Aa
What 2 expect?
Stage 4 cirossis and grade 3 hcv, Started a clinical study for Abbott and they said my cerotic liver would not allow me to go further, I'm told nothing can help and we'll wait and see how long till parts start failing. There seems to be a difference of opinion after biopsy as to what stage 4 means, Gastroenterology and internists are the only doctors in my area and hepotoligists are 150 miles out, No insurance or savings left and working labor part time with the help of pain meds.
As hcvjames said, the reason I was asking about symptoms is because your symptoms help us to understand whether you have compensated Cirrhosis or decompensated Cirrhosis. Compensated = liver is still functioning, Decompensated = liver is not functioning very well, and of course their are various degrees of each as it is a disease that progresses.
You said:
confusion/disorientation/slurred speech, forgetfulness? No swelling, fluid? insatiable appitate, weight loss
Confusion/disorientation/slurred speech may be signs of Hepatic Encephalopathy, a condition in which ammonia builds up in your system due to the liver not performing all of its functions well, and could be an indicator of decompensation. Sounds like you might have that symptom.
No swelling of the abdomen...swelling of the abdomen could be a sign of ascites, when fluid builds up in the abdomen causing pain and discomfort, which would be another possible sign of decompensation. Sounds like you do not have that symptom.
Fluid build up, or edema: when fluid builds up in the feet or legs, causing swelling, could be a sign of decompensation.
Insatiable appetite, weight loss: Often people with advanced liver disease (decompensated Cirrhosis) cannot get nutrition from their food because their livers are not performing all of the necessary functions. Weight loss is sometimes a complication of this. Weakness, sleepiness, lack of energy, and extreme can be another complication, again because the body is not getting enough protein and other nutrition from the food that is being eaten.
Obviously, I am not a doctor, and I do not have any knowledge of decompensated liver disease, other than what I have read and learned on this forum; however, based on what you have said above in your original post and some of the symptoms you have described that you have, I think it's very possible that your liver may be decompensated.
If that is the case, you must be under the care of a hepatologist in order to have your liver monitored for liver cancer, to receive proper care and treatment to prevent liver failure, and to be evaluated for the possible need for a liver transplant in the future. Again, I am not a doctor, so I cannot say for sure what your health status is, but from what you are describing, you have advanced liver disease. I strongly recommend that you get an appointment with a hepatologist, preferably at a liver transplant center, so that you can be properly evaluated and get the right care.
As canothus said, it is crucial not to drink alcohol, take any recreational drugs, or take any medications or supplements without advice from a hepatologist. Do not take any Ibuprofin or Tylenol without advice from a hepatologist. Restrict your sodium intake. Do not eat processed foods that are high in sodium. Drink lots of water. Do not eat red meat. Do not take vitamins with iron. Eat small, frequent meals, with a focus on organic fruits and vegetables, and protein. Ensure and Carnation Instant Breakfast have been recommended for those who need more protein and whose livers are not functioning well.
You should be seen by a hepatologist as soon as possible. Life threatening complications could occur and things could take a turn for the worse.
Advocate1955
You said:
confusion/disorientation/slurred speech, forgetfulness? No swelling, fluid? insatiable appitate, weight loss
Confusion/disorientation/slurred speech may be signs of Hepatic Encephalopathy, a condition in which ammonia builds up in your system due to the liver not performing all of its functions well, and could be an indicator of decompensation. Sounds like you might have that symptom.
No swelling of the abdomen...swelling of the abdomen could be a sign of ascites, when fluid builds up in the abdomen causing pain and discomfort, which would be another possible sign of decompensation. Sounds like you do not have that symptom.
Fluid build up, or edema: when fluid builds up in the feet or legs, causing swelling, could be a sign of decompensation.
Insatiable appetite, weight loss: Often people with advanced liver disease (decompensated Cirrhosis) cannot get nutrition from their food because their livers are not performing all of the necessary functions. Weight loss is sometimes a complication of this. Weakness, sleepiness, lack of energy, and extreme can be another complication, again because the body is not getting enough protein and other nutrition from the food that is being eaten.
