Is this a new forum

With all the people  that are cirrhotic and are treating with the new triple therapies I hope the this forum becomes active to discuss their experiences. It's really tough living with a question mark...Whether on the newest drugs and waiting for therapeutic success or waiting to see what will manifest as the hepatitis C virus picnics on your liver! d

[rpooo]

It has been very difficult living with cirrhosis. I know there are many other people that feel the same as us. I was diagnosed in March of 2010 and since then have spent time every day reading and learning as much as I can. This has really helped me live my life more comfortable. I'm very greatful to MedHelp for starting our new community. I think we will be very successful in making this group everything a support group should be,

MedHelps description I think just about covers it:

Cirrhosis is the end result of chronic liver damage caused by chronic liver diseases. The purpose of the community is to share support and information with Cirrhosis of the Liver patients and their loved ones. Topics in the community include: causes, clinical trials, complications, family issues, living with Cirrhosis of the Liver, prognosis, research, surgery, treatments.

Randy

[col135]

Im currently now awaiting funding for 48 weeks of tx im in the u.k.This funding has to be authorised by my local health authority,ive had the standard tx for my hep c geno type 1 rib/peginterferon and was a totall null responder that was at my local hospital and they can no longer help me.Yesterday had my first consultation at barts hospital london and saw a specialist viral heptolagist it looks like if im accepted for the funding they would be using telaprivir tx on me rather than bioceprivir the telaprivir tx would be 12 weeks of rib/peginterferon and the telaprivir first and then a further 36 weeks making the tx 48 weeks in total.Hoping my low platelets and white cell count can be managed accordingly during tx and with all the side effects you can get im still desperate to stay the course.But first need to be accepted for the funding to paid to finance the full 48 weeks of tx,then hopefully my cirrhosis/scarring damage can be slowed down a little,interesting that you have to eat high fat meals apparently they help with the systemic exposure to the telaprivir so im told and this all helps the tx.Shall post again if recieve some good news im keeping fingers crossed.All The Best To Anybody With Hepatitis Problems Col.

[yodennis]

I have been on the triple treatment for nearly 10 months now (I finished the Incivek 12 week course months ago). I finish up July 20th. I was also previously a null responder to Interferon and Interferon/Ribo and have thrombocytopenia (and some varices)...I cleared the virus about 3 weeks into the triple tx. and have remained undetectable so so far I'm in a terrific position. As the SVR chances are said to be just 14% for previous null responders with cirrhosis I am hoping these stats will change as a wider sample of cirrhotics treat..I won't lie: The Incivek 12 weeks was mega-draining because of the anemia (I had to stop the Incivek at 9 weeks because of the rash) but I continued to work and even get to the gym. Obviously I have No regrets about having the fortitude to give it my best: 48 weeks here I come! My best. d

[Dee1956]

Hey there, congratulations on the early UND!
I really admire the fact that you continued working.  I "might" have been able to after the first 13 weeks however before that, there was no way I could have done it.  My doc says I had such a hard time on tx because I had cirrhosis.  His thinking is that the more damage the worse the tx.  I am not sure if that is true though I have seen people here on the triple that did not have as many problems.  It has been 4 months since I finished the triple threat with Incivek.  Every day is better with some steps back a long the way.   I hope, as they learn more, the tx will get easier for those behind us.  The doctors need to learn about the sx and what works for them
I am wishing you the best and I am glad to see this forum, it will take a little bit for people to realize it is here.  I think it is a great idea

[can-do-man]

"With all the people  that are cirrhotic and are treating with the new triple therapies I hope the this forum becomes active to discuss their experiences."

I don't understand, is this a new forum for Hep-C??? And why???

[Emily_MHModerator]

It is a forum for anyone, with hep C or another cause for their cirrhosis.  If members with hep C want to continue to post in hep C, they can, or if they'd like to post here, they can do that, too.

:)

Emily

[orphanedhawk]

I understand this community is for those with cirrhosis or who wish to discuss cirrhosis.
No matter what the underlying cause, those with cirrhosis have many of the same concerns.

