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

[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.