Hepatitis Forums
Hepatitis C Main Forums => Post Hepatitis C Treatment => Topic started by: Mugwump on September 28, 2018, 12:40:41 am
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With an official 3 years free from HCV, the specialist who arranged my treatment has offered me a new fibroscan. He is as curious as I am as to whether or not there has been any deep tissue improvement in my liver. I was the first person with cirrhosis treated here on Vancouver Island with harvoni so my results will be one of the first long term follow up.
My original fibroscan was up at 26 kpg so my huge hunk of pork was definitely quite stiff for a human liver.
I am not counting on the readings being any better and only hope that they are no worse, touch wood!
It is great that at least here in BC they are curious to see if the human liver can heal in unexpected ways if HCV is removed from the equation. I only have to pay for the tech appointment, as that is not covered by our medical system.
Seems that they will readily cover ultrasounds but not fibroscans quite yet.The out of pocket cost is only 70 bucks so the only real hit will be the shots from the transducer head to my liver and will barely reach into the outer skin of my wallet!
I still think I would do one myself on the cheap with a fish finder and fire crackers if the test costs were out of sight. LOL ::) :o
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Hi Eric,
Congratulations on your 3 year anniversary. I bet your liver has healed some. In fact I would be surprised if it has not.
Good luck and I'm pulling for ya!
Best always,
G
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Hey Eric congrats on being three years post treatment!
I am curious to hear of your results as I am in similar straits.
My pretreatment fibroscan was 27 and my one year post was 33. I am also thinking about asking for a three year post fibroscan next spring when I achieve that same milestone.
Good luck on your results!
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I consider myself fortunate in that I am involved in a 5 year clinical study for those who cleared Hep C via Harnoni. The study involves blood draws every 6 months and a Fibroscan yearly. All costs are covered by the study and I receive a stipend for my travel.
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Hey chino any results available yet? How are you doing?
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Hey chino any results available yet? How are you doing?
Lynn,
All liver function labs are perfectly normal and have been since ending treatment. I do have mild cirrhosis but my Doc is not that concerned as it is at the low end of the scale. Fibro Scan scores have been approx. 25.0.
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Ok yeah my Fibroscan score before treatment was 27 then 2 years post was 33.
My liver enzyme tests have been in normal range since I was cured as I don’t have hep c bothering my liver anymore but I still have had cirrhosis now for almost 11 years. Was thinking about asking to see if I can get a Fibroscan test next spring.
I did have an improvement in my platelet count it was about 85 before treatment and now is 110 still well below normal of150 indicating I have continuing portal hypertension. But at least I have not had any more esophageal varicies since they were banded back in 2012.
Have you had any cirrhosis symptoms? How is your platelet count?
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Ok yeah my Fibroscan score before treatment was 27 then 2 years post was 33.
My liver enzyme tests have been in normal range since I was cured as I don’t have hep c bothering my liver anymore but I still have had cirrhosis now for almost 11 years. Was thinking about asking to see if I can get a Fibroscan test next spring.
I did have an improvement in my platelet count it was about 85 before treatment and now is 110 still well below normal of150 indicating I have continuing portal hypertension. But at least I have not had any more esophageal varicies since they were banded back in 2012.
Have you had any cirrhosis symptoms? How is your platelet count?
Lynn,
My platelet count before treatment was 70. After treatment it dropped and is now at 32. I have had several bandings for varicies and am due for another endoscopy with banding. I have not had any cirrhosis problems I am aware of.
My hepatologist, who I see every 6 months, always orders a complete blood work up that is completed before my consult. He alternates every other consult with either a MRI w/wo contrast and an ultrasound. I just had the MRI and am scheduled to see him Oct. 18th. When I see him in April I will have an aultrasound. In addition to the bloodwork he orders every 6 months there is the bloodwork draw for the clinical study which I schedule on the same day as my consult. The study conducts a Fibroscan yearly. Thus far, he is pleased with where I am and so am I.
I try to maintain a healthy lifestyle. Hit the gym 3 times a week, ride my mountain bike in between and have lost 35 pounds through the combination of diet and exercise.
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Glad to hear you are doing great with a healthy lifestyle. I need to definitely work on that. Could lose at least 30 lbs ad get any amount of exercise.
“My platelet count before treatment was 70. After treatment it dropped and is now at 32. I have had several bandings for varicies and am due for another endoscopy with banding. I have not had any cirrhosis problems I am aware of.”
