Hello everyone, this is probably the hardest gut wrenching thing I have ever had to discuss, but i need answers. My mothers doctor sat down with me today and told me she has stage 4 cirrhosis. I did't get really anything else out of him except she needs to lose weight before they will put her on the list also quit smoking, and eat healthier. They are gonna send me her lab reports in the mail. She has never had a biopsy just ultrasounds. Why is this? Is this normal. how do they know what stage she is if she has never had this done? What do I expect. She seems to be okay until she was hospitalized for pnemonia a few days ago. this all came so soon. normally she seems great besides the fact she dont have the energy she used to 10 years ago but she is 45, but that is still really young. I guess I am just hoping that someone will tell me there is meds she can take or other things to keep her healthy. I hope it's not to late...Thanks, Nikki
so sorry to hear about your Mom I suppose the ultrasound can see some liver damage
not sure however if it can see stages of cirrosus you may want to consult with a heptologist in your area call for references to major hospitals near you may be a good idea to find one to speak with and get more tests done to see exactly your mom's conditio
I am assuming they want your mom to lose weight and quit smoking for her health or did they mean by list a transplant list? Does your Mom currently see a heptologist or GI?
More educated forum members will chime in and have suggestions for you
Your Mom is lucky to have you
I am also a stage 4 (compensated cirrhosis) and I understand what a sinking feeling it is to hear those words, but alot of progress has been made in treating those of us with cirrhosis.
One thing I wonder is if you are seeing a liver doctor or at least should get a second opinion. If no biopsy has been done, I wonder how they came to the Stage 4 decision. Some blood tests and scans may "suggest" cirrhosis, or more importantly to determine if the cirrhosis is compensated or decompensated, but are usually followed up by the all important biopsy. Even in the case of low platelets I believe a biopsy can be run although it's often one that's less invasive than the standard biopsy. Someone else might be able to provide more info on that particular one.
Curious too if the recommended weight loss and quitting smoking is to pursue treatment in the future. Seems if a transplant was in the offing that more info would be provided.
Nikki, you are already starting to put together a list of all important questions...things that haven't been answered to your satisfaction. Way to go!! Keep a list of them ( and that list will grow!)
One more thing before I stop...it's good to get a copy of all labs and tests for your own records like they said they will send you. But labs without explanation are cruel....our minds can jump to all kinds of conclusions without some interpretation. So make sure any abnormal tests are explained to your satisfaction.
Wishing you both lots of luck and patience as you set out.....Pam
Just want to reach out a hand to you so you know you are not alone. I have a daughter about your age, and I know how devastated she would be if anything happened to me. I can understand how you are feeling, and with such a young mother.
I am not that knowledgeable about cirrhosis, but your mother's low platelets gave me a clue that this might be what was going on. There are different ways of stating the platelets, so to compare them with the normal range you mentioned of 200,000 to 400,000 your mother's platelets probably translate to 68,000.
With hepatitis C it is common to have no symptoms until you have reached stage 4. There is treatment available for hep C, and there are those who treat with cirrhosis. Others have to get a liver transplant first and then treat afterwards since the hep C will not go away without treatment.
I hope the members more knowledgeable about cirrhosis will come along. I can ensure you that this is a very good place for you to find information and support.
Stage 4 cirrhosis is classified as to severity; using the Child-Pough scoring system, it can be graded as child-class A, B, and C. One major difference is whether the liver is compensated or decompensated. With compensated disease, the liver’s architecture is altered; but the organ continues to perform its vital functions. When decompensation occurs, it can lose its ability to filter, manufacture etc. We have many members in here with compensated cirrhosis; of itself, it’s not a death sentence, but it certainly needs to be managed.
Depending on the level of damage, she might not require a biopsy. There can often be enough evidence by blood test (low platelets, changes in serum bilirubin and albumin, etc) and US/scan to avoid an invasive procedure such as needle biopsy.
Make sure she is compliant with ALL doctor’s orders; this may be important should she require transplant down the road. No alcohol and be sure she follows doctors orders to a tee. Her doctor should ***** her and determine if she needs to be evaluated by a transplant center; and a MELD (Model End stage Liver Disease) score should be assigned.
She really needs more information to know where she’s at in terms of damage at this point. Janis and Friends has some fairly comprehensive info about Cirrhosis:
You didn’t mention if this is Hepatitis C related; this will be important info as well.
Yes it is hepatitis c related, My mother does not drink but probably 4-5 times per year I see her have a glass of baileys. I think she just thinks it is gonna go away or something. I know she takes milk thistle but thats it. I also want to know what genotype is? I just found out today that my dad has it also (just great i thought). The dr said he is like a carrier but has no signs or symtoms of it. I dont get that, So what he gave it to my mother and she is not doing well at all and he is just fine hmmm?
