Everyone with a chronic hepatitis c infection should be evaluated for treatment. Discuss this decision with your Doctor. Cirrhosis is a condition where the liver cells are damaged and replaced by scar tissue because of chronic inflammation. The scar tissue affects the flow of blood and other fluids through the liver so that it cannot work as well as it should. Over time this can cause a range of symptoms and may result in liver cancer or liver failure.
Not everyone with HCV is a candidate for treatment. People who have decompensated cirrhosis (meaning the liver cannot keep up with the amount of fibrosis that has occurred) should not begin HCV treatment. Treatment is generally not recommended for people with autoimmune hepatitis, severe anemia, unstable diabetes or cardiovascular disease, or psychiatric problems that have not responded to treatment. Likewise, those who are malnourished, jaundiced, or who have swelling of the abdomen (ascites) or brain (encephalopathy) should not take current HCV treatment. In these cases, a liver transplant is often the only option, and these are now being done in coinfected people. HCV cirrhosis is the most common reason for liver transplants in the U.S. and Europe.
There are several stages of cirrhosis, Vicky. The GI or hepatologist will probably order more tests and perhaps procedures to ascertain your condition.
One of the scales they use is called the Child Turcotte Pugh score; with grade A, B and C cirrhosis. More importantly you want to know if it is ‘compensated’ or ‘decompensated’ liver disease. Compensated disease suggests that the liver is continuing to perform it’s intended functions; filtering, manufacturing and synthesizing. The doctor will probably order new lab results, and decide how advanced your disease is based on these.
I’m sorry to hear you’ve undergone therapy in the past without results; it’s now time to take extra good care of your liver until the doctor can offer you a way to cure the virus. Here are a few thoughts that come to mind:
• Until you speak with a specialist, avoid large portions of red meat; protein intake is important, but you can get it from chicken, fish, and from things like lentils and beans.
• Avoid added salt; this will help with the fluid retention that you mentioned, and possibly ease the swelling in your legs and tummy.
• DO NOT DRINK ALCHOL. You probably know that, but it’s worth repeating.
• Make a new list of any drugs you take, including any herbal supplements. Do not take any additional drugs, supplements or herbs without discussing this with your doctor first; some drugs and supps will cause further damage; this is critically important with cirrhosis.
• Make a list of questions to discuss with the doctor at your sirst meeting; and if possible, bring along a friend or family member to help you remember what has been discussed; there will likely be quite a bit of info exchange during the initial visit.
• If you feel confused, angry or disoriented before you see the specialist call your primary doc, and if needed go to the ER. Likewise if you encounter any blood in your mouth or nose, do the same.
Good luck; others will hopefully stop by with more info; this is a start. Stay in touch,
About this confusion you mention; you can call your primary care doctor, and ask if the drug ‘Lactulose’ is indicated for you. It might help a bit, and probably won’t do any harm; at least until you can see the specialist.
The treatment for cirrhosis depends largely on how far along it is, Vicky. If it is still considered compensated, then another round of interferon might be in order; if not, then the best thing you can do is carefully manage it to prevent further decline. There is a chance to save the liver if the Hep C can be eliminated; be sure to discuss this with the doc.
Also be sure to ask the doctor about an endoscopy; they will want to look down your throat with a scope, to rule out any varices that might have developed. These can be dangerous, and are easily fixed if found. Be sure to report any blood in your stool, mouth, etc.
I was in a similar situation back in 2008. I was diagnosed with HCV - 1 a also - back in Jan. 2004, but was without insurance (plus a bit of denial for good measure) :-) at the time. I felt pretty good all along and anything that felt 'different' I chalked up to getting older. But by 2008 I knew it was more than that. Nothing too drastic - a slight puffiness under my eyes and some ankle edema from time to time - but deep down I knew things were changing.
I found an insurance company that would cover me in a high risk pool and after a 6 month wait, jumped into doing all the testing. Sobering, like you feel now, with the dx of cirrhosis (compensated). And rightfully so, the doctors didn't try in the least to gloss over it and recommended an aggressive tx for me. I just finished up 72 weeks in May, was UND at 12 weeks on through to the end of tx. Still waiting on the final verdict to see if I reached SVR, but I don't regret one day of it, come what may. My ultrasound done in June was encouraging in comparson to one done last September.
"History from IDA:
* CHRONIC HEPATITIS C WITH CIRRHOSIS
ABDOMINAL ULTRASOUND COMPARISON: 9/18/09.
FINDINGS: The hepatic echotexture is only mildly heterogenous on the current examination. No surface nodularity is appreciated. No intrahepatic bile duct dilation or discrete mass is identified. Small mobile gallbladder calculus measuring approximately 4 mm. No gallbladder wall thickening or pericholecystic fluid. The common duct is normal in size. The pancreas appears normal. The spleen is normal in size.
Not SVR to be sure, but as the Dr. says, it gave my liver a good break and if I do clear, further improvements are possible.
