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Cirrhosis, Scarring and Puzzled
Just got back from he Gastro. Although I'm considered "mildly cirrhotic", he said that even if the new Protease Inhibitor drugs eradicate the virus, the liver will never go back to it's former, healthy state because of the scarring caused by Cirrhosis. This is disturbing news, as I thought the eradication of the virus would allow complete renewal of the liver to its pristine state.
He also mentioned that I could very well be a candidate for a transplant 10-15 year from now even if I remain completely virus free...
So now, there's a puzzled and disturbed look on my face where there once was a smile. Anyone add to this?
Magnum
He also mentioned that I could very well be a candidate for a transplant 10-15 year from now even if I remain completely virus free...
So now, there's a puzzled and disturbed look on my face where there once was a smile. Anyone add to this?
Magnum
Magnum, I thought that in the case of compensated cirrhosis, if the insult (in our case HCV) was removed, that you’d not likely advance any further in terms of fibrosis. I think maybe a full recovery to ‘pristine condition’ might be a bit much to expect, but I have always thought that you certainly wouldn’t get worse.
On the other hand, those with Child-class B or C cirrhosis that are experiencing decompensation would eventually require transplant; that the line had been crossed. If I recall, you’re latest MELD was only 6 or 7, correct? I’d think you’d fall into the former category.
An example would be Goofydad and FlGuy; the achieved SVR, were formally diagnosed with early cirrhosis, and are still around and kicking. Well, certainly still around, anyway :o)… Seriously though; I think their prognosis is excellent.
I wonder if there might have been a miscommunication between you and the doc somehow? Hopefully others that have more personal experience with all this will stop in and offer their thoughts.
Keep da faith, my friend,
Bill
On the other hand, those with Child-class B or C cirrhosis that are experiencing decompensation would eventually require transplant; that the line had been crossed. If I recall, you’re latest MELD was only 6 or 7, correct? I’d think you’d fall into the former category.
An example would be Goofydad and FlGuy; the achieved SVR, were formally diagnosed with early cirrhosis, and are still around and kicking. Well, certainly still around, anyway :o)… Seriously though; I think their prognosis is excellent.
I wonder if there might have been a miscommunication between you and the doc somehow? Hopefully others that have more personal experience with all this will stop in and offer their thoughts.
Keep da faith, my friend,
Bill
I was told Pearlman that if I achieved SVR I could expect some reversal of fibrosis but not completely. He indicated perhaps a stage maybe two if was lucky but not back to ground zero. Scar tissue just doesn't go away and I'm sure we've both have plenty of it.
That's one of the reasons they tell us to have yearly ultrasounds and AFP blood marker test. Even with SVR, those with advanced fibrosis are more likely to develop HCC.
Trinity
That's one of the reasons they tell us to have yearly ultrasounds and AFP blood marker test. Even with SVR, those with advanced fibrosis are more likely to develop HCC.
Trinity
Sorry for your news Magnum. I can't be of much help here. I don't have alot of knowledge on this subject. Hopefully I never will, but eradicate the virus and lets not make things worse. I personally think the liver will heal some, but as trinity said, not back to original state.
Keep your chin up,
Jean
Keep your chin up,
Jean
At one time you were seeing 2 different doctors, one w/ more experience than the other. I'm not sure which gave you this evaluation.
By definition cirrhosis is considered non-reversible, but we don't know *exactly* the state of your liver. A biopsy tomorrow would answer some questions but there is still some room for fudge. I'm not sure even an autopsy would allow one to predict with certainty how many more years one had left. Seems like I've seen a few people who far outlived their doctors edict to "get their affairs in order".
One cannot know w/ certainty the state of the liver, and therefore how much your liver may be able to repair itself. It's good to know the range of possibilities, but I wonder if it is too soon to think pessimistically about the future.
There is currently work being done with anti-fibrotics that may lend the liver to repair itself. They are doing work with stem cells (and other such avenues) that may allow the liver to be repaired instead of replaced.
If you can stick around for another few years the stuff that you are worrying about may have a cure that we don't know about today.
It seems that cirrhosis means less repair but I was under the impression that we've seen some people with advanced damage seeing some improvement. The results are always open to debate. Myself, I thought that I was doomed when i got DX'ed. I've since outlived a number of my healthier friends.
In short....one never knows, IMHO.
best,
Willy
By definition cirrhosis is considered non-reversible, but we don't know *exactly* the state of your liver. A biopsy tomorrow would answer some questions but there is still some room for fudge. I'm not sure even an autopsy would allow one to predict with certainty how many more years one had left. Seems like I've seen a few people who far outlived their doctors edict to "get their affairs in order".
One cannot know w/ certainty the state of the liver, and therefore how much your liver may be able to repair itself. It's good to know the range of possibilities, but I wonder if it is too soon to think pessimistically about the future.