I also see no signs on her such as jaundice, but she does not heal well at all. She itches alot and takes zyrtec for that when she has an attack with that. She said you can tell a little by her neck, it kind of has red broken blood vessles which are very tiny but my mother said thats what it is from. Those are the only signs and symptoms she has.
well i dont know if she really thinks it is gonna go away, or if she is trying to protect me by not telling me anything. So I took it upon myself to get to the bottom of it and Make her get better and healthier. I will do whatever it take to keep my best friend and my mommy! She is my whole world.
Unfortunately, there’s often little outward sign of early cirrhosis; many people that are diagnosed are asymptomatic, and don’t realize they are ill.
If she has Hep C and has progressed to cirrhosis, her problems will not self correct; she needs to take action soon. If she can beat the virus, she stands a good chance of full recovery; this should be discussed thoroughly with her doctor. There is medicine that can eliminate the Hepatitis C (HCV); but she needs to take action; the liver disease *as well as* the medicine can cause a reduction in platelets… if they get too low, she will not be a candidate for treatment.
Regarding your father, not everyone develops progressive disease with this virus; he should be evaluated as well for treatment, and take appropriate action as necessary.
The genotype of Hep C is like the “strain” of virus; there are several different types, and each one has different response characteristics. Genotype 1 is the most prevalent in the U.S.; and the least responsive to current treatment. Other genotypes (2 and 3) are less common, but are more responsive to the meds, and require less time in treatment.
The red blood vessels on your mom’s neck might be spider nevi… this is one of the signs of cirrhosis. She should discuss this with her doctor. Has she had a referral to a hepatologist yet? Or is she being seen by her primary care doctor still?
Yes that is what it was, spider nevi. She said she needs to watch them to see if they get worse. Also she is not seeing a hepotologist, he is a Gastroenterologist, and internal medicine doctor. I dont know why she is not seeing a hepitologist? My father is genotype 1 but not sure of my mother...
I'm assuming the diagnosis of cirrhosis, and the advice you've gotten, is from hepatologist, as opposed to a gastroenterologist. If not, your next step should be to see one, because they are best equipped to make this kind of diagnosis and to advise you of next steps.
But assuming you're already seen a hepatologist who you have confidence in, then yes, sometimes the diagnosis of cirrhosis is made without a liver biopsy, and in some cases a biopsy is not necessarily desirable.
As to what to expect, a lot depends on how much damage has been done, because cirrhosis is not just one category, but actually multiple categories. Simply, it's divided into compensated and decompensated. something you should ask your doctor. Depending on the damage, treatment may take different directions. But again, both the diagnosis, and treatment recommendations, should be from a hepatologist (liver specialist) who are usually found in your larger, teaching hospitals.
keep positive. We've had many here diagnosed with cirrhosis, and they're functioning quite well.
our last posts must have crossed, and I see that your mom missing a gastroenterologist.
Without being overly repetitive, the best thing you can do for your mom is to make sure she gets evaluated by hepatologist as soon as possible. Without going into details, and given the fact that there has been no biopsy, she very well may be getting incorrect and outdated advice, if her case is at all representative of many who are posted here. Indeed, she may not even have cirrhosis, or she may have cirrhosis but need treatment versus transplant. Of course I'm just speculating, but just seen too many screw ups by gastroenterologists here.
Ok, you’re getting familiar with the landscape already :o); good for you. A Gastroenterologist is a “gut” doctor; they deal with everything digestive, including the liver. A hepatologist is a liver specialist; their primary focus is livers. She may want to schedule a visit with a hepatologist down the road.
In the meantime, take a look at the Janis and Friends site I mentioned above; it well answer many of your question. Your mother and father might want to look in there too. If you want to, you can look in this list for an explanation of the acronyms used frequently in here; it will help decipher our conversations:
Again, most of us in here will suggest she not drink anything alcoholic at all until this is resolved; she doesn’t want to put anything in her body now that might cause her liver harm. She’ll also want to discuss any medications she’s currently taking (including milk thistle, vitamins, etc,) with her doctor *prior* to taking it; some meds can be very hard on our liver.
I am sorry to hear that your mother is has cirrhosis. But please don’t panic. How serious her condition is could vary greatly. I hope my comments help you to clarify this.
Since you posted your question here on this forum I assume the cause of her cirrhosis is Hep C. Is that correct?
