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Posted 8/29/2008 3:20 PM (GMT 0)

 

 

 

Good morning,

 

I am new to this and hope its ok to ask some questions about my husbands sickness. My husband and I were told about 15 years ago that he had hep c, he never really had any symptoms until dec 2007 when he ended up in the hospital because he was yellow, they did a bunch of test and told us he needed a liver biopsy. The first one was to small of a piece to really get a reading even though the first MD said that he only had a little cirrhosis and the second one we just got back yesterday with stage 4 cihhrosis and grade 3 hep-c.

 

Since the first one was what it was i really wasnt that worried and then when they called yesterday and gave me this news I was totally unprepared and deffinetly unprepared to give the news to my hubby, i immediatly went searching on the web and found you guys, Thank God!

 

My biggest question is how many stages are there with cirrhosis and how long does each one take.

 

Thank you all for being here

Posted 8/29/2008 10:15 PM (GMT 0)

Jlg, I'm glad you found us.  Welcome.  I was diagnosed with hep C in '93 and was followed for years with a yearly CT scan and blood work every 6 mos.  The scans came back as "no evidence of cirrhosis."  However, I did develop liver cancer and had the rt. lobe of my liver removed in May '07.  At that time, a biopsy of the left lobe was done, which revealed "mild" cirrhosis.  I'm guessing that would be stage 1.  I am seen at Mayo and they never refer to the hep or cirrhosis in terms of stages.  I think the most important thing is symptoms.  If symptoms worsen, then you know that the liver disease is progressing.

A lot can be done to slow the progression of cirrhosis and liver disease in general.  Diet is very important.  A diet of mostly fresh fruits and vegetables, with no red meat and low in iron, seems to work the best.  Symptoms are treated as they arise.  For example, I am on Lasix and Aldactone for edema and ascites.  Did your husband undergo treatment for the hep C?

Perhaps you will find more information reading some of the older posts, especially the "education" ones.

Connie

Posted 8/30/2008 12:06 AM (GMT 0)
Hi Jlg, I am sorry that your husband has this terrible disease. My husband does also. Staging describes the degree of fibrosis or scarring. When the doctor says he has stage 4 it means he has cirrhosis.

I am glad you found us. There are very many helpful people here.

Take care.
Posted 8/30/2008 4:17 AM (GMT 0)
Hello jlg1964 and welcome to HealingWell. So sorry that you are going through this with your hubby. Been there and done that. Wasn't a fun trip.

I know how you feel when you say you don't know how to break it to your husband. When they took my husband off the list ........I didn't know how to break it to him. It was one of the hardest things that I had to do in my life.

My heart goes out to you......thoughts and prayers..............
Posted 9/3/2008 2:46 AM (GMT 0)
Hello, Jlg....welcome to Healing Well. I am also a new member. My husband also has Stage 4 Cirrhosis and Hep C. He was diagnosed 4 years ago and until the last year had been doing "okay".....The length of time and degree of how bad they feel can truly vary from person to person. But, diet is very important. We have been told to stay with a low sodium diet and we are careful about the proteins he eats....have you checked into interfuron treatments?? Also, does he drink? If so, he needs to quit. There are those that can successfully treat with interfuron treatment, stopped drinking and it really slowed down the progression of the disease. My husband was diagnosed 4 years ago, and until last year was doing okay. He was not able to continue his interfuron treatments due to some issues he had with it, so we have been very blessed that it has just been in the last year that has been the bumpiest ride. There is alot of verry good informatiive information on this forum......and I wanted also to tell you to hang in there!! I know what you are going through!! God Bless You!!
Posted 9/3/2008 3:00 AM (GMT 0)

Jlg, have you told your husband yet of his cirrhosis?  These days, hep C is generally treated with a combination of interferon and ribavirin, known as "the combo."  It is usually one injection a week and 2 pills each day.

If you read some of the education posts, you will get a better idea of liver disease and what to expect.

Hugs,

Connie


Post Edited (hep93) : 9/3/2008 9:44:38 PM (GMT-6)

Posted 9/3/2008 9:12 AM (GMT 0)
Hi Jlg and welcome to the forum.

I too am horribly sorry that you and your husband are on the road of liver disease. I too just found out in January that I have cirrhosis and I know how devasting that news can be. It is a lot to deal with in a short amount of time. As others have said that are several good educational posts regarding the stages of liver disease that may help you understand the damage and symptoms your husband may expereince.

