That is great that you have already had some good major assessments done, and know the results. Good your fibroscan (which should state a kPa number that converts into an F0 to F4 score to measure firmness/thus fibrosis) also included an additonal steatosis component measurement. The 2 fibroscan measurements (the fatty liver and liver firmness measurements) are just really good approximations, and "backs-up" (is probably fairly accurate/good re-confirmation) that indeed "moderate" steatosis was seen on the U/S.
Likely they have or will be doing further blood tests which also help to further confirm fibrosis levels, and your state of health right now. Please feel free to share or post your results when they are available to you (if you want) and we will gladly try to help you sift through them as best we can. The labs you had done at "Immediate Care" (that you do not have copies of), is there any way you could get those "on-line", as you did the U/S and fibroscan reports? Good you are trying to recall those inital Liver Function Test (LFT) numbers and other blood results.
Tig is right, it may take a bit of time for the specialist to finish his assessments, and prep you for treatment, checking your Hep A/B status and ensuring immunity and such, so, it is possible the timing will work out quite fine, even if the "work insurance" has not kicked in.
Feeling panicked about it is fairly useless, being diligent and methodical in your approach will greatly speed you along to where you need to be.
First and foremost, keep performing and gathering all your necessary, prerequiste testing that needs to be done and completed.
Also first and foremost is protect your liver right now from all and ANY possible insult, do not do drugs or alcohol, do not ingest any toxins, avoid any herbal sups/remedies unless your doc says you can, avoid even seemingly mild over-the-counter medicines right now unless you are advised by the doc, give up the bad foods, get on a healthy diet and get on a good water drinking kick. It is important you be in as good as shape as possible, by doing what you can control, especially now when your liver is already under stress and disadvantaged. Try to control stess and get enough rest.
You will see in my sig line (and further in my bio) that I was an undiagnosed a GT3a for over 40++ years, with a fatty liver, cholesterols out of wack along with quite a few other bloods out of wack, my initial U/S also showing a fatty liver state, my fibroscans (although my particular machine does not have steatosis reading capabiity) had me in the high F3 range for fibrosis, which then rose to F4 before I could get treatment - yes I too (like you) was worried .... BUT ... just look at me now! - I am one of those success stories, with my HCV gone, my bloods and many of my abnormal states started to immediately resolve - I am in a VERY good health state now - incredible resolutions, and quite quickly too - F score way, way down to normal levels, and same for many of the weird Hep C things I had been going through. I would say, yes indeed, you can live a normal life after being cured of Hep C, youth is in your favour, perhaps not having Hep C for all that long - the liver does have amazing ability to regenerate, recoup/repair damages done.
Do everything you can to baby your liver now, while you are waiting for treatment.
Keep putting one foot in front of the other in an orderly direction (just like you are doing) and with your doc's guidance you will soon be ridding yourself of this virus. We will be happy to help in any way we can.
When is the next appointment with the hep specialist? If you happen to possess any Hep A/B immunizations records of your own, take copies with you. C.
-- Edited by Canuck on Saturday 24th of February 2018 06:48:30 AM
-- Edited by Canuck on Sunday 25th of February 2018 02:32:44 AM
Tig said
Feb 23, 2018
Hi Jessica,
Welcome to the forum. I'm glad you found us and I think we'll be able to relieve some of your fears. I'll try anyway!
It does sound like your son has a more advanced case of liver disease, considering the steatosis and scarring that have been diagnosed. That is certainly cause for concern, but don't go sell the farm or anything, because what he's experiencing is common in HCV patients. The viral load level used to be considered an obstacle for treatment back several years ago, but that's not the case any longer. The only time the viral load quantity matters now is if it is below 6 million. In that case, treatment can be reduced to an 8 week period with some drug protocols. I'm from the school that more is better... The typical treatment now is for 12 weeks and it doesn't matter how high the viral quantity is, the treatment effectiveness isn't impacted. Don't worry about that. These new treatments are very effective and are simple to complete.
The steatosis or commonly called "fatty liver" is often related to HCV. Many times the genotype an individual is infected with can result in higher rates of steatosis. Genotype 3 is well known for causing increased steatosis. Successful treatment of HCV often sets the stage for a reduction in all of that. Until the virus is stopped, the fibrosis (scarring) and steatosis will continue to worsen.