You ask why she never has had a biopsy? I would assume that your mother is experiencing complications from her cirrhosis that you may not be aware of(?) plus the hospital did a number of other tests that confirmed the diagnosis. It may be dangerous to perform a biopsy at certain stages of the illness as there is always the chance of infection. Infections and other illness (pnemonia) can be life threatening to patient with very advance liver disease.
You ask about meds she can take to stop the progression of her liver or to keep her healthy...
I assume if she could still try antiviral therapy the doctor would have mentioned this. So the only one who know the answer to this question is her doctor. The answer depends how advanced her liver disease is. Stage 4, cirrhosis covers a wide variety of differences in the degree of damage to the liver. Patients with "compensated cirrhosis" may experience little or no changes to the way they feel. Their liver is still able to perform most of its functions relativity well. Whereas "decompensated cirrhosis" is the final stage of liver disease when the liver is unable to work properly and because of this there will be many much more serious symptoms that will manifest themselves. Until in time the patient will need a new liver to continue to live. I assume that your mother has decompensated cirrhosis which is why the doctor is talking about a transplant with you? Although there is a possibility that the doctor is getting your mother and yourself mentally prepared for a transplant in the more distant future which could be many years down the road.
In summary: You need to ask the doctor what is the exact status of your mother’s condition. Compensated? Decompensated? What symptoms should she be looking out for? How much time is there before the doctor thinks she will need a transplant?
You and your mother are entitled to this information. Don’t let the doctor beat around the bush. Only her doctor can supply you with these answers! This is a good time to start learning about liver disease and cirrhosis so you can best support your mother with her illness.
For more information on cirrhosis please visit the following links
The crazy thing is, she does have pnemonia and is not doing well fighting it off. She is in intinsive care right now. nobody seems to be saying much about it, while i am climbing the walls. They called us up there yesterday and said they didnt know if she was gonna make it through it. today she is up and talking and actually eating as well which she has not done in 8 days. I knew that her immune system was bad but damn i never thought i would have to worry about pnemonia or a simple common cold. I guess i never thought about it though. I just have to wait till I get her lab results back befor i go into a complete panic attack. I just need to pray and hope she pulls through this and then we can work on the treatment and her options. I do know i will no longer stay in the dark about this issue nor will i try to pretend my mother is just fine. She is very ill and i will not stop this fight. I will keep fighting for her and with her till her last breath... Thanks for all your help.
Take it one step at a time. I'm glad your mother is doing better.
There are many things your mother can do to manage her disease. So it is important to not only listen to the doctors but to understand the disease and work with the medical professionals get the best support for your mother.
Knowledge is power.
By the way I have Stage 4, cirrhosis myself. Luckily, I am in relativity good health and may still be able to treat with new meds that will be available in the next few years. Otherwise I am looking at a transplant myself. Meanwhile I'm trying to stay as healthy as I can for as long as I can and I am appreciative of all I have.
You brought tears to my eyes with your love and determination to help your mother, she is so fortunate to have a daughter like you.
My mother is also very sick and we have spent the last year fighting to keep her going (not Hep C or liver related) and we are making tiny steps of progress. I know how hard it can be and so frustrating but everything you do for her and your family will enrich your life and your heart.
You are a wonderful, brave, young woman, keep on keeping on and keep us informed.
There are clues from which a doc can make a guess at cirrhosis. Some were mentioned here. The results of all those lab tests may have revealed that an actual biopsy could be too risky. The patient's blood need to clot effectively to insure that are no post-procedure complication. As Za mentioned, the first time the doc saw me he said 'you have cirrhosis'. Although it was an educated guess, the following bunch of tests confirmed what he thought. The good news, and there is some, is that I was able to treat the hep-c (it took two tries) but I was able to get rid of it. There are many people here who also have treated with cirrhosis successfully. HCV is a tough disease and it takes a lot of control and discipline by the patient and a lot of support from those around the patient. Nothing is quick and not much is easy but good results are possible.