Obviously, I am not a doctor, and I do not have any knowledge of decompensated liver disease, other than what I have read and learned on this forum; however, based on what you have said above in your original post and some of the symptoms you have described that you have, I think it's very possible that your liver may be decompensated.
If that is the case, you must be under the care of a hepatologist in order to have your liver monitored for liver cancer, to receive proper care and treatment to prevent liver failure, and to be evaluated for the possible need for a liver transplant in the future. Again, I am not a doctor, so I cannot say for sure what your health status is, but from what you are describing, you have advanced liver disease. I strongly recommend that you get an appointment with a hepatologist, preferably at a liver transplant center, so that you can be properly evaluated and get the right care.
As canothus said, it is crucial not to drink alcohol, take any recreational drugs, or take any medications or supplements without advice from a hepatologist. Do not take any Ibuprofin or Tylenol without advice from a hepatologist. Restrict your sodium intake. Do not eat processed foods that are high in sodium. Drink lots of water. Do not eat red meat. Do not take vitamins with iron. Eat small, frequent meals, with a focus on organic fruits and vegetables, and protein. Ensure and Carnation Instant Breakfast have been recommended for those who need more protein and whose livers are not functioning well.
You should be seen by a hepatologist as soon as possible. Life threatening complications could occur and things could take a turn for the worse.
Advocate1955
James' post was excellent! Your very life is at stake here, and it isn't likely that anybody will save it for you unless you really push for that. Educate yourself as much as possible by reading up both here and at http://hcvadvocate.org so you will really understand what is going on and what should be done, then start advocating for your own health. Don't drink ANY alcohol, eat a healthy and low-sodium diet, exercise caution with pain meds (don't use anyNSAIDs, keep your Tylenol consumption well below 2000 mg per day), and try to get to see a really good hepatologist, even if it inconveniently far. It's time to get into life-saving mode of operation, and if you can do that you will probably be able to find ways to the medical assistance you need. Please try to work up a positive can-do attitude – it can really help make things work.
p.s. I'm another cirrhotic who just completed treatment, and it isn't definite yet but it looks like I'm probably cured of the HCV. Join us!
p.s. I'm another cirrhotic who just completed treatment, and it isn't definite yet but it looks like I'm probably cured of the HCV. Join us!
What people are getting at when they ask about very specific symptoms is those symptoms indicate whether you liver is compensated or decompensated. You can be stage 4 and compensated, as I am, meaning you can treat, the sooner the better. Stage 4 compensated means your liver is shot to hell but has some functionality left. Decompensated means your liver has ceased to function and is being by-passed. What then is left is a liver transplant. Push for an answer to the comp/decomp question. Of course you know, no alcohol ! Pay attention to Dee. I received ALL my meds via the drug companies Patient Assistance Program, Incivek, Interferon and Riba, plus a fourth drug, Neupogen (for low White Blood Cell count), free. So it's possible. Good luck, push hard, and let us know. James
I don't know enough about your situation to really say much however wanted to say that I have cirrhosis, I finished treating with Incivek, Peg and Riba back in February, 6 months later I was cured
Incivek has a help line and they can help get you started with paperwork. Of course that is assuming that you have a doctor that could help you.
The manufacturers of the medicines are providing help for people with no insurance. In some cases they will pay all.
I hope you can get some help. Hang in there
Dee
Incivek has a help line and they can help get you started with paperwork. Of course that is assuming that you have a doctor that could help you.
The manufacturers of the medicines are providing help for people with no insurance. In some cases they will pay all.
I hope you can get some help. Hang in there
Dee
Thank you for your interest,so far confusion/disorientation/slurred speech, forgetfulness? No swelling, fluid? insatiable appitate, weight loss
Do you have fluid on your abdomen, enlarged organs, abdominal pain, swollen feet/legs, bleeding in esophagus or internally, confusion/disorientation/slurred speech, forgetfulness?
advocate1955
advocate1955
I have copies of all nlood and biopsy reports, Core biopsy liver consistant with chronic hepatitis C and micro nodular cirrhosis. (Grade 3 inflammation with moderate-extensive interface hepatitis and stage 4 cirrhosis). The HCV is genotype 1. I live in south central Florida, thanks for your thoughts
Some family with love 4 help, ssdi sent me to a foriegn pulminary specialist with translater he said not yellow or swollen yet so still can work. after 3rd rejection I'm on list for assistance but a 2 year wait after decision before medicade is available Thanks for the thought
Be careful about taking pain meds as many are dangerous for a person with cirrhosis and can make your condition worse. Avoid ibuprofen and tylenol.