[frijole]

I am glad to see this new forum and also hope it becomes active.  I was shocked when I got my last biopsy in 2011 and it showed grade 3-4, stage 3 & 4.  My cirrhosis is due to hep C too.  So I have compensated cirrhosis and hope to keep it compensated or reversed.  I am on week 42 of treatment with Boceprevir (Victrelis).

Yodennis -- didn't realize we were neck - in-neck.  My end date -- last pills -- is July 26.  Glad to know I am in such good company.  Glad to see Can-do, OH, dee, and other familiar faces here.

Anyway there is a lot I need to learn about cirrhosis

frijole (bean)

[HectorSF]

Some causes of liver damage and cirrhosis:

* Chronic alcohol abuse
* Hepatitis B
* Hepatitis C
* Cystic fibrosis
* Destruction of the bile ducts (primary biliary cirrhosis)
* Fat that accumulates in the liver (nonalcoholic fatty liver disease)
* Hardening and scarring of the bile ducts (primary sclerosing cholangitis)
* Inability to process sugars in milk (galactosemia)
* Iron buildup in the body (hemochromatosis)
* Liver disease caused by your body's immune system (autoimmune hepatitis)
* Parasite common in developing countries (schistosomiasis)
* Poorly formed bile ducts (biliary atresia)
* Problems storing and releasing energy your cells need to function (glycogen storage disease)
* Too much copper accumulated in the liver (Wilson's disease)
* Drugs, Toxins, and heart failure. - Severe reactions to prescription drugs, prolonged exposure to environmental toxins, and repeated bouts of heart failure with liver congestion.

I am sure there are others too.

Hector

[streamline569]

Thank you.... I think this forum is much needed. So glad I found this today.

[Kirael]

Hello!
I wanted to introduce myself and thank you for this support group. I have just been diagnosed with Cirrohsis Child Pugh A. I have had NASH for several years and the Cirrohsis was found thru a biopsy. Reason for biopsy was a 30 day hospital stay with HE. I did not even know I had any major liver complications until the hospital stay a few months back. Life as we know it can sure change on a dime and I am extremely overwhelmed. I guess I have a compensated Chrrotic liver at the moment. Not sure what that means. I am very fatigued and have been for over two years now. Thought it was my Fibromyalgia/CF. I am challenged with a poor memory and concentration as well. Does anyone use Lactulose? If so do you take it daily regardless of how you are feeling?
At any rate I am sure I will have lots of questions and I am going to continue to read the existing posts to see if the answers are already there!
Thank you all and know I have the utmost compassion for what you are going thru.
With warm regards,
Susan

[HectorSF]

What is Cirrhosis of the Liver?
• Scar tissue in the liver restricts the flow of blood and leads to portal hypertension resulting in complications such as ascites, spontaneous
bacterial peritonitis, varices and other potentially life-threatening complications.  
• Spontaneous Bacterial Peritonitis is a condition caused when the body’s natural bacteria enters the ascites fluid causing severe infection.
• The veins in the stomach, esophagus and rectum become so stretched and dilated (due to portal hypertension) that a condition called varices develops which can lead to internal bleeding.    
When the liver completely breaks down and is  unable to perform its job, it is called end-stage  liver disease.  The goal at this stage is to try to manage complications due to a deteriorating liver. Unfortunately, antiviral treatment is generally not recommended for people with decompensated
cirrhosis because HCV therapy can accelerate the decompensation process.  If people are treated with HCV medications at this stage it is usually in the setting of a transplant center that can carefully monitor people during therapy.  The results of some small HCV treatment studies in people with HCV waiting for a liver transplant have found some success in achieving sustained virological response rates and even some improvement in liver function.  In addition, a few studies have found that elimination of HCV prior to liver transplantation prevents reinfection of the liver after transplantation.  
Currently, the only potentially effective treatment for end-stage liver disease is liver transplantation.

Compensated cirrhosis (Child Pugh A) is the early first stage of cirrhosis. Compensated cirrhosis means that the liver is heavily scarred but can still perform many important bodily functions. Many people with compensated cirrhosis experience few or no symptoms.

