what would be the best scan.
How old is your mother and does she have other health issues?

mb

by shoepolish, May 06, 2009 08:17PM
In July I found out I have hep c after going to Dr. many times because of super tiredness, low grade fever, etc.. I had a liver biopsy done last got reslts today. Stage 1, grade III, don"t really understand what grade III means. I am genotype 1a, viral load 642,000. I will be starting treatment in a few weeks after ins. approves the RX. What can I expect to feel like?

by merryBe, May 07, 2009 05:13AM
To: shoepolish
this site has the best primer for learning about the disease:

http://www.janis7hepc.com/

after you read up on Viral Load, tests, biopsies treatments, bring us your questions.
I think that Janis can help you understand a lot of whats coming though, in a systematic way.

Good luck, and welcome to the forum, even though it's not fun to have to come here, it is good to get help and support understanding HCV.

mb

by Believe007, Nov 10, 2009 11:50AM
We were told yesterday, that my husband has stage 4 liver disease.  I have been reading all your postings and I do not understand about the Grade levels and the genotype.  He had a biopsy to confirm the stage four, he had ultra sound this morning to check the size of his liver, spleen and kidneys and will be having a EDG next Wednesday.  But the doctor did not mention grade level/genotype.  What does this mean?  Thank you for any input you may have.

by BJ1fish, Nov 10, 2009 01:15PM
To: captain911
You can treat more than twice. I treated 6 times. I would clear the virus but relapse after the treatment ended. I even extended my treatment to  72 weeks twice. Once with infergen instead of interferon. Med Help has a great site on hep. http://www.medhelp.org/forums/Hepatitis-C/show/75

by BJ1fish, Nov 10, 2009 01:16PM
Now i see this is a old post.
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