Hep C w/Cirrhosis - waiting for approval for treatment

[tbrown1203]

I am new to the site.  I have had Hep C for about 25 years.  I just got the Cirrhosis diagnosis and am waiting for approval from my insurance company to treat the Hep C.  Just looking for as much information as possible on the Cirrhosis and the treatment.

[lporterrn]

Welcome. Sorry about the cirrhosis - that's tough. Have you read the info on this site? Do you know your genotype and what treatment will be prescribed? Do you have any specific questions? There is lots of experience here, so feel free to dive in.

[tbrown1203]

I am Genotype 1.  Never received treatment yet.  I am really interested in learning more about what happens with the cirrhosis after the treatment (if it works).  If I continue to not drink or put other toxins in my body do I have a long happy life ahead of me or is this something that is going to continue to progress.  I have so many questions and can't get in for a follow up (from by biopsy) till January.  Ugh.  My score was a 4 on a 0 to 4 scale for the fibrosis.  I don't know what any of this means. 

Where and what should I be reading and looking for on this site to answer some of my questions.  I just trying to figure it out.

[tbrown1203]

They are trying to get the 12 week Harvonti approved.

[lporterrn]

4 indicates cirrhosis, but there is a big difference between early cirrhosis and late (or decompensated) cirrhosis. Sometimes early cirrhosis is reversible. Whether it progresses depends on lifestyle (as you already discovered) and luck. Regular medical monitoring is critical. Good rapport with doc helps. It takes time to learn this disease and the lingo, but there is lots of help here, and others in a similar condition.

[AllShookUp]

Eradicating the virus and living a healthy liver life style will most likely stop progression. Definitely lowers the odds for developing other fatal conditions/diseases. Some people experience improvement/regeneration of liver over time.

Lots of good information to be mined from this forum. Dig around.

[andrew j]

Hopefully Lynn will chime in.

She knows a lot about cirrhosis.

[gnatcatcher]

tbrown, since they are talking about 12 weeks of Harvoni, and they aren't talking about adding Ribavirin, it sounds like you probably have what Lucinda Porter called early cirrhosis (also known as compensated cirrhosis). That was my situation. Not only did 12 weeks of Harvoni cure my genotype 1 and bring my liver enzymes (AST and ALT) way back down into the normal range, but my liver improved from F4 to F3, so my record now says "fibrosis" instead of "cirrhosis." You can see the details in my sig file. Sorry about all the abbreviations (the sig file has a character limit), but there's a thread that explains all the acronyms:
https://forums.hepmag.com/index.php?topic=3889.msg43678#new

My hepatologist believes I can still have a normal lifespan. By all means, put that question to your doctor -- you'll probably be pleasantly surprised.

[tbrown1203]

What should I know about diet?   Obviously avoid alcohol, etc.  but is there foods I should avoid or increase?

[andrew j]

There will be resources here - but I think you should be able to find good info
simply by Googling it.

[gnatcatcher]

Here's a good web page on the subject (it was written before Harvoni, hence the reference to interferon and ribavirin, but the dietary information is still applicable):
http://www.hepatitis.va.gov/patient/daily/diet/single-page.asp

[Philadelphia]

A sensible healthy diet is what you need. Low in sugar and salt, high in fresh, non-processed foods. Fruit, vegies, whole grains. It's not hard, and any diet that us called a healthy heart diet will be helpful.

Get some exercise every day. Drink plenty of water. Enjoy yourself and don't get pulled down into worry.

Lynn and I both gave cirrhosis, we both work, both have full lives, both are busy. There's lots of us here. I'm a school principal and hold down a challenging full time job. It's important to look forward and face this positively.

Good luck!

[Lynn K]

Hi and welcome

As Philadelphia has said we both have cirrhosis and lead full lives. I was diagnosed in January 2008. I was being followed closely after I was diagnosed with hep c in 1990 which I probably contracted in 1978-1979.

As far as diet one thing you could google is a heart smart diet which is also a liver smart diet.
The most important thing is to have what ever testing your doctor recommends and to be under the care of at least a gastroenterologist or even better a hepatologist.

When I was diagnosed with cirrhosis on my 4th liver biopsy (I was having a liver biopsy every 5 years) my doctor had me get the hep a and hep b vaccines as well as a pneumonia vaccine. He also had me have an upper endoscopy to check for enlarged blood vessels in my esophagus which I did not initially have.

The good news is that with cure there is some evidence we could improve with time alot depends on how much liver damage you already have.

We will need to be followed probably for life with blood testing and abdominal ultrasounds every 6 months as we will be at increased risk of liver cancer because we have cirrhosis but even that risk will decrease with cure.

Basically, eat healthy, have the tests your doctor wants you to have, don't drink and use caution with pain relievers with Tylenol taking no more than 1200 mg/day. When I was diagnosed with cirrhosis. I was surprised to learn Tylenol is the preferred pain reliever, when taken correctly, for those with cirrhosis.

But with cure of hep c we can live the life span we were meant to and die from something other than liver disease.

Good luck with treatment and come back with your questions. Just wanted to add per the AASLD treatment guidelines (American Association for the Study of liver Diseases) the recommendation for those who are treatment naive genotype 1a with compensated cirrhosis if treating with Harvoni.

"Daily fixed-dose combination of ledipasvir (90 mg)/sofosbuvir (400 mg) for 12 weeks is a Recommended regimen for treatment-naïve patients with HCV genotype 1a infection who have compensated cirrhosis."

There are other treatment options but Harvoni works quite well and did finally cure me when I had treated unsuccessfully 4 times before. I was also Genotype 1a but a multiple treatment failure with the old medicines and with cirrhosis and I was cured.

You will be cured too believe it!
Lynn