Insurance has always been a thorn in our shoe. The cost of these drugs is astronomical, so you either figure out a way to get insurance on board, or entertain ways of obtaining generic medications and treatment from overseas providers. Unless you're wealthy, most can't afford to do this out of pocket. There are also organizations that help with payment assistance if you're turned down by insurance. It's a process of apply and denial in many cases, but insurance has been coming around pretty well lately. The denials typically come when people have low fibrosis scores. Fortunately insurance has realized it's better to stop it early. I call it their "Duh" moment... There are a lot of factors that are brought into play now and certainly your son seems to meet the criteria that warrants treatment sooner than later. Waiting 60 days for total coverage shouldn't be something you need to worry about. It could take that long just to get into a specialist! He can get all of the preliminary diagnostic work completed ahead of time and when his new insurance kicks in, he'd be ready to go. He should get his Hep A and B vaccinations ahead of any treatment, be sure to ask. That's something he can get done now. He should stop any and all use of alcohol if he uses it. That's the worst thing he could do now. It will cause rapid acceleration of these problems. Diet is important, as is good daily hydration. Keep the water flowing!
It helps to know his genotype and the actual amount of scarring (fibrosis stage F0 - F4) and level of steatosis. The liver profile with his AST/ALT and his CBC are helpful. When you get those results back let us know. A person can live quite easily with advanced liver disease, we do it all the time. You'd be amazed at how tough a sick liver is. Many of us are living with cirrhosis, which is about as advanced as the scarring can get and still live a normal life. There are varying degrees of it and it can get so severe that transplants, or other advanced procedures come into play. The thing to remember is, it's slowly progressing. That doesn't mean you can ignore the causative factor and allow it to progress. We all had to cure the virus first. The liver doesn't always regenerate following successful treatment, but we often see significant improvements across the board. Stopping the virus very often stops the progression of these issues and allows for recovery. Hep C attacks so many parts of our lives and health, it's not just the liver that it harms. We call them "extrahepatic manifestations". There are many and we can discuss them as we move forward. We have a lot of information here on the forum and I'll be glad to direct you to it.
I look forward to helping you both and encourage your son to get involved here. Everyone is welcome!
jcorum said
Feb 23, 2018
My son has been extremely fatigued for about 6 months. Went to Immediate care & his liver enzymes were high. Sent him to Infectious Disease doctor (he is 34) and they diagnosed Hep C. I lost the paper where I wrote down his numbers when we went to the specialist but his viral load was several million. Doc said that meant he had lots of hep c in his blood. His ALT was like 469. I just remember those two things. Oh and they said his clotting factor was fine. He had ultrasound & fibroscan yesterday. He read the results on line on his chart & ultrasound says
"moderate fatty changes of liver and no tumors or lesions"
Fibroscan says
"moderate scarring of liver and severe steatosis"
I have spent hours upon hours in the last two weeks reading about Hep C. Doctor told him to make an appt to come in & discuss.
Moderate scarring of liver and severe steatosis is not what we wanted to hear obviously. Would the severe steatosis be due to the hep c? He doesn't eat healthy at all. So I don't know if that has caused the steatosis because I know that is fatty liver & a lot of people have that without hep c. He isn't obese but carries more than he should, especially in his abdomen. He is a meat eater, very few veggies, no fruits. Likes sugar. I know he will need to take better care of his liver now, during treatment, after treatment & eat healthier.
He currently has obamacare and his work insurance doesn't kick in for another 60 days. Specialist told us on our one visit that Obamacare will pay the doctor visits, tests etc but not the treatment unless its very bad. I am wondering if what these tests shows is considered "very bad". Otherwise, he will have to wait the remaining 60 days for his work insurance to kick in to start treatment.
We don't know what genotype it is. I imagine we'll get that info when we go for our next visit to the specialist but I have read that hep c with a high viral count is harder to treat. Even if whatever treatment they give him "cures" it, I am of course still worried about the severe steatosis & moderate scarring of liver". how will that affect his quality of life? How does he live the next 50 years with moderate scarring of liver? How does that affect his health? Do you feel sick from that all the time? And of course, the liver cancer possibility.
I have been reading lots of posts on here & you are a bunch of very knowledgeable people with lots of encouragement. I am going to have my son create a profile & get on here as well.
Right now, I guess I am just looking for encouragement that is the hep c is cured , my son can lead a normal or somewhat normal life.