Check with your doctor about others.
If you have no insurance, you may be able to get help from the liver clinic or hospital by applying for financial assistance, sometimes they call it charity care. Also you can apply for medicare or other program.
I drove over 100 miles the first time I did treatment because my GI was simply not qualified to care for my cirrhotic liver. A hepatologist is who you need to see.
Check with your doctor about others.
If you have no insurance, you may be able to get help from the liver clinic or hospital by applying for financial assistance, sometimes they call it charity care. Also you can apply for medicare or other program.
I drove over 100 miles the first time I did treatment because my GI was simply not qualified to care for my cirrhotic liver. A hepatologist is who you need to see.
Welcome to the forum. I am very sorry that you are having all of these medical problems and are not getting the help that you need.
Mike, if you could give us a little more information people may be able to respond with more suggestions and/or helpful information.
I am assuming you are Genotype 1? any subtype such as 1a or 1b?
Do you know if you are CC, CT, or TT?
In what general area do you live (state, near which large city)?
Can you please type in your biopsy report ... then others can better respond with specific suggestions.
Do you have compensated cirrhosis?
Do you have any complications from your liver disease such as ascites (fluid in abdomen), esophageal varices, fluid in feet and legs, enlarged organs?
If you have copies of your lab tests, can you type in the results?
I am asking these questions because there are some people on the forum who can give you specific responses and help if they have enough information to do so.
You really do need to be under the care of a Hepatologist who is affiliated with a large medical center/liver transplant center. They are the doctors who have the expertise in treating and managing liver disease and for caring for patients with cirrhosis. Other doctors just do not have the knowledge and expertise to handle complicated and advanced liver disease.
Most large medical centers/transplant centers/university affiliated medical center do have financial assistance programs and/or free medical care if a person qualifies. Please let us know where you live so someone can refer you to the appropriate contact person or office.
Mike, if you could give us a little more information people may be able to respond with more suggestions and/or helpful information.
I am assuming you are Genotype 1? any subtype such as 1a or 1b?
Do you know if you are CC, CT, or TT?
In what general area do you live (state, near which large city)?
Can you please type in your biopsy report ... then others can better respond with specific suggestions.
Do you have compensated cirrhosis?
Do you have any complications from your liver disease such as ascites (fluid in abdomen), esophageal varices, fluid in feet and legs, enlarged organs?
If you have copies of your lab tests, can you type in the results?
I am asking these questions because there are some people on the forum who can give you specific responses and help if they have enough information to do so.
You really do need to be under the care of a Hepatologist who is affiliated with a large medical center/liver transplant center. They are the doctors who have the expertise in treating and managing liver disease and for caring for patients with cirrhosis. Other doctors just do not have the knowledge and expertise to handle complicated and advanced liver disease.
Most large medical centers/transplant centers/university affiliated medical center do have financial assistance programs and/or free medical care if a person qualifies. Please let us know where you live so someone can refer you to the appropriate contact person or office.
It sounds like your liver is too damaged for treatment for your hep c and possibly too damaged for most trials. Do you have ascites, varices, or hepatic encephalopathy? anyone with cirrhosis should be monitored by a hepatologist. 150 mi is not too far to potentially save your life. Do you have family who can help? Can you apply for SSDI?
Advocate1955
Advocate1955
Have an Answer?
You are reading content posted in the Hepatitis C Community
Learn about this treatable virus.
Getting tested for this viral infection.
3 key steps to getting on treatment.
4 steps to getting on therapy.
What you need to know about Hep C drugs.
How the drugs might affect you.
These tips may up your chances of a cure.
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
