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Stage 3 Grade 2

My wife has had Hep C for approx. 22 years. She has also had Crohns Disease for about 30 years, with 3 major bowel resections. Due to her past surgeries and general poor health we have been told that she is not a candidate for a transplant or the interferon/ribavirin treatment.  A recent liver biopsy came back Stage 3 Grade 2. In 2009 her first liver biopsy came back Stage 2-3, Grade 2. Her over all health is getting worse, fatigue, weakness, weight loss, muscle and joint aches and mental confusion. We have an appointment with a new liver specialist next month to go over everything again. I realize no one can know for sure, but are we looking at months or years? After her 2009 biopsy, she came back and had 2 great years (generally felt good, with a lot of good memories and fun times). Could she get better again? Praying she does. Searching for information.
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Avatar universal
Hi BayouGuy,
I am sorry to hear about your wife's Hep C and other complications.  It must be very difficult to see her in pain and not feeling well with her Crohns and at the same time knowing that her liver damage is progressing.  
I don't know a lot about Crohns and other gastro problems.  I can say that with regard to her Hep C, a liver specialist is where you need to be right now.  Hopefully the hepatologist that you will be seeing is experienced in treating Hep C and hopefully he/she practices in a large university hospital or medical center.  
Stage 3, Grade 2, to my understanding is approximately in the middle of the last stage of fibrosis before transitioning into Cirrhosis.  There are 4 stages of liver damage, and stage 3 includes extensive scarring with bridging fibrosis and perhaps some connections between the bridging fibrosis.  Essentially this means that healthy liver tissue is being replaced by more and more scar tissue that is connecting together.  
Only a liver specialist might be able to guess when that transition into Cirrhosis might occur in your wife's case.  Only a liver specialist might be able to guess at how long she might live with Cirrhosis, taking into consideration her other health concerns.  
People can live for a long time with Cirrhosis (stage 4), my husband's hepatologist told us an average of 10 years, but over time as Cirrhosis continues to progress, the liver has an increasingly hard time functioning properly, complications arise, and people with severe Cirrhosis become more ill as their livers stop working well.  
Given that your wife already has other health concerns, Cirrhosis is definitely a condition that she can hopefully avoid as it will add more burden to her liver and her overall health.
If she is Stage 3 Grade 2 liver fibrosis, it seems unlikely to me that her liver damage is causing all the symptoms that you described weakness, weight loss, muscle and joint aches, and mental confusion), although I could be wrong.  These are all symptoms of advanced liver disease, but from what I've read, much more advanced than Stage 3 Grade 2.  The fatigue, yes, I think that could be a symptom of the increasing fibrosis at the stage you mention, but the other symptoms seem more typical of farther advanced liver damage.  
The interferon based treatments for Hep C are very difficult on the body's immune system, digestive system, etc.  I'm assuming that's why her doctor said she wasn't a good candidate for current Hep C treatments.  Yet Hep C is what is damaging her liver and compromising her health, along with her other medical problems.  
There are new treatments that will be non-Interferon based on the horizon, but they won't be available for a 2-5 more years.  
Again, getting in to a hepatologist right away is the best thing to do.  He/she will be able to best advise and work with her Gastroenterologist on both liver and intestinal problems.  
I wonder if there might be another underlying condition that is causing the symptoms that you described?
I hope someone else more knowledgeable will chime in, but I did want to reply to your post, wish you and your wife the best, and bump this thread up so that others will reply.
Advocate1955
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Avatar universal
Just wanted to give you some moral support, BayouGuy.  I know how difficult it is to watch your spouse get sicker  and that feeling of helplessness you feel. I can't offer you any advice medically but I will say is to try to make the best of every good day she has.

Was she evaluated by a transplant center?  She would need to be referred by her doctor.  Did he come to that conclusion himself (that she isn't a good candidate)?  I think you are doing the right thing getting a second opinion.  Hopefully the new doctor you are seeing is very experienced in seeing people like your wife.

I wish you and your wife hope and strength for the future.  Keep us posted.
Best,
Nan
Helpful - 0
1815939 tn?1377991799
Welcome to the forum.

First, I am very sorry to hear that your wife is so ill.  

I cannot answer your question about how long your wife has to live. There are many variables and no one knows for sure.

Could she get better again? I think that depends on many factors. Again, I am not sure anyone knows the answer for sure.

I do not know where you live but I am assuming you live in Louisiana or a (very) nearby state. I think it is a very good step that you are taking in seeing a new hepatologist/liver specialist. Preferably this liver specialist is affiliated with a University affliiated medical center, preferably a liver transplant center. With your wife's complications a hepatologist should be following her and managing her care.

I have attached a couple of links to articles. In these articles they do discuss treating Hep C positive people (who also have Crohn's Disease) with Interferon and Riba, so it has been done. I am not saying the hepatologist will treat your wife for Hep C, but, by seeing a competent hepatologist who is knowledgeable about treating complicated patients and who is (hopefully) affiliated with a University affiliated medical center, at least if your wife can be treated, then that doctor should know how to manage your wife's treatment.

I would not give up hope. There is always hope. By going to the most knowledgeable hepatologist, you are giving your wife the best possible advantages for possible treatment.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2950671/

http://www.ncbi.nlm.nih.gov/pubmed/16883071

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2950670/

Best of luck.

Helpful - 0
1840891 tn?1431547793
I'm so sorry to hear of your wife's multiple illnesses. I don't know very much about Crohn's, but I do know that even stage 4 cirrhosis is not an immediate death sentence. I was given the stage 4 cirrhosis diagnosis back in 2005 and I'm still doing fairly well - my liver disease is still fully compensated and I'm currently in my third treatment and hoping to beat it this time. I strongly second the previous remarks about the kind of doctor your wife needs to see. Please make sure it is a hepatologist and try hard to get to see one at a large teaching hospital, where someone with multiple health problems can see  different kinds of specialists and the doctors are much more likely to communicate and coordinate the care. Thank you for being a loving spouse for your wife through this very difficult time - I'm sure your support is making a huge difference for her. Best wishes!
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Avatar universal
Thanks to everyone for your responses. We have an appointment with a liver specialist on August 14 in Houston (Methodist Hospital System). I'm hoping they can help shed a little light on my wife's prognosis.
Thanks again
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Avatar universal
The liver specialist is the best option. I would some how try and find a doctor that will treat the HCV while being "closely monitored". If you can eliminate this from other health issues it will help her the most. Hopefully the specialist you are seeing will offer HCV treatment as an option.

Best of luck to your wife and you
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