Education: Stages of Liver Disease

Cablecargal, I hope you've had your financial questions answered by now by whoever approved the 3-month leave.

Reading over these posts again, I feel that perhaps the title should be changed to Stages of End-Stage Liver Disease.  The reason is that I definitely have liver disease from hep C, which led to cancer, which was treated.  I also have some mild cirrhosis.  Aside from that, I have enormous fatigue and some ascites problems, but really nothing else at this time.  No encephalopathy and the short-term memory loss is minimal.  The "dropsies" (dropping things) are not as frequent.  Yes, my days and nights are mixed up, but I usually have no reason to get up early.  I think it's more of a habit I've gotten into.

Anyway, those are just my personal thoughts on this topic.   ;)

Hugs,

Connie

hello, my name is jason, and I am a new member,  right now I am in minnesota, dealing with the passing of my father of 64 he died of cirrhosis of the liver, his health had been deterioring for some time, with only 20% or less of a fully functioning liver, the doctors gave my father not to much longer to live, it was difficult because we all knew the end was soon, he died peacefully in his home and our family was there to see his passing, after reading some of the articles on liver disease I decided to write and share my story!

Ironically in 2003 I was diagnosed with hep C, even though i was in a very early stages of the disease I decided to undergo the interfernon treatments, which on hindsight was a mistake, the side affects were devestating to my health and led to severe episodes of depression and utimately I had to seek prevention, and I ended up in a hospital, I discontinued the treatments, and my life was in total dissaray, I was 30 years old at the time,  after blood work was done the levels of enzymes in my liver were not there anymore, so the hep c was no longer present, I was relived it was no longer in my liver, however, on my last doctor visit it had reappeared, I was wondering what advice anyone would have on treatments or alternative methods? and when I should be concerned about severe liver damage? 10 years? 20 years etc.... or at what percentage? and does it matter if the hep c strand is aggresive or not?

Hi, Jason, and welcome to the forum.  Please accept my belated condolences on the passing of your father.

I think you are wondering if you should again have treatment, considering what you went through before.  Have you seen a GI doc or a hepatologist?  You really should see one of those to discuss this matter.  I was diagnosed with hep C in '93 and tried the interferon treatment twice.  The longest I was on it was about 8 weeks.  My white count plummeted so fast and so low that my GI doc took me off of treatment.  After that, I went along w/o any problems except fatigue (and only being able to work PT) until 2005 when a routine ultrasound revealed a large cancerous liver tumor that had metastasized to the inferior vena cava.  Following that, I went to Mayo where I had numerous MRIs, CTs, blood work, etc.  They saved my life with treatment and surgery.  Now I'm at a point where I have to decide if I want to try the combo treatment.  After blood work and a CT scan next month, I am meeting with my hepatologist to talk this over.  I have met with her a couple of times before, and she told me that the most common genotype (which I think you are calling a "strand" but maybe mean a strain) in America is genotype 1.  It is also the most difficult to treat.  They did testing for my genotype a few months ago, but I never learned just what it is.  I will find out when I see this doc next month.

Since you had such an awful time with treatment before, I know you are wondering if you need to go through it again just yet.  This is something nobody here can answer for you.  You need to discuss it with a specialist.  I can tell you that my hepatologist told me that they now have drugs to counteract a lot of the side effects, including low white count, nausea, and depression.  However, everyone I have known who has had the combo treatment has said it was pretty awful.  Since I am now 65, and am just beginning to feel good again, it is also a question for me as to whether I want to put myself through a year of treatment.  If I don't do it, I risk liver failure and recurrent cancer, which would require a transplant.  So I'm hoping my hepatologist will help me in deciding what to do.  In your case, I would write down all your questions and go see a liver specialist to discuss treatment as it pertains specifically to your case.

Do read through the old posts and get info online at reputable sites such as the American Liver Foundation.

Best of luck and please do post again.

Connie

Jason, it's good to hear from you.  You might call the County Medical Society and ask for a recommendation for good hepatologist in your area.  Otherwise, look in the yellow pages and then do a little research on a couple of docs online to find out if they are board certified, etc.

Believe me, if you reach 64 and are doing okay, you will want another 10 or 20 years.  However, without treatment, I don't know just how well you will do the next 30 yrs.

Hugs,

Connie

Post Edited (Bootling) : 9/6/2008 4:16:27 PM (GMT-6)

Bootling, if your dad's ex hadn't "told on him" about the drinking, they would have found out anyhow, during blood work or just by observing him.  However, if he has not had a drink in 6 mos., then he probably would once again be eligible for evaluation for transplant.  It's good that he is going to counseling, as they can verify the sobriety and also the fact that he is now getting help and is no longer in denial.

I do understand your frustration and anger, as many here do.

Please keep posting, as you need support, too, and let us know how things are going.

Hugs,

Connie