now what

[hopeful51]

For the past year all my docs talk of getting me into new trials...yada..yada..yada The 7977 trial says I am the wrong geno type I am 1a so no go went back to doc to get into triple therapy and now  it appears my liver is to cirrhotic  to treat safely..so if I do treat it has to be at a transplant hospital. U of Washington. So I asked him in your opinion gimme an idea of how long with the amount of damage to my liver he said may 3 to 5 years when I started to cry he said no one really knows could be 10....ya right.... any body else hearing this. if so what are yous thoughts, plans, how are you handleing it.......irony  is I feel great...am thankful for that....gez I'm only 61.
My thoughts are with all of you always.
take care be stong

[Advocate1955]

Hi again,
In looking back over your past posts, I see that you had a liver biopsy and were diagnosed with Cirrhosis awhile back.  I also see that you've treated before.  I really want to encourage you to get an appointment with a hepatologist right away.  Hopefully you can treat with either Incivek or Victrellis as soon as possible so that you can prevent your liver from becoming decompensated.  If your liver becomes decompensated, it will be much more difficult, if not impossible, for you to treat.
Advocate1955

[Advocate1955]

Hi hopeful51,
I'm sorry to hear that the trial didn't work out for you, and I'm also sorry to hear that your doctor says that you have Cirrhosis.  As Pooh mentioned, my husband's hepatologist is that the University of Washington Medical Services and Transplant Center.  Her name is Dr. Battacharya, and we really like her a lot.  She's very knowledgeable, her follow up is excellent, and she's very nice.
Another forum member, brianmo, lives in Washington and was treated successfully at Harborview Medical Center, which is also part of the University of Washington.  Her hepatologist is Dr. Shuhart, and she spoke highly of her.
How and when did your doctor determine that you have Cirrhosis?
I currently am not aware of any trials in Seattle available to people with Hep C and Cirrhosis (as my husband is waiting for one too).  I think the best thing you can do right now is get a referral to either Harborview or UW Medical Center and see a hepatologist as soon as possible.  Since you haven't treated with either Incivek or Victrellis, and your liver is still compensated, you should be able to treat with one of those two drugs.
If you need any help with anything, send me a private message and I can give you my contact information.
Advocate1955

[HectorSF]

Hi. I am very sorry your doctor's bedside manner was so poor. It might be one thing if it was a fact, but he was merely throwing around numbers. No one can say how quickly any patient's liver disease will progress.

No one can say how long someone will stay compensated like yourself ("I feel great")(compensated cirrhosis means you have few if any symptoms) and some of us even have normal blood levels. If and when when a patient become decompensated (this is when the liver can no longer perform all of its functions and you can develop ascites, bleeding varices and HE) it is not the end of the world by any means. Your doctor was very wrong to quote a number of years. No one has a crystal ball. Each individual is unique. I have been decompensated for four years now and I am still kicking! And plan on living for a number of years if I can help it.

The issue is what can you and should you do now.
While you are still compensated you can still treat your hepatitis C and if you SVR you will stop further damage to your liver at least from hepatitis. So please go to the transplant center as soon as you can. You may need a referral from your current doctor for them to see you. They will perform a complete workup of your liver disease and your overall health. Then your hepatologist will work with you to find the best Hep C treatment available for you.

So you see... you still have many options to choose from. Your cirrhosis is in its early stages. Your liver may be able to repair itself if you can rid yourself of the virus. Treatment should be your goal now. Don't let anybody steal your hope. Hope can get you through things you thought were impossible.

"any body else hearing this. if so what are yous thoughts, plans, how are you handleing it.......irony  is I feel great...am thankful for that....gez I'm only 61."

I am 60 years old so I can relate age wise that we are too young to die. We have other times we want to do before we are done.
So how have I handled it? Luckily I hooked up with a transplant center when I first was diagnosed with cirrhosis in 2007. The was the smartest thing I did right from the start. My hepatologist would never say you have so and so amount of time that's for sure. She has told me many things that have been difficult to deal with but I always insist that I know exactly where I stand so I can make the best choices among the options I have. Personally if I am to die I want to know it so I can die that way I want to die and prepare for that. She told me I had liver cancer last June 1th. That was not easy I can tell you. I knew that liver cancer is a terminal cancer. The only cure is a transplant before the cancer becomes unmanageable. So I wait...I the next 5-6 months I hope to get a transplant.
So we all do the best we can. We are not perfect. We have bad days but we pick ourselves up and carry on another day.
Like everything else in life you adjust and learn to live with it. Whatever the latest development is. It is an emotional roller coaster there is no doubt. Luckily we are older and have dealt with life's challenges to we deal with it as another life challenge. Plus I have a lot of support from family and friends and fellow transplant recipients. A therapist helps too when you are deal with the issue of death as most people are uncomfortable even thinking about it. So I have had cirrhosis since at least 2007. In 2009 I decompensated with ascites and HE. I developed HCC primary liver cancer in 2011. Yet all in all I am very lucky. I have an internationally know expert in hepatitis and liver transplant as my hepatologist. She is not only a leader in the field but a very caring and compassionate person. I had a great team of Interventional radiologists treat and destroy the two liver tumors I had. And it looks like I am going to survive to get a transplant if we can keep my cancer controlled.