There is currently work being done with anti-fibrotics that may lend the liver to repair itself. They are doing work with stem cells (and other such avenues) that may allow the liver to be repaired instead of replaced.
If you can stick around for another few years the stuff that you are worrying about may have a cure that we don't know about today.
It seems that cirrhosis means less repair but I was under the impression that we've seen some people with advanced damage seeing some improvement. The results are always open to debate. Myself, I thought that I was doomed when i got DX'ed. I've since outlived a number of my healthier friends.
In short....one never knows, IMHO.
best,
Willy
Its so hard to believe that doctors spew out this kind of information. as in the case of Magnum, why spit out the worse case scenario? arent there a lot of other possibilities?
When I had breast cancer the surgeon said I've never seen anything like this before (my mammogram) if this is cancer we will have to take both your breasts. (as she was looking at herself in the mirror) hard to believe. I did get to fire her and found people who knew what they were talking about.
When I had breast cancer the surgeon said I've never seen anything like this before (my mammogram) if this is cancer we will have to take both your breasts. (as she was looking at herself in the mirror) hard to believe. I did get to fire her and found people who knew what they were talking about.
Speaking of which...... my wife (now "ex") had the same edict. She had a minor lump that she thought might be due to a pregnancy that didn't "take" at one or two months. the periods resumed but the little lump remained. She thought it might be milk gland related.
She got some sort of examination and the doctor said take em both!!!!
She declined the offer, he more or less raised the stakes and promised an early demise for her. She saw the same doctor about 10 years later while in the hospital visiting and asked him if he remembered her and his promise. He looked ashamed. That *prognosis* was offered some 27 or so years ago and she is still going strong in spite of a few bad habits. : )
Willy
She got some sort of examination and the doctor said take em both!!!!
She declined the offer, he more or less raised the stakes and promised an early demise for her. She saw the same doctor about 10 years later while in the hospital visiting and asked him if he remembered her and his promise. He looked ashamed. That *prognosis* was offered some 27 or so years ago and she is still going strong in spite of a few bad habits. : )
Willy
Recent evidence does suggest that those with moderate liver damage can indeed experience 'renewal' after SVR, but data is pretty limited in regards to Stage 4s. It seems that the possibility indeed does exist for those Stage 0-3, but once cirrhotic, it's a coin-toss. My husband had 'mild cirrhosis' on biopsy and underwent massive liver resection based on doctors being optimistic of the possibility of some regeneration of healthy tissue post-resection, but it was not the case for my husband (whose meld is between 7-8). It appears that at some point when the liver 'crosses the bridge' to cirrhosis there is no turning back, but exactly at what point or under what conditions damage becomes irreversible is still not well understood.
"MELD 6
AST 65
ALT 93
Billirubin Normal
Platelet Count (71 LOW)
IQ 245"
I notice your listed IQ is quite out of range. Perhaps you would be well served with a referral to a brain specialist ;)... but bet if you listed your VL, the hcv virions still have you beat. ~eureka
"MELD 6
AST 65
ALT 93
Billirubin Normal
Platelet Count (71 LOW)
IQ 245"
I notice your listed IQ is quite out of range. Perhaps you would be well served with a referral to a brain specialist ;)... but bet if you listed your VL, the hcv virions still have you beat. ~eureka
One thing about this one of two doctors I’ve seen that puzzled me, was when he said he "doesn't know enough" about some of the question I posed to him regarding if Tele doesn't work can we go to Boce and so on. Unfortunately, Dr. Robert Gish, the renowned Hepatologist has since joined the staff at the University of San Diego and doesn't come to Las Vegas anymore. I will try to email him regardless, for his opinion on all this.
It's true that most people go to their grave with Hep C rather than from it. I take very good care of myself, which leads me to believe that it’s a factor in that I still have an enormous amount of energy (which if I was very sick, I wouldn't), and I'm of an optimistic nature after surviving 13 surgeries and still here to tell the tale.
At any rate, most doctors die before their patients. It was said the "no man is an island", meaning that no one person has all the answers. I believe that applies to doctors as well. I certainly wouldn't want this news to dash the hopes of those sicker than I am, and in any case, the race for stem cell and more intrusive drugs to battle Hep C is in full bloom. The doctor did predict that in 10 years, 95% of all Hep C will be cured.
As for trying new drugs, there are risks of course, but where others see risks, I see opportunities...
Magnum
It's true that most people go to their grave with Hep C rather than from it. I take very good care of myself, which leads me to believe that it’s a factor in that I still have an enormous amount of energy (which if I was very sick, I wouldn't), and I'm of an optimistic nature after surviving 13 surgeries and still here to tell the tale.
At any rate, most doctors die before their patients. It was said the "no man is an island", meaning that no one person has all the answers. I believe that applies to doctors as well. I certainly wouldn't want this news to dash the hopes of those sicker than I am, and in any case, the race for stem cell and more intrusive drugs to battle Hep C is in full bloom. The doctor did predict that in 10 years, 95% of all Hep C will be cured.