You'll have more test results coming in that will give you and your medical team a better picture of options available. My suggestion would be to keep a notebook and keep adding the questions that will arise. There are quite a few cirrhosis threads here to read through also. One step at a time, Pam
Yes, there IS treatment. There is hope. Hang in there. If the virus can be treated, there is real chance for you to get better. The important thing now is to take charge, and learn all you can. Bill posted an excellent list of things to do next.
The most important is to get with a doctor, and DON'T TAKE NO FOR AN ANSWER.
Stay with us.
Thank you all for your input. This is so scary. I've had Hep C since 2000. I knew this day was coming. My appointment is next Wednesday where they will do more lab work, and talk about what we're going to do. I don't understand some of the lingo but I think I know. I have already had the fluid problem. My stomach will look like it 3 -4 months pregnant, ankles and legs swollen and my joints are hurting really bad. I've been having this deep cough and sometimes I get nausea where I throw up. I do get confused a lot and my short term memory is terrible. I seem to sleep a lot during the day and I'll wake up in the night to write. It's my therapy I guess the moment of truth is when I see the doctor on the 21st. Thanks again.
Bill your swell!
My Hepatologist has two patients that have had Cirrhosis for a long time. One for 16 years, the other for 32 years. It's not a death sentence by any means. Just take good care of yourself until the Protease Inhibitor drugs come out next year. They've been miraculous to most non-responders like you and I and others here. Hang in there... hang in here also...
Vickie, they should eventually work up something called a ‘MELD’ score based on future lab results; you’ll want to inquire about this. It is the score that UNOS and transplant centers use when or if that becomes necessary. I have no idea based on the info you provided it transplant is indeed in your future; but that score will be important if it is.
In the meantime, try to use this time to become informed. It is critical to abstain from alcohol and illicit drugs; I don’t know if they’re an issue for you, but they won’t consider transplant if the patient currently drinks or uses drugs, or even if they have a recent history of that.
You’ll find as others have said that cirrhosis isn’t always a death sentence, but it is a serious complication and requires careful management.
Please don’t forget to discuss the EGD (it’s a really long word; use the abbreviation :o)); bleeds in the esophagus or GI tract can have disastrous consequences, but can be prevented by frequent monitoring.
The confusion can usually be managed with drugs like Lactulose; it’s a type of laxative, and will help control the ammonia. Sleep disturbances like sleeping during the day are typical; grab sleep whenever, wherever you can, and don’t worry about what others might think; sleep is important.
And do keep in touch here, so you don’t feel alone.
Good luck and keep us posted—
And thanks for the kind words :)
Wow all these words. I'm going to have to write all these down. My weeks have been really coming together. Sometimes I don't even know what down it is. Sleep days up and nights. I read that this is normal when you have cirrhosis. That's one thing I do is write. I've got several blogs about my bipolar, Alzheimer's (I'm a caregiver for my parents) this has been hard lately, and just anything that would be of interest to others. I'm writing about family caregiving. This really gives me a purpose when I write. I have ADD and Bipolar. I have horrible grammar skills as well. My learning skills stink. So I work hard to learn. Now I have this other.
I hate to admit this but I did have a drinking problem even had to go to rehab. I didn't know had the time that it was the bipolar that was driving me to that point. I was always in pain and depressed. I even thought of suicide. I had a sad life. I was physical and verbally abused by my x-husband, raped and much more. I lived in so much pain so I turned to drinking. I found out I had hep c in 1995, before I started drinking which was somewhere in 2004. My dates may be a little off. My drinking started when my only son left to go in the army and I found my guy of 5 years in bed with a 20 year. That just killed me. So there some of my life. Sorry to spill it out. So see I caused all this. So I'll I have to live with it.
My thoughts are with you. Life can be so painful to some. Please try to be compassionate with yourself. You have now found this forum so well done. Keep talking and slowly take control.
Good luck and Godbless you.
Try not to dwell on the past Vickie. We all make mistakes and for some the consequences are more difficult to with deal down the road but we have to keep moving forward. I am a caregiver too and I know first hand it's not an easy job but your health comes first, otherwise you wont be able to help anyone else. So talk with your doctor about ways to deal with the cirrhosis and improve your quality of life. Try not to ruminate about the past and do the best you can with what you've got. Nobody can ask any more than that from you.
Gosh that made me cry, but in a good way.
The best thing I ever did was have my loving son who is 33 and a great support who talked me into getting tested again. To stop drinking and smoking two years ago. Now, to have this forum to talk to people who understand.
Question, can cirrhosis just suddenly attack you in a big way. For the past month my stomach, legs, ankles started swelling. My joints hurt. I've been confused a lot with short term memory problem. I have bipolar on top of this so I'm not sure who to blame it on.
I see my mental doctor today thank goodness.
Thank you so much to everyone.