Low platelets and esophageal varicies are cirrhosis problems they are both indications of portal hypertension which is a symptom of cirrhosis.
I see my hepatologist every year. I have blood testing and an abdominal ultrasound every 6 months. I have never had an MRI just ultrasounds to monitor for possible HCC as we are at higher risk but lower risk than when we had hep C. For blood tests I have CBC, BMP, PTT and AFP. I also get my testing done before my annual visit.
I was having annual upper endoscopies since 2013 after I completed my banding procedures but last year since I haven’t had any reoccurrence my doctor decided we could go out 2 years between. I will be having an upper EGD next spring. My doctor is also optimistic about my future prognosis butwould probably like to see me shed a few pounds and get some exercise.
All I can say is it’s in my to do list :)
Happy to hear you are feeling great
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@Mugwump looking forward to the results.
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Going in on Friday for a fibroscan. Confirmed results in a few weeks. Turns out that I will not need to modify a fish finder transducer, write the software to crunch the numbers and use firecrackers to do what is essentially a simple density seismograph of my liver after all. Just need to rob the bank of 70 canuck bucks here in BC so the tech can get paid! ::)
I think I will refuse if they want to do a deep biopsy to confirm, if the results show a significant improvement in my liver. FOR that they can bloody well wait for the necropsy. Like my bowels the process is that slow getting some things done here in BC.
Nothing to eat or drink the morning of the test...
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Cool I’m waiting with bated breath for your news :)
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Good luck Mug!!! LOVE the reference regarding the reference to the fish finder! Necessity is the mother of invention.
ONE HAND AHEAD AND ONE HAND BEHIND , YOU CAN HAVE YOURS JUST GIMME MINE!!! ZZ TOP
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Good luck Mug!!! LOVE the reference regarding the reference to the fish finder! Necessity is the mother of invention.
ONE HAND AHEAD AND ONE HAND BEHIND , YOU CAN HAVE YOURS JUST GIMME MINE!!! ZZ TOP
https://www.youtube.com/watch?v=Ukbu9dmmzJg
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Hey Paul,
Man I thought I was the silent minority that listened to Franks masterpieces.!!LOL :D
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Good luck Mug!!! LOVE the reference regarding the reference to the fish finder! Necessity is the mother of invention.
ONE HAND AHEAD AND ONE HAND BEHIND , YOU CAN HAVE YOURS JUST GIMME MINE!!! ZZ TOP
Being from the Lone Star state I guess you know all about having big firecrackers shaking the works so that they can see what is going on down stairs. If I was still working in the patch I am sure that I could do my own fibroscan. The only problem is with my oversized hunk of pork a quarter stick of dynamite and a string of geophones might not be adequate to do the job! ZZ Top is cool, but my shtick is more along the lines of the lyrics from Hot Rats (https://www.youtube.com/watch?v=p4pfWxjoc6w).
https://www.youtube.com/watch?v=hgAF8Vu8G0w (https://www.youtube.com/watch?v=hgAF8Vu8G0w) :D :D :D :D
My favourite composer RIP FRANK!!!
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Got that right Mugwump. ;D Haven't been able to blow anything up in a long while! LOL! Sure miss going out to My place in west Texas and blowing up some over sized cedars that need removal!
Frank was a veritable musical genius that was so multi-faceted it was unreal to say the least. Conductor , composer deluxe , prolific writer , musician extraordinaire , as well as a performer and a showman. His mind worked on so many levels that We might never know the true extent of His mind or works! He used many instruments so differently in ways that were not intended that it was amazing. Truly an underrated amazing human being!
BTW , Maybe I should have said Frank Zappa is the Mother Of Invention! 8)
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I heard Frank Zappa and the Mothers had the best place around ;)
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This is one post that I have needed more time to write.
Today has been the biggest roller coaster of emotion that I have had since placing a newborn daughter in my wife's arms. So it is with a sense of tempered joy that I write this.
In writing I find the need to stop and reflect to honour the memory of those who did not survive this disease. Those who I have known, the war veterans and the many thousands of others everywhere who were ill treated and lost all hope and did not survive to see these days. It is for them I write these words. Yes my infection may have been a self inflicted wound. But those who have true compassion know, that it matters not how anyone contracted this horrible disease: or any disease the spread of which is from human conflict of any form even personal. In this we cannot ascribe blame as only understanding can heal the person. Yes there are tears of survivors remorse as I write this.
