Hep C and Fibroscan

[Livelife777]

Hello friends.   Since being diagnosed with Hep C and Cirrhosis I have been on a mission to reverse the damage done by the virus.  I was treated with Sovaldi/Ribavirin 12 weeks for genotype 2 and fortunately was cured.  It has
now been over a year since being declared SVR 24 and am doing my best to reverse the Cirrhosis thru healthy
living.   Recently had a Fibroscan (MRE) at Mayo Clinic and my # came back at 11.0 K. I'm wondering if anyone has info related to what that score indicates.  Some grafts say F4 (Cirrhosis) while others F3 (Fibrosis).  Any thoughts or responses would be welcomed.   Tnx
.....Kim

[Studio58]

I think it is Fibrosis up to 12. I was 17 before the start of treatment.

[Livelife777]

Hi all.   Just an additional comment so that there is no confusion in my post.
Wanted to clarify that MRE and Fibroscan have different values in regards to interpretation of results.  This information was just relayed to me and didn't want others to misinterpret their own scans.
MRE score of 11K=Cirrhosis
Fibroscan of 11K=F2-F3
Wish it was the others way around but finding that after attaining SVR it may take years if any reversal of Cirrhosis is to occur.
As always, my best
.......Kim

[flyinlynn]

Hope at a fibroscan result of 27 I have hope of reversal if I am cured this time

[Livelife777]

Me too Lynn.  I know that you've done everything you can to kick this parasite to the curb.  I'm imagining your next mission (Should you accept this challenge) will be to reverse some/all of the incredible damage we both have come to accept.  In the scheme of things for me this is the hardest part as basically it can't occur taking a pill.  I'm still fighting for redemption from the onslaught of damage I indiscriminately allowed to happen.
The greatest rewards in life are often achieved thru the greatest of sacrifices.
My new Mantra
.....Kim

[keepingOnkeepingOn]

My doc says he expects a reversal of F4 to F2 in approx. 2 years based on the alchoholic cirrhosis (as opposed to hepatic cirrhosis). Don't give up yet. Staying active is good for the liver. The only problem is waiting for the platelets to rise while watching for a reversal. As the healing begins so do the platelets rise. It is as it should be as the thin blood is the body's way of helping it pass through F4 liver. That's what doc says.

[Studio58]

Stay positive. I first treated in 1995, and then in 1998.  Failed both times.
Just finished 48 weeks of triple therapy and this time it is looking good.
I am proof that there is hope for all f us.

[hepcandme]

Excellent post

I have been thinking (perhaps prematurely in my case) that it would be great to have a group that is focused on people with liver damage who have achieved SVR

There is a Cirrhosis group but sadly, it often becomes the final pleas of those dealing with ESLD, rather than those who who triumphed over the virus and are hoping to recover, or at least improve their liver health

I know there is also a post treatment group but that too doesn't seem to address the comments expressed here but on post treatment symptoms

What do you think?

[mac790]

Hey Gang,  I also wondered why, as a brand new, right out of the shipping crate FibroScan machine sat in my clinical trial coordinator's office, why they did not use it on me. They did a core biopsy, transjugular no less, and it came back with the dull thud of a Stage 5/6 rating. No surprise, I have lower limb symptoms, such as edema, poor toe nail growth, and a really unflattering amount of skin discoloration, resembling varicose veins. They insist on following me for 24 months > EOT w/ Merck's Grazoprevir/Elbasvir with regular ultrasounds exams only every 6 months. The FirboScan uses sound waves to measure the stiffness of the liver tissue. I found this explanation:
Histological (biopsy) diagnosis classifies the severity of fibrosis into five stages, S0 to S4.

S0 means no fibrosis. S4 is cirrhosis. In between, S1 is a mild fibrosis only seen at the portal area. S2 is a moderate stage of fibrosis, between portal areas, but without the destruction of the lobular structure. S3 is severe fibrosis.  At this stage, there is fibrostic bridging between portal areas and between portal areas and center veins. At S4, in addition to S3's changes, there are pseudo-lobules formed and this stage is the final stage, cirrhosis.