Decompensated cirrhosis (Child Pugh B) means that the liver is extensively scarred and unable to function properly. People with decompensated cirrhosis eventually develop many symptoms and complications that can be life threatening.  This includes hepatic encephalopathy, ascites, varices that bleed, etc. Since you were hospitalized for HE it would appear the your liver is progressing to decompensation.

Yes, lactulose is the primary treatment for HE. All cirrhotics that suffer from HE take lactulose daily. Lactulose must been taken daily to prevent the buildup of toxins in the blood that effect the brain. It is usually combined with the antibiotic Xifaxan (1100 mg) which clinical studies show prevents servere episodes of HE that can lead to hospitalization. Enough lactulose should be taken to produce 2-4 bowel movements a day. Poor memory and concentration are symptoms of HE.
------------------------------------------------------------------------------------------------------
"What are the symptoms of HE?

Patients suffering hepatic encephalopathy may come to the doctor with a spectrum of symptoms. In mild cases, called minimal hepatic encephalopathy, the patient may have no symptoms but have cognitive deficits revealed by formal neuropsychiatric testing (e.g., number connection tests, etc.). With more advanced hepatic encephalopathy, fatigue, and at least mild deficits of memory, concentration, and coordination may become apparent. At this stage, common complaints by the patient include:
- “I feel like my head is in the clouds.”
- “I’ll walk into a room and forget why I am there.”
- “I am always tired…but I can’t sleep.”
- “I often forget what to say in mid-sentence.”
- “My boss is telling me that my work is slipping.”
- “My handwriting has changed to scribble,”
- “My hands shake so much, I can’t hold my coffee cup without spilling it.”

Nighttime insomnia is a very common and troublesome symptom associated with hepatic encephalopathy. In fact, patients with encephalopathy may ultimately sleep more during the day, with fitful naps, than at night, and this “day-night reversal” is a hallmark of more advanced hepatic encephalopathy. Family and friends frequently notice a deterioration of the patient’s cognitive function as well as a change in the patient’s personality—with frequent irritability, bouts of anger, and loss of social graces. They may also witness firsthand deterioration of the patient’s driving skills (“He would have run off the road if I hadn’t grabbed the wheel!”).

Two of the most common physical (as opposed to subjective) manifestations of hepatic encephalopathy are asterixis and fetor hepaticus. Asterixis is a non-synchronous and coarse tremor– known colloquially as a “liver flap” – that is best elicited by asking the patient to outstretch the hands with straight elbows, wrists cocked at 90 degrees, and fingers spread apart, instructions easily communicated with the command, “Stop traffic!” Although such a tremor is not specific for hepatic encephalopathy (it can also be seen with renal failure and other conditions), it certainly suggests the diagnosis in patients with liver disease. Fetor hepaticus is a musty sweet odor that is usually evident by casually sniffing the patient’s breath.

When symptoms of hepatic encephalopathy progress, the patient may slip into a stupor or even comatose state and be virtually unarousable. Such situations are medical emergencies, and the patient should be brought to medical attention immediately."
------------------------------------------------------------------------------------------------------
Since you have cirrhosis and signs of decompensation you should be seeing a hepatologist at a liver transplant center. You should have a full work up to determine the extent of your liver disease and if need you should be put on their transplant list and monitored by the center as your disease progresses.

Welcome!

Hector

[bink66]

Randy seem to have lost you and the other posts ~ lol  anyway i am still in the same condition but the gastro. doc did call today and told me my lab work ( which i am assuming was all the blood work he done ) was low but that was due to the pbc , my liver enzymes are through the roof and the liver biopsy results from Monday arent in but he wants to see me this week , which i have an appt. Thursday so he said keep that and biopsy results should be back and he will go over everything then and is going to refer me to the Mayo Clinic in jax. fla or Shands in Gainsville so still dont know whats going on but have been in the medical field long enough to know a referal to the Mayo Clinic is not good so needless to say i am a basket case . just wanted to give you an update . hope you are feeling and doing well .