The joy at finding that my liver has essentially rebuilt itself and that the fiber density has radically decreased: has left me in a state of disbelief, as it did the tech and then the specialist nurse who repeated the procedure to confirm what the tech had discovered. (I will not quote the numbers until after I see the specialist and confirm a current clear ultrasound result, but the fibroscan results are astounding)
For myself this means that now I have a responsibility to complete to the best of my abilities that which I have striven to do in my life. But here I do put on the brakes, the reality is that I have a very viable good liver: but the costs of the damage already done by cirrhosis and bad habits are high. It is likely that my heart is enlarged, my blood pressure is out of kilter and my blood vessels are most likely getting a little strained. This is not because of the Harvoni cure, it is because of the damage slowly advancing cirrhosis slowly did over the years and the fact that I am overweight: though thankfully not morbidly. As the wonderful nurse who help see me through treatment has advised: (don't consider yourself cured of cirrhosis the damage it has done is the higher risk factor). I hardily agree: if your liver quits you have only two choices, now I only have one, to take better care of my body than I did when I thought it didn't matter because I had lost hope of ever being free from this disease.
So as much as I write these words for those did not survive HCV I also write for those who are now infected. The sooner you are cured the better: because waiting until there is any level of liver damage to remove a major source of the cirrhosis is a mistake for a whole host of reasons. Not the least of which is that having a human replace large numbers of liver cells all in one go late in life is not a good idea unless it is absolutely necessary as it was for me. The sudden rebuilding of large portions of ones liver is without a doubt a strain.
I am almost certain that what I have experienced post treatment is essentially what I experienced as a child...excessive growing pains through excessive hunger brought on by the increased rate of the metabolic processes necessary for massive amounts of sudden liver cell creation.
Having HCV and the antibodies to HCV over time can become very costly to both the human body and spirit it is far better treated as early as possible.
Cheers and Tears and my best to all of you.
Eric
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Well put Mugsy!! :D Rest up a bit & go catch us a fish or two! It seems to Me the in the recent past that emotional stress is just as draining as physical exertion. Guess I am softening up in My old age. The sage wisdom of the learned old timer is passed to the younger generation when ever they chose to listen. I applaud Your words of acknowledgement to those who preceded us , as we shall always stand upon their shoulders as the next generation shall stand upon ours. Well put My friend , well put!
Slats
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BTW, I forgot to say CONGRATULATIONS! 8)
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This is fantastic news, Eric !!!
It's interesting what you say about late regeneration etc. in those last few paras.
I have that same (tiring) experience, I think - even though my liver damage was only moderate (F2+).
... Yes - Hep C affects metabolic [and therefore all bodily] processes, hugely.
I know you went through a lot of sh*t with Hep C, like I did / have.
I'm looking forward to the [confirmed] results!
Best wishes,
A.
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That is fantastic news Eric congrats!
I hope to see some improvement next spring if my doctor agrees to do a Fibroscan but I haven’t really seen any indications on my ultrasounds or platelet count to give me much optimism for my situation. But at least I hopefully have stopped getting any worse.
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Pulling for you Lynn, you're the rock on this forum! :)
My message is still that waiting to remove HCV from the equation was and is the worst way to treat this disease.
My "golden years" have been made considerably less bright by having measurable cirrhosis for even a short period of time. The specialist nurse (bless her) is still bugging me to have an endoscopy. And I am certain that there are few researchers who would dearly love to get a piece of my now seemingly healthy liver. But as I have said they can bloody well wait for the necropsy! Especially considering how greedy those set to gain the most from what Michael Sofia created have been with the pricing of their patented cure.
So to recap:
Infected most likely as a teenager in 1969 or 1970
MANY STRANGE HEALTH ISSUES UNTIL
1993 diagnosed with HCV
LAW DE DAW DE DAW slowly down the road to cirrhosis watching and hearing about many others die before a treatment became viable. Tried my very best to undertake a healthier "lifestyle" ( a buzz word that should be stricken from the record and not used in polite conversation especially whilst having port and cigars with friends in the field or in camp!)
2003-2004:
Confirmed F2-3 liver damage by biopsy. Failed interferon tx and was laid up for a year unable to work because of feeling the grim reaper eat away at what was left of my once healthy body. Considered for back surgery and was rejected by surgeon even though the indications were present. Using walking cane for most stairs and to stabilize my mobility.