Hi Jessica and Son,
Welcome here from me too.
This is a good place to come for info.
That is great that you have already had some good major assessments done, and know the results. Good your fibroscan (which should state a kPa number that converts into an F0 to F4 score to measure firmness/thus fibrosis) also included an additonal steatosis component measurement. The 2 fibroscan measurements (the fatty liver and liver firmness measurements) are just really good approximations, and "backs-up" (is probably fairly accurate/good re-confirmation) that indeed "moderate" steatosis was seen on the U/S.
Likely they have or will be doing further blood tests which also help to further confirm fibrosis levels, and your state of health right now. Please feel free to share or post your results when they are available to you (if you want) and we will gladly try to help you sift through them as best we can. The labs you had done at "Immediate Care" (that you do not have copies of), is there any way you could get those "on-line", as you did the U/S and fibroscan reports? Good you are trying to recall those inital Liver Function Test (LFT) numbers and other blood results.
Tig is right, it may take a bit of time for the specialist to finish his assessments, and prep you for treatment, checking your Hep A/B status and ensuring immunity and such, so, it is possible the timing will work out quite fine, even if the "work insurance" has not kicked in.
Feeling panicked about it is fairly useless, being diligent and methodical in your approach will greatly speed you along to where you need to be.
First and foremost, keep performing and gathering all your necessary, prerequiste testing that needs to be done and completed.
Also first and foremost is protect your liver right now from all and ANY possible insult, do not do drugs or alcohol, do not ingest any toxins, avoid any herbal sups/remedies unless your doc says you can, avoid even seemingly mild over-the-counter medicines right now unless you are advised by the doc, give up the bad foods, get on a healthy diet and get on a good water drinking kick. It is important you be in as good as shape as possible, by doing what you can control, especially now when your liver is already under stress and disadvantaged. Try to control stess and get enough rest.
You will see in my sig line (and further in my bio) that I was an undiagnosed a GT3a for over 40++ years, with a fatty liver, cholesterols out of wack along with quite a few other bloods out of wack, my initial U/S also showing a fatty liver state, my fibroscans (although my particular machine does not have steatosis reading capabiity) had me in the high F3 range for fibrosis, which then rose to F4 before I could get treatment - yes I too (like you) was worried .... BUT ... just look at me now! - I am one of those success stories, with my HCV gone, my bloods and many of my abnormal states started to immediately resolve - I am in a VERY good health state now - incredible resolutions, and quite quickly too - F score way, way down to normal levels, and same for many of the weird Hep C things I had been going through. I would say, yes indeed, you can live a normal life after being cured of Hep C, youth is in your favour, perhaps not having Hep C for all that long - the liver does have amazing ability to regenerate, recoup/repair damages done.
Do everything you can to baby your liver now, while you are waiting for treatment.
Keep putting one foot in front of the other in an orderly direction (just like you are doing) and with your doc's guidance you will soon be ridding yourself of this virus. We will be happy to help in any way we can.
When is the next appointment with the hep specialist? If you happen to possess any Hep A/B immunizations records of your own, take copies with you. C.
-- Edited by Canuck on Saturday 24th of February 2018 06:48:30 AM
-- Edited by Canuck on Sunday 25th of February 2018 02:32:44 AM
Hi Jessica,
Welcome to the forum. I'm glad you found us and I think we'll be able to relieve some of your fears. I'll try anyway!
It does sound like your son has a more advanced case of liver disease, considering the steatosis and scarring that have been diagnosed. That is certainly cause for concern, but don't go sell the farm or anything, because what he's experiencing is common in HCV patients. The viral load level used to be considered an obstacle for treatment back several years ago, but that's not the case any longer. The only time the viral load quantity matters now is if it is below 6 million. In that case, treatment can be reduced to an 8 week period with some drug protocols. I'm from the school that more is better... The typical treatment now is for 12 weeks and it doesn't matter how high the viral quantity is, the treatment effectiveness isn't impacted. Don't worry about that. These new treatments are very effective and are simple to complete.
The steatosis or commonly called "fatty liver" is often related to HCV. Many times the genotype an individual is infected with can result in higher rates of steatosis. Genotype 3 is well known for causing increased steatosis. Successful treatment of HCV often sets the stage for a reduction in all of that. Until the virus is stopped, the fibrosis (scarring) and steatosis will continue to worsen.