So my advice is:
1. Get seen at the transplant center
2. Develop your relationship with your hepatologist.
3. Get evaluated. They will determine the exact status of your liver disease.
4. Keep copies of all your blood test, scans, other tests etc. This is help you to understand your condition better in time as you learn more.
5. They will come up with the best treatment for your health status to take on hepatitis C.

Doing these above steps will enable you to get the best care available. That is what you want and deserve.

If you have any questions about dealing with the transplant center I will be happy to help you. I am listed at two. So I have been through the evaluation and listing process twice now.

Cheers!
Hector

[pooh55811]

I am sorry you are dealing with these medical problems.

I do not know much about the trials or their criteria. Others on the forum will probably know more.

I also don't know how much time you have. I doubt anyone knows at this point. There are people on the forum who have had cirrhosis for several years and are still compensated. But I don't want to understate the seriousness of cirrhosis either. It is very serious. It can progress from compensated to decompensated without warning. If it was me, I would treat ASAP.

If you have cirrhosis then you should be under the care of a Hepatologist at a large medical facility/liver transplant center. Hepatologists specialize in liver disease and in managing the care of people with cirrhosis. Most other docs just do not have the experience or expertise to handle people with cirrhosis and the complications which may go along with it.

There are many people on this forum who have cirrhosis and many of them are treating right now. Others have treated successfully (attained SVR) and still others are treating soon.

If you feel great then your cirrhosis must be compensated (liver still handling its functions). I don't know the specifics of your situation, but if it was me, I would want to treat ASAP in order to avoid decompensated liver disease/cirrhosis and End Stage Liver Disease. If you do treat you do need to be treated by a Hepatologist at a large medical facility/transplant center. Cirrhotics do face more potential complications during treatment so you need the best care possible.

I am hoping some of the cirrhotics will read your post and respond.

One of our forum members recommended the following Hepatologist at the U of Washington. Maybe you can get a referral to this doctor or possibly make an appt. on your own. It sounds like your doctor would refer you:


Advocate1955 (who lives in WA) posted this about their good doctor:
Dr. Renuka Battacharya at the University of Washington Medical Services and Transplant Center.  
We really like her a lot. She is a Clinical Assistant Professor and Chief of Clinical Hepatology at the University of WA.  
Her education is:
M.D., University of Virginia School of Medicine, Charlottesville, VA
Residency in Medicine, Hospital of University of Pennsylvania, Philadelphia, PA
Fellowship in Gastroenterology, University of Washington, Seattle, WA
American Board of Internal Medicine Transplant Hepatology 2010
American Board of Internal Medicine Gastroenterology 2003

Also, there is a MedHelp forum specifically for people with cirrhosis. You may want to post in that forum also.

http://www.medhelp.org/forums/Cirrhosis-of-the-Liver/show/1390

[orphanedhawk]

When I was diagnosed with decompensated cirrhosis at the same time I was diagnosed with hep C, I already had ascites, fluid build up making my tummy look like I was pregnant.
Other than that, I felt pretty good. Hep C and liver disease can be asymptomatic.
The doctor said 5 years. I guess he said it to my husband because I don't remember.
I went into denial and shock.
Finally I did tx, relapsed and had a transplant, 4 1/2 years after my diagnosis.

Here is my question to you~ have you had a biopsy and when ?
What were the results ?
Did the doctor say you have cirrhosis or decompenated cirrhosis ?
Is this doctor a hepatologist ?

My suggestion is to see a qualified hepatologist at the transplant hospital. They will have the experience to  know the true extent of your liver's damage, or health.
You can decide what to do after you talk to someone more knowledgeable in liver disease.
Let us know how it goes.
Good luck~

[zako7]

Sorry to hear this. You can still clear the virus with the triple therapy and your liver can still regenerate if its compensated.
Focus your mind on treatment as soon as possible. Don't dwell on the bad news so much. Forge ahead because you still have some window open to clear the virus.
I think in my opinion, science is still not close to perfecting the cure, projection of liver damage and protection (Viccine) from hep c virus. Everything is relative. The liver is a large organ. It depends on the side the biopsy sample was taken. I have seen folks who moved from stage 2 to 4 cirrhosis in 3 years. So a naive person waiting for a better drug is taking a risk of sudden liver damage.
Given your age, I don't know why your doctor should delay your treatment in any way for a better trial drug. Take care and fight hard to redeem this situation.