Worked hard at recovering my strength, got healthy enough in 2005-6 to work a few days in a row without needing to use my cane. Managed to keep working only with the help of NSAIDS and steroid shots to my spine.
Worked as much as I could until end of 2012 when brain fog started to worsen and I needed to remove myself from driving for periods of time, when I felt that I was becoming too much of a danger on the road for lack of sleep and brain fog trying to keep working in constant back pain.
Began hearing about the miracle that might be in the works from a gifted chemist.Thought about seeing a specialist, but took a wait and see approach because my liver enzymes were not too far out of whack.
2014 enzymes went wonky and was offered treatment by same specialist and stellar clinic again, (two of the best around in Canada IMO) Had little choice as I was resigned at seeing only but a few more years: such was my condition at the time. Little to look forward to in life with HCV, disease caused depression and compromised mobility eating away at my liver and my spirit. Had stopped taking any NSAIDS and even Tylenol because of liver function deterioration.
Oct. 2014-March 2015 Successful Harvoni treatment. SVR tests were late due to shortage of test kits and only one lab to do the work. As was the case during tx, I had no 12 week test during treatment, almost crapped bricks until SVR was established. Been free from HCV viral RNA ever since.
So to make a short story long, DON'T wait long for treatment, doing so dam near killed me!
Eric
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Hi Eric long road for sure!
I didn’t see when you were diagnosed F4 cirrhosis must have missed that.
My best recollection of my timing on my first biopsy in about 1993 I had F1 fibrosis, second biopsy about 1998 F2. Five years later 2003 I was F3 and finally on my fourth biopsy January 2008 I was F4 aka cirrhosis.
I also treated with interferon based treatments first was maybe 1995 interferon mono therapy three shots of interferon a week no other med. later peg intron and ribavirin and later interferon ribavirin and a trial drug. All those were six months long and I was a null responder to all. No decrease in viral load.
Before my last treatment we did a Fibroscan Incase my insurance wanted something more recent than a seven year old diagnosis of cirrhosis. My Fibroscan was 27. About 30 months after I finished treatment my Fibroscan was 33 but as many have said you get better results when fasting I likely was not fasting for either test so if I do one next year I will bear that in mind.
As of this coming January I will have been diagnosed with cirrhosis for 11 years. When I first read about cirrhosis I learned I had about a 50% chance of still being alive in 10 years. So beating the odds I guess.
I guess I was fortunate with all my treatments I only took 2 weeks off on my first interferon ribavirin treatment because I became very anemic so my doctor added emoting to increase my HGB levels so once my levels were up I went back to work.
Yeah was always tired all those years but working on second shift helped allowing me to sleep in.
Still working haven’t given up just yet :)
“All my life I’ve been over the top I don’t know what I’m doing all I know is I’m not gonna stop!” Ozzy Osborne
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Diagnosed as cirrhotic June or so in 2014 Lynn, with ast and alt way up but not as far as many, can't remember off hand but the key one was up over 100 and the fibroscan, to correct my previous 26 was actually a 25kpg reading. And I had a bit more body fat for the scan to contend with but I was in no way morbidly obese so the 25 average over a sequence of at least 20 shots back in 2014 might have been a little inaccurate because of some slightly more dense fat in the liver structure. But not that far out in accuracy.
I am happy that they did not split hairs as to whether or not I was still only F3! Seeing people fail with 12 or 8 weeks of Harvoni because of the splitting of hairs to save money has been extremely depressing to say the least and is almost criminal IMO.
It may very well be that my liver had just taken the first big step into F4 and was on the verge of leaking and all the other problems that can suddenly occur.
Anyway you look at it both chronic and non chronic HCV infection are no longer conditions that can be ignored now that there are reasonable and safe cures readily available!
This is why treating early is so important. Fibroscan scores that decrease that drastically are wonderful but mean little if the liver is then continually abused in other ways. My liver is not that healthy, it is in a body that in itself is old and run down and no doubt is being shocked by the new efficiency of the organ as it rebuilds.
I doubt that my liver would be considered viable for transplant even if it was feasible.
Put it this way the fibroscan scores the tech, myself and the specialist nurse in charge all saw a sequence of scores that averaged down into in the single digits.
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Ok thanks I have read the longer you have been cirrhotic the longer the road back if it is even possible for someone like me. Guess I will see next spring.
Congrats on your improved numbers.