This forum is full of supportive people that are going through similar situations as yourself and I hope that you gain from it as we all have.

Lucy
Posted 9/3/2008 7:29 PM (GMT 0)
I thank you all for your invaluable information and your support.

I gave my husband the results on friday, stage 4 grade 2... we are both still in shock. I am trying to get as much info as I can so we can both figure out what to do next. After I posted my question I didnt know what to do so I ran to see his doctor only feeling more frutrated than when I walked in. I need to know what I can do to make this better I feel so helpless ans scared. So far I have started to cook much healthier, I made his appointment for an upper GI and a sonogram scheduled for friday, I have spoken to someone about getting him on a new drug that is being researched called telaprabiar, he told me to call him back next week to give him time to look over jorges file to see if he qualifies and now I feel like I am just waiting for something to happen.

Mer, you asked if he drinks, no he quite that 5 years ago and I did check about the interfuron but my insurance doesnt cover that, That is the whole reason why we went to the U of M was to be able to get the state to help with the meds but I guess there is a new medication that they want to research so we are waiting to see what they will do.


Thank you for all your help everyone.
Posted 9/3/2008 7:47 PM (GMT 0)

Jlg, I know how frustrating and slow the process can be.  However, you are doing the right things in being your hubby's advocate.  Next time you go grocery shopping, load up on fresh fruit and vegetables for him, as well as good spring water.  At a minimum, he should be taking a multivitamin (WITHOUT iron) and 500 mg of vitamin C daily, to make sure his nutritional needs are being met and to boost his immune system.  The results will show in his blood work.

Please be sure to let us know how things are going.

Hugs,

Connie

Posted 9/3/2008 10:23 PM (GMT 0)
I support the posters that mention nutrition as the best thing you can do. I would definitely consider a new treatment if you can't afford interferon.
They look after trial patients very well and its free (sometimes you even get paid). Scarring and cirhossis are not reversible so the best thing you can do as an advocate is to do everything you can to boost his immune system, reduce stress on the liver (with nutrition), and try to reduce stress generally.

Best, Cary
Posted 9/3/2008 11:50 PM (GMT 0)
First time in here and I need help/advice quick...My uncle, age 55, has been diagnosed with liver disease, I assume alcohol induced since I heard his DR. tell him to join AA, he's at home for 2 weeks now after a 7 day stint in the hospital. He's very yellow, he has ascites, I think he has many of the symptoms of encephalopathy. Shouldn't he be in a hospital? He saw a Dr. today, whom still hadn't received the hospital records, but the Doc snethim home anyway! Does that seem right? Oh...no insurance...
Please help. Should we get him to a hospital?
Posted 9/4/2008 12:25 AM (GMT 0)
Hello Tman1 and welcome to HealingWell. Sorry that your uncle has this yucky disease but you have found the right forum. What kind of meds did they give him? Does he have a caregiver?

Did they give him and liquid medicine like Lactalose or Enulose? It's a thick syrupy medicine. If so he should take as the doctor prescribed. It's nasty but it does work to rid the body of the ammonia toxins and clear up the encephalopathy through bowel movements.

If they sent him home then probably he doesn't have to be in the hospital. When you are first exposed to this disease it is very scary. Getting educated is the best thing for you to do. If he runs a high fever, has trouble breathing, you can't wake him up or he is so confused that he can walk very well or communicate very well, that's when you need to take him to the ER.

Hope this helps......keep reading our older posts...........thoughts and prayers......
Posted 9/4/2008 3:52 AM (GMT 0)

Tman, welcome to the forum.  PinkGrandma has given you excellent info and suggestions.  There is really nothing more that a hospital can do for him right now.  The most important thing he can do, if he wants to live, is to stop drinking all alcohol immediately!  If he is unable to stop, he needs to go to detox.  And I also recommend AA so he will stay abstinent.  He may be given Lactulose for encephalopathy and a diuretic for lower extremity edema and/or ascites.  He should also be under the care of a liver specialist (hepatologist.)

Connie

Posted 9/4/2008 10:50 PM (GMT 0)
Hi Jlg, I just wanted to say I know how you feel. My husband is stage 4 grade 3. He is actually doing pretty good. When we first got the news, I was so afraid. I felt so lost and confused. I was afraid that any day I was going to wake up, and he was going to be gone. After doing research and coming here, I have learned to calm my fears. The only thing we can do now is manage the symptoms and take each day as it comes. I still feel sad and alone at times, especially when the encephalopathy sets in, but I am learning to deal with that a little better. Everyone here has been very helpful.

