Just diagnosed HCV and cirrhosis

Dear Doni,

All is not lost...though you have been diagnosed with a very serious disease.

And liver disease is not for wimps!

The folks on this forum are patients and loved ones of those affected by various liver diseases.

My partner, Mike, has had Hep C since 1969 or 1970. There are many ways to get the virus in your system...transfusion before the blood was tested for it, needle stick or iv drug use, tattoos before the parlors were better regulated, folks during the Vietnam war were inoculated with guns used down the line...so they got one HCV GI and they got them all! And there a lots of other liver diseases too!

What is done is done. The disease has been running its course and just now become symptomatic....

Mike made the mistake of continuing to drink alcohol after his diagnosis and made himself sicker, sooner.

But it took from 1969 - 2009 to make him sick enough to get to a doctor. He did try a Hep C treatment in 2003, but that didn't work for him and made him quite sick with the side effects. And by the fall he was so sick we thought he would die....every bad side effect in full bloom. But he didn't die. He got into a transplant program at U Miami/Jackson in Miami FL and was transplanted in May 2011. He is doing pretty well now....not perfect, but pretty well.

And of course a new liver only buys you time...cause you still have Hep C. Folks with other kids of liver disease that are transplanted are more out of the woods as their disease process is GONE. Mike's cirrhosis is gone, but not the evil Hep C.

The appointments you have set up are the right ones.

The labs you have show damage to your liver. You will need to have a liver biopsy and an MRI before they can tell you for sure how bad it is. Your AST/ALT are high, but not through the roof. Even after transplant, my Mike's HCV Viral Load is over 5 million like yours! And he is WELL. His AST and ALTs are about the same also. Your billi is elevated also...which can be a problem. But one of the members wives report her hubby's Billi is over 30 this week! Now that is HIGH.

The "good news" is that for the last 20 years they have been doing research like crazy to find effective treatments for Hep C. In the early days, the patients were as sick as if they were on the worst chemo and it only worked SOME of the time. The new treatments, are shorter and more effective. They are looking for ones less toxic to the patient. I would think your doc will want you to get into one of those programs.

Right now, Mike can't do another treatment because he isn't strong enough after transplant and his kidneys are not so great either....he waits. It takes a long time for Hep C to do in a liver....so he has time I think.

I don't think it is time to call the undertaker. It is time to take stock, eat healthy, stay off ANY alcohol...Mike won't even use mouthwash with alcohol at this point!

There are some good links in the Resources folder at the top of this forum and we have a lot of members. Ask us anything...Tell us how you are feeling...we are here..and will try to help.

I usually helps to know you are not alone in this. Read the other posts...we are a good bunch!

Best,

MamaLama from Florida

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MamaLama
Forum moderator - Hepatitis


Partner received liver transplant May 1, 2011, Jackson Memorial, Miami, FL

Thanks MamaLama. I am reading everything I can, which may or may not be good, but I want to be as well informed as possible. Right now I feel like my head is going to split wide open from stress of waiting to hear exactly what I am facing.

Then there is guilt. I feel stupid that I never found out about this because I never went to the doctor because I didn't have insurance. If I had known about this a long time ago I never would have drank alcohol and would have taken better care of my diet etc.

I am scheduled for the hernia surgery and gall bladder removal on the 22nd. The hematologist said it is more risky due to my diagnoses and my platelet count so now I wonder if I should reconsider or postpone until after the GI appointment. The hernia is incarcerated and causing some significant discomfort, I go for pre-op appt. tomorrow and guess I will decide then.

I think the hardest thing is dealing with family members who keep telling me that they are sure the doctor will fix me right up in a couple weeks and then things will get back to normal. I know this is not true but what good is it to yell at them and tell them they are just in denial. My husband is aware and understands what we are facing. He is depressed but promises to be supportive and help me through whatever I decide I need to do. We have been together 36 years and I know this is going to be almost as hard on him as it is on me. I'll be around here a lot I am sure because I am just at the beginning of this long road. Look forward to getting to know some of you who have experienced this.

Hi dd,
If your liver isn't cirrhotic and you live properly (see above - ML) you are likely to get to take one of the new treatments for Hep C. I went through ESLD, then a transplant and twice did the interferon/ribavirin treatment. I am 16 months undetectable now. In the next year or two it appears there will be at least one treatment that knocks out the virus for most patients.

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nullum beneficium impunitum...

         one more thing to share with your doc.. i ran across a study going on for cirrhotics that is recruiting in aurora colorado.  it is for cirrhotics with portal hypertension with or without decompensation.  its all oral(no interferon).

           contact;  jonathon kong

           e mail;   334-0125@gilead.com

           trial#;    nct01687257

              hope this is allowed             barry

Welcome, Doni. I was diagnosed with hep C in '93. There was no specific test for it prior to that. I know I contracted it in the late 60s. I tried the only treatment available at the time and it caused my white count to drop so low that I was taken off by the doctor.

After your GI referral, depending on the results of the biopsy, I think you should request a referral to a hepatologist (liver specialist.) I lived okay with hep C until 2005 (except for such exhaustion I could no longer work full time.) Then an annual ultrasound showed a huge cancerous tumor (filling the entire rt. lobe and metastasized to the inferior vena cava.) I went to Mayo, was treated, had that right lobe removed. I was okay for 4 yrs., then developed a tumor in the left lobe, requiring transplant. I was on the "list" for only 3 mos. before I received my transplant in Oct. '11. I still have hep C and treatment has been placed on hold for now. I've had some problems since transplant, but I'm still here. I've had 8 more years than I should have had.

I can't add more to what others have said regarding your labs.

If you're doing research, please check out Hepatitis Resources on this forum, pinned at the top. Lots of good info in there. Otherwise, don't troll the Internet except perhaps for the American Liver Foundation.

Hugs,
Connie

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hep93
Forum moderator - Hepatitis


"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland

Liver transplant recipient, Oct. 27, 2011, at Mayo Hospital, Jacksonville, FL

Thanks for all the good advice. It does help to hear from those who really understand what I am feeling right now.

My surgery was canceled after the surgeon saw the CT and most recent labs. He just said it is too risky and would have to refer me to someone else. I decided that getting to a hepatologist and getting some of my questions answered are more important right now and I can deal with the hernia and gallbladder when I have more info.

Barry I am not in Denver anymore. Sure wish I was. My husband was laid off almost 2 years ago so we moved to IL because I had a job offer here with family. My 3 kids and 6 grands are all back in Denver and I will eventually go back there. Of course Mr. DD is working now and has the insurance so we are stuck here for a while anyway. :(

I have an apt with GI doc here on the 31st. This is a small town and there are no hepatologists here so I called to see if I can get in to Barnes Jewish/Washington U in St. Louis. They are waiting on my medical records and will let me know how soon they will see me based on what they find. I know that might be a longer wait but I think I will have more options and better care. Just waiting now, and that is the hardest part.

Jmom,
Not to nit pick, but the military didn't use unsterilized needles, they used guns that literally blew the meds through one's skin. There is speculation that people did become infected that way, but I have yet to hear of proof of that. There is a higher percentage of people with Hep C who served in the military, but it could have been from haircuts or other means.

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nullum beneficium impunitum...

Jmom,
You're correct - it doesn't matter how any of us got Hep C. What counts is trying to conquer the disease.

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nullum beneficium impunitum...