As for trying new drugs, there are risks of course, but where others see risks, I see opportunities...
Magnum
If you get a chance you might think about reviewing HR's posts regarding supplements with anti-fibrotic potential. I'm not wanting to be pushy or anything but HR most certainly could be in the Mensa society.:>)
Ev
Ev
It was said that "no man is an island",
Not always true when it comes to fairer sex though: I took Backseat Bertha for a swim in the Atlantic and a Spanish Galleon sailed up, stuck a flag in her arse, and claimed her for the Queen!
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I have early cirrhosis. Upon SVR, Todd Frederick on Gish's team at CPMC said he expected me to be healthier in 5 years than I was on that day. It's now been 5 years, and I guess he might be right. I haven't headed into the abyss anyway. He gave me a 50/50 shot at regressing two stages, but said it would be a slow process. HR said he could improve those odds quite a bit. I've not had great success at maintaining HR's eating protocol though.
Not always true when it comes to fairer sex though: I took Backseat Bertha for a swim in the Atlantic and a Spanish Galleon sailed up, stuck a flag in her arse, and claimed her for the Queen!
---------------------------------------------------------------------------------------------------------
I have early cirrhosis. Upon SVR, Todd Frederick on Gish's team at CPMC said he expected me to be healthier in 5 years than I was on that day. It's now been 5 years, and I guess he might be right. I haven't headed into the abyss anyway. He gave me a 50/50 shot at regressing two stages, but said it would be a slow process. HR said he could improve those odds quite a bit. I've not had great success at maintaining HR's eating protocol though.
"The doctor did predict that in 10 years, 95% of all Hep C will be cured."
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In may of 2008 I had a pretty sharp Dr. tell me 5 years.
So lets call it 7.5 years : )
I think the dual acting antivirals are going to take a big bite out the infected population. Those may get approved around 2015; not so far away
Before they get approved vertex and Boceprevir are going to reduce our populations substantially. If the cure rate goes to 75%....then that means the failure rate may be 25% plus or minus.
Those people who fail will see the dual acting antivirals and once again, perhaps 75% of them will be cured.
We may see triple therapy w/o SOC; it could be twin PI's and a "nuke". We may see some of the best of class combined.
Not only will we see shorter treatment times, higher efficacy rates, but less "collateral damage" that we occasionally see where people who treat get injured by the TX.
So far as recovering..... if Goofy is feeling the SAME 5 years later I think he's doing great. I sure as h3ll don't feel the same as i did 5 years ago. I don't feel as good as I did 2 years ago. : ) I can tell that my time to treat is coming fast.
willy
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In may of 2008 I had a pretty sharp Dr. tell me 5 years.
So lets call it 7.5 years : )
I think the dual acting antivirals are going to take a big bite out the infected population. Those may get approved around 2015; not so far away
Before they get approved vertex and Boceprevir are going to reduce our populations substantially. If the cure rate goes to 75%....then that means the failure rate may be 25% plus or minus.
Those people who fail will see the dual acting antivirals and once again, perhaps 75% of them will be cured.
We may see triple therapy w/o SOC; it could be twin PI's and a "nuke". We may see some of the best of class combined.
Not only will we see shorter treatment times, higher efficacy rates, but less "collateral damage" that we occasionally see where people who treat get injured by the TX.
So far as recovering..... if Goofy is feeling the SAME 5 years later I think he's doing great. I sure as h3ll don't feel the same as i did 5 years ago. I don't feel as good as I did 2 years ago. : ) I can tell that my time to treat is coming fast.
willy
I've reposted this a number of times over the years:
http://www.medhelp.org/posts/Hepatitis-C/Recovery-of-Fibrosis-and-Cirrhosis/show/534318
http://www.medhelp.org/posts/Hepatitis-C/Recovery-of-Fibrosis-and-Cirrhosis/show/534318
"I'm not sure even an autopsy would allow one to predict with certainty how many more years one had left."
“I know that you believe you understand what you think I said, but I'm not sure you realize that what you heard is not what I meant.”
“I know that you believe you understand what you think I said, but I'm not sure you realize that what you heard is not what I meant.”
I have a friend who was diagnosed by Dr. Shiffman with cirrhosis on biopsy. She cleared and 7 years later underwent a post treatment (HALT C) biopsy. She was Stage 0. Dr. Shiffman says that 20% of cleared cirrhotic patients will go back to Stage 0. The other 80% will have lesser degrees of fibrosis than before treatment. The only caveat is that he feels once a person has been cirrhotic, even if they clear, they need to continue with HCC surveillance. There is the odd patient who will develop HCC even if they cleared.
Yeah, I was channeling Yogi Berra on that one. I still stand 100% behind what I thought I meant I said.
Willy
Willy
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