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Congratulations, Eric. Fascinating thread. Had to look up portal hypertension, how is it even diagnosed?
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For myself portal hypertension diagnosis was based on enlarged spleen seen on ultrasound and development of grade 3 esophageal varicies along with portal hypertensive gastropathy which were diagnosed with upper endoscopy.
There are actual tests but they are more invasive actually taking a reading of the portal vein.
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Congratulations, Eric. Fascinating thread. Had to look up portal hypertension, how is it even diagnosed?
Primarily ultrasounds that check in real time the movement and size of the blood vessels between the spleen and liver. Not 100% accurate but a good guide line to indicate issues starting up or not present. That is why the tech gives you hell if you wiggle too much when they do the deep scan work!
There are ongoing checks for portal hypertension, if there is indication of blood count irregularities in those with cirrhosis. The spleen is the place where blood is dispensed and stored and the vessels between the liver and spleen can come under too high a pressure if the system is out of whack too far. The major danger of cirrhosis is ongoing small GI bleed(s) and need to be carefully watched for with ultrasound readings and other procedures like endoscopy to catch it before vessels that are leaking bleed too heavily into the stomach. A sudden GI bleed is a major cause of death in those with cirrhosis and is better not to worry about happening if you have cirrhosis to say the least. ;) All we can do is take care to make sure all the other systems are not stressed any more than they already have been.
Fortunately my platelets are now in the low normal range and have been for a year or so. But my bilirubin is up very slightly and this might indicate a leak somewhere in the GI system. But it can also be caused in other ways.
This is why the nurse at the clinic is pushing for me to have endoscopy done to ascertain if I have any possible esophageal varices that might need further procedures or monitoring. I will be consulting and confirming all this on Nov 15. Endoscopy is a tricky procedure only done when absolutely necessary and most likely will take months to book here in Canada, can't just go demand service and wave dollars in the face of the hospital the way you can south of the border. ::)
Eric
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Yeah when I was first diagnosed with cirrhosis I had an endoscopy which showed grade 1 varicies. We repeated at two years and by then I had grade 2 so we decided to repeat in a year and then I had grade 3. I couldn't take a beta blocker so I underwent 4 banding sessions over 4 months to eridacatetje varicies. Then I had a followup at 6 months and one year post. Then annual follow up.
Last year my doctor decided we could stretch it out to two years since I haven’t had any reoccurance since 2012
Last platelet count was 110
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Well, one thing I have had for years now is GI bleeding, but I have had every kind of scope and scan imaginable, including ultra sound, and they have never found a source of the bleeding. I've never had a report of anything unusual going on with my spleen or liver, though. Organs check out, except for the F2 fibroscan result, which is mild fibrosis. I'll be seeing my hepatologist in mid-November, and we'll see what he has to say, now that my Hep C is "undetected". I hope I don't have to have any further follow-up blood tests in the future.
Vasculitis, which I do have, can also cause GI bleeding. There would not be a particular source, it would just be kind of diffuse, if that's the right word. Just minor bleeding all over the place. My stools are very dark, but not tarry. However, I can only take baby aspirin once a week. Blood thinners cause increased GI bleeding causing hemoglobin to go below the level where the body can produce hemoglobin on its own, and you land in hospital for a blood transfusion. Moreover, it is an incredibly weakened state to be in. The one time it happened to me, I could barely get up off the sofa. Sooooo dizzy. There was no way I could drive myself to the E.R., had to call an ambulance.
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Results are confirmed my liver scanned at 7.8 kilopascal down from 25 in 2014. These results prove that if caught in time the liver can recover from fibrosis that is reaching towards end stage liver disease. Recommendation is now for only annual ultrasounds, no more need for ongoing liver panel or blood count work. :) :)
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Results are confirmed my liver scanned at 7.8 kilopascal down from 25 in 2014. These results prove that if caught in time the liver can recover from fibrosis that is reaching towards end stage liver disease. Recommendation is now for only annual ultrasounds, no more need for ongoing liver panel or blood count work. :) :)
AWESOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
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Wow Congrats!!!
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Results are confirmed my liver scanned at 7.8 kilopascal down from 25 in 2014. These results prove that if caught in time the liver can recover from fibrosis that is reaching towards end stage liver disease. Recommendation is now for only annual ultrasounds, no more need for ongoing liver panel or blood count work. :) :)
Hi Eric,
Awesome news.. Just curious would the lower kilopascal reading mean you no longer are considered cirrhotic?