Thanks all of you for all the support! I do have some good news to post today about my mother. She is fighting the pnemonia finally. She looked better today than she has in the last 5 days. She finally ate something and the doctors tell me it is looking up. Oh god what a relief, I can breathe again... For now! I have talkied a little with my mother and I told her what we need to do to get her in the right direction. The wierd thing is, is that she has not been told alot of these things I mentioned to her. So she promised she will get a second opinion and see a hepatologist. I feel goog today!!! :)
i have a problem with my mom too and alot of times it breaks my heart. she doesn't have anything wrong regarding her liver, she suffers from alzhiemers and i took care of the liver end. i have a decompensated liver...ascites and hep C, this happened quickly and unforeseen. i am writing this to say this, sometimes i have my heart broken by the things my mom does or says and sometimes i get a little depressed for myself, but all in all stay as happy as you can, people sense that and it is contagious, it will help your mom and you and that's all you can do, and don't forget to tell your mom you love her. the power of hope and happiness goes well with all treatments and helps you to live your life. i always remind myself others depend on me and i owe it to them as well as myself
My husband has Hep C and Stage 4 Cirrhosis. Your mom will have to be monitored all the time now. My husband tried the new Hep C treatment and he could not continue because his platelet count went down to low. His liver is only producing 50 and it went down to 25 with the treatment. A normal platelet count should be 350 or more. You do have to listen to what the Dr.'s tell you. It *****. We have been married for 24 years and it is killing me inside. Our kids are really upset too. He does not want to have a liver transplant. I really cant blame him. He is only 50 years old. At this point I am enjoying each and every momment with him and we are living life. Doing things we want to do. He has not had a drink in over a year. Problem is the Hep C type one will continue to attack the cirrhosis. He has to go in every 6 months for a ultra sound, his esaphagus checked and blood work. Hang in there sweetie. I know what you are going through. It is not fun at all. Educate yourself on everything. Get second and third opinions. She will pull out of this and you will be able to enjoy some years with her. You need to stay positive and strong for her.
there is a med that will help slow the progress down but there is no cure the med is called xfaxan 500mg 2 a daythats what they put my brother on he has stage 4 cirrhosis if that help any one he also take lactulose 30 cc 4 times a day to help also.....
I live close to you and saw a gastro. dr in G. R. and he was no good, he told me I couldn't have a biopsy unless I consented to doing the drugs. I totally feel he is in this for the money and couldn't care less for the patient. Have your mom see a hep.dr. or an internoligist.
Is there where I post a question ? I'm not sure, well I really need a few answers if that's alright, I'm 18 and my father had stage 4 cirroshis of the liver, and the doctor wouldn't tell him much . He know about the treatment and it's very trying we've been told, and he had to go to a psychiatrist before they can begin to give him shots. He is 58 year old male , he's about 6'0 foot tall and weight about 245lbs, he has always been a very strong man and had been through a lot and has a few degenerated disc from falling out of a 30ftdeer stand and other things. He also has hepatitis C. So our main question is going through the treatments and the sickness every day worth how Long he has too live for ? How long he will he live if he doesn't get treatment ? Apprised to how long he will if he follows through with the treatment.
It is better that you post a question using the link at the top of the page that is brown and says post a question. That way, you are at the front of the pile, and start a new site where people can easily find you and reply. There are many, many great people here who have so much knowledge and kindness.
I am only 1 week in the triple tx, and so don't know enough to answer some of your queries.
Firstly, treatment is unpleasant, but varies so much from person to person. When you have killed the virus that is killing you, you have saved your life from this incidious disease. So, it is ALWAYS worth it. And with you caring so much for him, he has a lot to live for.
He could live for another 20 or more years, but it won't be HCV that takes him in the end, as long as he never does anything to re-infect himself.
What sort of doctors has he seen? A hepatologist is the specialist he needs to see to have the tests he needs to have to find out exactly where his liver is at. A biopsy will show how much damage there really is.
Be patient for more comments on your question. there are some amazing people here with a lot of information and testimonials.
I need to qualify something very quickly. IF he goes through treatment successfully, he can expect to live for another 20 years or more. If he doesn't get treated, it's a whole other ball game that could result in him dying of this incidious disease, and ESLD is not pleasant.
If you don't get any response from others soon, repeat your question again, without it being too much of a hassle, and post it under ' Post a question', you will very soon get responses. This particular post was a result of a question asked 4 years ago.
And good on you for doing this for you and your father.
My sister is Stage 4 and this was caused by Auto Immune Hepatitis. She has never smoked, drank or taken illicit drugs. She is on a transplant list. She has been told (just this past week) that hers is caused by a gene that is normally found in females around and has laid dormant from birth. It seems to activate around 22 years old. They do not know from studies they have done what activates that gene around that age. She has had a couple of liver biopsies and has also been told that Stage 4 cirrhosis can go Into cancer and when her liver fails can get a transplant but there is no guarantee that the gene will not destroy it. She gets regular labs, scans and MRI's. I have been with her at doctor appointment and looked at scan and the cirrhosis is very apparent.
Please tell me what your diet is...if you don't mind. I know someone who has stage 4 and he can keep very little down. He has non alcoholic stage 4. How many grams of protein/day at e you taking...any supplelements? Any insight would be helpful. I want to help this man.
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