Hope this helps clarify things. I was told @ Stage 5 not to expect very little, if any meaningful amount of tissue regeneration unless new therapies are developed. I was also told that if any spontaneous regeneration did occur it would take many years to develop. When I asked if any fibrosis/cirhhosis meds were in the pipeline, I was told "no". It would appear, at least for me, I've got what I'll have, barring a tx breakthrough. I was hoping to regain enough liver function to enjoy my beloved "nectar of the gods", beer. That looks highly unlikey, at least for the forseeable future. It is very hard to watch an NHL/NFL game without getting a severe craving as a result of the deluge of beer commercials.     mac790

[Livelife777]

You guys are all great and double read each and every response.  Thank you for sharing your thoughts and journeys.  Unfortunately the only scoring system found for an MRE put Cirrhosis between approx 8-10.  Nothing after that.  Now with an 11 reading not real sure my catagory.  Perhaps " Double
Cirrhosis" is my future.  Guess the excitement of 141 Platelet Count was premature.
Linda I actually love your idea and think it's brilliant.  Have noticed these boards are semi dwindling in participants as most are curing and moving on.
I have searched high and low trying to come up with "After the Fact" and not a lot of data is forthcoming.  Remembering Dee's story regarding her liver regenerating and being fascinated.  Hoped to somehow emulate her success and no longer need to worry about a possible Decompensation down the road.  Might add, Pammie Lee or Pamala???? also was triumphant as well.
I tend to savor every tidbit of info in hopes  of one day living as close to a normal life as my liver will allow.
Thanks again everyone for taking the time and responding.  It made me realize I am not alone and lucky to have great support.
Linda if you decide to start a new thread I'm thinking it will help so many cope with uncertainties down the road.  Yes, we all beat Hep C  (Soon for you) and
we all are young and still have a lot of life ahead of us.  This concept for many may encourage continued healthy living and perhaps abstinence for those individuals (Count me in) still tempted by past "Party "Days".
......Kim

[patra_]

Kim: I am wondering of part of that is that so few people are having post treatment issues of any sort?  But like you, I would be very interested in improvements, changes, etc, after the fact.  My
Dr is not even ordering USs, never mind GREs or MRIs, as he believes the liver has already shown that it is improving by the regular LFTs returning to the normal range and staying there.  As I said elsewhere, he is following up on the AFP for a while, 'just to be sure'.  I also like Linda's suggestion!

Mac: Someone who had early cirrhosis posted, several months ago that he continued the healthy lifestyle, liver friendly diet, hydration, and moderate exercise, and it took 8 years but his liver improved a couple or 3 levels.  I will see if I can find that post, as I found that very encouraging, also.

On to better health, All !

Pat

[keepingOnkeepingOn]

We really need a thread to discuss post treatment issues. There is no real data on it thus far. It will take time for any data to be available.

[keepingOnkeepingOn]

How do we know 'so few people' are having post treatment issues? No one is talking about it. There are issues. This being uncharted territory the 'issues' may be explained away as 'old age' or some other illness symptoms. I have issues. Being sick for so long and taking these drugs that could possibly mess with DNA and definitely muscular structure brings issues. No one wants to hear it. So I look for healing in many ways with no road map.

[sue4hula]

Prematurely for me, but I'd be interested in a new board on post treatment cirrhosis healthy living as well.  I still have 10 long weeks of Harvoni and Ribavirin, (week 14 of 24), but hope I get the privilege to join a group of positive, courageous, survivor friends!

[Sarah1949]

My thinking is that once my platelets begin to rise it will show me more than any Fibroscan or MRI that my liver is healing. My ALT/AST returned to normal during treatment and I have convinced myself that my neuropathy is better and the Rosacea and Lichen Planus that were always an irritant are now mostly gone. I'm only six months svr but I am positive I get more healthy by the day. Of course it's probably too early to see changes on an ultrasound or MRI. Still, I have very high hopes for my poor cirrhosis liver.

It would be nice to have a thread or whatever that is specifically for those of us with cirrhosis post treatment.

[hepcandme]

OK then

What should we call our new group?

Post Heppers Seeking Improved liver function?; Improved quality of life via liver loving actions?

Strategists for Improving Liver Health post SVR?

SVR, what now?

Come on Big Pharm, you cured Hep C, now cure Cirrhosis!

Just throwing things out there.

I feel like the Post Treatment group does a good job at providing a forum for those with lingering issues due to treatment and the Cirrhosis group with ESLD (but frankly, that group's posts often leave me in tears)

I think what we are taking about is to take all these great minds (you) and Hep C wonks and use our gifts to promote a continued healing. The Hep C may be gone but the damage it created is still there - especial for those who are compensated or decompensated but still managed to rid themselves of the virus

[patra_]

That's why it was a question.  I do like the comcept here, though.  Would it be aimed only at cirrhotics?