I thought a read when getting mine under 8.0 is considered F2?? I'm unsure if that was for something else.
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No, the thinking today is that, even though it is evident that the liver has developed significant new tissues the risks associated with cirrhosis are still present within the majority of the structure of the liver. The associated risks are certainly lower if the healing happened in time so that the level of fibrosis reduces significantly. But even though the amount of reduction in stiffness reading is striking, there is still deep tissue fibrosis.
Normal reading with absolutely no signs of fibrosis are much lower than 7.8 they are down below 7, so the problem with cirrhosis diagnosis is essentially where to draw the line. The thinking today is that there are any signs of fibrosis in the liver then it should be called cirrhosis.
The only way to confirm whether or not my liver has reduced to f1- f2 which is common with a reading of 7.8 is to have another biopsy. So instead I will just assume that my liver condition is marginally cirrhotic and live accordingly. I highly doubt that my liver has healed that much because in 2004 it was f2-f3 by biopsy.
Cheers
Eric
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I am hopefully having a fibroscan this year also at 4 years post treatment.
I know my pre treatment was 27 and my one year post treatment was 33 however no one said I should fast for the Fibroscan so we will see if there are any differences now and fasted. Should be seeing my liver doc in February.
Best to all
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Hey all,
It has been a while since I last posted anything. Just needed to chime in. Great news Mugwump and good to hear everyone still yacking away. Some of you may recall that I myself had a very dramatic drop in stiffness in just six months post. I have always feared that there had been a glitch or mistake in one of the scans since I was shown to drop from a 4 to a 1. I have not received a scan since. Too chicken I guess. So happy everyone is doing well and that Tommy is still cracking wise. Since EOT I have had odd complications...i.e. Thyroid, auto immune and lipid rises, weight gain and mood disorders. Still happy and blessed that my old bedfellow with the attitude is gone. After it is gone it is like awakening from a decades long dream. It has been about two years since last hep quant test. I will likely do it this week.
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Great to hear from you Beto and that you are hanging in there.
I had my four year post Fibroscan as I had planned to above. Unfortunately no real change in my score which was 29 compared with my pre treatment of 27 and my one year post of 33.
My ultrasound also showed an increase of fatty infiltrates as I have gained some weight as well so I guess I’m getting the beginnings of fatty liver which is not going to help my liver heal at all. I’m just above a BMI of 30 making me officially overweight so I need to somehow do something about that. Oh yeah my AST is up just a little above normal too as a consequence of the fatty liver.
Beto since you were considered F4 before treatment are you still having blood tests including AFP and abdominal ultrasound every six months to monitor for early signs of HCC? That is the recommended protocol for follow up per the AASLD for those who were F3 or F4 before treatment.
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Great to hear from you Beto! It is interesting and disturbing in some respects that you too have had non clinical responses to having your liver function improve radically over a short period of time. I predict that the first studies into this will shed some light on how the human immune system is effected by the growth of new liver tissue.
Lynn, the specialist here in Victoria has reduced the checks to annual as part of a regular GP visit. It is up to the GP to call for a liver panel and ultrasound. The studies done so far indicate that those of us who are no longer F4 have only a very moderately increased risk of other complications. Statistically we are not at higher risk than those who never were diagnosed as cirrhotic but the sample sections done on cohorts of those who were cured of HCV are very recent and ongoing studies like the one Chino is participating in will be more accurate.
The specialist recommended the same level of tests as those who are at F1-F2 liver status. I have a visit to my GP coming up in a few weeks so I will see if he thinks that a early CBC and ultrasound is a good idea just to be on the safe side.
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The AASLD (American Association for the Study of Liver Disease) the organization that releases the recommendations for treatment guidelines and also post treatment recommendations current post treatment recommendations are for those who were F2 it less can return to normal medical recommendations as if they were never infected. For those who were F3 or F4 before treatment although out risk of HCC is greatly reduced we still remain at a higher risk for HCC than the general population and they recommend we have AFP and ultrasounds done at regular intervals to monitor for early signs of HCC. This is also what they recommend for those who have had a decrease in fibrosis score to less than F3 as there is no way to quantify what such a patient’s risk going forward might be.
For me I still officially have cirrhosis and continue with the same Hepatologist visit and testing regimen I have been following for many years. Blood testing along with AFP and ultrasound every six months, upper endoscopy every 2 years, and a visit to the liver specialist once a year.