[Kirael]

Thank you very much Hector! Your knowledge along with your ability to explain using words I could wrap my brain around truly are a god send! I am still suffering from anger and denial. The Dr. that diagnosed my Fatty Liver years ago told me I had nothing to be concerned about. Well, here I am. I am doing everything my gastro has told me to as far as healty diet,etc. I just requested to see a Hepatologist @OHSU (Liver transplant facility) and am awaiting the appt. I am also going to have them re evaluate my biopsy. Current Dr. tells me I am a Child Pugh A and I believe I am a B with the HE complications. I suffer from lack of concentration,memory issues and extreme fatigue.Very poor quality of life and I have only just begun this Cirrohsis Journey.
I am looking forward to being supportive to all in anyway possible.
Kirael

[gerard11]

Third week of treatment for me frijole. Boceprevir tx for me also. I too have 3/4 stage fibiros (cirrhosis).. I too was completely shocked after my biospy. I am a post liver tranx (5-2010). . I get much reinsurance when I read posts like yours. Somedays it's all I have to keep from thinking of all the downside possibility's. Your tx  and numbers are so close to mine. I am so glad things are going in the right direction for you! Sounds like your getting close to ending treatment. One of my Docs told me if I was to complete tx, become svr, that the liver I have now would last me the rest of my life!!!! Another bonus was no more liver biospy's!!!! That was very good to know. Good luck frijole!!!!!!!Did not know there was a Cirrhosis fourm. Thanks to all who take the time to post.

[yodennis]

Best of luck to you my friend!

[catmagic0406]

I may be joining you soon.  I see Dr. Gish's associate next week in Vegas.  My bx in May knocked me sideways.  I can't even tell from the damn thing if I am actually cirrhotic or not because of the way it was written.  My GI was clueless, tried to bluff me, but forget about him.  I NEVER expected to see the stuff that was in writing on that report - bridging fibrosis, moderate to severe piecemeal necrosis and after that in parentheses (2+/3+).  Stage and Grade were not specified.  Whatever all this adds up to, it's not good.  I want to do the Triple Tx NOW, so I hope I'm cleared for it.  I am very happy that this forum is here.

[rpooo]

Please feel welcome to join us anytime! You are fortunate to only be fibrotic and having already began treatment, once you have eliminated the Hep C virus your liver may begin recovery. However it is possible that someday you may be facing cirrhosis. Do everything you can to avoid decompensated cirrhosis (stage C) Avoid using OTC (over the counter) medications that metabolize in the liver, healthy diet and complete abstinence from alcohol will be a good way to start.

There are four stages of liver disease:

Fibrosis
The National Digestive Diseases Information Clearinghouse notes that symptoms of liver disease often remain unrecognized until the disease is advanced, typically during the second stage. Fibrosis refers to scarring that accumulates in the liver. Scar tissue eventually replaces the healthy liver tissue, which leads to prevention of blood flow to the liver. During fibrosis the liver stops functioning at full capacity. According to the American Liver Foundation, treatment during this stage may still offer a chance for the liver to heal as well as preventing further disease progression.

Cirrhosis
Cirrhosis is the third and most detrimental stage of liver disease because there is no healing once this stage has begun. In addition to serious and irreversible scarring, a number of complications may ensue, including bruising and bleeding, jaundice or blocked blood vessels. Toxins may also build up causing mental impairments, such as loss of concentration and memory. The National Institute of Health recognizes that liver cirrhosis is one of the leading causes of death in the United States. Treatment during this stage is focused on managing symptoms to protect and prolong what is left of healthy tissue.

Final Stage
Liver failure is the most severe stage of the disease. When liver failure occurs symptoms, such as nausea, fatigue and diarrhea, are present. These symptoms become worse as liver failure progresses. Liver failure indicates loss of all liver functioning and requires urgent medical care. The American Liver Foundation indicates that cirrhosis leading to liver failure is typically gradual but has been occurring possibly for years. This stage of liver disease leads to eventual death and there is no treatment to reverse damage caused by liver failure.

Read more: http://www.livestrong.com/article/114296-four-stages-liver-disease/#ixzz1zrIfH3Fd

At this point transplant is the only option left available.

The METAVIR system was developed by French researchers to score the severity of liver fibrosis associated with HCV. The METAVIR score helps interpret a liver biopsy. When this biopsy is performed, doctors need a reliable way to quantify what is seen under the microscope. This scoring system assigns two standardized numbers: one to represent the degree of inflammation and the other the degree of fibrosis.