The swelling in the feet and ankles (edema) is typical of cirrhosis; as it the swelling in the abdomen (ascites). The water retention can be managed to some extent with diet; I imagine they will put you on a reduced sodium, or sodium free diet. You could probably get a jump on that now by avoiding salt where you can; I don’t think that would hurt, anyway. Additionally, they might start you on diuretics (water pills) to further reduce water retention.
If the fluid in your abdomen becomes uncomfortable and interferes with breathing, etc, they might ‘tap’ you, a procedure known as paracentisis. They sometimes drain 5 and 6 liters (quarts) of fluid at a time; this will probably be discussed at the initial consult with the specialist.
Again, memory issues are typical of cirrhosis as well; it is very likely due to ‘hepatic encephalopathy’; a condition due to improper protein metabolism. The drug ‘Lactulose’ can help, and there are other drugs that can be used for this too.
Good luck—and continue to keep us posted—
Lot's of good advice in everyone's postings...
The symptoms you are experiencing are signs of advanced cirrhosis. You are experiencing symptoms of decompensated cirrhosis. Decompensated cirrhosis means your liver can no longer perform all of its functions properly because it is too diseased.
Your swelling of the abdomen (ascites, is the most common complication of cirrhosis) and legs and ankles is a sign of fluid retention.
Fluid leaks out into the belly and it begins to fill it up. This can make the abdomen enlarge like a balloon filled with water. The legs can get swollen too. This can be very uncomfortable. Eating can be a problem because there is less room for food. Even breathing can be a problem, especially when you are lying down. But the most dangerous problem with ascites is infection, which can be life-threatening.
* If you have ascites and you suddenly get a fever or new belly pain, you should go to the emergency room immediately. These could be signs of a serious infection that can be life-threatening.
The treatment for this symptom is to reduce your salt intake and diuretics.
The confusion, memory problems, and the reversal of day and night time (sleep a lot during the day and I'll wake up in the night) is called hepatic encephalopathy. This is caused by your liver not being able to filter toxins from your blood.
If you have encephalopathy, you may have problems driving, writing, calculating, and performing other activities of daily living. Signs of encephalopathy are trembling and hand "flapping."
Encephalopathy may occur when you have an infection or when you have internal bleeding, and it may also occur if you are constipated or take too many water pills or take tranquilizers or sleeping pills.
Treatment consists of Lactulose and an anti-biotic such as rifaximin.
You should be seeing a hepatologist (a doctor that specializes in treating liver disease). Since your liver disease is so advanced you need someone who is used to treating patients like yourself. A hepatologist can also refer you to a transplant center in your area so that you can get on the transplant list. There are a few transplant centers in the Dallas area. One of the most well known is Baylor University Medical Center.
With the proper medications you may be able to control most if not all of these symptoms. Whether you will be able to treat your HCV with the new STAT-C/PI meds that may be coming out next year will be a decision that will be made by your doctor (depending on your future health) and yourself. Otherwise you will need a liver transplant. There are a number of us here on the forum who are in a similar position. We are getting to the point where you may be too ill in a year to try the new treatments that may be available.
Right now your main goal should be finding a doctor who treats cirrhrotics who you can work with as you face this challenge.
Best of luck.
Keep asking questions and voicing your concerns. There are many helpful people here who can provide help based on there own experiences with this illness.
I wasn't diagnosed with HCV until I had decompensated cirrhosis. My symptoms were much like yours.
Try to cut salt out of your diet. Read the labels on everything. Even bagged salad often has added salt. Eat fresh foods. Avoid red meat, stick with fish or chicken.
Soy milk, tofu and egg whites are all good for your albumin levels.
Lactulose will help with the encephalopathy, which affects the mind. I landed up delirious in the ER from it, so it is serious but the medicine helps immensely.
Write down questions for your doctor as you think of them and bring them with you to your appointment.
I did the treatment for hep C, relapsed and had a liver transplant. Now I feel great and so far my liver is healthy but I will probably need to do treatment for hep C someday.
Best of luck.
Thank you for your advise. You've been through the ringer. I need to look up all these medical terms so I can understand them. I'm sorry you had a rough time, but I'm glad you are well today. I wonder what caused the cirrhosis - hep c, my years of abusing alcohol, or the medications I've taken all my life.
I actually was not surprised when I was told about the cirrhosis. Let's just say my intuition told me. Your right the best thing to do from now on is eat right, lots of rest, and stay away from wine. I really enjoy a glass of wine from time to time and it's hard since my mom, 83, has been drinking a lot. She has dementia/bipolar - she says it's her crutch an helps the pain. That's what I went through for many years. I quit she starts.
I really appreciate all of you - I don't have anyone to talk to that understands. I feel they don't believe me especially my brother and that hurts. They just say oh, okay. My parents don't want to believe anything is wrong with my little girl. I could go on but I won't bore you. I need to go to my journal on my blog.
You've all been great, bless you.