How about seeing if MedHelp is interested in a community called, maybe, 'PostTreatment, Second and Third Generation' ?  thought about a new Community because I agree with Hepcandme both the Cirrhosis and regular post treatment really don't fit what this is about.

[Livelife777]

So, are we all on board?  It's really important for all of us to keep tabs on what lies ahead, and also on eachother.  I think it will give many of us an opportunity to share our recipes for success as well as stumbling blocks that we may encounter along the way.  Kinda like a support group for after the fact.
There have been many instances where we get to know one another while sharing out treatment journey and then once they are SVR it's "Poof", where did that person go?  At least this way we could encourage others and ourselves to stay with the program and move forward with healthy positive living.  Not doom and gloom.
Personally the most challenging aspect of this experience is the "Now what".
Are we going to get better if Cirrhotic?  Are there any new treatments on the horizon?  What foods should I eat to jump start my liver?  I could go on and on.  I just had an MRE and still can't find any info on what my # really means.
Am I getting better, worse, will I see improvement?  If we could all share our After the fact, then we would not be left with such uncertainty.  Keep in mind we have Cirrhotics, Firbrotics, and Post Transplant friends that have initiated and completed treatment also wondering what's next.
Let's throw out some suggestions and if anyone knows the moderators see if this idea can be included in conjunction with the other topics.  We really do need a safe non judgemental forum to exchange thoughts and give continued
support.
.....Kim

[48weeks]

...I guess I would be considered a fibrotic, that's a weird word. I have just recently attained SVR, and I think a group like this would be great.  I would like to see evidence of a healing liver too.  So many on here are so good at eating right etc...I work out, and drink lots of water, and sort of try to eat well, but I am not one that just eats a "liver friendly" diet. I hope I'm not doing too much damage.

[Stronglady14]

I would truly love a forum with that subject. I too am cured but my fibroscan was 9.9. I would love to find ways to help cure my liver. I know mine has a rough time due to me having to take pain meds. I have improved my ways of eating but wonder if that is enough. My platelets where 79 last time I was tested not even really sure had bad that is. All the info we can get from each other would be awesome.

[48weeks]

When I was on Telaprevir two years ago, my platelets got that low. The lab also included phrasing that said my platelets clump.  Once I got off Telaprevir, they returned to the normal range with no mention of clumping.  If yours clump and your concerned, as you should be at that count, you may want to see a blood specialist to get an accurate count, I forget what they're called.  79 is very low.

[ppmguy]

   I think you will find this interesting...

      i had cirrhosis in 2012 when i cleared the virus.

    on march 5th, 2015 i had a fibroscan

   result was 4.5 kpa  =  f 0 to f 1   NORMAL

    yesterday i had a ultrasound to cross referrence the fibroscan.

    result  was;    echogenicity was normal
                          liver surface is smooth
                         liver appears normal

    my hepatologist wasnt surprised. she stated that if the liver is cirrhotic,
    but fully functioning, the liver can heal itself.  

    It can and does happen
    barry

[keepingOnkeepingOn]

You said: "Personally the most challenging aspect of this experience is the "Now what".
Are we going to get better if Cirrhotic?  Are there any new treatments on the horizon?  What foods should I eat to jump start my liver?  I could go on and on."
~snip~
Ditto......ding ding ding

Cured of the monster virus and left with damage. How do you even come up with the medical billing code for further treatment? Stimulating the liver and spleen through Manual therapy to bring blood circulation to the area thereby increasing the nerve functioning and platelet increase. How do we assist the healing of the damage done? Just cure us of the monster and then we wait some more for some wished for healing? That's all most people do with this disease. Wait and wait and wait. For what? There was a time I was waiting for a cure to come out and I about died waiting. How do we become proactive in healing the damage left behind by the monster virus. Waiting for some magic to happen is not getting it. The symptoms of a damaged liver are still present. When will the Post Treatment thread go up? Who's going to start it?
There is no pill to take to reverse the damage. Nausea still exists to some extent. Low appetite too. Am I going to have another bleed out? All these questions. It's ludicrous to think that since the virus is gone that we can live as normal people who have no liver/spleen/portal vein damage. I elect Livelife777 to start the new thread. Do I have a second motion?

[LW1959]

How's your overall quality of life?

[LW1959]

There exist post treatment forum. I found it under stage 3 fibrosis and hepC. I don't remember how I found it but it's on medhelp.org