Stage 0 (F0) is indicative of no scar tissue.
Stage 1 (F1) describes mild fibrosis around the portal tracts.
Stage 2 (F2) indicates that the scar tissue is beginning to branch out from the portal tracts, forming a few septa.
Stage 3 (F3) indicates that the branches have extended to the point where the portal tracts begin to bridge, often known as bridging fibrosis, and numerous septa are observed.
Stage 4 (F4) describes the expansion of scar tissue to form thick bands in the liver, also characterized as cirrhosis.

Please feel welcome to post or comment anytime and welcome to MedHelp's Cirrhosis of the Liver community!

Randy

[delila747]

Thanks Randy. This was the best information so far. I have cirrhosis and am starting a trial drug treatment this month through Virginia Mason Medical Center, Seattle. It's the best cure rate out there but will not be approved till 2014. The drug is called GS-7977 with pegylated interferon and ribavirin for 12 weeks. I feel very lucky to get this treatment because my insurance would not pay for the drugs for the treatment on the market now. This one is better than those. You all can check it out at:
http://www.aidsmap.com/GS-7977-with-interferonribavirin-cures-most-treatment-naive-hepatitis-C-patients-in-12-weeks/page/2333885/

I'm expecting the side effects of the interferon and ribavirin. What have you guys experienced? I hope to keep doing child care.
I'll be watching. Thanks

[22hamilton]

As a fellow member of the cirrhosis club am really pleased to see there is now a place just for cirrhotics and the issues that this can entail. Great idea !!!

[rpooo]

Welcome to our new community! I am glad you found us. If you have a question(s) start a new post this will give other members a better chance to respond providing you with more answers and seperate our topics :)  Again welcome,

Randy

[nursegill]

We were told my dad had stage 4 cirrhosis in the end of may 2012. He is 67 years old and was on medication that did this to him. My brothers and I decided not to tell my mom or him. We just thought they would be a mess. The doctor told me to go home and call hospice he would be lucky if he lived 6 weeks. Here we are today Jan 5 and I still have my dad. Last year he was in and out of hospitials I kept telling the doctors there was something wrong his leggs would swell he couldnt breath walking was becoming very hard. I started doing research on in inernet and found his heart medication and blood preasure meds were the problem. I took him off of 23 meds. He was losing blood fast and they could not find the bleed he had lost over 40 lbs. We had blood transfusions ever other weeek. When We left the 4th hosp over a period of 5 months. My dads white blood count was 1.2 his blood platelet count was at a 4o and the billirubim was out of controll. We went home a found a wonderful doctor that put him on vitiams and minerals. And talked me into buying a machine that is a muscle stimulator called a neurcare 6000xp.I called the company and told them what my dad had and they told me. You dont die from the cirrhosis you die from the lack of blood getting to all of your organs. They told me were to place the pads and I hook up my dad evernight to this machine. It keeps all the blood flowing to his liver and kidneys. My dad is still not on any meds and eats anything he wants. He has not ever been drained and his kidneys work fine. The doctors have no idea of what is going on with him. They think it is lasex but we dont take them either. As of last night the gastro doctor called me to let me know that he thinks his liver is recovering. His white blood count was a 4.4 and Bil is a 2.16 all of the liver functions that have been out of wack are just a little elvated now. What he takes is co-q 10 lipid acid, buffered vitiam c 10 a day ,lacetyl l-carnitine, silymarin forte, vitaim d-3 5000mg , muti flora plus probotic, lymphonest, solidago, quicksliver vitaim c spray, corvan ribose, and then we give him a bath that helps get rid of toxins from liquid needles. My dad is back to doing his crafts riding a bike and has no itiching, bleeding or asities. I am not a doctor just a daughter who loves her dad and was not ready to say goodbye. We dont know how long we have but right now I will take ever day. I hope this helps someone because I know how it feels when you are told you dont have long to live and we can not do anything to help you.

[pugdaddy]

NurseGill -
Just a note to say hello -
How are you?....and how is your DAD getting along these days?
Warm wishes,
P-