Hang in there.

You will be in my prayers.
Posted 9/4/2008 10:55 PM (GMT 0)
Hi Tman, Just wanted to welcome you to the forum. I am sorry that your uncle has this terrible disease. Connie and Pink Grandma are right. I know if a person has never seen what cirrhosis can do it can be very scary. It can also be confusing since it effects people differently. Coming here and researching the disease has helped alot. I hope you continue to come back. There are many caring people here always ready to listen and help.
Posted 9/5/2008 3:57 AM (GMT 0)

Jlg, what is that trial med for?  Hep C or cirrhosis?

Thanks!

Connie

Posted 9/5/2008 7:46 PM (GMT 0)
hep 93,

The trial me is for hep c


Thanks for asking


Jackie
Posted 9/5/2008 8:30 PM (GMT 0)
I am wondering if someone can answer a few question,

we just got back from getting the upper GI and sonogram no results yet from sono but they said that he has Portal Hypertensive Gastropathy and by the time they let me in to see him the MD was gone so I am wonering if this is going to turn into a complication or can we do anything to prevent it from doing so, also he complains of severe joint pain and sharp pains in his liver, I know that the joint pain is a symptom but I havent heard anyone complain of sharp liver pains?

Thank you
Posted 9/5/2008 10:43 PM (GMT 0)

Hi, jlg.  Thanks for the reply re: the trial med.  After I posted, I felt sure it must be for hep C, as there is no current medical treatment for cirrhosis (as far as I know.)  I want to ask my hepatologist about the study drug when I see her on Tues., as I'm still not sure about doing the combo (interferon and ribavirin.)  I wasn't able to tolerate interferon by itself when I was first diagnosed back in '93.

In answer to your question, portal hypertension is responsible for esophageal varices and bleeding, so yes it can be a huge complication.  Abstinence from alcohol is absolutely essential!

Hugs,

Connie


Post Edited (hep93) : 9/5/2008 4:52:47 PM (GMT-6)

Posted 9/5/2008 11:48 PM (GMT 0)
Hi Jlg, My husband also has portal hypertension and grade 2 varices. The varices caused by portal hypertension can rupture and cause bleeding. The doctor will probably prescribed something to help prevent this. My husband takes Nadolol. He was also told to avoid NSAIDS because they can cause bleeding. Ibuprofen is a form of NSAIDS, so he should not take it. I know all of this sounds very scary, but there are things that can keep some of the bad things in check. Keep up the research. It has been very helpful to me. As far as pain in the liver, I have heard other people complain of this, but my husband hasn't had that complaint.
Posted 9/8/2008 8:41 PM (GMT 0)
Hi everyone,
I just wanted to say that I am so thankful that I have all of you because otherwise it would be much harder on me because I try to keep my spirits up for my hubby and my kids and as I am sure you all know sometimes that could be harder than it sounds, my 22 year old son will be coming out of a drug rehab in about 1 month and at first I was debating about telling him about my husband but then decided to tell him so he could deal with it emotionally before he gets out which another stress that I have because I know they say part of recovery is relapse which he did after I told him the news but I just dont think I or my husband could handle one more relapse. I have my other son 15 years old that is very internal and a good boy but he is still a teenager! I found out today that he skipped school the day after I told him about his dad, and last but not least I have my 5 year old that is our sunshine.
my husband is doing pretty good with the low fat low salt diet, that has made a big difference with his liver pains nut as far as his joint pains he has been taking a pain pill that the MD prescribed, at least now he can get off the heating pad.his eyes still look very tired.still no results from the sono also while we were at the hospital I asked the medical records for a detail report of his biopsy and they said is was growing??? they gave me the results but nothing to support this the reason that I wated that was we had a biopsy done in may and that one came back stage 1-2 and now this one a 4. the explanation was that the first doctor in the other hospital did not take a big enough piece out so I guess until I can get that I will be in denial.

Just trying to keep it together!

Jackie
Posted 9/8/2008 10:17 PM (GMT 0)
Hi Jackie, It sounds like you really have alot to deal with right now. Hang in there and keep praying. Things will get better. I have 3 kids also, 22 year old son, 20 year old daughter and 14 year old daughter. They are learning to deal with their dad's illness. I know it is hard for them at times.
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