After I was told I had stage 4 cirrhosis back in 2004, I thought the chances were that I would not still be alive nearly ten years later. At that time I did a lot of reading about what I would experience at end-stage and what my options might be. Worrying about it had an unnecessarily negative impact on my life at that time, but eventually I came around to accepting it.
Let's not forget, people who don't die of unnatural causes eventually reach a condition very similar to end-stage cirrhosis anyways because of old age.
My grandfather was healthy and strong for nearly 90 years, but in the last year of his life, he became very pale, lost all his muscle, lost his resistance to infection, and at the very end during the weeks before his death couldn't even get out of bed. He had no cirrhosis, cancer or anything other disease - it was just old age.
My friend's father, who recently was admitted to a nursing home at about age 90, never had cirrhosis or Hep C, or other serious illness. Yet he looks very similar to someone I've seen who is about age 55 and has end-stage cirrhosis.
What having Hep C and stage 4 cirrhosis really means is that I'll be in that condition at an earlier age than most people. But I'm luckier than all the people who died from accidents and illnesses in their childhood, teens, 20s, 30s and 40s.
And as a wise man once said "in the long run we are all dead anyway".
No, that's true. And you have a good point, we are all adults, and most of us, older adults. It took me a long time to grow up, and finally break my denial, and face my Hep C.
When I see other people around here, and at my irl support group, going thru this treatment, in their late twenties, early thirties, etc, I really admire them for that.
By the time I was in my late forties, I had already lived thru quite a bit of tragedy, so I feel like I am better equipt, to deal with the TX~
And I agree with Wiil, we do usually keep it pretty positive, and realistic, around here ; )
Sorry if you consider experience and knowledge depressing but I am just stating what I know from my own experience of 4-5 living with hepatitis caused cirrhosis, End-Stage Liver Disease and liver cancer and am now waiting for a transplant in order to survive before the cancer becomes unmanageable..
You said you had cirrhosis and I thought you might want some info so you don't end up like me as I believe cirrhosis is a serious disease.
Your free to believe or not believe what I have posted.
For the best source of knowledge and experience talk to a hepatologist who knows your health condition(S) and who works every day with hepatitis C caused cirrhosis.
hector
Although of course we should face reality like adults, we should not dwell on the negative so much we give up hope
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Have never seen evidence of that here...actually just the opposite.
Best..
Will
I agree it's not a good idea to sugar-coat the truth. But at the same time, it's not a good idea to dwell too much on what's most depressing, especially during treatment.
I've come across a lot of contradictory information, the best example being the nurse in 2003 saying I could never get rid of the Hep C virus, and the doctor saying I that it might be possible. I've seen studies that show pegatron has a better success rate than pegasys, other studies that show the pegasus SVR rate as being better that pegatron.
When I come to this forum and ask questions, I'm really just trying to clear up the ambiguity and find out the real facts, so I can better deal with everything. I've found some useful information here (about hydroxyzine for example).
Although of course we should face reality like adults, we should not dwell on the negative so much we give up hope.
Here is a quote from the tail end of the link;
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http://www.nejm.org/doi/full/10.1056/NEJMc082747
"Although Koretz and Gluud contend that decompensated cirrhosis will never develop in most untreated patients with chronic hepatitis C, in our study, progression occurred in an alarming one third of patients with advanced fibrosis who were followed for 3.5 years.
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As is often the case w/ HCV, there is not always crystal clarity on what we can expect, but if the quote is true (I've no reason to doubt it) it is one of those little nuggets that helps us put things in perspective.
I will also add, it appears that one might easily confuse the "benefits" of treating.
Hectors point was that unless one clears the virus, (as evidenced in the HALT-C study) there is little stage regression benefit, or other methods by which benefit was measured.
It is an entirely different issue watching people who have cleared have their damage regress (such as jmjm was mentioned). Maybe I was the only one who may have miscontrued the original question about benefit due to TX, not exclusively benefit from treating only if one SVR's.
Frankly, I think we all change with time due to aging, we may improve diet or stop smoking or take up exercise as we get older or sicker, and so I think some things could get better.... but....changes would be hard to prove.
The opposite is also true, with TX many people become less active and some of the results of TX could be in part due to becoming more sedentary for an extended period. A doctor friend of mine tells me that for every day one is in bed, it takes a 7 to recuperate. When one is sick or anemic or on medical leave for some time it could contribute to some of the issues post TX. Naturally, one would blame the treatment, but it could be due not from the cause of drugs, more the effects of a more sedentary life for an extended period.
Slightly back to the original question, but the benefits? If one were to SVR it could head off contracting some other extra-hepatic issues that are "associated" with having HCV. There is a list of them; inflamatory issues, immune issues and depression/ brain fog issues are also often associated with HCV.
I thought I would throw a little into the mix.
willy