Insurance has always been a thorn in our shoe. The cost of these drugs is astronomical, so you either figure out a way to get insurance on board, or entertain ways of obtaining generic medications and treatment from overseas providers. Unless you're wealthy, most can't afford to do this out of pocket. There are also organizations that help with payment assistance if you're turned down by insurance. It's a process of apply and denial in many cases, but insurance has been coming around pretty well lately. The denials typically come when people have low fibrosis scores. Fortunately insurance has realized it's better to stop it early. I call it their "Duh" moment... There are a lot of factors that are brought into play now and certainly your son seems to meet the criteria that warrants treatment sooner than later. Waiting 60 days for total coverage shouldn't be something you need to worry about. It could take that long just to get into a specialist! He can get all of the preliminary diagnostic work completed ahead of time and when his new insurance kicks in, he'd be ready to go. He should get his Hep A and B vaccinations ahead of any treatment, be sure to ask. That's something he can get done now. He should stop any and all use of alcohol if he uses it. That's the worst thing he could do now. It will cause rapid acceleration of these problems. Diet is important, as is good daily hydration. Keep the water flowing!
It helps to know his genotype and the actual amount of scarring (fibrosis stage F0 - F4) and level of steatosis. The liver profile with his AST/ALT and his CBC are helpful. When you get those results back let us know. A person can live quite easily with advanced liver disease, we do it all the time. You'd be amazed at how tough a sick liver is. Many of us are living with cirrhosis, which is about as advanced as the scarring can get and still live a normal life. There are varying degrees of it and it can get so severe that transplants, or other advanced procedures come into play. The thing to remember is, it's slowly progressing. That doesn't mean you can ignore the causative factor and allow it to progress. We all had to cure the virus first. The liver doesn't always regenerate following successful treatment, but we often see significant improvements across the board. Stopping the virus very often stops the progression of these issues and allows for recovery. Hep C attacks so many parts of our lives and health, it's not just the liver that it harms. We call them "extrahepatic manifestations". There are many and we can discuss them as we move forward. We have a lot of information here on the forum and I'll be glad to direct you to it.
I look forward to helping you both and encourage your son to get involved here. Everyone is welcome!
My son has been extremely fatigued for about 6 months. Went to Immediate care & his liver enzymes were high. Sent him to Infectious Disease doctor (he is 34) and they diagnosed Hep C. I lost the paper where I wrote down his numbers when we went to the specialist but his viral load was several million. Doc said that meant he had lots of hep c in his blood. His ALT was like 469. I just remember those two things. Oh and they said his clotting factor was fine. He had ultrasound & fibroscan yesterday. He read the results on line on his chart & ultrasound says
"moderate fatty changes of liver and no tumors or lesions"
Fibroscan says
"moderate scarring of liver and severe steatosis"
I have spent hours upon hours in the last two weeks reading about Hep C. Doctor told him to make an appt to come in & discuss.
Moderate scarring of liver and severe steatosis is not what we wanted to hear obviously. Would the severe steatosis be due to the hep c? He doesn't eat healthy at all. So I don't know if that has caused the steatosis because I know that is fatty liver & a lot of people have that without hep c. He isn't obese but carries more than he should, especially in his abdomen. He is a meat eater, very few veggies, no fruits. Likes sugar. I know he will need to take better care of his liver now, during treatment, after treatment & eat healthier.
He currently has obamacare and his work insurance doesn't kick in for another 60 days. Specialist told us on our one visit that Obamacare will pay the doctor visits, tests etc but not the treatment unless its very bad. I am wondering if what these tests shows is considered "very bad". Otherwise, he will have to wait the remaining 60 days for his work insurance to kick in to start treatment.
We don't know what genotype it is. I imagine we'll get that info when we go for our next visit to the specialist but I have read that hep c with a high viral count is harder to treat. Even if whatever treatment they give him "cures" it, I am of course still worried about the severe steatosis & moderate scarring of liver". how will that affect his quality of life? How does he live the next 50 years with moderate scarring of liver? How does that affect his health? Do you feel sick from that all the time? And of course, the liver cancer possibility.
I have been reading lots of posts on here & you are a bunch of very knowledgeable people with lots of encouragement. I am going to have my son create a profile & get on here as well.
Right now, I guess I am just looking for encouragement that is the hep c is cured , my son can lead a normal or somewhat normal life.