“Patients with cirrhosis who achieve SVR remain at risk for HCC. Thus, they should continue to undergo regular surveillance for HCC despite the lowered risk that results after viral eradication (Bruix, 2011). The risk of HCC among patients with advanced fibrosis prior to treatment but who have regression to minimal fibrosis after treatment is not known. In the absence of data to the contrary, such patients remain at some risk for HCC and should be monitored at regular intervals for HCC. Alpha-fetoprotein (AFP) alone is considered an inadequate screening test for HCC (Bruix, 2011).
Patients in whom SVR is achieved but who have another potential cause of liver disease (eg, excessive alcohol use, metabolic syndrome with or without proven fatty liver disease, or iron overload) remain at risk for fibrosis progression. It is recommended that such patients be educated about the risk of liver disease and monitored for liver disease progression with periodic physical examination, blood tests, and potentially, tests for liver fibrosis by a liver disease specialist.”
https://www.hcvguidelines.org/evaluate/monitoring
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Hello ;D
I am new here and not sure if I can ask some questions I have ?
In fact, I have been diagnosed HCV in early 2012, with F4 fibroscan and fibrotest.
I have been under the ABVI protocol in April 2012 for 3 months, and since, I am negative, will make 7 years in June. Fibrotest in June 2012 was F2, which was very surprising, but I have refused fibroscan since because when I had it in January 2012, the tech told me I had less than 2 years of life before me. It was a great shock, and I just can't get a fibroscan anymore, hard to explain. I was child A at the time.
Living in France, all exams are free for cirrhotic people, so I can have as many exams I want, but only have blood test every 6 months and ultrasounds.
Even thought the blood tests are perfect (platelets were only 130 before HCV treatment and are 230 now) the scan shows my liver has a part which is larger that normal livers.
My question is : does any of you who have been diagnostized cirrhotic have a liver which is enlarged in some part, even with normal blood test ?
By reading you to day, it gives me strength to may be ask for a fibroscan, to know if I am still cirrhotic or not. Can an cirrhotic have normal blood test results ?
Thank you so much to have taken time to read me.
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It very much seems that if caught in time cirrhosis over time can reduce drastically in state. Chino a member here is on a long term follow up study. Until the results of that study and other ones that are taking place are complete we will not know for certain what percentage of those who have been diagnosed with cirrhosis can have the condition either reduced or reversed. But all the evidence to date indicates that many of those cured of HCV in time can have very good outcomes and most importantly prevent HCV caused cirrhosis from reaching a decompensated state.
I too knew that I did not have more than a few more years of decent life before being cured in early 2015. I was just starting to show symptoms of cirrhosis with an enlarged liver and spleen. There were indications of the beginnings of portal hypertension and along with elevated bilirubin and the consequential beginnings of hepatic encephalopathy, including cirrhosis caused halitosis, dehydration, what we call "brain fog" from the toxic byproducts of dying liver cells.
This forum is excellent and keeps up on what is happening with accurate information so it is the best one on the net, if you are either on treatment or have been treated. Everyone here understands what we have gone through and there is no such thing as a silly or stupid question.
As far as knowing how long I might have lived had I not been treated? We cannot be certain but the strain that cirrhosis puts on the heart and all the other human organs usually causes death before the liver fails. Most of the people that I have know or heard of that have died from HCV did not die directly from cirrhosis or the liver but the consequences of having cirrhosis for a long period of time causes something else to be a final outcome. Even a simple case of the flu can be deadly for those with advanced cirrhosis caused by HCV.
Welcome to this forum!
Cheers
Eric
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Hello IOS and welcome,
I have all of my labs from 1998-2019.
Yes your labs can be in the normal range even with Cirrhosis.
Excluding Hep C, Alt and AST, my CBC w diff, (complete Blood Count) and Liver panel labs were always in range.
Ironically it wasn't until the exact month I stopped treatment in May 2016 that my Bilirubin went up from .09 to out of range at 1.5. My Platelets also dropped 60 points as well. However, Hep C, Alt and AST were now normal.
Based on that 20 year timeline, seems likely my lab changes had to do with the cure and new immune interactions, or Harvoni. That is the common thread and they all coincide with each other.
I highly recommend 6mo Ultra Sounds as F4 means your still at risk to develop further liver complications, even after curing the underlying cause.
Good luck and keep us updated!
Greg